This topic contains 242 replies, has 22 voices, and was last updated by  Tony Buxton 3 months ago.

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  • #11116
     Charlene Marshall 
    Keymaster

    Hi Everyone,

    With only two widely known anti-fibrotic medications available to treat Pulmonary Fibrosis, a question that often remains on the minds of patients is why their Doctor chose to prescribe one over the other. For those of you using this forum who are actively taking Esbriet, I’d love to hear from you! Please share your answers to the following:

    • How long after your diagnosis of PF/IPF did you start taking Esbriet?
    • When you started Esbriet, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe?
    • When being prescribed Esbriet did you ask or did your Doctor offer why they chose this drug over Ofev?
    • How long have you been on Esbriet?
    • Can you outline some side effects you have experienced as a result of being on Esbriet?
    • Do you have PF (with a known/suspected reason for the disease development) or IPF?

    Thank you for sharing your experiences with Esbriet. In many social media platforms for PF/IPF, a lot of discussion is generated about the use of Esbriet, including inquiries about side effects, costs and why this medication over Ofev. This forum is an excellent tool to continue those discussions, and I hope you’ll join us!

    Sincerely,
    Charlene

  • #12311
     Bill Hunt 
    Participant

    I am being coerced into taking Esbriet so I have been reading all your posts from others. Not sure if I want to take it at this time. I am newly diagnosed so this is all new to me.  I have given up and accepted getting a “simply go mini concentrator”.  I know that will help me to exercise more without getting light headed. I am starting pulmonary rehab next week.  Fortunately, I am feeling well for a man of 85 except when exerting myself.  I have enjoyed reading your news letters and have learned so much.  Keep them coming.

    • #12332
       Charlene Marshall 
      Keymaster

      Hi Bill,

      Sorry to hear of your experience with being coerced into taking Esbriet, I think you’ve done the right thing and spent some time reading / investigating into this drug and whether or not it is right for you! Sometimes it is easy for doctors to advocate and push us into doing what they think is right, or what is the “best” protocol for our illness, but we have to feel comfortable with it. Kudos to you for looking into everything first!

      I wouldn’t view your obtaining an oxygen concentrator as giving up Bill, I think (as difficult as it is) it is a wise choice, and one that shows you’re taking care of your needs. Accepting oxygen less than 6 months after my diagnosis, and at age 28, was terrible but I am glad that I did it. It helped me feel better physically, reducing symptoms that came with being under-oxygenated, and it also made me feel better mentally, knowing that I had oxygen available to me if I needed it.

      Goodluck with pulmonary rehab- please let us know how it goes! This was something that was very helpful for me, so I hope it is for you as well. I am also very glad to hear that these forums have been helpful for you, please feel free to connect anytime and goodluck with the decision on whether or not to start Esbriet.

      Sending you nothing but the best Bill.

      Warm regards,
      Charlene.

    • #13858
       Dianne 
      Participant

      Hi, I started Esbriet one month ago.  I had my first blood draw to check my liver.  I am having a lot of stomach acid and I don’t know if it the med or acid reflux.  I am currently scheduled to have endoscopy to check for GERD. The other symptoms are fatigue and burning of skin if exposed for more than 15 minutes.

      I was diagnosed with IPF in December 2017.  Pulmonologist at Brigham’s & Women’s, Boston prescribed it.  Not sure what my liver will show?  I had used my prescription drug plan plus applied to Genetech foundation.  I really don’t know how they track if this medicine really does slow the progression or your own lungs slowed the progression?

      • #13863
         Charlene Marshall 
        Keymaster

        Hi Dianne,

        Thanks for getting in touch with us and sharing a bit about your experience since started Esbriet one month ago. Those sound like awful side effects, and I am so sorry you are experiencing them! Did you ever have troubles with acid reflux before your IPF diagnosis or before starting Esbriet? I know sometimes acid reflux can go undiagnosed, and unfortunately be linked to IPF. Although I hope it isn’t GERD, it would be nice for you to have some answers I suppose and be able to address the unpleasant side effects you’re having. I’ll keep my fingers crossed for you!

        Broadly speaking, Esbriet is an anti-fibrotic drug used to slow the progression of IPF and for some folks it works and others it doesn’t really make much of a difference unfortunately. I have heard that others have stopped it because it wasn’t doing much for them, and they didn’t want to deal with the side effects. It is good that your doctor is being proactive though in checking your liver, as this can be a real problem for people on this medication. I hope it doesn’t show anything!

        Please let us know how you make out, and know that there are lots of people who can help by sharing their own experiences with you. Take good care,
        Charlene.

  • #12342
     Barbara Davidson 
    Participant

    Hi I am Barbara and live in ynorzh Central Tx.  I was told I had COPD 3 years ago and wS sent by my Pulmanologist here to Baylor Hospital in Texas to see a  Pulmanary Specialist. That was about a year ago and found out my diagnosis. Went again last week and will be starting Esbreit as soon as funding comes through for me to pay for it. I have noticed in pictures that not many are on oxygen? I have been obn it 24/7 for 3 years now. I also had to retire which I thought I would love but rather be working just no energy and fatigue is so much worse now. I am 68 and can’t wait to start meds and Pulmanary rehab. So ready to feel better and make slot of friends through these support groups

  • #12345
     Charlene Marshall 
    Keymaster

    Hi Barbara,

    Welcome to the PF forums — I’m glad you’ve found us!

    So sorry to hear of your diagnosis one year ago, I remember this well (still!) as I have just passed my two year diagnosis mark. I am not on Esbriet, but OFEV and so far it has been helpful for me. Goodluck with starting Esbriet! Definitely have a read through this thread on the forum, as lots of wonderful people have commented here with how starting Esbriet went for them. Surely, you’ll find some good tips to help make the transition onto this anti-fibrotic medication a bit easier for you 🙂

    Some of us use oxygen and just don’t have it in our profile pictures. Some are on it only with exertion, and some are on it 24/7. When do you start pulmonary rehabilitation? This really helped me, so I do hope it helps you as well. Is it through Baylor?

    The lack of energy and fatigue is very frustrating, I agree. How is your sleeping, do you find it difficult to get a good night’s rest? I do and this certainly contributes to my fatigue, even more than the disease itself but some folks on here also gave me some tips to help with my sleeping.

    I look forward to getting to know you a bit more through these forums as well. You’re most welcome here, and please feel free to reach out any time!

    Warm regards,
    Charlene.

  • #12347
     Joyce Douglas 
    Participant

    Hi Charlene.  This post is in response to your question as to how I found out about the Inspiration Program from Ottawa.

    My Dr. (B. Bookatz) in Brandon MB, registered me to begin the medication – Esbriet starting in June of 2017.  Just shortly after I got back home from the initial hospital stay where and when I was diagnosed with IPF on May 6th, 2017, I received a phone call from one of the Nurses in charge of the Inspiration Program out of Ottawa. I have spoken to several nurses over the year.  However, at first I received a call from the nurse, about three times a week after receiving the initial package of Esbriet. They wanted to be certain I knew of the proper way to take the meds.  Also, they wanted to know of ‘any’ side effects that I was experiencing and how I was treating them.  I had some of the usual initial ones, which did eventually go away – headache, stomach ache, stiffness in joints and muscles, etc.  None of my side effects were bad enough to cause me to want to stop the meds.  The phone # of the Inspiration Program is: 905-444-4444. This put me in touch with the current Nurse in charge and she/he was able to answer my questions, provide information as to if this was normal, etc.  They were extremely caring and supportive and told me to phone at any time of night or day and they would speak with me.  I do not know if others receiving this Esbriet medication were on the Program or not. I had some questions about stopping my ‘Homeopathic Medications’ and my other Over the Country medications.  We did decide that I should stop them in order to give the Esbriet the best chance of working it’s best on my lungs and fibrosis.

     

    • #12351
       Charlene Marshall 
      Keymaster

      Wow, thank you so much for sharing Joyce. I am so happy to hear that this was such a positive experience for you! I am also really curious to hear from others in Canada who may have had this experience; it is the first time I’ve heard of anything like it, although I am pleased as it has the potential to make such a difference to patients…

      I’m going to spend some time looking into it, and reading more so that I can feel educated and share with others who may qualify for the Inspiration Program.

      Thinking of you today as you reach your 1 year diagnosis date today. Did you do anything for you today? I spend a lot of time reflecting on my diagnosis anniversaries, but I know for some people they are too significant. Curious to hear how you felt today, only if you feel like sharing. If you don’t, that is totally understandable too.

      I hope the weather in MB is starting to become as nice as it is in Ontario!

      Take care,
      Charlene.

  • #13694
     Michael Lamkin 
    Participant

    I just started week 3 of taking Esbriet and in addition to some of the symptoms I’ve noticed besides those I’ve already seen mentioned is some increased shortness of breath and my cough seems to have much less production than before. Just wondering if anyone else have had similar experiences or are they possibly just the progression of the IPF? I really appreciate these forums and find them very interesting and informative!

  • #13699
     Charlene Marshall 
    Keymaster

    Hi Michael,

    Thanks for getting in touch and sharing a bit about your experience of starting Esbriet. This is always a popular topic, and one of interest to those of us taking the anti-fibrotic medications. Do you find your shortness of breath is worsening since starting the Esbriet? Hopefully not, and although I can’t speak to this experience since I am on OFEV vs. Esbriet, but I don’t think an increase in shortness of breath is ideal unfortunately. Also, I know a dry cough can be more irritating and frustrating than a productive cough, as it doesn’t feel like there is any relief. Hopefully someone on Esbriet can help provide you a bit more insight!

    Has anyone experienced these side effects as a result of starting Esbriet? We’d love to hear from you!

    Take good care,
    Charlene.

  • #13729
     Michael Lamkin 
    Participant

    Hi Charlene

    I received a call from my pharmacist yesterday to check on how I was tolerating the Esbriet. I mentioned the dryer cough and increase in my shortness of breath. She said that since Esbriet only works on the cellular level it would not effect my breathing or cough. Since we’re in the middle of our “monsoon” season here in Arizona (much more humidity than usual) she felt that the humidity was most likely the cause of the things I mentioned. Anyway, I’ll soon be getting the pill which is taken as a single dose 3 times a day instead of the 3 pills 3 times a day.

    I hope all is well with you and really appreciate your responses to my posts.

    Michael

    • #13732
       Charlene Marshall 
      Keymaster

      Hi Michael,

      Great to hear from you, thanks for your reply and giving us an update!

      Oh, that is really interesting to hear from your Pharmacist re: the symptoms being more related to weather than the medication. I suppose overall that is a good thing, since the weather is bound to change (and hopefully improve your symptoms) although sorry you’re experiencing them at all. Hopefully they subside soon for you!

      Any other symptoms that have arisen as a result of the Esbriet? Sounds like you’re otherwise tolerating it pretty well which is great. I’ll keep my fingers crossed that the single dose pills go well for you.

      Thanks again for writing and take care!
      Charlene.

  • #13737
     Raymond C. King 
    Participant

    Hi Charlene,

    I still haven’t got my insurance acceptance for the Esbriet yet, but I went to my Pulmonologist July 18 and after more tests and an X-ray of my lungs said the severity of my IPF hasn’t changed since my last X-rays in April. He apologized for my not getting the Esbriet okayed yet but said his nurse has been working hard on what is needed to get the OK. His nurse said she has sent in the documentation they said they needed on 2 different occasions and they keep telling her they didn’t receive it. She said she didn’t know how else to get it to them the required information. She said she sent it by Fax one time and after they said they didn’t get it, she mailed it to them. She said she would call them again and see how else she should send it and let me know. I guess I’ll just have to wait longer to get the results and Rx. The doctor was hopeful I could start on it, so he could see if I tolerated it OK, so he made another appointment for September hoping I would have received it and could evaluate it for any side effects to continue by then. We still don’t know what form it comes in for me to grind it up or extract the liquid from the capsule, so I can take it by my J-tube. Does anyone know if it is in a solid tablet or a powder or liquid in a capsule?

    Thanks,
    Ray

    • #13741
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you, and I hope you are doing well! Thanks for writing, I think I dropped the ball on getting back to you in our previous correspondence, sorry about that. So glad you got back in touch with us 🙂

      I’m really glad to hear that the tests you recently had didn’t reveal any disease progression since your scans in April, that is good news. I’m also glad to hear the nurse has been working on what you need to get approved for Esbriet. It boggles my mind sometimes about how long these things can take, and how frustrating it can be to deal with insurance/pharma companies! I am dealing with our insurance company still from the accident in the US last December, and it is unbelievable some of the things they are doing to deliberately delay in the process. All I know, is that I could never work in insurance… I wouldn’t have the heart to do it! I hope things resolve for you soon and that you do  get the approval to go on it by your September appointment. I’ll keep my fingers crossed for you 🙂

      I think the Esbriet is in a pill form, from what I’ve heard from others although I can’t confirm that cause I am not on it. Keep us posted!

      Take care,
      Charlene.

  • #13756
     Claudia Sundberg 
    Participant

    Hi, I am Claudia and I was diagnosed with IPF in May of this year after having an unexplained cough for 6 months.I had every blood test you can have to rule out a cause. A VATS lung biopsy showed UIP. My pulmonologist only suggested Esbriet and I started that in June. I am now in my 8th week and have only a few side effects on it-some stomach isssues and fatigue. Right now my case is mild. I am not on O2 and have not done any pulmonary rehab. I am part of Genutech’s Inspiration program and they have sent me some helpful tools like a tracking journal and pill container. I find I get more help and assistance from the specialty pharmacy pharmacist than I do from the nurses at Genutech. I have not heard from my doctor since starting the medication and don’t go back until the end of September. I really appreciate this forum for information and seeing what helps other people. Thank you Charlene.

    • #13776
       Charlene Marshall 
      Keymaster

      Hi Claudia,

      Thanks for getting in touch with us and welcome to the PF forums. So sorry to hear of your diagnosis, and the prolonged, constant cough. I think that is one of the most frustrating things of this disease! I do hope it has subsided a bit for you now (although I know it may not have..) ?

      I am glad to hear you started on Esbriet so quickly, and seem to be tolerating it well. This is important, and glad it was an option for you. What was your experience with the lung biopsy? This is always a popular topic among folks on the forums because some doctors do them and others don’t, and some patients, understandably, are quite against the lung biopsy. I didn’t have one for my own diagnosis so I often can share any experiences with them.

      So glad your experience with the specialty pharmacy has been positive as well, that is great news. I know others on this forum will appreciate hearing that information!

      I hope you continue to do well Claudia, and that your disease remains as mild for a long time. I look forward to getting to know you a bit more on the forums, and so glad to hear you find them helpful. Please feel free to write anytime, you’re among friends here who truly “get it”.

      Kindest regards,
      Charlene.

  • #13758
     Michael Lamkin 
    Participant

    Hi Charlene and Ray

    The Esbriet I take is a capsule in powder form and can be opened if necessary (unless the doctor says otherwise) which I’ve been taking as 3 257 mg pills 3 times a day. I’ll be starting the 771 mg pills (1 pill 3 times a day) as soon as I receive them. I don’t know what form the higher dose comes in but if no one else responds I’ll let you know when I receive them. It’s also possible it comes in different forms.

    Thanks Charlene for responding to my post and so far no additional symptoms!

    Michael

    • #13777
       Charlene Marshall 
      Keymaster

      Thanks so much for this thoughtful reply Michael! I am sure this information is helpful to Ray, especially since I don’t have any experience with Esbriet. Since the lower dosage is in a powder form Ray, will this be easier for you to get the medication into your system?

      If you wouldn’t mind Michael, please do let us know what form the higher dose comes in, I am curious to know! I’ll also keep it in the back of my mind for others who might ask in future.

      So glad to hear the side effects remain at bay, and manageable. I’ll keep my fingers crossed for you that it remains this way with the higher dose. Thanks again for sharing this information 🙂

      Warm regards,
      Charlene.

  • #13759
     Michael Morale 
    Keymaster

    Hi Claudia, thank you for your comments about the forum. We’re glad that you find it helpful and we hope that you continue monitoring the forum. Please feel free to ask questions and we will do everything we can to answer any questions that you may have. Have a wonderful day.

  • #13760
     Michael Morale 
    Keymaster

    I’m glad that you haven’t had any additional symptoms Michael. Charlene is a great source of information and I’m glad that you’re part of this forum. Please let us know if we can be of any further assistance to you.

    • #13778
       Charlene Marshall 
      Keymaster

      Thanks Michael!
      I’m so glad to be part of this online community, it is filled with some really great people 🙂

      Have a great weekend!
      Charlene.

  • #13766
     Raymond C. King 
    Participant

    Hi Charlene,

    Don’t be sorry about not getting back to me earlier. You seem to be so busy with this forum and other things, I don’t see where you find all the time.

    I just received a 2nd call today from the Dr’s nurse and she said she talked to them about their insurance denial. She said they told her the person she needed to talk to about denial decisions would not be back until next week, so she could talk to them then.

    She also said she had talked to the Specialty Drug Department and Esbriet. Esbriet is going to send me a 30-day supply strip of it.

    She said she had re-contacted my insurance company about the denial and they had said I was below one of Esbriet’s minimum reading that was required for me to get the RX. She talked to Esbriet and they told her that the out of requirement minimum reading was not an actual needed requirement. I guess if it was only one reading that was out, that they are waiting for you to be on your death bed before you could get a drug that would have prolonged the progress of IPF. Anyway, maybe I can get the full RX okayed next week. Meanwhile, in a few days I should be able to try it and see if I can tolerate it.
    I guess you know all about how hard it is to go through an insurance company with your battle over your NY auto accident. I think the law provides for extra time for you to get so old, disgusted and broke that you will settle for anything they offer for settlement. I hope they settle with you soon in a good way. It always seems that if you get a good settlement, your attorney will take the majority of it.
    I think that Claudia Sundberg and Michael Lamkin’s responses have pretty well answered my other earlier questions about IPF and Esbriet.

    Thanks, as always for responding to my concerns and questions. I really look forward to your posts and interesting information. You seem to have a lot of helpful information for everyone.

    Ray

    • #13779
       Charlene Marshall 
      Keymaster

      Hi Ray,

      It’s super great to hear from you – thanks for getting back to me so quickly! Well, as of recently, I have the time because I have not been sleeping…. hahah. All kidding aside, sleep has seemed to elude me lately which is incredibly frustrating as everything feels worse when I’m tired. On the plus side, I suppose? I’ve been able to spend a lot of time on the forums, and just dabbling in different projects around the house. Thankfully, I think my sleep is coming back now though …. anyways, I digress…

      I’m glad to hear that at least the Dr’s nurse was pointed in the right direction, meaning she will hopefully be able to get in touch with the person responsible for denials. Summer holidays are important for folks, but they really slow up the process of things, don’t they? I’ll keep my fingers crossed that she is able to connect with that person and hope that the conversation goes really well.

      That is good news that they can send you the strip of Esbriet — is this only a one-time thing? They wouldn’t be able to do this more regularly for you, until the insurance piece is sorted out? This may be dumb question, and unheard of in the US, I just don’t know how drug companies in America works at all being Canadian.

      Yes, unfortunately I am familiar with all of the “red tape” that can come with insurance claims, even though mine is different than trying to obtain a drug. The insurance company of the cab who drove us into a pole in the US sent us a cheque of a few hundred dollars with a) our names spelt wrong, so even if we wanted to, we couldn’t have cashed them anyways and b) there was a fine print clause saying that if we accepted/cashed the money then it voids the rest of our lawsuit. Thank heavens none of us did that. It’s pretty unbelievable the efforts they will go to in order to delay or try to get out of something… fingers crossed this will all come to an end soon, when the settlement portfolio is submitted next month. I am finishing up my impact statement right now, which actually has been one of the hardest parts.

      So glad to hear Michael and Claudia answered your questions – people on here are so wonderful, and such a great source of information! Glad my posts are interesting for you, and I will most certainly keep writing as they are very therapeutic for me also.

      Take good care, and until next time…
      Charlene.

  • #13767
     Raymond C. King 
    Participant

    Michael Lamkin,

    Thank you very much for your post. Your description of the Esbriet capsule was very helpful. It looks like I should be able to open the capsule and dissolve the powder in water to inject it by syringe and J-Tube into my intestines feeding tube. When I called Esbriet, they told me they weren’t sure if the capsule was able to be even opened or not. They were not very helpful about taking it in any other method other than just not crushing it and swallowing it with food as their instructions state. I must bypass my stomach as it is frozen. We crush all my medicines and mix with water.

    Thanks again. Your help was much appreciated.

    Ray

    • #13780
       Charlene Marshall 
      Keymaster

      Ray, I certainly hope there is a way you can try the medication that works for you. If you think of it, do let us know how you make out with the Esbriet when it comes, and how you’re tolerating it. Goodluck!

      Charlene.

  • #13768
     Raymond C. King 
    Participant

    Hi Claudia Sundburg,

    I find your information on Esbriet, and tools you get from the Specialty Pharmacist very helpful. It is kind of scary about just how IPF progresses in different people and how they are coping with it. I too did not sigh up for the rehab as the pulmonologist told me that I really didn’t need rehab yet as my 02 level was still OK. But I have only been diagnosed of having IPF for a few months.

    Thanks again for you post.
    Good luck,
    Ray

  • #13782
     Claudia Sundberg 
    Participant

    Hi Charlene
    I can address the lung biopsy by saying it was an experience. I had 4 holes in my side one was for the chest tube the others for the camera and retrieval instruments. I spent 3 days in the hospital. What no one told me at the time was the numbness and tingling from the nerves being cut. Almost 3 months out it is finally beginning to come back. I had the procedure done in MN and they actually sent the slides to U of Michigan at Ann Arbor because my doctor felt they were a great resource. So with that I got 2 opinions.
    I want to thank everyone whose responded and I’m happy to have found people who “get it”.

    • #13796
       Charlene Marshall 
      Keymaster

      Hi Claudia,

      Thank you so much for getting back to me and outlining your experience with a lung biopsy. I am confident that others will find your post helpful and informative as well!

      I am so sorry to hear of your experience with the numbness and tingling, and even more upset to hear that no one told you this was a possibility. This was also my friend’s experience as well, and unfortunately she ended up with permanent nerve damage also from the biopsy. I am glad that this unpleasant side effect is starting to go away for you now, although I certainly wish it was sooner. I hope the two opinions from both centers were helpful for you, and thank you again for sharing your experience with us.

      Please feel free to reach out any time.
      Warm regards,
      Charlene.

  • #13791
     Raymond C. King 
    Participant

    Hi Charlene,

    Nice as always to hear from you. I really appreciated your sending me the other posts relative to some of my concerns about Esbriet.

    I do hope you get your sleeping routine settled. As you stated it’s hard enough just putting up with the effects of this disease than to have other complications to put up with.

    I am happy you asked Michael to let us know what form the higher dose of Esbriet comes in. My Pulmonologist said that over time, if I tolerate it the final goal of taking 9 pills per day, that he would change it to the larger dose that only requires you to take it 1 time per day. He just wanted the lower dosage so he could start me out slowly to check my tolerance to it.

    It really was good news that Esbriet was sending me the trial strip without waiting for my insurance company authorizing a continued supply. I only hope they settle it before my trial period supply runs out. I know that Esbriet won’t continue to give me free supply when this trial shipment runs out. Maybe I will find out next week if the insurance company will give in. I will keep you posted on my progress.

    Drug supply here in the US is rally a lot harder to come by than I hear it is in Canada. It seems a lot of people that have problems with price and supply of prescriptions here, go to Canada or Mexico to purchase them. I think the drug companies and suppliers are just making it hard on the people here and can get away with it because we have no other real choice.

    I am very happy you and the others didn’t cash the checks that you received regarding the Taxi accident in NYC. Sometimes people do cash the settlement check offer unknowing that they will no longer be able to sue them or receive any other reimbursements. A lot of times they put that forfeiture fact in real small print on the check and when you cash it you are stuck later. I hope you aren’t ending up with any real bad problems as a result of the accident? Having to fill out the impact statement is bad enough. I hope you have a good attorney helping with any information you should provide them.

    Take real good care of yourself. I love hearing from you.
    Ray

    • #13797
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for writing and I do hope you had a good weekend! No problem re: sending the other posts, I hope they were helpful. This is a popular topic, so I know lots of good information was shared. No news on your RX yet for Esbriet?

      Finally my sleep is starting to get better, thank you for your kind comments around that. I think I just needed to settle my mind a little bit, because once I started to feel a little bit better mentally around some of the things I was working through then sleep didn’t elude me as much. I am now on the other end, and almost sleeping “too much”…. 10+ hours per night sometimes. Do you ever get this pendulum swing where sometimes you can’t sleep and other times it feels like you’re sleeping too much?

      That makes sense re: your doctor wanting to make sure you could tolerate the smaller dosage at a time first. I hope Michael lets us know as well. I actually just heard from one of the PR reps of Esbriet wanting to message me directly with more information to share with the forum, so I’ll  see what kind of information gets passed on and I’ll be sure to share it with the folks here if it is helpful.

      I will keep my fingers crossed for you that news of your own supply comes through as positive before your test strip of them run out! I’ve heard so many sad stories of the US healthcare and insurance difficulties for getting drugs. It just breaks my heart…. money and availability of drugs should never be the determining factor over whether someone gets to live or die. It is so infuriating!

      Thanks for your kind words re: the accident, it has been such a learning curve for all of us involved! Thankfully we didn’t cash the cheques, and I’m sure somewhere on it in fine print was a statement that if we cashed it we waived our rights to other reimbursements, including a settlement. Hopefully this will all be done by December of this year, although that might be wishful thinking. The only real permanent struggles I am having are persistent headaches and neck pain from whiplash and a diagnosed concussion, which I am doing rehab for. I also still have incredibly painful shins as the soft tissue was damaged pretty bad with extensive bruising right down to the bone. Hard to believe but 9 months later they are still sore to the touch even though the bruising has gone away. Thanks for asking, thats really kind of you 🙂

      I hope you had a great weekend and are looking forward to a nice week ahead.

      Cheers,
      Charlene.

  • #13792
     Raymond C. King 
    Participant

    Hi Claudia,

    Wow! After your post about the biopsy recovery problems, I’m very happy my pulmonologist told me he wasn’t going to take a biopsy as it sometimes has a bad recovery experiences and all it would show us is you have IPF. He said the Cat Scan and other x-rays show you have it. I hope all your bad recovery problems subside without any long-lasting effects.

    Ray

    • #13798
       Charlene Marshall 
      Keymaster

      Nicely put Ray – I also hope Claudia’s side effects from the biopsy resolve without any real trouble! Have you done an HRCT scan Claudia? This is another excellent diagnostic tool (high-resolution CT Scan) for IPF and a lot less invasive. Likely it has been done, but just thought I’d double check 🙂

      Charlene.

  • #13808
     Ray Hastings 
    Participant

    i am starting my3rd year on Esbriet . the things i have discovered is

    (1) never take the pills on an empty stomach. (2) it its ok to miss a dose occasionally without starting over

    another resource when your insurance turns down your request for coverage is your state’s insurance commission.  my experience in insurance coverage comes from  15 years employment with 2 health insurance companies .

    i get my prescriptions from the VA which bills my insurance company.

    • #13815
       Charlene Marshall 
      Keymaster

      Hi Ray,

      This is really helpful information for others to learn about – thank you!

      I would assume that every state in the US has a state insurance commission, that patients could seek out as an option to pay for Esbriet? Hopefully this is an accessible option for others as well. Glad you’re able to obtain your medications this way!

      Cheers,
      Charlene.

  • #13810
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for your return message and all the other information you have solicited from everyone and passed on. They have been very helpful.

    I hope you had a good weekend and went to the beach or something cooling and fun? You need to do something exciting.

    Thank you for inquiring about us having a good weekend. It was fair. We had one of my wife’s niece and her husband visit us from Utah for a couple of hours on Saturday. My wife’s sister-in-law is celebrating her 92nd birthday and the niece was just catching us up on her health issues. Sunday was just kind of a sit at home and relax day. I spent a little time just cooking up a couple of the recipes I had downloaded to try. One came out well the other, I threw it in the trash. Nothing spectacular about it. I can’t eat much of anything, but I like to taste different things that sound good when I read the recipe or see its picture. I use my wife for a taste result to see if I should keep the recipe or throw it. I don’t know why I collect recipes, but I use to love to cook gourmet type food but since my stomach freeze dilemma and fatigue problems, I can’t stand very long, and I seem to get ill after standing very long, I usually can’t eat any of what I cook until sometime later or the next day but I taste it. I try not to eat anything after 3PM as it takes too long for the food to pass thru my stomach and it causes acid reflux at night if I eat late. It kind of cuts us out from going out to eat later in the day. After I cook something I always swear I’m not going to do it anymore but the hunger to try it just keeps coming back. Do you find eating causes you any problems with your IPF and fatigue problems?

    This weekend will be spent going to kind of a big get together in a park with my wife’s sister and husband coming from Texas to celebrate their 65th wedding anniversary. I sure hope it won’t be too hot. It is supposed to reach the high 90s and Friday 100 degrees F. We have so many fires in our state and the states around us causing smoke, we seem to have all types of problems of the smoke getting into our lungs. We have had very little rain to clear it out and it seems to just settle in the valleys.

    I hope the sleeping problem you had has subsided satisfactorily for you. Maybe after you get you sleep caught up, it will start to stabilize some. They say you can never catchup on lost sleep but maybe the 10+ hours sleep you have been getting will help somehow? I try to keep a set bedtime at 10PM and I feel rested enough to get up at 5ish the next morning. They say people need 7-9 hours sleep each night. When I initially wake up, I start thinking of things I wanted to get done that day and can’t ever seem to go back to sleep. I’ve never needed sleep very much and don’t nap in the daytime. If it gets light outside, I seem to wake up. I must take my medicines at 7AM and 7PM each day so that kind of sets the time we must move. Also, I must get on my feeding tube at 7PM so that all the IV food will run out before 7AM or it delays when I get my meds and other day activity. The time line does kind of control what we can do in the mornings and evenings though as most of the invitations we get to go to eat out starts at 6 or 7PM. We always must decline the invitations. It also makes traveling anywhere kind of limited also.

    A PR rep for Esbriet called me Monday to find out how my insurance denial appeal was gong and I had to tell them that I had no idea as my doctor was handling it and they hadn’t let me know anything lately. They said they would contact my doctor to see if they could get any information from them. It appears that there are 3 or 4 different interested Esbriet foundations trying to either get me on Esbriet or better financing to obtain it for me. I’m not sure what is going on with any of them. I have called the Pulmonologist’s nurse this morning to see if I could find out anything. As usual, it all went to phone mail and I am awaiting to see if I get a phone call from her sometime today. Otherwise, I’m still in the dark about it.

    I do hope you can get over all the problems you are having with the insurance and the physical damage the Taxi accident cause you. I’m sure it has cause mental strain also. Maybe they will come up with some settlement that will help you, as you say, “Maybe in December”. I know it can’t cover everything the recovery has caused but maybe it might help a little?

    I’d better close my rambles again. It always seems to cover things about me not related to the IPF, but it gets them off my mind a little which might be a little therapy for me. Not much help for the IPF people that are looking for help for them though.

    Love to hear from you as always. Take good care of yourself.
    Ray

    • #13816
       Charlene Marshall 
      Keymaster

      Hi Ray,

      There are two Ray’s now contributing to this thread, so I’ll need to make sure I get both of you correct 🙂

      I was able to get to the beach at my cottage this weekend, and it was lovely! I even swam a little bit with my oxygen tank on the beach and a long cannula. I just had people “spotting” me to make sure my cannula didn’t trip someone else, or get in their way.

      Glad to hear your weekend was alright, sometimes those quieter weekends at home at just what we need, at least this is the case for me anyways. I enjoy cooking too, but much prefer to cook something for others to eat as I don’t have a big appetite either and yes, cooking certainly takes a lot out of me because I’m standing for a long time. I can’t eat as much anymore, or as fast as I run out of breath chewing and feel a lot more full than I ever used to before. Thanks for asking, and I hope your wife is able to benefit from your recipe collecting 🙂

      Please be really careful with the smoke this weekend and going to the anniversary party! That would make me nervous, and combined with the heat it is almost a recipe for the ‘perfect storm’.  I hope you don’t have to miss it altogether, I know that can suck too, but that it is safe for you to attend and enjoyable of course. I don’t have many plans this weekend, as I actually opted out of going away with friends this weekend to prioritize my health and safety as well.

      The sleep issue has thankfully subsided, and I think part of that is because I’ve tired myself out enough during the day that the physical fatigue exceeds the mental stimulation that is keeping me awake from thinking too much. I hope it evens out soon, as you say. Keeping a regular bedtime is such a good idea — I should do better at this as I know it is physically better for my body too. Thanks for sharing!

      How frustrating for you – the conversation about Esbriet! Hopefully they are able to get somewhere with it and give you some good news soon. Do let us know when you hear something, hopefully positive news 🙂

      Thanks also for your kind words re: the accident settlement. It certainly is mentally exhausting! Money won’t fix what happened, thats for sure but it will definitely help as I have so much school debt right now and being able to eliminate that would allow me to save so much more, and maybe even drop down to part-time work as working full-time is getting so hard for me with my lung function. However, I need to work because of the financial situation… its a bit of a mess, and any type of settlement will definitely help.

      Glad you find this forum helpful and can get some things off your chest, that is important too. It’s always great to hear from you, thanks for writing and I hope you’re having a nice week.

      Cheers,
      Charlene.

  • #13811
     Raymond C. King 
    Participant

    Ray Hastings,

    Thank you for your Esbriet advice information.
    “(1) Never Take the pills on an empty stomach.”
    I won’t have to worry about that as I have a frozen stomach and must take all my food and drugs via a feeding tube that goes directly into my intestines. No one from Esbriet or anyone else can tell me if I can even take the medication ground up or extracted from the capsule directly. They just tell me that they have never come across that problem, so they don’t know. My pulmonologist doesn’t know either. So, if I get the medication, we will probably just have to experiment, I guess.
    “(2). It is ok to miss a dose occasionally without starting over”.
    That information is very helpful. I am supposed to meet with a representative Thursday from Genentech, the manufacturers of Esbriet to provide information about taking the drug. I hope he can answer some of my questions.

    If things keep failing by not getting an OK from my BC/BS Insurance Company, I will take your advice and contact the Stake Insurance Commission. My Pulmonologist has really been working hard in obtaining it for me and other assistance foundations have been contacting me. I do have VA Insurance but have never gone to them since I had the Federal BC/BS insurance. I also have Medicare, but it doesn’t cover drugs.

    I hope the Esbriet works for you and extends you life with the PF. I guess we will never know for sure how much longer we would have lived if we hadn’t taken it. How do you gauge something like that?

    Thanks again for your information. It is really appreciated.

    Ray King

    • #13817
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Goodluck with your meeting on Thursday with the representative from Genentech, I do hope that goes well for you! If you find out any ‘gems’ from that meeting, in terms of information that might be helpful to other members of the forums (even future members) please let us know.

      Hope you remain well, and thanks as always for being part of our forums.
      Warm regards,
      Charlene.

      • #13830
         Michael Lamkin 
        Participant

        Hi Ray, I use the VA and it’s never too late to get started. For the most part their care is excellent and the highest co-pay they charge for medications is $34 a month but for the most part is $8-$11 a month per prescription. There are zero co-pays on ALL other treatments such as CT’s and X-rays. Also no charges for oxygen (even the concentrater). If expense is a concern I would urge you to consider taking advantage of the benefits you have EARNED!

        wishing you the best!

        Michael

      • #13836
         Charlene Marshall 
        Keymaster

        Such valuable information you’ve shared for others Michael, thank you!
        Charlene.

  • #13823
     Joyce Douglas 
    Participant

    Hello Charlene.  In response to your questions on today’s posting,  I was diagnosed on one day and immediately my Dr.

    who is in charge of my IPF, told me he was putting me on the Esbriet.  He also said that I had severe IPF and wouldn’t be able to have a lung transplant.  I received my first box of Esbriet about a month later, and 16 months later am still taking it daily.  I do not have too many disagreeable side effects from the Esbriet that I am aware of, but do have some stomach issues of nausea at times if my doses are too close together.  For ex: bkft at 8:30am,   lunch at 12:00 pm and supper at 5:30 to 6:00 pm. If they get any closer together then I will sometimes have nausea for a while and need to have a small bit of food ex: a slice of bread, graham cracker or fruit.  A drink will cause the nausea to be worse, so I drink water and tea with  my meals but not often in the afternoon, until my supper when I then have my tea with supper.

     

    • #13828
       Charlene Marshall 
      Keymaster

      Hi Joyce,

      Great to hear from you, as always – thank you for your reply! 🙂

      It is nice to hear of a quick-acting doctor for a patient with IPF, as I know other members of our forums have struggled with being put on the anti-fibrotic medications that will slow down the progression of their disease. It sounds like it has been tolerable for you over these 16 months, which is good to hear. Have you had any comparison PFTs/scans that show if it is working in slowing down the progression of your disease? Have they ever re-evaluated your transplant candidacy?

      I’ve heard quite a few people have to structure their meal times around when they take their medications and glad you’ve figured out a schedule that works for you. Interesting that the drinking makes the nausea worse for you, that is a bummer. Tea at meal times would be okay with me though, I love tea, so I’m glad that is an option.

      I hope you’re keeping well and thanks, as always, for providing us with an update.
      Cheers,
      Charlene.

  • #13835
     Raymond C. King 
    Participant

    Hi Michael,

    Thank you very much for the VA Medical payment information. I looked up the VA Medical Insurance program on the internet to compare some of the coverage payments and I have basically determined that even though I must pay for my Supplemental (FEP BC/BS, FEDERAL Employee Program Blue Cross & Blue Shield health insurance, I think in the long run a change would not benefit me. I do now have the benefit of being able to change my insurance provider selection every November-December of each year if I see the other insurance company provides better or needed coverage.

    Also, with the drug purchases: I have looked at the VA drug benefits pay table and they are about the same minimum I pay for each RX. The FEPBC/BS drug coverage also has a mail order program where I can order a 90-day supply of generic drugs for just $10. The copay for a 30-day or less RX at a drug store has almost always been less than $10. Sometimes what I pay for a 30-day supply of drugs will total less than $10 if I just continue to refill it at the drug store each month and not have it sent by mail order. For Specialty Drugs like Esbriet, FEPBC/BS will cost me $35 or about what you quoted me for the VA.

    I am not sure if you have any family coverage with your VA insurance. I read the following statement while reading what VA insurance covers and it stated: “VA does not normally provide care for family members of Veterans enrolled in VA’s health care program. If you drop your private health insurance, they may have no health care coverage”.

    Even though my children are now grown and away from home, I have family coverage for me and my wife and paying a lowered annual rate for just the 2 of us. If I should die, she can continue the plan for life.

    Anyway, thank you for your helpful suggestions. As always, they are appreciated.

    Good luck with your life.
    Ray King

  • #13853
     Raymond C. King 
    Participant

    Hi Charlene,

    Yes, there are now two Rays commenting on this topic, so I will add my last name to my posts.

    I am sorry I have not commented on your post to me on Monday PM, but I was kind of waiting to see if my Pulmonologist’s nurse got back to me letting me know what was happing with my medical insurance and the Esbriet denial.
    The nurse did call me Tuesday and tell me that a representative from Esbriet manufacturer Genetec had come to her office and went over my HDCT pictures, X-rays, and tests and helped her fill out the denial appeal. After they completed the appeal the
    rep said he would follow it through to make sure my insurance company received it. The nurse had told Genetec that they had sent two denial appeals to my insurance company and each time they said they had not received them and were still awaiting the denial appeal letter. I still haven’t heard anything about the results. I guess the appeal was sent by snail mail so and it will be awhile

    On Wednesday I did get a call from Genetec telling me that they were sending me the 30-day free trial via registered carrier and it would arrive today, Friday.

    Yesterday, Thursday, my wife and I met with the Genetec representative and he spent an hour going over the history and use of Esbriet. He had traveled from Salt Lake City, UT, 250 miles away for our meeting. He said he would be meeting with us once a month with more information and any questions on its use. I hate to say it, but we felt it was a wasted hour as I had viewed all that information and charts on the internet and other Internet sources including this and other forums. He said he was a Pharmacist for 25 years and had lots of nurse’s experience. He really tried to be helpful with our few questions but the main question I had, he could not answer. I wanted to know if I could insert the medicine through my feeding tube as I have the frozen stomach. He said that the pills now come in solid pill form and not powder in a capsule. He said that the pills had to be taken with food and were not crushable as the pill ingredients were meant for slow release. He told me rather than starting to take them after the sample pills arrive, I should wait until he can find out how or if I could utilize them from Genetec. He said my doctors nurse would notified me. I don’t know who at Genetec can help him as my doctor and I had both called Genetec via phone and after talking to the drug department there, we were told the same thing, “They have to be taken with food and they are not crushable and that is all they know about it”. I guess someday, we will find out what to do?

    I was very happy you were able to go to your cottage and swim at the beach over last weekend. I’m glad you were able to use your long cannula, so you could swim, and no one had tripped over it. I think it would be nice if the companies that make the cannulas tubing would make it with bright stripes on it, so people could see it. Just a thought. Luckily, I am not on oxygen yet, so I don’t have to put up with it. I guess it will eventually progress to that point though. It’s too bad that you had to be on it so soon being as young as you are. The Genetec Rep said that IPF is predominate with people that are over 65 and male. He said it was seldom that younger people get it.

    My wife’s sister and husband are coming from Houston, TX this weekend so I guess we will be doing things with them. There is supposed to be a big celebration with her husband’s family and friends Saturday that we have been invited to attend but it is going to be so hot. I am not looking forward to it. Today, it is predicted to be 104 degrees F. and about the same tomorrow. It probably won’t seem that hot to my wife’s sister because the humidity level is very low here compared to Houston and their temp has been in the high 90s and low 100s the last few weeks. She will probably want to wear a sweater.

    Yes, I hate to give up cooking as I really like to try out different things and I plan to destroy all the recipes and cookbooks I have collected. My wife has never liked to cook, and I usually have cooked all the big meals, so she won’t need the recipes. You said you couldn’t eat very much either and like you, I always chew my food for a long time. I always want it to be chewed to real small pieces, so it won’t stay in my stomach too long and cause me to get nauseated.

    I guess those student loans are a real headache. I was able to pay any student loans I had fast and the Federal Aviation Administration paid for a lot of my extended schooling and other training. I guess I was lucky? I’m sorry you must work such long hours because of your financial situation. It doesn’t help to have to do it when you are not feeling well and having to put up with the other problems IPF causes. I do hope the accident settlement will help a little when you get it, and you can slack off a little with the extra work. I do hope they settle it in December like you said they might.

    I love your comments and information. I’ll close for now and let you know if I hear anything about the Esbriet. Take real good care of yourself and I hope your weekend will provide something good and relaxing for you.

    Ray King

    • #13862
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Nice to hear from you, and I hope you’re having a nice weekend! I am currently up at the cottage, so I apologize in advance for the brevity of this message… I always try to keep my ‘online’ time short while I am up here. It is so peaceful that way, to be away from electronics.

      Glad to hear the Esbriet rep was helpful in submitting an appeal for the insurance denial. Fingers crossed that they can help, especially after looking at your imaging and maybe making a stronger case for you. So frustrating that insurance companies can claim they don’t get appeals. Although I suspect this is true in some cases, my guess is that this is just another delaying/stall tactic on the part of insurance companies unfortunately. Fingers crossed that things work out for you, and that they can get the Esbriet approved. Did they say how long you should have to wait until you know something?

      Did the trial Esbriet pack arrive for you? Have you been given any further instruction on how you can consume it given the frozen stomach? Hopefully someone knows something about this. How frustrating! Are you planning on waiting to start it then until you have an answer? Sorry to hear that the hour long conversation was a waste of time for you and your wife.

      Gosh I hope you’re keeping safe in that hot weather, I can’t imagine temperatures like that! It is nice here today, a cooler breeze and the temps feeling about 10 degrees cooler than last weekend which was about 40 degrees celsius. I’ll take the 30 degree temps after that 🙂

      The Esbriet rep was right in terms of how infrequent it is that younger people get iPF, although I know about 8 people now who have it and are under 40, so I guess we’ve all ‘drawn the short straws’ unfortunately…

      Thanks for your kind words re: the student loans and settlement… I sure hope it ends in December as well and alleviates some of the financial stress for me too. You are lucky that the FAA paid for your extended student loans, that must have relieved a lot of stress for you. It is tough, especially when I’m not feeling super well. It could be worse though, and I try to keep everything in perspective.

      Take good care, and I do hope that you’re able to write soon with good news of the Esbriet. Fingers crossed for you!

      Cheers,
      Charlene.

  • #13859
     Raymond C. King 
    Participant

    Hi Dianne,

    I am sorry to hear about Esbriet causing the acid reflux, sun exposure, and possible liver problems. I had met with the Genentech representative Thursday to receive information about taking Esbriet and he did say all those problems have been associated from taking it. I surely don’t need anything that will expand my present problems with acid reflux. Due to botched GERID surgery, I now have a frozen stomach and no Hiatal mussel. I was left with just a straight shot from my mouth to my stomach, so stomach acid can flow freely from my stomach to my esophagus. At night it has previously been a real problem, so I don’t need another source that produces the acid flow. I have been sleeping with my upper body elevated in a hospital type bed for almost 7 years since a botched GERID surgery. I don’t need a liver problem so let’s hope when I take it, that won’t happen. Friday, I just received my first 30-day Esbriet supply but can’t start taking it until Genentech figures out how I can insert it without it going through my stomach.

    I also wondered if Esbriet will really slow the progression of IPF and asked the Genentech representative. He said they had run tests with 2 control groups. One took the drug and the other didn’t for a period of time. I guess these tests were run prior to when the drug was approved in 2014 and they started distributing it. At the end of the tests, the participants ran through the breathing, X-rays and other tests you take when you go to the pulmonologists, and a comparison was made on the IPF destruction process. I, like you, am not sure if it really will work and will be worth all the side effects that it can cause. I guess each person will just have to hope for the best because there doesn’t seem to be any other alternative.

    Good luck with your liver tests and if you find that it was unsatisfactory, please be sure to post the result. I’m sure everyone taking Esbriet will be interested it the results.

    Take care of yourself.
    Ray King

    • #13882
       Charlene Marshall 
      Keymaster

      Thanks for such a thorough reply to Dianne, Ray! I am sure your information was helpful, and even though I am on OFEV, I found it very interesting to hear the information from the Esbriet representative. I appreciate the time you took to share it with us 🙂

      Charlene.

  • #13860
     Claudia Sundberg 
    Participant

    Hi Diane

    I have been on Esbriet for 8 weeks now and have learned several things.  I always make sure I take my pills one at a time throughout the meal and to make sure there is protein in each meal.  Apparently that slows the absorption of the Esbriet making it easier on the stomach.  I have had several liver tests and they have all been normal except one.  On one my AST level was high and my pulmonologist thought maybe I should cut back if it continued.  What I found out is AST is not only in the liver but also in muscles in the body so any injury could make that number higher.  I had twisted my foot and as it recovered the AST levels went back to normal.  I, too, panic about the sun but I now have the new habit of applying SPF 50 sunscreen in the morning and afternoon if I have to be outside.

    I do have a question for the group.  We are experiencing high pollen alerts and I am wondering if this affects breathing.  I am trying to remain indoors most of the time just in case.  Anyone have any issues with this?

    Claudia

    • #13864
       Charlene Marshall 
      Keymaster

      Hi Claudia,

      Thanks for writing, and for such a thoughtful response to Dianne’s post about her experience with Esbriet. I’m sure she will appreciate it, as will others on this drug. I am on OFEV, but I do find it beneficial to know of others’ experience with Esbriet so I do appreciate your post.

      As for the pollen questions, yes, I would imagine this would impact breathing. I know others have commented on this during their high-pollen season as well! I don’t notice it much where I live, as we don’t have a lot of pollen but I am triggered by other environmental factors that definitely impact my breathing. I hope you’re able to get some relief, and that staying indoors (as much of a pain in the butt as that is) is helping with your breathing.  Hopefully others can chime in and share their experience a bit more with you re: pollen and how it impacts breathing….

      Take care, and thanks again for writing!
      Charlene.

  • #13861
     paula 
    Participant

    Hi everyone. I first started taking Esbriet Dec 2017. Really I had no issues with it. Diane, I have had stomach issues for years so they just had me up my dosage of propantazol (sp?). Breathing was much easier and I was not coughing nearly as much. And best yet, the fat fairy was leaving me alone and I was losing weight. Then it happened……

    I developed an allergy to the Esbriet. They took me off the meds for 14 days and then had me restart to see if I was in fact allergic. Less than a day after starting the hives and itching came back 10 fold.

    I am now on OFEV. This is my second month. It has been a rough month as I was in the process of selling and buying a house. We just moved a week ago, and my breathing is horrible as are my O2 levels. I am beyond tired. I think I pushed myself way too hard. So I am hoping now that things are starting to calm down everything will get better. Fingers crossed.

    I finished my pulmonary rehab last week and will be going for my next pulmonary function test at the end of the month. Should be interesting.

    I think the Esbriet at least for me was better but I certainly do not miss having to take 9 pills a day.

    • #13865
       Charlene Marshall 
      Keymaster

      Hi Paula,

      It is so great to hear from you! I’ve often wondered how you’ve been since starting the OFEV and forgot you were moving, so I am so sorry to read how much you’ve pushed yourself with the move and now your 02 levels are suffering. Do you find rest helps with the 02 levels and your breathing at all?

      I’ll keep my fingers crossed that things started to settle down for you now as well, and that the OFEV begins to work for you. Do you have any intolerable side effects from it? I am on OFEV as well and *knock on wood* my side effects for the whole duration I’ve been on it have been pretty good. Hopefully with some quieter days, it’ll start to work and your breathing will improve.

      Let us know how your PFT goes….sending good wishes for that appointment!
      Warm regards,
      Charlene.

  • #13866
     paula 
    Participant

    Hi Charlene, I guess the only side affect would be the loose stools. But that could be enhanced because of the stress.

    Right now in regards to the SOB even little amounts of exertion seems to make it worse. Not always but way more than before. The other day I was outside, sitting down in the shade pulling out weeds. Drinking water. I went back in about 45 minutes later and checked my O2 level and it was 79. After sitting down for a few minutes it went back up to the high 80’s to low 90’s. I really think that I have pushed my system so much that its taking a toll on my numbers. As I stated earlier should be interesting when I do the pulmonary function.

    I am very tired, again I do not know if that is a byproduct of all of the stress I have gone through the past few weeks, I know while we were dealing with some issues selling our house, I was getting massive nose bleeds and the night we had to attend a town meeting to straighten something out, I actually got physically sick. Those have gone away since the issue was resolved. But I am tired now, my body aches everywhere and I think its a matter of stress and trying to do too much. If that make sense.

    Life goes on. I hope all is going well for you on your end. I think of you often even though I have not been here too much as of late. But I do think of you and the others here that I have gotten to know and hope all is doing well.

    Paula

    • #13884
       Charlene Marshall 
      Keymaster

      Hi Paula,

      So glad to hear back from you, and I am hoping that things have started to settle down a little bit for you!

      Yes absolutely, added stress and nerves could contribute to that side effects, although it could also be the OFEV. I can’t believe how much stress can actually impact us physiologically though! I learnt about this at a conference recently where I took a ‘leap’ out of my comfort zone and did some exploring with mindfulness and the mind-body connection. Long story short I guess, stress could definitely be a source of loose stools unfortunately. I hope this subsides for you soon, did you say you’re on month 3 with OFEV now?

      Yes, do let us know the results of the PFT once you do that, Oh I am so hopeful for you that it isn’t a progression in the disease and that it might just be a result of your move and pushing yourself physically. Not that I want you to experience any increased SOB of course, but hopefully if this is new for you, it will subside with some rest and R&R. Are you getting settled into the new place ok? I hope you’ve had some help too, I couldn’t imagine moving with the current condition of my lungs.

      Have you sought out medical advice re: the nose bleed? Sometimes medications can make our blood ‘thinner’ and nose bleeds can happen more frequently as a result of that. I know I’ve had them more often too, and when I do they take forever to stop. Probably not worrisome if it has only happened once but something to keep in mind if it happens again. So sorry you’re going through this, that is so unpleasant…

      I am doing pretty well thanks, trying to enjoy summer as much as I can before the warm months are over. That said, I love fall and the cooler weather will be welcomed as opposed to the humidity. Thanks for your kind words – I often think of you as well!

      Take good care, and keep in touch.
      Charlene.

  • #13874
     Raymond C. King 
    Participant

    Hi Charlene,

    Always nice to receive your posts. I get to where I kind of look forward to them.

    Sorry I have taken so long to get back to answering your post to me. I read it late last night and this morning, my computer wouldn’t start up, so I thought I would just use my iPad. Bad choice. It wouldn’t work either, so I have spent some long hours getting both to work. Also, my wife had a few projects that needed done with house problems that needed my assistance, so I am finally getting a start on replying.

    I am happy you went to your cottage again this weekend. I was afraid, from a previous post that you probably were just going to stay home and rest this weekend there and that that is what you were doing. I’m sure it is peaceful at the cottage, so you can get away from things. This electronics media thing does keep one busy if you follow it closely.

    No, the Esbriet Genentech rep didn’t say when I would be finding out when I would be hearing from the drug denial appeal. I suppose they will take as long as they can to approve it.

    I did get the 30-day trial Esbriet pack on Friday like they promised I would. The Genentech rep told me not to take it until my doctor or his nurse called me and told me to start taking it. The rep was going to have to present my having to take it directly into my intestines and not swallowing it with food to the main company for a solution. I assume that since the pills contain slow-to-release granules that the granules must dissolve slowly and that is why the pill cannot be crushed and ground into a powder like we have to do with all the other medicines I take. The rep said that Esbriet use to come in ground up form in a capsule, but they quit doing that a while back. You can only now get it in a solid pill from. In either case, it still must be taken with food. Since Esbriet is known to cause nausea in lots of people when it dissolves, taking it with food would aid in slowing down its shock to the system a little. Haven knows what it might do if it is condensed to a powder and taken without anything to slow it down. I have read that nausea usually is produced when food and other items are in the intestines rather than in the stomach. I’m not sure where I read that, but if its true, it isn’t good for me.

    The weather is still real hot today and is predicted to be 90+ the rest of this coming week.

    Yesterday, the reunion lunch in the park turned out not to hot to put up with. It was held in a park in a town my wife and her family grew up in which is about 15 miles away and is in a small valley surrounded by mountains. It was about 85 dreg F there but there was a cool mountain breeze blowing and it felt kind of good. There were close to 50+ people that attended. About ½ of them flew here from Houston, TX. They said it was hot here. They have had temps about like ours, but they have a real high humidity compared to the 10-20 % we have here.

    The schooling and training I had while working with the FAA didn’t require student loans. It was done at the FAA Academy in Oklahoma City, OK. That training center is for all Air Traffic Controllers and Navigation Equipment Technicians from all over the world. The FAA also sent me to many factories that make the navigation equipment for them for training on repairs. The one good thing was that the FAA paid for all the expenses for the training. As I said earlier, I do hope you won’t have to work real long extended hours. This disease really costs a lot to put up with and the extra stress at work isn’t good for you. I guess bills still come in and must be paid though.

    Well it’s getting kind of late in the afternoon and I still have some other work I must do on this darn computer. I just got it to a working stage, but I still am getting some errors I’m going to have to investigate, so I will close for now.

    Hope all is going well, and you will enjoy what is left of your weekend.

    Ray King

    • #13885
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for your thoughtful reply and kind words, as always, it is great to hear from you! I hope you were able to have an enjoyable weekend 🙂

      No worries at all re: any delay in replying. I am also just nicely getting home from my cottage and catching up on some forum posts that I’d missed due to being away. It is a beautiful day here so it was nice to have a quiet, relaxing morning on the water before coming home. I know the frustrations of an iPad well — I own one but I never use it because I don’t find it user friendly. Glad you were able to help your wife with some projects too.

      So frustrating to hear that even a timeline of when you can expect notification about the Esbriet was not given for you. I just cannot believe the hoops you’re having to jump through with this process!

      I hope they’re able to come up with a solution for you to be able to take the Esbriet with food as yes it is really known to cause nausea in patients, especially in the beginning. Surely they’ve had other patients who need to consume the drug in a different way than most, I’m surprised they haven’t thought of a solution for this yet. Let us know when you hear back from the rep and what he finds out after presenting your needs. The slow release component does make sense, but surely a drug company the size of Genetech would be able to come up with a solution for alternative ways to consume the medication. I am really curious to hear what they say …

      Wow, those are some hot temperatures for sure! Glad it was tolerable with a breeze though, and that your humidity isn’t too high. It is humidity that “makes or breaks” it for me, either enabling me to deal with the heat or not as I can’t stand the sticky, high humid days and neither can my lungs. Sounds like it was a good day overall for you, and I am glad you could attend with your wife.

      Thanks again for writing and giving me an update on things going on with you. I think I’ll curl in for a nap now, it is mid-afternoon on a Monday and I’m off today, plus tired from the cottage so a short nap is in order I think. This is one of my simple joys now when I can have them: afternoon naps!

      Take care and chat soon,
      Charlene.

  • #13886
     paula 
    Participant

    Hi Charlene
    I am on my 2nd month of the OFEV. They actually sent me some medication the first month to help with loose stools so I think that is a some what common side affect.
    I will see my doctor next month. The nose bleeds have gotten much better. So I think a huge part of it was due to the stress.
    Glad that your enjoying your summer AND that you stepped out of your comfort zone. Scary I know but was it worth it for you? I hope so. I think, the worst part of this or any life altering condition is that it makes doing the things we love so much very hard. Personally I love going to the beach and basking in the sun. I do not think I could handle that any more.
    We have gotten a lot of unpacking done. Phew.

    Talk to you later. Time to make a cup of tea

    Paula

    • #13889
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Nice to hear from you, and thanks for taking the time to reply.

      Glad to hear you received medication to help with that unpleasant side effect. If it doesn’t subside, is it a medication they can provide you with again, to see if it helps eliminate it? Hopefully it starts to go away for you soon. I’m also really glad to hear the nosebleeds have subsided, they can be very unpleasant as well. I think the dry heat and humidity are partially causing mine, but they’re pretty infrequent now which is much better. Goodluck with the doctors appointment next month — I hope it goes well for you!

      Thanks for your kind words about my experience with stepping out of my comfort zone. It is likely a small thing for others, but like you said: when living with a life-threatening illness, it makes it a bigger deal, I think. Before I was diagnosed with IPF, I always moved far too fast to ever consider mindfulness. Part of me actually does still think it is a little bogus, however, this mindfulness course pulled together the physiological impact that mindfulness and meditation can have on the body. I love physiology and biology, so I actually found this fascinating. There is a reason people say, “stick with your gut feeling, or go with your gut” because a healthy gut balance actually contributes to our brain health. It was really interesting, so to answer your question, yes, it was definitely worth it for me 🙂

      Glad you’ve been able to get some unpacking done, and hoping you enjoyed the rest of your night with a warm cup of tea. I also have one beside my bed right now as I write this.
      Take good care of yourself!
      Charlene.

  • #13914
     Carol N Lenahan 
    Participant

    Hi, I am Carol and I was diagnosed with IPF in 2016.  I had a lung biopsy to confirm the diagnoses. I was on Ofev for almost 1 year but I lost 60 lbs and looked like death warmed over.  I have been off of it for about a year and have added some pounds back. I’m not sure I want to start Esbriet.  We’ve moved from NYS to GA and I find myself explaining that I don’t have COPD. Yikes!

    Getting back to pulmonary rehab finally. I’d like to hear about the transition from Ofev to Esbriet.

    Many thanks, Carol

  • #13917
     Charlene Marshall 
    Keymaster

    Hi Carol,

    Thank you so much for writing and sharing a bit about yourself. Welcome to our forums!

    Sorry to hear you had such trouble with weight loss on OFEV. Was this gradual, or did the weight come off rather quickly? Was it from unpleasant side effects like GI issues and loss of appetite? Sorry for all the questions, just trying to seek out information as I am on OFEV and haven’t experienced any of these yet, although my appetite has definitely been reduced pretty significantly.

    I haven’t had any experience with Esbriet, but lots of people on our forums have and have been helping in documenting their experiences with this drug. I know two people who went from Esbriet to OFEV, but unfortunately not the other way around. Are you nervous about starting it due to the side effects?

    Goodluck with pulmonary rehab, this is something that has helped me tremendously so I hope it is a good thing for you as well 🙂

    I look forward to getting to know you a bit more through the forums!
    Cheers,
    Charlene.

  • #13945
     Michael Lamkin 
    Participant

    Hey Ray

    just wanted to let you know I received the 771mg pills and they are in solid form. However it’s possible they also come in capsule (can opened and in powder form) but I don’t know.

    Mt best and hope you’re doing well!

     

    Michael

    • #13949
       Charlene Marshall 
      Keymaster

      Hey Michael,

      Thanks so much for taking the time to follow up with this and “close the loop”. Much appreciated!
      I hope this message finds you doing well and that you enjoy the upcoming weekend ahead.

      Warm regards,
      Charlene.

  • #13948
     Raymond C. King 
    Participant

    Michael,

    Thank you very much for the 771mg pill information. I assumed they would be in solid form as I had a meeting a week ago with the Genentech Esbriet representative and he informed me that the capsule form with granules in them was discontinued awhile back and it only now comes in solid pill form. I have a 30-day supply of the pills but can’t use them yet until Genentech figures out how I can use it dissolved in water and injected directly into my intestines via a syringe. They say they will give the information to my pulmonologist and he will let me know if and how I can even take it.

    Time will tell.

    So far, I am doing well and I hope you are too.

    Thank you for your concern.
    Ray King

    • #13950
       Charlene Marshall 
      Keymaster

      Hey Ray,

      I know your reply was to Michael, but was just thinking of you. Still no update from the doctor yet about how you can consume the Esbriet, huh? I wonder how long it will take for them to come up with a solution for you, or to determine whether or not you can take them. Did you ever get an opportunity to inquire if OFEV comes in capsules that can be given via your tube? I am on OFEV and have no idea but can see what I can find out for you if it comes down to your not being able to take Esbriet. I will keep my fingers crossed though that this is not the case!

      Glad you’re doing well and I hope you enjoy the upcoming weekend.
      Kind regards,
      Charlene.

  • #13957
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for your continued interest in my problems with Esbriet. No, I still have not heard anything positive from the Esbriet manufacturer. It has been just over a little over a week ago that I presented the problem to the Esbriet Clinical Coordinator during our information session. I just received a conformation e-mail scheduling another meeting with him on Tuesday, 9/11/2018. I guess these sessions will be monthly. I didn’t learn anything new about Esbriet on the last session that I hadn’t read on their Web site. If I haven’t received anything from them by early next week, I think I will call the information telephone number that they gave me if I have any questions.

    I still haven’t heard anything from my insurance company either about them acting on our denial appeal for them not accepting covering anything to help pay for the drug. I plan on calling them next week also.

    I have not done any inquiry about the from that OFEV is in per capsules containing powder or solid pills. Reading about them on their site, the instructions for taking it are about the same as for Esbriet e.g., taken with food. So I would guess they are time release pills that are not to be crushed also. I won’t do much looking into that until I get some word about the Esbriet. That is what my pulmonologist wanted me to take over the OFEV as he said I would be able to start on lower doses with the Esbriet vs the OFEV and I think he said it had less side effects. I appreciate your offer to investigate the forms and conditions for taking OFEV if I can’t take the Esbriet. You are so busy with everything that life is forcing on you, I don’t see where you find all the time to do these things too.

    I hope you have a good weekend too. Our weekends seem to be just another day since we are retired and don’t have the stress of gong to work on week days and need to get away for some relaxation on the weekends. It seems to be just more convenient to sit at home and stay cool.

    Will close for now. Thanks again for keeping up on all my problems.
    Ray King

    • #13958
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for your reply, and for getting back in touch with me. As always, it is great to hear from you!

      I’d hoped you would have an update for us in terms of the Esbriet issues. So sorry to hear you haven’t had more leeway yet in this regards. I wonder if the reps goal is to bring more information with him at your meeting in September? That would be good to know in advance! It is nice that they have these meetings monthly though, especially once you start the drug so you can compile questions to ask the rep when they visit, if they aren’t urgent requiring a call beforehand of course.

      Goodluck with the calls to follow up with the insurance and the drug company. It is exhausting staying on top of these things as a patient, isn’t it?

      You’re probably right re: the method of consumption for OFEV matching Esbriet. Not worth overloading yourself with information at this point until you hear back from the Esbriet team, I agree! I am on OFEV and just to note: I actually haven’t experienced too many unpleasant side effects thankfully. No problem re: sharing the information, just as something to think about. Lots of things going on here, but these forums and the people on them are important to me so I am glad I can be of some help / benefit to others.

      I hope you have a nice weekend too! I am actually looking forward to spending the afternoons indoors (it is humid here again this weekend) and working on some outstanding projects. It will feel good to get those done, and then tonight at 10:50PM I have an MRI as part of my neuro follow up from the accident. Here’s hoping that goes well!

      Thanks again for writing, and take care!
      Charlene.

  • #13961
     Raymond C. King 
    Participant

    Hi Charlene,

    Sorry I am late in responding to your last post to me. This morning I noticed I had a broken lawn sprinkler and had to dig it up and replace it. I have such a hard time doing anything anymore that it seemed to take forever. I must stop and rest every so often. It was a lot cheaper than having a lawn service do it though. It would cost $50 plus parts just to have them come out. I had some new sprinkler units that I purchased back in the years when I use to be able to maintain it myself’ but it was a lot easier then. This IPF and age is not being very nice to me on any projects.

    As for getting more info from the rep on our next visit with him, I don’t think we will as before we left the last meeting, he showed us what he was going to cover on his I-Pad and it was just items and graphs I have seen on their site. I guess his meetings will gain us something later, I hope.

    Thanks for the “Goodluck” wish on the follow up with the insurance and drug company. I think I’ll need it as I am dubious about even hearing anything. They aren’t very fast with any reactions. I’ll keep the you and the forum provided with any info I find out.

    This topic on Esbriet and OFEV do seem to be very busy and very helpful and informative. Your action has really helped.

    Sorry it is so humid there that you aren’t looking forward to going someplace and enjoying this weekend. We were supposed to get some rain maybe today and tomorrow but so far nothing seems to have worked out. The clouds have all moved out and now they say it will just be hot and dry tomorrow. We haven’t had anything but a trace of rain here this month. It is so dry that they are afraid that if any storm clouds come in, we might get some lightning with it and just cause more fires. We have had so many fires around the state. We need something to put out the fires clear the air.

    I do hope your MRI comes out well today. Please keep me posted on the results. You are lucky they do things like that on a weekend there. Most places here in the US everything is closed on a Sat or Sun. Enjoy the rest of your weekend anyway.

    I really enjoy hearing from you and reading your replies and other posts.

    Take care,
    Ray King

    • #13964
       Charlene Marshall 
      Keymaster

      Good Morning Ray,

      No problem at all, thanks for getting back to me. I enjoy hearing from you as well!

      Hope you got your sprinkler issue all sorted out. I can certainly relate to the length of time that it takes to do anything physical now, and I’ve actually had to hire someone to do my lawn & yard maintenance for me as this is no longer something I can do, especially in the heat of summer. I’ve turned a lot of my frustration from not being able to do my outdoor projects, to more indoor tasks and have recently begun home decor crafting again. I used to do this a lot, and then got out of it for awhile when life just became too busy but it’s been a gift being able to get back into it again. It’s also even provided me some financial relief because people are buying some projects that I’ve made (see picture of a new sign I’ve made this weekend). Anyway, sorry I digress…

      Thanks for keeping us (forum and I) updated on any progress you make with the Esbriet rep and the insurance company. Gosh I wish this whole process wasn’t taking so long for you!

      The weekend actually turned out to be ok temperature-wise, but it has still been a quiet weekend for me which I enjoy. It rained on Friday night to the point where I had to pull my car over because I couldn’t see anything. It was really scary but it cooled things off a bit, which has been nice. Right now I am enjoying my coffee with my windows open and a fan going as opposed to the AC. It’s nice to get some fresh air into the house!

      I was actually wondering if you’re anywhere near the fires in BC and/or if you’ve had any state fires around you? My heart aches for my friends in BC. I actually have a friend who had a lung transplant not too long ago and has had to relocate until the fires in that province clear because there is just so much smoke in the air. Her pictures show orange skies, it’s very scary! Are you impacted by the smoke at all from the fires in or surrounding your state?

      The MRI went just fine. They were a bit behind, but I was in and out of the scanner which was good and they actually gave me props to use to help me avoid laying completely flat which makes me cough like crazy. All is well, and I have a follow up with the neurologist about it next Friday. Thank you for asking 🙂

      Enjoy your Sunday!
      Cheers,
      Charlene.

  • #13967
     Raymond C. King 
    Participant

    Hi Charlene,

    Good Morning to you too Charlene although I guess it is starting the afternoon where you are. It’s only a after 10AM here and I just ate what I could eat for a late breakfast. Since I can’t handle eating much food, I just ate a hard-boiled egg and one link of sausage. I don’t drink anything with it, so I won’t fill up on just liquid. I had my cup of coffee at about 5:30AM when I got up. I just drink one of them a day too and it goes through the stomach fast enough, so I can eat my cup of food between 10AM or a lot of times later in the day. I still love to try eating a little different food just to satisfy my crave for their taste. I miss not eating things. I really love eating all food types. I have never had a problem gaining weight and I still weigh about the same as I did when I was 17. I guess the night feeding tube keeps my weight stable and gives me the nutrients I need.

    The lawn sprinkler problem is now settled and working like it should today. I hope it stays that way as it really did me in for the rest of the day yesterday fixing it.

    It is interesting to hear about you doing home décor crafting. I saw the picture you designed and posted. That looks crafty. No pun intended. Do you do other types of designs and crafts? Do you sell a lot of those type items or just on an occasional request.?

    One of my daughters is handy at crafting things to decorate the house. She has made a lot of things we have hanging on the walls in our house. Her husband has a commercial shop where he makes doors, cabinets and other types of house items so she has access to any woods, stains or other items needed to make plaques, frames, etc. she might need. She also likes to sew things. She made curtains and bed spreads for our bedroom and once had a commercial business making hot tub covers. She also loves to paint things. We really take advantage of her. I guess I’ll quit bragging. She didn’t get her talent from me.

    Sorry to hear about your bout with the heavy rain storm causing you to have to pull your car over. That can be dangerous when it comes up all the sudden. I kind of wish we could get some rain. I must run our lawn sprinklers every day to keep the lawn from drying out.

    No, I am not close to the fires in BC. I live in the South Eastern part of Idaho. California, Oregon, Washington, Arizona, Utah, Wyoming and Nevada and Idaho have many fires going on and we seem to get the smoke funneled into our part of the state. We have and had a lot of fires around us locally that were caused by dry lightning storms and people camping. We get a lot of warnings on the news about the smoke causing respiratory problems and how to protect ourselves from it.

    Happy to hear that your MRI went well. Lying down causes me reflux and regurgitation problems when they X-ray me, so they usually prop me up as high as they can, but I can still go through the machine. I have heard where they are getting a new scanner that gives more a person more room. I hope they have it by the time I get my next CT scan.

    I hope you can enjoy the rest of your Sunday and have a good week coming? Thanks again for your responses as I really love to hear from you.

    Until next time.
    Ray King

    • #13988
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you, thanks for connecting back!

      So you must be a few hours behind me then, are you on CST? Glad you had a good breakfast, and eating as much or little as you can is important. We want to feel comfortable too! I often go through phases where I don’t want to eat solid foods at all, and instead I turn to protein shakes. Do you ever do this? I find it helps when I need to eat but don’t want to. We may have talked about this already and I don’t remember, apologies if we have! Glad you can still have your coffee though, this is another one of my simple comforts that I enjoy each morning 🙂

      Thanks for the kind words about my crafting projects! Having this has really been a saviour for me through my diagnosis. It allows me something to focus on when I need some time alone or the quiet of my own home, and it really brings me a lot of joy to try out different ideas. I’m actually participating in a craft show this weekend and bringing my homemade cards and signs to sell. I don’t always make stuff with the intention of selling it, and do take orders from people, and the extra cash is always helpful because living with IPF is expensive, especially with trying to pay down school debt. So the answer to your question is yes, sometimes I sell my products and make custom orders for people and other times I just do it for fun. I also make homemade cards, and I’ve included a picture of one of my favourites below. It really resonates with me… likely you too?

      Sounds awesome that your daughter has a talent for home decor and projects as well. Sounds like she is very talented! Did that come from your wife then (since you said it didn’t come from you)? Lol…

      So glad you aren’t close to the active fires, although its no good that you’re getting the smoke funneled in from the fires in states around you. Do you find it bothers your breathing at all? Do you have a good mask to protect your lungs when you’re outside? My friend safely relocated out of BC to protect her new lungs from the fires. It’s pretty scary stuff what is happening to our world – there seems to be fires and floods everywhere, which are complete opposite to one another!

      I hope you have a good week as well, anything coming up for you this week? I don’t have any respiratory appointments, just a neurology follow up at the hospital on Friday. Here’s hoping that goes well. The symptoms of my concussion have really died down so I’m thinking that is on the mend, and am very grateful. Otherwise, it is back to work tomorrow and waiting for the weekend where I can go to my cottage and participate in the craftshow 🙂

      Talk to you soon…. let me know if you like the card I’ve attached below. Its one of my favourites!

      Cheers,
      Charlene.

  • #13989
     Raymond C. King 
    Participant

    Hi Charlene,

    No, we are not in CST time zone, we are in the Mountain Daylight Savings Time Zone. Since it is summer time, we are advanced 1 hour earlier for convenience of the farmers, so we are on the same time as CST. That puts us just 2 hours earlier than the EST zone now. I believe you said you live someplace in Quebec, I guess not too far from NY.

    Sorry to hear you can’t or don’t eat any solid food, just protein shakes. No, I have not been drinking protein shakes. Since I can eat about a cup of solid food per day, I do like to eat some solid foods I crave Just for the taste of it, and I take no liquid with it. As I am on a feeding tube for 12 hours at night, the special liquid we put in the feeding bag is a high in protein and vitamins and supplies my nutritional needs. I do have to have my real early daily cup of coffee to wake up. The liquid doesn’t stay in my stomach long enough to cause any irritation like a food would.

    The smoke doesn’t overpower me a lot since I don’t go anyplace outside very much. The smoke that makes it into the house is annoying and causes my eyes to burn a little and gives me a runny nose and other type of allergy symptoms, but I just put up with it. It is so hazy outside from the smoke that it is sometimes hard to see the mountains around us. It is like a heavy fog. We don’t use a mask. Not many people around here do. It’s mostly people that are right in the fire areas that use them. They just recommend people to stay indoors more.

    It is too bad you friend had to leave the BC area because of the smoke. Did she live close to the Pacific? A lot of the NW of the US and different places in Canada have been having bad fires. I hope the weather gets better and they can get the fires under control and out.

    I am glad to hear your accident concussion symptoms are abating some. Did you have a lot of headaches from it?

    Its nice you are going back to the cottage this weekend and presenting items for a craft show. Is your cottage in or close to a town where a lot of people can view your products? I do hope you can sell some and get some orders for later sales to help with your finances.

    That was a real cute design on the card you had attached. The “Just Breathe” title on it really hits home for people with IPF. The bird flight and chair fit into the relaxed appearance. No, my daughters’ talent didn’t come from me, it had to be my wife. She spends a lot of time each different holiday putting things around the house that pertains to the holiday. She also spends a lot of time framing different things and hanging pictures and other decorations around the house too. We don’t have many walls in the house that don’t have something covering them. She even decorated the basement bedrooms with different things that pertain to the name she gave them. One is called the Aloha room and has a lot of Hawaiian decorations and pictures in it. Another is called the Heritage room. She has a lot of old fixtures and furniture in it. I won’t go into detail for the other rooms.

    Wow! I’ve really been rattling on for a long time, so I’ll quit and give you some relief.

    Always love to hear from you.

    Take care.
    Ray King

    • #13994
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you, and thanks for the explanation re: standard time zones. That makes sense then, we’re also on ‘daylight savings’ time now, although the days are starting to get shorter as summer is coming to a close. That always makes me sad, when it gets dark early in the evenings, although I am ready for the high heat and humidity of summer to end, I have to admit. Yes, I am about an 8 hour drive from NYC and only a couple of hours from NY state 🙂

      I can eat solid foods and enjoy them from time to time, however, I admit, as of recently I am more interest in liquid stuff like shakes and protein drinks. I do need to get back to eating solid foods per my dietitian, as I am not necessarily getting my calories and nutritional needs met by consuming just liquids. Glad you’re still able to enjoy your early morning cup of coffee – this is one of my favourite parts of my day!

      I can’t imagine what it is like to live in the areas impacted by forest fire smoke right now. That would really bother me I think! Glad it isn’t too bothersome for you, and hope you can easily find relief from the smoke that gets into your home. Yes, I am sad for my friend who had to relocate while the fires are still burning, although it is so important that she takes care of her new lungs. She was more inland BC and unfortunately  much of the forest area(s) around her was on fire. She’s come back to southwestern Ontario to stay with family until it subsides a bit, although some of Ontario is also burning I’ve heard. It is very rainy here today, and we’re supposed to have about 50mm of rain (warnings are even out) so I do hope this helps get some of the fires under control.

      The concussion symptoms were pretty bad from April – June, even though the accident was in December. I had frequent headaches, dizziness, foggy vision and was excessively tired, although that could be caused by anything I suppose. Thankfully they have subsided quite a bit, and it’ll be interesting to see what the MRI shows on Friday.

      My cottage is directly west of a very busy beach town in the summer, and is directly on a great lake. It’s amazing! They’ve done a good job advertising the craftshow, so I hope lots of people show up for it. Regardless, it should be fun as I enjoy making these items for people or even to hang around my own house. I’m also glad you liked the ‘just breathe’ card – I admit it is one of my favourites I’ve made so far! It does really resonate with people who have IPF, doesn’t it? 🙂
      Your daughters talent sounds absolutely awesome – so glad she does this, what a neat way to personalize your home!

      Thanks as always for sharing, and I hope you have a great day today!
      Take care,
      Charlene.

  • #14092
     Raymond C. King 
    Participant

    Hi Charlene,

    Sorry I’ve taken so long to respond to your Aug 21 post, but I wanted to wait to see if I would get some news from Esbriet or the doctor about me being able to take it, or if my insurance company had approved our denial reconsideration request for its coverage.

    I hadn’t heard anything from anyone so I finally I got tired of waiting and wanted to get some information, so I could start taking the free 30-day supply I got from Genentech.
    At a meeting 3 weeks ago, I had with the Genentech rep. I told him of the Esbriet instructions telling me not to take it by crushing it or taking it without food and that have a frozen stomach and take things via a feeding tube into my intestines. He told me not to start taking the drug until he had contacted the company and he would contact my doctor to tell me when and how to start. I decided to contact Genentech myself via phone and talked to their medical staff. After being transferred from nurse to nurse and then to the chief nurse without any solution, they transferred me to their pharmacy staff. There, the same thing happened. I went from 2 different pharmacist to the best one that they said would know. He said he didn’t know and said I would have to contact my Pulmonologist for instructions. I tried to contact my doctor and naturally it went to his nurse’s phone mail and said to leave a message and she would get back to me. Their office hours expired without a callback.

    I had to wait another day to try to contact the doctor, so I decided to contact my medical insurance provider to see if I was even going to be able to get their coverage since they had sent me an insurance coverage denial 2 months ago. They had said my doctor could appeal the denial. The doctor had sent an appeal reconsideration letter 2 times but each time they said they hadn’t received it, so Russell came 3 week ago and showed them how to make the appeal and that he would make sure they got to it. When I called my insurance company complaint resolution department, they said the appeal was still waiting for a personal letter from me stating why I felt I needed the Esbriet. They said it could be sent via FAX if I wanted to and that it could take up to 30-days before they would come to a decision after receiving the required personal letter. They couldn’t tell me if they had received and accepted the doctor’s drug denial appeal. They said all they had on their computer was that it was awaiting appeal. Well, I didn’t know what to put in the letter other than I wanted to live longer and that it was about one of only a couple of drugs developed to do this. I didn’t put it exactly in those terms but that is what I expanded on. I Faxed it Thursday, so I may find out in a month or so.

    Late Thursday, I did finally get to talk to my Pulmonologist’s nurse to tell her of the denial progress and what I had found out from Genentech. She put me on hold and talked to the doctor about it. She said the doctor told me to just go ahead and crush it and take it through the intestine feeding tube and to start taking it Friday, today. He said the reason that they probably hadn’t wanted it crushed and must be taken with food is that it can cause severe stomach irritation nausea and pain. I told the nurse that I hated to start taking it without knowing if I would be able to get it from my insurance company when I had used up my 30-day free sample. She said not to worry, that if my insurance won’t cover it, there were other programs that would provide it to me. She said a few of the programs were like a grant and I could get it free through them. So, today I took my first Esbriet tablet on the schedule they sent me to start on. Next, I will be able to work up to being able to take the 9 per day they want you to work up to. I guess then, I can switch to the stronger one-a-day dose that Michael Lamkin referred to. We will see how it goes.

    I hope you enjoy your weekend at your beach house this weekend and the craft show turns out great for you and you get some good orders for your crafts. Yes, the “Just breath”’ card could really resonate with people who have IPF. That was the first thing that caught my eye and thoughts when I saw it. Nice job! Great talent!

    From the mileages you gave me about your location, I see you are at a location real close to a great lake and real close to excellent beaches. I really envy you being so close to the water and those beaches. Looking at picture of some of those beaches on the Internet, it looks like people are swimming and having a good time. If I go someplace to get away it would have to be a motel, pitch a tent, rent an RV or cabin. We sold our camping trailer and boat quite some time ago. It was just too much work and expense keeping them up and I know I couldn’t handle the setup work it takes, especially now. No stamina. We have a lot of close lakes with cabins on them, but we never did purchase a cabin on them. They also sell a lot of time-shares for them, but I don’t want a long contract at my age.

    We did finally get some rain on Wednesday. It didn’t clear out much of the smoke and the weather bureau said it would just filter back in again after the storm leaves. The storm did contain a lot of lightning, so I guess it probably just started more fires and the wind spread those that were burning. They did comment that we were getting a lot of the smoke funneled in from the British Columbia fires as well as all our surrounding ones. We are about 100 miles further from the BC border than you are from NYC.

    Well, again, enjoy your beach house weekend and I hope everything turns out well for you at the craft show. Keep me posted. I look forward to your reading your replays and life status challenges.

    For now,
    Ray King

    • #14111
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Happy Sunday — I hope you’re having a nice weekend!
      No worries at all re: taking time to respond to my post. I was a bit swamped last week with work, personal stuff and medical appointments, so I actually wasn’t online a lot either. This week coming up is super busy for me as well but the week after (Sept 4th week) will give me some breathing room…. no pun intended!

      I remember the uncertainty that came from your meeting with the Esbriet rep unfortunately and I am so sorry to hear your calling around for answers did not end the way you’d hoped (ie. with answers). How incredibly frustrating for you! I would think it would be someone with Esbriet or Genentech that would know the answer to how you can safely consume the drug they produce first, so sorry you went through a number of folks who actually didn’t know the answer.

      In addition to this, it is unbelievable the hoops you’re needing to jump through with the insurance companies. I find it so bizzare that they need a letter from a patient stating why they want to taking one of the only drugs that slows down the progression of this illness. I think wanting to live longer is the only answer we can give them, and should warrant an immediate approval in my mind. I know it isn’t that simple, but I sure wish it was! Everyone deserves an opportunity to live longer, since we did nothing to cause this disease. These two calls would be enough to aggravate and exhaust me for days. I hope you did something for yourself to lift your spirits back up after these two calls…. I am frustrated for you!

      How has the start of taking them been for you? I know it has only been a couple days but hopefully the side effects haven’t been too unpleasant and that you’re able to consume them alright.

      Thanks for the well wishes re: the craftshow. It went well and I made over $100 which is nice since finances can be tough, especially when I am unwell and need extended time off of work. The weather was absolutely terrible for it though, thankfully it was indoors. It rained for hours on end yesterday, and just came down in buckets! I may have made more if the weather wasn’t a deterrent but thats okay, it was still fun and nice to show people that I can do these things for future. Some people asked if they could custom order some pieces as Christmas gifts so I am excited about that!

      Yes I’m very lucky, my cottage is on one of the most beautiful great lakes and it is blue water and clear skies for as long as you can see on a nice day. It is wonderful, very sandy (only a few rocks) and lots of space for both water craft and people to swim. I haven’t been in the lake the last few weeks though, as we’ve had a lot of rain and there are warnings out for high levels of e.coli making it unsafe for swimming. Due to IPF and a compromised-immune system, I never take the chance when there are warnings out but I know others do. Hopefully it will be lifted before the Canadian long weekend next weekend… hard to believe it is already the last  “official” weekend of summer. I’m ready for an upcoming vacation to Nova Scotia though and cooler weather, that is for sure 🙂

      How has the heat and humidity been there? Is the air quality any better from the fires?
      Hopefully it is a bit better for you even since you wrote last. Wishing you a nice rest of the weekend, and I look forward to hearing how the Esbriet has gone for you. Goodluck!

      Warmest regards,
      Charlene.

  • #14093
     paula 
    Participant

    @Ray King. Hi Ray, I have been reading your stories about trying to get on the Esbriet. While I was fortunate that my insurance company, surprisingly, approved the meds. I was able to get a grant through health well to help with the cost the insurance company did not pay. The grant ends in Nov, and I have to wait until the beginning on next year to reapply do to a financial thing.

    I digress, while taking Esbriet, it was doing its job with minimal side affect. Even the fat fairy was leaving me alone. My appetite changed dramatically. Things that I loved to eat is no longer the case. Then 3.5 months in I developed an allergy to it. They now have me on OFEV. I am not very hungry and I am still losing weight. One doctor says I need to lose weight in order, when the time comes, to be considered for a transplant. My other pulmonologist said to not to loose too much.

    Now while I was on Esbriet, before we knew that I was definitely having an allergic reaction I tired calling Esbriets nurses line. Like you, I was transferred from one line to another and in a word, I thought their help line sucked. ‘

    I hope that you are able to get some answers and hopefully get on the meds. Good luck, I am hoping for the best for you.
    Paula

  • #14094
     Raymond C. King 
    Participant

    Hi Paula,

    Thank you for your comments on Esbriet about my post.

    I will investigate the “Health Well Foundation” to apply for a grant that you referenced in your post to me. That may help me very much and that it is possible to get it even though your medical insurance approved the meds. Is your insurance company paying anything even though you got the Heath Well grant?

    I am very sorry to learn that even though Esbriet may have helped you for a short time that you digressed and had to change to OFEV.

    The weight loss side effect on top of the others doesn’t sound very exciting either. I know I can’t afford to have that as I am at the low weight size for my build. I am on a feeding tube for 12 hours at night to keep me stable and probably must be on it all day too to maintain everything. The feeding tube gets its food supply from a bag mounted on an IV stand, so I don’t have any moving range while in the feeding process without carrying the stand around with me. I must lie all night long on my back in a head elevated bed.

    You may be lucky and get the lung transplant. If you do, I hope that takes care of your problem. I am over the minimum 70-year age to be able to have a lung transplant, so it is not available for me. At my age I probably wouldn’t live through it anyway.

    I agree with you wholly about the poor medical help you get from calling Esbriet. I don’t know why they even give the Esbriet help number to us.

    I wish you very much luck with your process on coping with this disease. Reading your posts and some others, I guess I am not too far into the problems that come from IPF yet and I am not looking forward to them.

    Best of luck to you and I will be watching for your posts and replies to see how you are getting along.

    Ray King

  • #14097
     paula 
    Participant

    Good Morning Ray

    My insurance pays like 95% of the cost and the remainder is picked up by the grant money. The only month the amount paid by the insurance company were it was not at 95% was the first month of the year. That month the grant money paid I think $2500.00. Then I was in the catastrophic category with the drug plan. Hence the 95% payment by the insurance company.

    As for the weight. Boston told me I needed to lose weight to be consider, my doctor here told me not to lose too much. Go figure. I needed to lose weight. So far in less than 9 months I have lost 20 pounds.

    I know a bulk of that weight loss is because of the meds. So many things I used to love I simply have no desire to eat. Bacon was the first thing to go. I am lucky if I can get a slice in now. Last night, pizza came off the list. Had a small slice on Thursday and it was all I could do to eat it. Just does not appeal to me any more. Every once in awhile I get a case of the hungry horrors but not often.

    Sorry that your on a feeding tube that must be horrible.

    My issues with the IPF have gotten worse I think in part to the stress I recently went through trying to sell one house while buying another. If my doctor knew what was going on he would have clobbered me. It is my hope that once things really settle down (still trying to set up the new house) that the issues with SOB, low O2 levels and just feeling like ick will go away. If not, it may be an indicator that the process of IPF has decided to pick up speed. Not too positive about how my pulmonary function test will go on Wed. I just hope that they do not decide that I have come to a point where I need to go on oxygen. If I do, hopefully it will only be at night time.

    Before I forget going back to the funding for the meds. As indicated I was lucky and my insurance company has been very good about approving the meds. Something evidently they have to do every year but that is handled by my doctor (I have never heard of the crap your insurance company is making you go through on the appeal process. That is crazy) But I assume (yes we all know what happens when one assumes. haha) that there are other avenues that your doctor can go to get you on the medication.

    I look forward to hearing how you are doing.
    Paula

  • #14099
     Raymond C. King 
    Participant

    Good Morning to you Paula,

    It was nice to hear from you. It sounds like your insurance company paid a lot of your Esbriet cost. All I know about my insurance plan payment is that they will cover it all but $35 per month which is the maximum amount they pay for Specialty Drugs. I guess that is because it isn’t covered by the insurance companies regular use a drug company or drug store. It can’t be processed at a drug store. I will look at the Health Well Foundation later today and see what I must do to qualify and fill out the forms. My doctor did say there were some other coverage for it and I think they did mention the Health Well Foundation.

    I guess what Boston told you that you had to lose weight before the surgery is normal. They must cut through a lot of tissue to get to the lungs and I guess they want as much regular flesh to sew together as they can to aid in the healing of the wound. It sounds like you are proceeding with the weight loss if you reduced by 20 lbs. How much do they want you to lose?

    I’m sorry you aren’t enjoying your food preferences, bacon and pizza etc. I love both too, but I can only eat a couple of bites of pizza when we get it and just a couple of pieces of bacon or link sausage without getting full. Pizza has always been one of the foods I have loved and crave for. We don’t purchase pizza much anymore because my wife can’t eat all that is left before it goes bad. She likes pizza well too and occasionally purchases just a large slice of cooked pizza and gives me a bite or two. Mainly, since I can only eat a very small amount of food once a day, she purchases frozen TV dinners and eats one of them for her meals. I can only handle a cup of food per day. That also fouls up things for going out to eat. Eating out is the main thing that people do for entertainment and social gatherings and we usually must turn down their request for dinner as I just must sit at the table or on the sidelines and can’t participate. Our kids like to take us out for our birthdays and/or other gatherings when they come to visit. Bummer! They are very tolerant about suggesting we order something in to eat. I really crave going out and eating a good steak or something, but I know I would only be able to eat a bite or so of it and then get a take-home for the rest of my meal. A lot of times, I order a different accompanying side dish that my wife didn’t order and give it to her. The meals always seem to come with a salad too and if I eat any of it, I won’t be able to eat any of the main course. Bummer again! Oh well, I guess that is the way life goes sometime. We must just put up with it, don’t we?

    Yes, the feeding tube is very clumsy to have to use. It is the result of a botched Hiatal Hernia surgery. The surgeon cut the main nerve to my stomach during the surgery and that ended up leaving me with the frozen stomach which can only now work 20 percent of its capability to pass anything that goes through it. I tried to sue the surgeon, but I was told by an attorney that that can happen maybe 10 percent of the time and is not suable. So, if your doctor ever suggests that type of surgery, take heed.

    I have read that stress can worsen the IPF effects so as you said, the stress of purchasing a new house and moving into it may have caused a lot of your problems. I hope the change goes well for you. I am glad that you are not on oxygen yet. I am not there yet either. I was on oxygen for a month after a tube relocation surgery about a year ago and it wasn’t pleasant being on the oxygen.

    I am thankful that we own our house and have lived in it for 48 years. We have contemplated on moving to a smaller house that is more handicapped accessible, but we love our home and my wife has it fixed up the way she wants it. After 48 years of collecting things, I don’t know what we would do with them. The oversized 2 car garage and basement is full of junk we don’t need or use anymore. Getting rid of them is our ever on going objective. I don’t have the energy to help and she can only do so much.

    I’ve taken up enough of your time, so I’ll close now. I will keep reviewing your posts or requests and reply as soon as I can.

    Ray King

  • #14101
     paula 
    Participant

    Afternoon Ray.

    Wow your cost once approved will only be $35 a month!!!! Oh I would love that. Right now the foundation pays what the insurance company does not, but for a few months I am going to be on the hook. Assuming I do not develop any problems with this medication. Hope not. As there is nothing else I can take.

    My meds are processed by CVS speciality. Could have gone though another company but where I want to sign for my medication, I opted for CVS as I can have it shipped to their store and pick it up there. The first month I was on Esbriet I opted to have UPS deliver it, First I had multiple delays because of weather. Then the day it was suppose to arrive around 2 PM, it did not show up until almost 7. I hate having to wait around for a delivery so it was then that I said to just ship it to the store and they can call me when it comes in. The first month it went to the store they misplaced it. Can you believe that? I laughed at them and said “Did you lose my drugs?” 20 minutes later and a lot of people they found it. They apologized for the mess up, I said not a big problem as if they could not have found it, they not me would be on the hook to replace it.

    Ah the weight. I would like to lose around 15 more. We shall see.

    So sorry about the amount of food you can eat. In some ways I am the same way. The one good thing, at least for now, is I can still have a drink at night. They had me on a med before Esbriet where I was not suppose to drink. I scolded my doctor and he said I could have a glass of wine once in a while, but there were no limitations on either the Esbriet or OFEV. Probably is not great for me, but given all of the stuff I can no longer do or enjoy, until told otherwise, I am going to enjoy my drink.

    I can only imagine the stuff you and your wife have collected in all of those years. I know we collected a lot of stuff in the 22 years I was at the house we just sold.

    Did I read one of your earlier postings that you live out in the western part of the country? Has the weather impacted how much you can go outside?

    I went for a short walk today before it got to hot. And did a little yard work. I hate not doing anything but it seems when I do, I get so tired. I assume you run into the same thing.

    Well I have to get ready to do some stuff around here before my energy level drops again.

    Have a great day. Talk to you later
    Paula

  • #14102
     Raymond C. King 
    Participant

    Good Afternoon Paula,

    I guess I shouldn’t’ complain about the $35 it will cost me if my insurance company does finally decide in my favor and allow me to get it. My health insurance company is Federal Retired Employees Blue Cross and Blue Shield and they also use CVS Pharmacy for my mail purchases of prescribed drugs, but it must be a 90-day supply when I order. They cost $10 for a Generic 90-day mail order supply. Otherwise, I can get the drugs at any local drug store for the prescribed time for a real reduced co-pay. I’m not sure how CVS Specialty Drug Co will deliver my supply if I can get it.

    I’m sorry you had a hard time with UPS on your delivery. I get angry with them when they deliver a package because they generally just leave it on the front porch. When I got our free sample from Esbriet, it came UPS, but we had to sign for it, so they rang the doorbell.

    It seems it is always hard to lose weight but easy to gain. I wish you luck in trying to lose an additional 15 lbs.

    Today, I had seen a recipe in the news paper for a shrimp/artichoke heart quiche that I felt that I just had to try to make today. I got it done but I had to stop, sit down and rest 3 or 4 times during the preparation and then cleaning up my cooking mess. I was really fatigued out of it when I finished and as usual a little nauseated, so I won’t try to taste it until tomorrow. It really stresses me out that I can no longer cook meals. I was kind of a gourmet cook prior to having the frozen stomach problem and with this added IPF fatigue, I can’t do it anymore. We have been married 60 years now and ever since we got married I had always prepared our Thanksgiving meal, but I haven’t been able to do it for the last 7 years. My wife hates to cook so she was happy I had taken over.

    I wish I could have a good drink occasionally too but with all the meds I am taking for my heart and stomach, etc. it is Taboo.

    Yes, we live in the Western part of the US. We live in Idaho. We do have a lot of fires around the state and from the surrounding states plus Canada. They produce smoke that the wind has dumped into our valley area. We are now in an extreme raspatory hazard alert warning now and warned to stay inside as much as possible. Since I don’t go outside much, most of the time it doesn’t cause me any problems other that eye, nose and some throat irritations. I can’t do much yard work anymore, so we pay to have our lawn and yard work done. We have a lawn sprinkler installed and, in the winter, we hire people to shovel the snow off our driveway and walks. We live on a large corner lot, so we have a lot of walk to clear. Also, we have a large two car cement driveway that must be cleared. I did have a lawn mower but sold it because I couldn’t handle it. We have a snow blower and my wife had taken over shoveling the drive and walks for a while until she injured her back and had to give it up. We are just getting too old for that kind of work.

    I’ll close now and get some of my pending projects done. Keep me informed.

    Ray King

  • #14109
     paula 
    Participant

    Good Morning Ray

    I forgot to address your stomach issues. Really sorry about what that surgeon did to you. But I am really surprised that the lawyer did not pursue a lawsuit.

    I understand about the stomach getting upset easily. Sometimes for me, just thinking about something is enough to get my stomach going. You will have to tell me how your Quiche ended up. Not a fan of artichokes but love quiche. At least I used to.

    To be honest I never thought about asking if if could get the EFOV meds in a 3 month supply. I am not sure it has even been approached to me. Once you get the meds approved you will have to go through a specialty pharmacy to order them. Definitely not something that is stocked at the regular pharmacy.

    I just ordered something that caught my eye that will track all sorts of things, heart rate, blood pressure but in my humble opinion more important oxygen saturation. Reading the description it mentioned that at night time if your level drops the wrist unit that looks like a fitbit thing, will vibrate to wake you up. Nudging you to take deeper breaths or change your position, which would be a problem for you with the feeding tube. (shifting positions). I will have to let you and others here know how it works out as those pesky O2 levels are kind of important to us.

    Idaho? Nice. I have a friend that lives in Montana. He is a fishing guide. And several friends who live in Wisconsin. I have always heard that Idaho is a beautiful state. With all of the fires out there, I am always worried about the people out there as well as the wildlife. We are actually getting smoke clouds (that is what the weather person said) from the fires out there.

    I used to love mowing the lawn I just do not think I could handle it anymore. Just being in the shade weeding does a number on my breathing.

    Wow 60 years of being married. That is simply awesome.

    Like you, I really enjoy cooking Thanksgiving dinner. Probably nothing I enjoy more. Nothing like the smell of a roasting turkey. Fortunately I do not have to do clean up duty. Works for me. I make it, they clean it.

    Speaking of cleaning, I need to put away my breakfast dishes.

    I hope you have a wonderful day.

    Paula

  • #14116
     Robert Morgan 
    Participant

    My pulmonologist recently switched my IPF medication from OFEV, which I took for a year and a half, to Esbriet. This was in response to a recent study that indicated taking a combination of the two was more effective at slowing the deterioration of the lungs than either alone. I am in my third month of Esbriet and have not yet been directed by my pulmonologist to start  taking it in combination with OFEV. In contrast with OFEV, I have experienced no diarrhea, normal appetite, recovery of some weight loss, and no stomach problems. The major side effect is high sensitivity to UV rays, which hit me in the second month. I did not apply sun screen as recommended and my arms became red and itchy. I have been treating them with skin moisturizing cream and cortisone cream. I have not had a lung function test since beginning Esbriet so I do not know whether by itself it is more or less effective than OFEV. A major difference in the two is that OFEV is taken twice a day,  Esbriet is three times. This is annoying because it requires remembering to bring the midday pill when away from home during the day. I am hoping that current research and trials of other treatments for IPF will be approved before my condition worsens substantially. I am monitoring this and other websites and have not seen any announcements so far.

    • #14134
       Charlene Marshall 
      Keymaster

      Hi Robert,

      Thanks so much for sharing your experience with us re: switching your anti-fibrotic medications. I know someone recently on the forums was hoping for more information this, so I am sure your reply will appeal to them. So glad you haven’t experienced any unpleasant side effects of Esbriet, unfortunately that happens often so I am really glad to hear it isn’t something you’re having to deal with. Are you on the full/highest dose of Esbriet?

      I haven’t yet heard of using OFEV and Esbriet in combination but I’d love to hear more about this. Any chance you could post the study making reference to the benefit of this? I’m sure lots of us would like to read it if you have a moment to do so 🙂

      Yes, I’ve heard lots of people struggle with UV rays and sunburns/skin irritations when dealing with Esbriet. It is a common side effect as well. Let us know how your next PFT goes if you remember to, I’d be so curious to know if the Esbriet is more effective for you (or seemingly so) than the OFEV or when your doctor suggests taking them together. This is fascinating to me as I haven’t heard of this before.

      Thanks again for sharing, I know many people will find your post informative.
      Kindest regards,
      Charlene.

  • #14117
     Raymond C. King 
    Participant

    Good early Afternoon to you Paula,

    About the stomach issues. I really did try hard to sue the surgeon and went to a lot of expense on my part to get copies of all my medical records I had from local medical services and even Mayo Clinic in Arizona that I went to two times that tried to correct the botched surgery. Before the surgery I did sign a small print, disclaimer statement stating that there is a 10% possibility that things could go wrong. The lawyers said I was just one of those 10%. They said they would fight it, but my chances of winning were nil, and I would end up paying for the whole trial. They all wanted a large contingency deposit if they tried to fight it but assured me that they didn’t feel I would win.

    The quiche recipe was quite simple and turned out well. When it was done yesterday early afternoon, I could not eat any of it and my wife had already eaten her meal earlier, so she didn’t eat any. We both tried it this morning with some Salsa. It was good, but I wish I would have used more shrimp and possibly not cooked the shrimp prior to putting it in the mix before cooking. After the quiche cooking time, 45-50 minutes, the shrimp was way overcooked and hard. The chopped-up artichoke hearts were well disintegrated and not distinguishable. It was just kind of an egg biscuit cake with some pieces shrimp in it. I much prefer a recipe I have fixed called a Seafood Casserole much better. It has eggs, Gruyere cheese, crab, shrimp, and scallops in it. I sometime put 8oz Spinach in it too, if I have it on hand. You can include mushrooms and other items if you want to.

    I don’t think my health insurance company, if they accept me, would provide the Esbriet to me in a 3 months supply. I think it would fall under the 30-day restriction a lot of medications fall under. I can only get Hydrocodone for 30 days, so I just purchase it at the CVS pharmacy, Walgreens, when I run out. I can purchase a 30-day supply of it for a little over $3 co-pay there where it would cost me $10 to go thru my insurance mail order process and must I wait 7 days to receive it.

    That monitor device you were telling me about does sound like a useful item. I think I know what you are referring to. They have several types of them listed on Amazon.com. I had purchased one just called OxyWatch at Walgreens that shows me my %SpO2 and heart rate that I use to check my levels on occasion. It is the kind they use when you go on Doctors’ visits. My oxygen level seems to be pretty good while I I am just sitting, which I do most of the time. I have no idea where it goes when I am moving or working. I guess I should check that too. The kind, I think you are talking about are a lot more expensive but show and record more info. My son and daughter have one that they use when they exercise. One of my son’s uses an automatic Cpap machine mask at night to insure he keeps breathing. If he quits breathing, it kicks in and forces him to breath. His wife had complained that he was snoring and was quitting breathing and she worried about it, so he went to the Dr and he ran some night sleeping tests and put him on it. It was a Sleep Apnea condition. He has since started exercising, running and lost a lot of weight which seems to help him a little.

    Yes, Idaho is quite beautiful in most locations. It does have some sagebrush covered flat areas, mountains, forests and farmlands. Idaho produces 90% of the nations potatoes. Our city is about 4,500 ft elevation, surrounded by mountains, so we get all kinds of weather. We are only a couple of hundred miles from the Montana border. I guess you are located someplace in Canada? You hadn’t mentioned, and I don’t remember seeing you stating your location in your posts.

    Yes, the fires are taking a toll on the wildlife. It has also consumed a lot of the forest lands too. There is a consensus that they are helping in some way though because there is so much deadfall and dead trees standing so that it is making it impossible for them to get to the fires and maybe the fires will clear out some of it. Where there has been fires here in Idaho, they have cleaned the areas and replanted the trees. Some of the areas where this has been done have regrown sections that are better accessible for logging, camping and other uses.

    Yes, 60 years of married life has covered a lot of life. It seems like now, just a couple of months or years living together without marriage is the way of life. This is my second marriage. We had one child. I was drafted into the Army during the Korean War and we dissolved it shortly after I got out. Three years later, I remarried someone else. We have 5 grown children. From the results of the two marriages, I am a great, great, grandfather. Time does fly.

    I use to enjoy cooking the Thanksgiving dinner because I could fix the stuffings of my choice. I always liked making both the oyster and sausage stuffing because I love both. I think I like eating the stuffing better than the turkey. It’s sometimes hard to roast a turkey without over cooking it which makes it dry. Over the years, I usually tried different methods to prevent it. I prefer cooking the turkey with the stuffing it. I usually don’t have very many utensils to have to wash after cooking because I like to keep them cleaned up as I am standing around waiting for something to get done. Now that I can’t stand for very long, that contributes to my not wanting to cook anymore. My wife and guests would usually take care of the table before and after we ate so they would take care of that part. My wife always wants special Holliday decorations and dishes for the occasions.

    I better close now and get some stuff done. My daughter called last night and said she and my son will be coming for a visit Monday and are staying for a week. My daughter has a 15-year-old son that has Autism and Down Syndrome and must tend him every day and wants to get away for a while. Her husband will take the week off to tend him while she is away. Their son doesn’t travel well so she or her husband must stay and take care of him while the other goes someplace. He also doesn’t hardly walk and doesn’t talk. They have had a real trial over the years with him. Their other three children are all grown and away, so they can’t help at this time. My son’s wife has a business doing care work for the elderly, so she can’t come either. So, since our son and daughter live a few miles away from each other they decided on traveling the 250 miles together and come home for the visit. It will be nice to see them again.

    I promise I will close now for sure and get this posted.

    Take good care of yourself.

    Ray King

  • #14124
     paula 
    Participant

    Interesting Robert. Although I would be surprised if my insurance company would be willing to cough up that amount of money every month and that additional cost would drain my grant money very quickly. But a moot point as I developed an allergy to the Esbriet.

    I lost a good amount of weight on the Esbriet. and am still losing with OfEV

    Please let us know how things progress when they put you on both meds.

    • #14176
       Charlene Marshall 
      Keymaster

      I am super curious about this too Paula, and hoping Robert (Bob) does well on the combination of both anti-fibrotic medications. He so kindly sent me the link to the Pulmonary Fibrosis News article highlighting how this can benefit patients with PF. Here is the link if you’re interested: https://pulmonaryfibrosisnews.com/2018/08/07/ofev-esbriet-combo-appears-safe-ipf-patients-clinical-trial/

      Hope you’re doing well 🙂
      Charlene.

  • #14125
     paula 
    Participant

    Good Morning Ray
    First i hope that you have a great visit with your daughter and son. I used to live in Plymouth, MA (home of the dumb rock) but we just bought a house an hour north which puts us dead center of my son and daughter. Each live 20 minutes away from me in opposite directions.

    Living in Plymouth was very expensive. We lived on a dirt road (actually lived on a very large pond, although given it was 135 acres I think it should have been called a lake) so at least once a year when it snowed we could expect to be trapped on our road. With my health issues the last thing we wanted was to have an emergency and be unable to get out. Additionally it was harder for the kids to come down quickly. Which I am sure your all to well aware of those issues.

    Charlene lives in Canada.

    The monitor I just got you wear on your wrist and it informs you all day long what your levels are. Like you I have one of those things similar to what they use at the doctors but this thing, if I can figure it out will tell me no matter where I am what is going on. Given my numbers have been lousy lately I may not want to know my numbers. This thing cost me $50. Which was not too bad especially if it does what it is suppose to. It was suppose to take a week to get here but came in 2 days. The box had prime written on it. I am not a member of prime and they better have not charged me prime rates.

    Well time to grab something to eat so I can take my meds.

    Enjoy your visit with your son/daughter.

    Paula

  • #14132
     Raymond C. King 
    Participant

    Good day Paula,

    Thank you for telling me your physical location in the US. Rereading one of your posts, you did mention something about how hot the weather seemed to be here in the US. I guess I just spaced it.

    I know Charlene lives in Canada. She mentioned to me that she lives in Quebec near a Great Lake and about 8 hours from NYC.

    That new location where you live must put you close to Salem? About 10 years ago when one of my daughters was staying and working in Philadelphia, we went to visit her there for about a week. She took us on a tour of several states on the NE coast. When we were in NY she promised me, she would take me to where I could get a good Maine Lobster dinner. Before going to Philadelphia, we had been reading our genealogy and had found out we were a distant relative of the founder of Salem, Roger Conant. Our daughter said we would go there too as it was close to Boston where we were booked on a guided tour. While in Salem, we got to see the Roger Conant statue and get a picture of us standing by it. We also took a small tour of Salem and attended a session telling us about the Witch Trial. We didn’t end up going to Maine, but our daughter said there were a lot of good restaurants in Boston that that had Maine Lobster on the menu and we ended up going to one. She bought me a great big Lobster dinner. I had a hard time eating all of it, but I made it. That was in the good days when I could eat well and hold lots of food. Now just a couple of Shrimp fill me up.

    l know it seems to cost a lot of money to live in a lot of the East Coast locations. When my daughter was living in a house she bought in CA and lived in it for eight years, she went to work for the Military on the East Coast. She ended up purchasing a house in NJ, so she could commute to work there. The rent she was paying to live anywhere close to her work had been costing her a fortune, so she felt it was cheaper to buy one. She now lives in and works in CO where she just purchase another house there. So now, she owns a house in CA, NJ and CO. She hasn’t had any problem renting out the unused homes she owns though.

    It sounds like the wrist monitor you got is neat. Let me know the kind and how well it works for you. Maybe I will purchase one for me if you say it does what it says it will. I do have Amazon Prime and have purchased a lot of things from them. Especially around Christmas time. My kids do the same thing. They order them and have them shipped direct to us. It really saves on postage which costs about as much as what they are sending sometimes. We sometimes find out what we are getting before Christmas because Amazon may ship it in its original box without a re-box, but we know what it was for anyway.

    I better close now and try to help my wife get the house ready for our kids visit later today. If I ask my wife what I can do to help, she always says “nothing”, but I know she can use some help.

    Until later.

    Ray King

  • #14139
     paula 
    Participant

    Afternoon Ray

    I have never been to Salem. Would love to go one day. Its close to 2 hours north of where I am. Before we move we were less than 10 minutes from the bridge to go over to Cape Cod. Now I am a stones throw from Rhode Island.

    Yes housing is very expensive here. But I think a lot of it balances out. I remember how cheap the houses were in Alabama but then the pay scale was much less than up north. And they had a ton of taxes. State, local. and in some areas country tax.

    I am trying to get the O2 thing to work properly. I have been in contact with the company and hope we can get this straighten out as I think its a cool thing. Right now though the O2 levels are way off. Keeps telling me at various times of the day that my saturation number is 99. I have not been that high in over 1 and a half years. I am usually in the 80s to low 90s

    You children should be there now, so I will sign off. You have a great visit. Talk to you later

    Paula

  • #14140
     Raymond C. King 
    Participant

    Hi Charlene,

    We did have a nice weekend, thank you. We were just getting things straightened up for a couple of our kids visit starting later today. They will be staying for a week.

    I’m sorry the weather was so stormy while you were at the Craft show and you didn’t have all the participation that you could have had if the weather had been better. But, I am very happy to hear that your entrance in the craft show came out so well and you even got some Christmas orders. I’m sure the money you made will really come in handy for you. Did you have and give out any business cards or brochures?

    I’m also sorry you couldn’t be able to take advantage of the swimming etc. while at the cabin. I do remember seeing something in the news about E. coli in some waters causing a problem for swimmers. I don’t remember where it was happening though. Florida was closing some of its beaches because of Algae in the water causing health problems. That wasn’t where you are for sure but there seems to be a lot of problems in the various areas causing people not to be able to use the popular beaches. California had a lot of dead fish cluttering some of their beaches keeping people away. Maybe next year it will be better.

    Yes, the warm Summer recreation time is closing. I noticed that our local Aquatic swimming pool closed Sunday. The participation had really gone down since school started.

    You mentioned you were looking forward to a vacation in Nova Scotia through the cooler weather. I’m not looking forward to Winter coming either. It is about time for me to be looking for someone that I can hire to clear the snow off our driveway and walks. We had someone contracted last year but I’m not sure he will be doing it again this year. He was fast and good. I have a snow blower but neither of us has the health to do the work. It still requires a lot of shoveling in some areas and since I couldn’t do it my wife tried a couple of years ago and injured her back.

    We still haven’t had much of any thing we could call a good rain except one day last week. It was a lightning storm and didn’t last very long to wet up much or clear the smoke from the fires. The lightning just started some new ones and the winds spread the burning fires. It is forcast to cool down more this week, but no rain expected.

    I just received a call that the house roofer was coming to start re-roofing our house Thursday. Guess we will be getting a lot of noise for a few days then.

    I guess I’d better close now and get ready for my son and daughter’s visit this week. They called about an hour ago and said they were about two hours away.

    Take care and enjoy your days.

    Ray King

    • #14175
       Charlene Marshall 
      Keymaster

      Hi Paula and Ray,

      It is so nice to see the conversations taking place between you both, and the experiences you share that are similar. I know I always benefit from connecting with others who have shared experiences, so it is nice to see this taking place on the forums 🙂

      You are both correct – I am in Canada, but closer to the Quebec boarder in Ontario!

      How is your week going with your kids visiting Ray? That is nice for you and your wife and I hope you’re enjoying their company. Glad you had a nice weekend as well and thanks for all of your kind words regarding the craftshow. Your idea of business cards and/or brochures is a good one, and I should consider it especially as Christmas gets closer. I didn’t do any in advance of the craftshow this time, as everyone at my cottage park knows me but in future shows that I do where participants don’t know me, this is a good promotional idea. Thanks!

      I saw the fish issue on the California beaches, that was really scary as I wonder what pollution(s) could have caused such an issue with so many fish. Yes, our beaches being a great lake are subjected to run-off from the farmer’s lands and when it rains significantly, it can often pollute the water. We’ve had so much rain here lately that the run-off is pretty intense, causing high levels of E.Coli in the water. With a chronic health issue, I never take the chance of swimming in potentially contaminated waters. Thankfully the warnings don’t usually last too long (a couple of days) so I’m hopeful it will be lifted by this coming weekend.

      Are the kids already  back to school where you are? They return next week for us.

      Yes, I am so excited to vacation in Nova Scotia in two weeks! It is still warm, but the air is cooler and I’m looking forward to that. 20 degrees with no humidity is much more pleasant than the 38 degree humidity Ontario is having right now. It will be a nice break, and I love to be by the ocean too! I’m also not looking forward to winter weather though, I really don’t like the freezing cold and we’ve had terribly cold winters the last few years. Securing someone for snow removal is something I have to do as well and should get on that soon, as I don’t like waiting until last  minute to organize these things.

      Hopefully we send some of the rain here to you guys, it sounds like you need it there and we’ve had about enough now. I hope the roofing goes well this week also!

      Enjoy your time with your children, and hope you’re having an  nice week.
      Cheers,
      Charlene.

  • #14187
     Raymond C. King 
    Participant

    Hi Charlene,

    I just got a little extra time while my kids are visiting to catch up on some of the questions that you posted to me. My wife took them shopping which she loves to do, and she knows that I hate shopping and can’t walk and stand that long. So, I stayed home.

    Thank you for the information on where to find the information on taking two different drugs for the IPF. In a way it is exciting and in another, kind of a worry. I’m having problems enough trying to get my insurance to cover just one of them.

    Now that I mention on getting Esbriet coverage from my insurance company, yesterday,

    I received a phone call from Genentech (Esbriet) wanting to know if I wanted a refill of the free sample of Esbriet. I was kind of puzzled as I still had not received any notification from my insurance company that they would cover some of the RX cost. I explained that to them and that since I only started on them last Saturday, I wouldn’t need any more for a while. They said they would be calling me every 2 to 3 weeks to see if I needed the refill. I told them that if I did receive the insurance company OK that they would probably be filling my doctor’s RX submission, so I could keep getting them. They said, it didn’t matter, if I was running out, they would send me 30-days more of it. I asked them how much that would cost, and they said it would be free and if my insurance never did end up covering it, they would continue to send it to me free if. I asked what their name was again, and they said, “Genentech Access To Care Foundation’. So, I guess I will quit worrying about whether my insurance will provide it for me after they sent me the denial and I have been awaiting their decision on my coverage denial appeal. If I could get it free through the Genentech ATC Foundation, why should I want to pay the $35/Month it would cost me through insurance? Genentech said they wanted to help rather than let me die by not getting Esbriet. What a surprise to finish my many weeks of worry. I’ll let my Pulmonologist know about the results when I have my appointment in September.

    Paula and I did get a little personal information from each other about our IPF problems, monitoring aids, and geographical locations from each other. After reading about how much some of you IPF forum participants are having at the different stages of this disease, it kind of makes me realize that so far, I should quit complaining as I don’t really have the real bad problems yet to complain about.

    Yes, the local lower schools started this week and they started at the local University the previous week. It seems they start school earlier and earlier each few years. I guess it won’t be too long that kids start attending school all Summer too. I think the Summer break was started way back when the kids use to have to help on the farms. That period has long passed as we seem to be getting less farms and farmers and farmers are using more and better equipment. A lot of our farm lands are changing to housing sub-division areas.

    Good luck at finding someone to take care of your snow removal chores this Winter when you are enjoying the ocean beaches in Nova Scotia. Do you stay there the entire Winter? What do you do for a place to stay in while there?

    I wish you could send us some of the rain you are getting, as you suggested. I see on the news now though, you are back up with the hot temperatures again. We are starting to get lucky and our temperatures have dropped to the low 80s and the nights in the upper 30s and low 40s. That gives us some relief.

    Well, tomorrow the roof replacement starts so it will be noisy here for a few days. They are removing the old roofing and rain gutter and replacing it.

    I guess I’ll close for now.

    Keep me posted on how things are going for you.

    Cheers,
    Ray King

    • #14229
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you, thanks for writing back! I hope I didn’t take too much of your time away from your kids, and that you had a wonderful visit? Please excuse the brevity of this message, it is pretty late here and I have an early morning but I wanted to get back to you as soon as I could 🙂

      Did they have a nice shopping trip? Sounds like your wife and I would get along, I love to shop although I am not able to do it as easily now as I once was thanks to my IPF diagnosis.

      I agree re: the hope that the combination of the two anti-fibrotic medications can bring, but I think we’re a long way off of having insurance providers approve them. As you mentioned, I know you’ve been having a tough time with getting them just to cover one drug! I also would worry about the combined side effects of the two drugs, since both of them just on their own can have very unpleasant side effects once you start them. Are you experiencing any side effects since you’ve started taking the Esbriet?

      I would be puzzled with the re-fill call as well, especially since you haven’t yet heard from the insurance company. That said, I am glad they said they would continue calling you and offering a refill because maybe you could accept the refills and store them for awhile, giving you a bit of a “buffer” while the insurance company is clearly taking their time in giving you an answer. Might this be an option for when they call you back? That is wonderful news about that company, I’d take it as a sign and just go with it and then whatever your insurance company comes back with might just be a bonus, if it is a positive response. They sound wonderful, and I’m really glad they connected with you Ray! Do you have a pulmonology appointment coming up in September that might tell you whether or not the Esbriet is helping, even a little bit?

      The kids here start back to school this week, and are likely celebrating the end of summer through this long weekend here in Canada. It is always a bitter sweet one for me as I see my family (ie. cousins) so often in the summer due to having the cottage but once we close it down in anticipation of winter, the amount of time we see each other is significantly reduced. Likely after this weekend, I won’t see a lot of my cousins until our annual family Christmas which we always have at the end of November. That’ll be here before we know it too, so I am headed to bed very shortly to get up early and go to the cottage so I can maximize the time I have with them this weekend.

      Sadly, a lot of our farm land here is also being taken over by sub-divisions and buildings. It seems like the city I live it is just expanding its geographical area like crazy!

      Oh, I am just going to Nova Scotia for a week… although I wish I could go longer! I will be back long in advance of the snow here in Ontario, but it will soon be time to start arranging that for sure. When I go out east the week after this one coming up, I am actually staying with friends who live there so I am really excited to see them and be oceanside for a few days.

      Hope the weather holds out for you this weekend, and that you can enjoy a few days of cooler temperatures! You’re right, our temps are hot, hot, hot again this weekend but it is likely the last of the high heat and humidity waves. Fingers crossed anyways 🙂

      Hoping the roofing goes well Ray and as always, thanks for writing. I hope everything is going well with you and that your visit with your kids was wonderful.

      Cheers for now,
      Charlene.

  • #14191
     paula 
    Participant

    Thanks for the link Charlene. Though given my allergy to the Esbriet I know I will not be able to benefit from taking both. Ahhhh another day in paradise. lol

    • #14228
       Charlene Marshall 
      Keymaster

      Oh right Paula, haha how silly of me! That gave me a chuckle that I didn’t seem to remember that experience for you, although I should have… I am going to blame it on being chronically under-oxygenated, as opposed to simply forgetful!

      Cheers,
      Charlene.

  • #14245
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for your post to me. I am glad to hear that you are probably now relaxing a little at your beach house.

    I’m a little late responding since I have been busy entertaining the couple of our kids that came home for a visit for a few days. They will be leaving for their homes Monday sometime.

    No, I am not experiencing any real bad effects since I started the Esbriet. But I had only started taking the 1 tablet per day last Saturday and Saturday I went to 2 tablets 3-times per day, so I haven’t really had a lot of it yet. I keep watching for some symptoms of bad effects, but I think I manufacture them in how I feel sometime and wonder it the Esbriet caused how I was feeling. The feeling doesn’t remain the next day, so I guess it didn’t cause what I was experiencing at the time.

    I guess you were probably correct in suggesting I should have just had Esbriet go ahead and send me more of the pills when they offered so I could keep them on reserve. My wife had suggested that to me after I hung up on the phone too. I guess I was just not thinking and was suffering from the shock of them telling me I could be getting them free if necessary. They did say they would call back in two or three weeks again to check. I’ll know what to tell them then.

    Yes, I do have an appointment with the pulmonologist on September 19. He will be evaluating how I am doing on the Esbriet.

    I’m sorry you won’t be able to see your cousins as much as you would like to but now school has started. School starting does seem to cause a great lull in keeping up close relations with our relatives. Summer seems to be the time when all the good family reunions take place.

    Thank you for telling me more of the details of your planned weeks Nova Scotia get away. It sounds fun and maybe you will be able to take it easy for a while. Are you going to fly there? It’s nice that you have some friends there to stay with for a while. I would imagine that cabins and other lodging there would cost a fortune?

    The weather here has cooled down some. Even though it’s a few degrees cooler it seems that you can feel the Fall in the air and it’s kind of chilly in the early morning.

    The roofers started removing the shingles from our house early Friday Morning. Late that evening they had finished preparation for shingles on about two thirds of the house and left for the Labor Day Holiday. They will be back Monday. There was sure a lot of noise from their ponding Friday. You could hardly carry on a conversation with anyone.
    They left a trash trailer in our driveway blocking our garage doors and a large tool trailer parked in front of our house. Luckily, we had moved one of cars out of the garage and parked it at on the side street of our house, so we can go places.

    I better close for now. It is early Sunday morning and the kids are still asleep. We have been taking them out to eat a lot, so we don’t have to cook a lot and can just do things to entertain them without all the prep and cleanup problems. Also, one of our daughters that lives in our city has been having them over to her house for BBQs, drinking and visiting. Her children are older, some married, so they all get together and play games, eat, drink and enjoy the evening and night. My wife and I don’t usually go because I must change my bandages and attach my food bag that hangs on an IV stand at 7pm and it would be impossible to load me into the car to go there. I couldn’t eat or drink anything anyway. I feel kind of bad that my wife doesn’t go but she has taken over as my nurse and feels she must do all that work and stay home with me. She always keeps track of my medications that she grinds and injects them in my feeding tube three times per day and makes sure my prescriptions are all refilled. I don’t know what I would do without her. Just die, I guess?

    I always love hearing from you. You are so informative and interesting to communicate with. I get a lot of information on what you post on your life and others you comment on with IPF problems. I just don’t know where you find the time to keep up with everything.

    Enjoy what is left of your weekend

    Until next time.
    Ray King

    • #14268
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your reply and I hope you’ve had a wonderful weekend. It sounds like your kids were leaving today, hope they got off safely and you all enjoyed your visit together 🙂

      Glad no side effects yet from the Esbriet, that’s good news!  I’ll keep my fingers crossed that as you increase the dose that the side effects remain at bay. Some people experience some really difficult side effects and others don’t experience any. There have been a few folks on our forums who mentioned they started on Esbriet without any issues.

      Good idea when the call back to say yes to receiving them for free and kind of “storing” them up as needed, just in case someday the option of having them given to you changes. Just watch the shelf life on them of course. My Mom is a pharmacist so she always reminds me of the shelf life of medications…. guess it wears off on me. Goodluck on your September 19th appointment. I have one right after you on the 20th!

      The weekend at my cottage with my cousins was lovely. It is so nice to spend time with them, and we even got an updated cousins photo that I’ll probably blow up to scrapbook. It has our grandma in it (my only living grandparent left) as well so I’ll frame it and give it to her at Christmas time I think. It turned out to be a really good photo.

      I am flying to Nova Scotia yes, and I’ll be in bed this time next week as I have to get up at 4 am to catch my flight. That’s okay though, it’ll mean less traffic to the airport and less people when I get there as my flight is so early 🙂 I have my appointment to get my oxygen concentrator all checked for a safe flight tomorrow, so I’ll be happy when that is done.

      Sounds like your wife is a wonderful woman Ray, and loves you very much. Just keep doing what you’re doing which is your best and none of us can ask for any more than that, right? Glad you had such a nice visit with your kids, hopefully lots of wonderful memories to hang on too. I will close now too a the last night of summer break comes to a close, I have lots of exciting things to look forward to this week…. especially vacation starting on Friday. I can’t wait, I might run out of the office …. pun intended (I can’t run anymore!) 😉

      Thank you so much for your kind words, I really appreciate them! It is so nice to know that you find our communication beneficial, as I really enjoy “chatting” with you as well. Sometimes the time eludes me, that is for sure and I’m spending more time on the forums right now than before, but that is alright. It is very therapeutic for me too!

      Take care and until next time,
      Charlene 🙂

  • #14290
     Raymond C. King 
    Participant

    Hi Charlene,

    Very nice to hear from you again.

    Yes, I am very thankful so far that I haven’t had a bad side effects from the Esbriet and now increasing the dose. Of course, I haven’t been taking it very long yet. It is possible that I haven’t had the stomach problems of nausea, pains, etc. since it never enters my stomach. I guess since I seem to be the only one that Esbriet knows about that must take it directly to my intestines that I should charge them something for being a Ginny pig trying to do it that way. Just a funny thought. I shouldn’t complain since they don’t charge me for it yet.

    It must be great to have a mother that is a pharmacist. If you have any questions about any of the drugs you are taking you can get fast results on a solution of what to do about it. We had a lot of problems with Clopidogrel, a generic for Plavix that I am taking. For almost a year I was taking it with no problems crushing it and running it through a syringe into my feeding tube. Then after a refill it seemed to stick to the sides of the plunger and feeding tube like glue and made it almost impossible to wash and reuse the syringe again. It did the same thing to a little valve I have on the feeding tube and we had to eventually throw away the valve. We contacted Walgreens about it and they said the company had changed the supplier because the company making it before had stopped making it. They tried getting other brands of it for us to try a few to see if that solved the problem and they suggested we go to another pharmacy that could mix it for us. We did but it cost us quite a lot to have it that done. Finally, Walgreens was able to get one that would work better. It still stuck to the syringe a little but with a little extra cleaning it seems to work OK. Walgreens said they would make a note on my refill record to make sure we got the one that was working for us.

    Genentech, Esbriet rep, did schedule a meeting with us again on the 11th of September, so I will have a chance to ask any questions about it before the appointment I have with the Pulmonologist on the 19th. I wasn’t sure I wanted to keep the Genentech rep again since I don’t feel I got anything new from him on our first visit, but I guess I still should give him a chance again. I wish he could be able to schedule his meeting visits in a different location than the local public library. We go to a table there, but I guess he must talk low, so he won’t disturb anyone, and I have poor time hearing and must have him repeat a lot. I even have my hearing aid turned up as far as I dare. He said they won’t let him go to people’s houses, it must be a public location. I wonder if a bar or restaurant would work? Ha Ha. Be sure you keep me posted on what you find out on your Pulmonologists Sept 20 appointment.

    Sounds like you had a good time over the weekend with you cousins. Our kids always take a lot of pictures of everything we do when they come for a visit. It seems like a lot of them are taken in front of places they had gone to while they lived here as kids and every time we would all gather at a restaurant they would get the waitress to take a picture of us. Sometimes even other restaurant guests would take them when they noticed we were trying to get a picture and would offer for them for us. They are good memories. My one daughter use to do a lot of scrapbooking and make them real fancy. She still files some of them with different decorations and captions that remind her of what was going on.

    I surely hope you enjoy your trip to Nova Scotia this next week. Sounds like you will have some good rest and fun? It must be kind of a hassle having to fly anyplace with an oxygen concentrator. I guess it is at least a way to get to fly with oxygen and they won’t allow oxygen bottles. My daughter who lives in Colorado invited us to go to her place this Christmas. She said she would pay for our tickets, but I think we will decline. With all the feeding tube stuff I’d have to take, it wouldn’t be worth all the trouble. She wants to show off her new house she had built. We didn’t want to make the trip by car in the winter. I think we will wait until next Spring or Summer to do it. It might be a 2-day drive with an overnight stay on the way, but it is a lot easer than trying to fly there.

    Our kids had a real nice visit and didn’t leave until about 5PM Monday, yesterday. It was very noisy at the house with all the roofing gonging on. They have been working 10 hours per day on the roof. They start at 6AM and don’t leave until 5pm and seem only to take about ½ hour off for lunch. They have a crew of 5 working. They even worked Monday which was Labor Day and most business don’t’ work that day.

    As I have said many, many times I love to communicate with you and I do love to hear about how you are getting along. You really have a lot of interests and seem to handle them very well with everything going on in your life. I am really worried about how to put enough IPF related information in my postings to make it an IPF topic rather than a correspondence letter, but I would hate to stop and not hear from you.

    I’ll close now and let you have a little rest.

    Take care,
    Ray

  • #14310
     Charlene Marshall 
    Keymaster

    Hi Ray,

    Great to hear from you, and hope your week is off to a good start! It is unbelievably hot here again today, so I am a bit grumpy due to the excessive heat. I tried to run a few errands today and felt like I was in a sauna….

    I’m really glad to hear you haven’t experienced the unpleasant stomach side effects of the Esbriet yet, that is good news. I had a chuckle about charging them to be a ginny pig, that made me laugh but at the same time, you totally should be their spokesperson for a different method of consuming this anti-fibrotic medication. No one else can contribute the experiences you can in terms of how you take it. Hang onto that little piece of information to use for negotiating the free Esbriet if they ever try to start charging you.

    It is great having a Mom as a Pharmacist but sometimes it gets a little overwhelming because she always asks what side effects I’m having, or highlights what I could experience even if it is something not on the label (because she knows other patients’ experiences). It can be a bit much, but for the most part I am glad to have her to ask questions to. That must have been frustrating with the drug that was sticking for you. I am glad Walgreens made a note on your file, and hopefully you get the best one for you, the easiest to consume as well.

    Your meeting with the Genentech rep is the day I fly out to Nova Scotia! Glad you have a meeting with the pulmonologist on the 19th and can ask/clarify in advance about the Esbriet questions you have. Have they said anymore about how long you will continue to get the free pills? I still think that is great news, you must have some positive karma owed to you 🙂  That is bizzare that you have to meet in a public place. I think a pub or bar would be much more fun, agreed.

    I would definitely get along well with your daughter who scrapbooks and likes to take pictures, documenting different times with family and friends. This is something that is really important to me, always has been, and now is even more important. Not that I ever want to think like this, but it will be a nice keepsake for me to leave behind should that time ever come early. I love taking lots of pictures, and it is the perfect time to take photos at our cottage right now because there were 4 generations there this weekend. My grandma bought the cottage and then it expanded from there, but she had a massive stroke in 2015 and is now wheelchair bound and unable to move one side of her body. As a result, it is very tough to have her come up to the cottage where most of our summer family memories took place. She was able to come up this weekend with a respite service provider and we took so many photos, along with her kids (my parents generation), the grandkids (my cousins and I) and some of their kids, which is the 4th generation. There are about 8 great grand kids ranging between 10 days old – 10 years old. It is pretty special!

    Thanks so much for your kind words about Nova Scotia – I fly out on September 11th, so just one more week. I truly can’t wait to go, I really need some time away. I am spending time with friends, and one of them is an RN so I feel really safe with her in terms of what I’d need health wise if something happened. She has made all sorts of preparations in advance of my visit, which I’m really grateful for. I also have a tendency to want to do everything while I am on vacation, but I know she will help me find a balance of rest and adventure. I’m so thankful to know all of them, and fear that I might get a little emotional when I see them again at the airport…. they are friends I miss so much! In terms of flying with medical needs, including oxygen, I actually find most airlines to be exceptionally accommodating! I would try calling one or two and asking about their policy on travelling with medical equipment. I went all the way down to Australia with my POC and two tanks, and was assisted the entire way by the flight crew… you might be surprised how willing the airlines are to help you, that is, if you wanted to go see your daughter’s new home in Colorado of course.

    Wow, sounds like they are working hard on the roof but probably not fast enough for your liking? I tend to get headaches easily now, likely due to my concussion, so I think I would struggle with noise that long. Hopefully they are almost done 🙂

    Don’t be worried about our communications, we can always move them to a direct message if you’d prefer? I like chatting with you too and seeing what you’re upto, our lives are so much more than just IPF-related information so not too worry. Hope you’ve had a great day and chat soon!

    Until next time,
    Charlene.

  • #14335
     Raymond C. King 
    Participant

    Hi Charlene,
    Wow! You answered back on my post fast.

    So far, my week is starting off well. The roofers told me they had finished shingling the roof Tuesday at about 5:15pm except the new rain gutters installation. They said that a different company would come and do that in a few days. At least no more pounding for a while. It looks like they did a good job so far. The only problem they left us with is they had to move the DISH TV antenna while they put the singles on in that area and although they said they tried to put it back exactly in the same place when they finished, we are not getting a TV signal. When I use to have my own dish type antenna years ago, I know you can only be off a fraction of an inch with directing it to pick up the satellite signal. I installed it myself then, but it was a great big 8 ft dish and this one is a small 2-1/2 or 3-foot antenna. That was way back in 1973 when I installed my own antenna and it was big and heavy. I did it from a kit I had ordered, and I had the TV test equipment because I was doing part time TV repair work then. It is no big deal to align to the satellite, so it shouldn’t take DISH very long when they come out. Meanwhile it seems kind of empty not to have TV to watch. I guess I’ll live, at least that is what my wife keeps telling me.

    I’m sorry it is so hot and muggy for you guys on the East Coast. Our weather has really cooled down and in the 40s at night and in the low 80s in the day. We do need some rain though as it is very dry. Maybe your weather will cool down some soon and you won’t be as grumpy as you say you are. I doubt you were very grumpy. You seem like you have a very pleasant mild temper and easy going from your posts.

    I thought I wasn’t getting a bad result from the Esbriet, but I think I am having a little problem from dizziness just after I take it and it lasts for about 15 minutes. Maybe it’s just because I have ground up the pills and it hits my system all at once. It said it wasn’t crushable. As I said earlier, you are lucky you have a Pharmacist mother that can help you diagnose any symptoms you might have and tell you how serious they may be. I must try to call my doctor or one of the Genentech nurses. I’ve heard their nurses aren’t much help.

    No, Genentech didn’t say how long they would be giving the Esbriet free. When they called I told them I had taken my time at starting the free sample they sent me because I wasn’t sure if my insurance would supply them and I didn’t want to start them if they weren’t. All they said was if the insurance didn’t supply them they would continue to send them to me. I ask how much they would charge me for them and they said it would be free because they wanted to make sure I was taking the pills that would help me. That is not the exact phrase they used but that was what they implied.

    I’m sorry your Grandmother had that massive stroke and must be wheelchair bound. At least you got a good visit with her and your relatives there. My mother was one of 16 children, so we always had a lot of real good memorable family reunions as time went on. My mother had massive stroke that paralyzed her whole left side and was bed ridden for over a year before she died from it. Her husband set by the bed they had at home with her 24/7 all that time to turn her over so she wouldn’t get bed sores and give her medications and food all that time. She died on the way while she was being driven from Idaho to Los Angeles, California to another home that they owed there. Strokes can sure cause a lot of problems.

    Well, it won’t be much longer when you head for a good rest in Nova Scotia. I noted on the weather forecast last night that a hurricane was headed for the East Coast area next week and although it wasn’t predicted to make landfall, that the water was going to be rough all along the coast. It showed it being just a little South of Nova Scotia on the 12th. I hope it doesn’t spoil you’re getting to go to the beach there. Maybe it will move away fast.

    I’ll try to cut down on my constant posts to you, so you can enjoy your life a little. I really don’t like to take so much of your free time by my constant posts to you. I’m kind of selfish I guess.

    The local DISH TV dealer did come by at about 3:30 PM yesterday and in about 10 minutes had or TV service back, so I guess I will be able to live a little. Rough to be so dependent on TV.

    Will close for now and get this off to you. I know you are going to be busy on your trip preparation so don’t worry about trying to get a reply to my questions real fast. I really do enjoy corresponding with you.

    Until later,

    Ray

    • #14368
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for your reply – great to hear from you!

      My response this time wasn’t so prompt as I am preparing to go away on my trip, and instead of resting / taking it easy this weekend and packing; I took off to my cottage with two girl friends. It was a lot of fun but made for a tiring day today, that’s for sure. Oh well, I’ll rest tomorrow before my early flight on Tuesday morning. How was your weekend?

      Glad the roofing is done and hope you got a reprieve from the noise for a bit, but that is a bummer about the TV. Hopefully they have come back now and repositioned it for you. I remember at my parents place how easy it is to move the dish just a small amount, which would then disrupt the TV signal. I actually don’t have TV at my own house, I just use my laptop to watch Netflix or shows online. I rarely do that though, so it is nice not to have the added expense of cable, for me anyways 🙂

      The temperature cooled off extreme here this weekend – we actually had multiple blankets on and all the windows closed at the cottage. Can you believe that, based on how hot it was and needing the air conditioner a mere 4 days ago? The nighttime temperature last night was 8 degrees, and today the high was only 17! It is supposed to heat up again this week though, and on the East Coast where I am headed too so that will be nice because Nova Scotia doesn’t get the humidity like we do since it is so close to the ocean. I am so excited for some relaxation time, away from screens and just surrounded by people I love and who love me. It should be good, and I’ll be excited to share some details with you when I return.

      Did you get much help from the Esbriet nurses when you called? So sorry about the symptoms you are experiencing; dizziness and nausea are the worst and I hope it subsides for you soon! I am still amazed at the response of the Genentech rep, although in a good way. I hope you continue to get it free for a long time, and then when your insurance comes through, hopefully you can rely on that for even longer. That is, if the drug proves beneficial for you I suppose. I’ll keep my fingers crossed for you!

      Thanks for your kind words about my grandmother, or “grammie” as we call her. Strokes are awful, and so sorry you have experienced this in your family as well. We did have a nice time with her at the reunion, and although her body is significantly impacted by the stroke, I am just thankful that her mind is still as sharp as it always was. I’ll never forget some of the words she shared with me this weekend, and it’ll be a memory I cherish long after she’s gone.

      I’ve also been keeping an eye on the tropical storm headed for the east coast, although it does seem to still be a bit south of Nova Scotia at the moment. The weather (knock on wood it stays this way) is supposed to be beautiful while I am there, so I can’t wait. Thanks for all your kind words – it is so nice to go on vacation and know there will be people here to share my favourite parts with upon my return. I’ve scheduled some content for when I am away, as I likely won’t be online much but I’ll be back much more rested and relaxed next week I would imagine!

      Please don’t think of yourself as selfish, I really enjoy communicating with you too and chatting. It is really nice to have so many wonderful people on these forums, isn’t it?

      Oh I’m glad the TV provider got everything solved for you. Are you a movie fan Ray? If so, what are some of your favourites? 🙂

      Chat with you soon and have a wonderful week. I look forward to continuing to correspond upon my return.

      Until then,
      Charlene.

  • #14345
     Raymond C. King 
    Participant

    Hi Charlene,

    Just a quick note with no reply needed.

    In my last note, I said that I was now taking 2 Esbriet 3-times per day and that I was getting a little dizzy after taking it. Well the next day, I had even more dizziness and It also turned into vomiting 2-3 times per night and day. I called my pulmonologist and they advised me to go back to 1 pill per day and gave me an RX for Phenergan to stop the sickness. Since then, I am still a little dizzy after taking the one Esbriet pill cycle, but the vomiting quit. I am still having a little nausea all day but not too bad.

    Also, my insurance company sent me a letter stating they have now approved my denial appeal and would now cover Esbriet for me from 07/02/08 to 02/25/19. I guess after that time I will have to resubmit a new prior approval cycle for another refill.

    Have a good trip to Novia Scotia and I hope you really enjoy your time there.

    Ray

    • #14369
       Charlene Marshall 
      Keymaster

      Hi Ray!

      Sorry, I definitely replied to your longer post before I saw this one so you may have answered some of my questions already – apologies for that!

      So so sorry to hear of your experience with the Esbriet, those side effects sound awful and how absolutely disheartening for you. I hope the reduction of the drug back to one tablet has let those symptoms subside a bit? Has the RX helped as well? Glad you seem to be a bit better, at least from when you wrote this originally. Keep up your fluids, I can imagine the vomitting may have dehydrated you a little bit as well. Hopefully the dizziness subsides altogether for you. Sounds like a tough few days!

      Glad your insurance provider came back with positive news at least that is a bit of good news, huh?

      Thanks for your kind words about my trip. I leave in just over 24 hours and I couldn’t be more excited!

      Feel better!
      Charlene.

  • #14346
     paula 
    Participant

    Great news about your insurance coverage. Weird that its only for 6 months but its a start. Sorry about the nausea hope that gets better.

    • #14370
       Charlene Marshall 
      Keymaster

      Hi Paula,

      I know your reply was to Ray, but just checking in on how you’re feeling with the OFEV? Have been thinking of you! 🙂

      Charlene.

  • #14347
     Raymond C. King 
    Participant

    Hi Paula,

    Thank you for your post.

    Yes, it was very odd that the insurance coverage was for only 6 months since the medication isn’t to cure IPF but to help extend a person’s life. Maybe they are hoping I will die within the 6 months? I kind of wonder if they even know the purpose of the drug.

    I thought that the post you made about the blue finger dying incident was very funny.

    I find my skin is very dry. I think is due to the medications we are taking. My wife has been telling me that I should use some skin location on my legs and feet because my socks have lots of white flakes in them and when she does the cloths washing, the flakes get on everything else and the clothes dryer doesn’t seem to filter them out.

    It looks like you may be going to get some rough weather there this week from the hurricanes and winds. I am glad we live in a location where we don’t have hurricanes and only small tornadoes that the weather people classify as dusters. The few we have don’t seem to do much damage. Just tree limbs falling and a few power outages.

    I’ll close for now. I have been wondering how you were getting along, but I see you are now in your new house. That should take off some stress? Do you really like it?

    Good luck with life. Keep in touch.

    Ray

  • #14348
     paula 
    Participant

    Hi Ray
    Yeah the blue finger thing was funny.

    I think some of these insurance companies are clueless about many things.

    My legs and feet are very dry, where as my arms look like you would see on a 90 year old person. almost looks like the pattern you would see on a snake.

    From what we are hearing now the storm is not going to really affect us. But then again we are having a cook out next Sat and we will probably get down pours.

    Yes we are in the new house, dealing with contractors etc. I will be so glad once stuff is finally done. The new floors are going in Wed. In some ways the stress has decreased but in other ways not so much. Too many things going on, adding the increase in SOB and my low O2 numbers. My numbers rebound really quickly but no idea how long that will continue to happen.

    What I do know is something is not exactly right. Something is off. The low grade temp finally went away. Dealt with that for 2 weeks. I never know from one week to the next which food I will discover that i no longer want. I walked in on my husband heating up pizza earlier, I thought i was going to be ill. Strange. But I have doing some preparations if you will.

    I told my husband if I should have to go to the local hospital because of my breathing and knowing that they will not really be able to deal with it, they would normally send me to the big hospital in Providence RI which is less than 26 minutes away. I told him to have them send me to Mass General which is in Boston. Gave him the name of the doctor that I have seen up there, and actually expect my doctor here to have me go back and see him to keep him on top of the changes going one. I also gave him a list of the medications that I am allergic to.

    My cough has changed. Used to be very junky. Not so much now. More of a dry annoying cough and many times does not feel like I have the air to cough out. If that makes any sense. And then I have episodes where I will be talking and all of the sudden I get this congested sound in my voice like its crapping out. Kind of hard to explain. I find myself trying to cough up the congestion that seems to be there but there is nothing there.

    But enough about me. How was the visit with your children? I bet it was really nice to be able see them.

    We have to run and watch the dumb patriots probably win another game.

    Paula

  • #14404
     Donald Otis 
    Participant

    I have written about this earlier, but it bears repeating:

    I was diagnosed with IPF after a lung biopsy in November 2015. We caught it early, and my doctor at that time felt that, within the one to ten year range, I would probably fall into the later end of this.

    I started Esbriet using the 3 capsules 3 times a day in 2016. I changed to the 801 pill format this January, so that is 1 pill 3 times a day. So, same dose in a different wrapper.

    The capsules break up in the stomach, while the pills pass through, as you might expect. I find that the bulk of the nausea effects are due to the medicine being absorbed in the stomach. Going to the pill format dialed side-effects down from 100 to about 5.

    I know I am lucky. We caught my IPF early, testing shows that Esbriet works for me. But, I also lost 40 pounds due to the nausea, and basically had given up. I applied for early retirement with Social Security, because I was certain I was dying, soon.

    I started the new formulation in January. I have rescinded my retirement (yeah, you can do that; pay the government back and it’s like you never retired…). I still have Zofram (the kind that dissolves) for bad days, but those are much fewer and farther between.

    As for why I made the change – I didn’t, nor did my pulmonologist. The Kaiser Specialty Pharmacy just sent the new formula when we re-did my prescription in January.

    PLEASE! If you are still taking the capsule form of Esbriet, please talk to your doctor TODAY about switching to the brown 801 tablets.
    I am not “well”, but I am not on death’s door, either. I am actually begging you – get the pills! Do! They have changed my life!

    • This reply was modified 8 months, 1 week ago by  Donald Otis. Reason: format errors
    • This reply was modified 8 months, 1 week ago by  Donald Otis.
    • #14450
       Charlene Marshall 
      Keymaster

      Hi Donald,

      I am glad you repeated this actually, and shared your experience with us again as I’d forgotten about this and I’d like to share it with other patients I come across who are struggling with Esbriet side effects. So, I certainly appreciate you taking the time to re-write this out, and I am confident that others will as well!

      Has your doctor since prescribed the tablets to patients now, do you know (vs. the capsules?) I’m so curious to hear a physician’s take on this as well, as it makes sense to me and it sounds like a life-changing experience for you in terms of side effect management.

      Thanks again for sharing, and I hope you continue to do as well as possible for a long time Donald!
      Warm regards,
      Charlene.

  • #14410
     paula 
    Participant

    Thank you for sharing your experience with Esbriet. Not sure why the change worked so well for you but am very happy for you.

    I was fortunate with the Esbriet in that I did not have many of the side affects. I have lost weight but they wanted me to loose weight anyways (I told them to stop putting me on pregnisone and then I could lose the weight) The esbriet seemed to be doing a great job then at about the 4 month mark of being on the medication I developed an allergy to it.

    I am now on OFEV a lot of stuff is going on so its hard to determine how well its working.

    But I hope those on Esbriet might be able to have the same results that you have seen since going to the different dosage.

    Awesome that you have been able to go back to work.

    • #14451
       Charlene Marshall 
      Keymaster

      Hi Paula,

      I know your reply was to Donald, but I’m glad you chimed in as I am corresponding with someone (not on the forums) who developed a severe allergy to Esbriet just this past week as well. She has been on it for about 3 months, and I said I’d connect with you to ask how long you’d been on it before developing the allergy. I appreciate your sharing this with Donald, so I can get the information back to her. I feel so bad for her too, it sounds like the effects of the allergic reaction were very similar to yours.

      Hang in there, and I’m curious to hear how OFEV is going for you although I haven’t made it through my emails or replies yet, so I think you’ve provided me an update since writing this. 🙂

      Cheers,
      Charlene.

  • #14427
     Raymond C. King 
    Participant

    UPDATE:

    On Saturday 9/8/18 I started taking 1 tablet of Esbriet 3 times per day crushed and inserted in my intestines via a J-Tube per my Pulmonologists directions. All seemed to go well for the week other than a little dizziness for about an hour after taking each dose and some nausea later in the day. My Zofran seemed to handle the nausea well. On Saturday 9/15/18 I increased the Esbriet to 2 crushed tablets 3 times per day. I still got the nausea and dizziness problems.

    Then, at about 12:30AM Monday morning 9/12/18, I woke up with some bad stomach acid burning and I took a Tums and some water which helped me get back to sleep eventually. At about 4:AM, I woke up with extreme stomach acid burning. Again, I tried more Tums and a Gas-X and even a honey laced cough drop to try to ease the burning. About ½ hour later, I was sick and threw up a lot of real red blood. The throwing up blood continued about every ½ hour until I got up at 6AM. I went to the Hospital ER and they started giving me intervenors anti-nausea and other medicine to stop the throwing up of blood. This lasted until late afternoon and they admitted me for observation for the night.
    Tuesday, they kept up the IV medicines and observation. Late Tuesday, they decided that they were going to hold me overnight and run an esophagoscopy to see where the blood had come from.

    On Wednesday Morning they were able to do the esophagoscopy and said It appears that the stomach acid had burned a “ring circle ulcer” at the connection of the esophagus and the stomach but had now healed over so they didn’t have to cauterize it. They wanted to keep me overnight again to slowly start my normal 12-hour night food feeding I get through my intestines.

    Thursday morning, they said the gradual reintroduction of my feeding tube feed was back up to speed, so they would release me at about 10AM. At about 11AM they came in and told me they had my discharge papers ready and I could start getting dressed to go home. When I opened my hospital gown and looked under the bandage holding my feeding tube in place, I noticed that sometime during the night, evidently the night nurse had pulled my feeding tube about 6 -7inches out my belly. He had been giving me my nighttime medications and reconnecting it to the tube line to my feeding bag and evidently pulled on it. I was unable to push it back in as it had dried out and wouldn’t slide back in. I contacted the nurse who called in a gastroenterologist to look at it. He too was unable to get it to slide back in and requested x-rays to see if it had pulled out of my intestine hole. The general x-rays showed the tube was almost out of the intestine. The doctor said they would have to try to put me under an x-ray scope and run a wire through the tube to try to guide a new J-Tube back into the intestine but if the old tube channel had closed too much, they would have to surgically open my belly again and redo the tube emplacement. They did the wire and tube relocation without putting me under any anesthesia, so it wouldn’t take a long recovery time to come out of the procedure. It hurt a bit and I kind of watched them do it on their big video screen.

    After the procedure, I was able to get dressed and finish the check out at about 5: PM. I don’t like the new tube, but it is held in by a small inflatable bulb under the belly mussel layer and a ring on top of the belly that holds it in from accidently pulling out easily.

    I have not been taking anymore Esbriet since I went in the hospital. I did see a dietitian while in the hospital. She said I was way underweight, and I have not been getting all the nourishment I need and should almost double the amount of food I get through the tube. That might mean I will have to be on the feeding tube 24hours per day rather than just 12hours at night. I take it at the fastest feed rate I can tolerate at night and that takes about 12hrs to run the 4 cans of food I have been taking. I am supposed to see my Family Doctor this Tuesday and the Pulmonologist on Wednesday for instructions on the food supply and restarting Esbriet.

    Well, that’s my story on starting to take Esbriet and I’m sticking to it. Sorry to make this such a long post.

    Ray King

    • #14496
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you as always, although I wish your experience with Esbriet wasn’t so unpleasant by the sounds of things! Throwing up blood is terrifying, and I’m so sorry this happened for you. Although I’m sorry you had to go to the ER, I’m also really glad you did so that they could get the symptoms under control for you. How have you been feeling since being discharged from the hospital? I can’t believe you had such crummy luck there, including the removal of your tube. I’m glad it is back in place, and hopefully there aren’t any further issues with that; we don’t need a ton of other issues on top of all the ones IPF/PF causes…

      How did the appointments go with the pulmonologist about restarting Esbriet? Curious to hear as I know it is important for the management of IPF/PF but I sure would hope they have an idea for preventing the stomach acid/bleeding issues from ever happened again for you.

      Hope you’re starting to feel better now!
      Take care,
      Charlene.

  • #14428
     paula 
    Participant

    Oh Ray I am so sorry your going through all of this. I really hope that things start to get a little better for you. A lot better would be awesome but not sure how possible that is.

    Did they think the Esbriet was the cause of the ulcer doing what it did?

    Good luck at your next doctors appointment.

  • #14429
     Raymond C. King 
    Participant

    Hi Paula,

    Thanks for the good wishes.

    The hospital doctor said he didn’t see anything in Esbriet that would have caused the bleeding, but I didn’t think much of his opinions on anything. He is what they call a “Roving Doctor” and goes to different hospitals around the US and fills in for a couple of months when he is needed. Idaho doesn’t have enough doctors to fill their needs. When he would talk to me at the hospital all he would do is brag about his life and never did get to what might make me more comfortable. He seemed to not know anything about IPF or the drugs for it. After I told him I was taking Esbriet, he said he didn’t know what that was and never had heard of it. It wasn’t until he came back later that day that he said that it didn’t appear to him that there was anything in it that would have caused it. I don’t think he had looked at the side effects of Esbriet on the Internet. One of the side effects is Gastroesophageal reflux disease (GERD). That is caused from acid reflux. Although it wasn’t right in the Esophagus, the acid had caused the ring ulcer right where the esophagus connects to the stomach. The Gastroenterologist said the ulcer ring was in a circle around that joint opening. Since I don’t have a Hiatal valve between the stomach and esophagus anymore, the stomach acid leeks out of the stomach and burns when it hits the esophagus. I take loads of medicines to help cut down on that stomach acid but sometimes it still occurs. I’m going to talk to the Pulmonologist about what he wants me to do about taking the Esbriet again. He will probably want me to start with one three times per day again. We’ll see next Thursday what he says.

    Thanks again for your concern and sympathy. You have enough problems of your own to think about though.

    Ray

    • #14497
       Charlene Marshall 
      Keymaster

      Hi Ray,

      I think you’re onto something about not really taking the doctors words at face value for two reasons:

      1) the doctor doesn’t really sound invested in your needs if he was just bragging about himself. Also, if he goes around to different hospitals filling in, I’m not entirely convinced he would know much about our unique needs as PF/IPF patients. Like you mentioned, he said he wasn’t even familiar with Esbriet.

      2) What else would have caused the stomach ulcer and throwing up blood? If you’ve never had it before, and then after an increased dose of a difficult medication 1 week after starting it caused you to throw up blood, I’d probably guess that this was indeed the source. Of course I’m not a doctor, but that is my guess ..

      Thinking of you and hoping your appointments go well this week!
      Charlene.

  • #14431
     paula 
    Participant

    Hi Ray

    While I have my own issues I am dealing with, we are all connected by many connecting fibers. I had/have GERD before I was even diagnosed with IPF. I was more concerned that the Esbriet could have caused the bleeding.

    While I am not making excuses for the doctor, sadly many doctors do not have a clue about what IPF is much less the limited number of medications one can take to try an slow down the process. Sad but not uncommon.

    I see my pulmonologist this Tues. I have been keeping a record of what my O2 levels are during various activities. Today I took a short walk. Came back home checked my numbers and I came in at a lovely 75. 3 minutes later I was up to 89. Should be interesting to see what he does.

    At any rate. As I am sure you have noticed the group here, even though we are all dealing with our issues, we are there for each other. If nothing else, we understand what others are going through for the vast majority of issues. And many times it helps knowing others are dealing with some of the same stuff. If that makes any sense.

    Please let me know how you make out at the doctors.

    Paula

  • #14498
     Charlene Marshall 
    Keymaster

    Hi Paula,

    I love the image you painted about us all being connected by the fibers of this disease. A beautiful image, thank you and I couldn’t agree more 🙂

    I am going to keep an eye open for symptoms of GERD as I’ve never had this (I don’t think, I wouldn’t know what the symptoms are) but I know so many patients living with IPF/PF experience this. Maybe it is only a matter of time until I do as well? Not sure..

    You’re right about the doctors as well, it is sad how many people don’t know about IPF and the limited treatment options available to us. I’ve had a doctor’s face go pale and stiff when I mentioned I had IPF and they realize it is a fatal lung disease for someone my age. It can be pretty frustrating!

    How did your appointment go with your pulmonologist, and sharing your O2 readings with him/her? Hopefully all went well and that you are still feeling alright.

    Take care and thanks as always for writing!
    Charlene.

  • #14519
     paula 
    Participant

    Hi Charlene,

    Saw the doctor Tuesday. He asked how I was feeling and I told him not too good. I gave him the O2 list. He talked about the pulmonary function and I mentioned how the nurse was so concerned about one of the numbers that she did the test twice and said she was going to call you that day. I told him that I appreciated she broke protocal by what she found during the test.

    He told me the number she was referring to was my diffusion rate. The last time it was done was at 40 not great but not alarming either. This time it was 32. He said he could hear a lot of crackling in my lungs. I told him about the low grade temp I ran for over 2 weeks and the massive nose bleeds I was getting while selling our old house. I also said that I felt that the stress made my lung situation worse. He said I need to not let the stress get to me. lol easier said than done, which he knows.

    So he said it was time to put me on oxygen. He also said he was going to put me on prednisone for like 10 days to help with the coughing and he put me on an antibiotic in case I have a infection brewing.

    So then I went to take my walking test. With the nurse by my side, connected to the monitor my O2 level dropped to 84 (in the office when I first got in the exam room it would not go above 87 which was unusual for me as my number would usually rebound to 92-93 within a minute or two) and my heart rate jumped to 179. I told her I was getting light headed.

    They then had me use the O2 during the walk at 2 liters. Well my heart rate dropped to the low 90s but my O2 level did not get above 87. So then they tried me on 3 liters. Heart rate was around 88 and my O2 level was 93. My doctor then came up to me and said 3 liters it is.

    They just brought the equipment yesterday. When the guy got here I cried. Besides the concentrator (gosh I can’t spell for crap today) they gave me a portable that comes with its own wheeled thing to push it around. Thankfully today, when the nurse came and tested me I qualified for the portable concentrator. She gave me 2 small takes that have the pulse thing on it until the concentrator one gets here. I just have to fill it with a thing she gave me. At least its smaller than that other thing. I asked about the smaller light weight ones and she said they no longer get those as they break very easily.

    So that is my story. I did go out today and it was not as bad as I thought it would be. I checked my O2 level last night and I came in at 94. Today when she tested me I actually hit 98. The numbness in my toes is down greatly. And I was not coughing as much when I woke up, but that could be due to the new meds.

    Glad you liked my description of all of us here being connected by fibers of this disease. As I said before, family and friends try to understand, and on some issues they do but for the most part they don’t get it. Like when they can’t understand why your really in no rush to start using O2 all the time.

    I hope Ray starts getting some relief soon.

    GERD bites. major heartburn.

    Hope all is going well up your way. Temps are cooling down here. I suspect the temps are doing the same up there.

    • #14533
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Great to hear from you, and thanks for such a thorough update following your doctor’s appointment. Glad you were able to let them know about everything going on for you, and although it is an adjustment needing oxygen (I remember that feeling well, my friend), I am hopeful it will help you feel better! How is the management of the oxygen going at home for you? Are you on it 24/7, just for exertion or sleep? It is a lot to get used to, and I hope your oxygen provider is readily available for your questions and/or is compassionate to how hard it is starting supplemental oxygen.

      Not letting the stress of a fatal lung disease, plus other things in our life get to us is definitely easier said than done. Like you, I also know stress plays a role in our physical health and my Rhuematologist actually explained just how much this is true. I had no idea that stress could activate pain receptors in our nerve endings causing widespread pain. When he told me this, I thought it was a bit bogus but then his treatment of my nerve pain worked beautifully and it has subsided. One of the instructions for me to keep it away was to avoid stressful situations, or let go of mental stress….so I am trying, but as you said way easier said than done!

      Sorry the walk test didn’t go so well, and am glad to hear that the doctor put you on a broad spectrum antibiotic in case of an infection. Hopefully the prednisone is only short-term, I know you dislike that drug!

      Which portable oxygen concentrator did they/are they going to provide you with? Glad going out wasn’t too bad, and happy to hear your sats remained in the 90s. Overall, this should help you feel a bit better but I know it isn’t easy adjusting to oxygen. Write anytime, this adjustment was really hard for me too!

      Hang in there Paula, thinking of you! I also hope Ray starts to feel better soon too!

      Hugs,
      Charlene.

  • #14565
     Raymond C. King 
    Participant

    Hi Charlene,

    I’m finally just getting around to commenting on your last post to me. Yes, I really think that roving doctor I had while in the hospital was a nut and didn’t really know or care what was going on. When I was discharged from the hospital, I ordered a prescription from Walgreens that the hospital doctor had requested me to order and take for 30 days. It was for a special Pantoprazole (Protonix) in packet power form. After about 4 days, I called Walgreens to see if the RX was filled yet. They said it was a special order and they didn’t normally stock it and would special order it. They said they did have it in a tablet form, but they would have to contact the doctor to see if I could crush the pill and use that. A couple of days later, they called me and said the hospital doctor stated that it had to be in the packet, power form. Walgreens said that maybe another pharmacy in town might have the packets. We went to a couple of other pharmacies and they all said it wasn’t a stock item and would have to order it. Since we get most of our RXs at Walgreens, we told Walgreens to order it. Many days later, we checked with Walgreens again and they said it was in, but our co-pay would be $427 so we should tell that to the Hospital doctor to see what he would say for us to do. Well, we tried calling him and were told he was out of town and it would be a week or more before they could contact him. Since it was almost time for my Pulmonologists appointment, I decided to wait to ask him what to do.

    I did finally get to see the Pulmonologist on Wednesday. He did say he would have his nurse try to see if maybe we could get something else that was equal to the Pantoprazole (Protonix) powder packet.

    He said he still wants me to restart taking the Esbriet after about a 30-day waiting period for the ulcer to completely heal. He said that on my next appointment, about the end of October, he would be starting me out on Esbriet 1 time a day for a while. If all goes well, then go to 2 tablets 1 time per day and then 3 one time per day. Then I start the cycle of 2 tablets 1 time per day etc., etc. Then after a long time have me worked up to the 3, 3 times a day. If I never can work up to 3, 3 times per day, he thinks that maybe I can still get some benefit from whatever I can work up to. So, it sounds like it might be late next Spring before I have worked up to the normal 9 tablets of Esbriet. He didn’t mention ever taking me off Esbriet and going to OFEV. He didn’t run any PIF tests this time. He said that they would be running those tests on me 2 times per year at this point.

    Thursday, I had an appointment with my regular family doctor to fill him on what has been happening to me since my last visit. I told him about the special packet for Pantoprazole (Protonix) that the hospital doctor wanted me to take and he said he didn’t know why the hospital doctor wanted me to take that when I was already on omeprazole which was a Generic for it and it had been working for me ok before. I think it was just another goof for the hospital doctor. I don’t think he had even viewed what medications I had been taking because that was on the drug list we had given to the hospital when I was admitted to the surgery floor. I didn’t like that doctor at all. I did tell my family doctor that I had read the side effects of taking Esbriet and that it can cause GERD which might have caused the ulcer since I had been getting serious burning at night from the acid reflux before it started bleeding. He said he was unsure why Esbriet might have caused my ulcer as I am taking it through my intestines and it that bypasses my stomach. I don’t understand how the body responds to medications so, I don’t know. It was just quite a coincidence that I didn’t have that much pain from occasional acid reflux until I started taking the Esbriet.

    The Hospitals Dietitian had written a report that I needed to increase my tube feeding to almost double than what I was previously taking because I was underweight and had a low protein indication. My family doctor said that my weight wasn’t that far off from what I had been weighing and that I had seemed to be gaining a little weight since I started seeing him after the first surgery in 2011. He said my system wouldn’t be able to handle the higher feeding rate the dietitian said I should be receiving through the tube, so that was out. He said I could probably supplement to get more protein if I would try to drink a high protein shake maybe once per day if I could handle it. He recommended a good tasting vanilla or strawberry shake from COSTCO for me to buy and try. He had me come back in a couple of weeks to see how I am doing then.

    That ends what I have been doing since my last post to you. I hope you enjoyed your Nova Scotia vacation and got a little rest and recuperation and it brightened up your life a little? It did seem like you intimated you were under quite a bit of stress. I was happy to hear the hurricane didn’t seem to get that far north.

    Hope to hear from you again if you get time although I know you are busy with everything.

    Ray

  • #14570
     Raymond C. King 
    Participant

    Hi Paula,

    I know I said I would let you know how I had made out with my doctors’ appointment, but I’ve just been letting things slide a little. I had posted to you about my hospital stay and I wrote a post to Charlene today and told her about my doctor’s visits, so I won’t repost all of that all over again, so you could read that post if you want to. I don’t want to fill up the full forum with just the same thing over and over. I’m lazy I guess?

    I just got all my old pending things caught up and read some more on how things were going with you. WOW! Your doctors visit sure turned out different than mine.

    It does seem from some of your posts that you were really under a lot of stress about your new home change along with just putting up with IPF on top of it. I hope now that you have relocated and things have started to ease up a little for you?

    Some of the results of your other tests don’t sound like they turned out very good for you. I’m sorry you had to go on oxygen pretty much full time now but maybe it will diminish some of your other problems you were having. I guess with IPF it is inevitable and it will be required for all of us with IPF in time. So far, I have been lucky (knock on wood) that my 02 level hasn’t dropped although I haven’t taken any stress tests to see if it changes. The only visual test they gave me was checking my 02 finger level test and said that they checked my level while they had me talking and it hadn’t dropped. I don’t know what that proves. It seems like they would try to stress me a little more than that. I know my endurance level is way down. I seem to have to stay sitting a lot of the time and can’t walk far without having to sit down.

    You said you were coughing a lot though. I know I related in a previous post what happened that stopped my coughing but since I have started taking NORCO Hydrocodone 5/375 again, I have almost never coughed again other than what is caused from my sinuses draining. No more dry cough. It’s possible it was from the Codeine that is it that worked, I don’t know. That’s just my story and I’m sticking to it.

    Good luck with the prednisone. They tried to give me that quite some time ago and I could not tolerate it. I think they said that I had been able to take it long enough before I had trouble with it that if it hadn’t worked by then, to just discontinue it.

    I see your area got hit a little by the remnants of the hurricane and caused some flooding in some locations. Did it affect you? We are finally getting some cooler weather now and it has cleared out most of the smoke. It got down to almost freezing last night and it is in the low 70s in the day time. Most of the smoke is being shunted to the north part of the state. Also, they are starting to get a few of the fires controlled or out.

    Let me know how things are gong with you and how you like your new house, etc.

    Ray

  • #14576
     paula 
    Participant

    Hi Ray
    Yes I read your comments to Charlene, the hospital doctor and Dietitian were whacked.

    Some times when I go to my doctor he just does the thing on my finger to get my O2 levels other times we go for the walk of shame as I call it. Usually when I get in the exam room my level is around 87 and then quickly goes up to 93+. Not this time.

    O2 arrived on Wed. I was doing ok until I saw what they brought to me for the portable (yes it was a temporary one BUT). Lets just say I was using some language that I can not write here. lol. I then sat at the kitchen table and started to cry. My daughter was there and asked if I wanted a hug. Which I did. She said a lot of soothing things and reassured me I was not alone. Then she commented on how soft I was. I told her it was the Downy. She laughed and said “not your clothes silly, your skin is so soft”

    The next day I was tested for and approved for the concentrator portable. They gave me a loaner until mine come in about 3 weeks. I have been out several times and I am ok with it. What I have seen is when ever I test my levels I am in the high 90s. Have not seen those in quite some time.

    I will be off of the news meds he gave me by next weekend. Phew. Seriously hoping that the fat fairy has not been sniffing around.

    We are doing a CAT scan in Nov. I said to the doctor that way we can see if the fibrosis has increased. He said yes, but the numbers he has gotten from the function test has told him that it has gotten worse. He asked me if the OFEV was working like the Esbriet seemed to do. I told him I could not honestly answer that as when I started taking it, was when the the stress of selling/buying hit and I thought that the stress really did a number on my lungs. He agreed. Once the CAT is done, I will see him the beginning of Dec? and then we will make an appointment up at the Mass General Hospital to see the doctor whom my doctor has been in close contact with and keeps him up to date.

    You ask about the stress. In some ways it has gone down, but we have been so busy doing the stuff to the house that it has been a constant non stop around here. Plus I have been helping my daughter with the kids. Busy busy busy.

    Right or wrong I have started implementing stuff for when its necessary. I told my husband that if need be, to not put me in a nursing home. I want to stay here have hospice come in and aids to help me with what needs to be done. I actually had him put up pictures in my room of my father, grandmother and as soon as I find a good picture of my mom, I will enlarge it and put it up there. I guess I want to feel closer to them. If that makes any sense.

    We did not really get hit too bad up here storm wise. Glad the temps finally dropped. My friends in NC got slammed but they are ok. Thank you for asking.

    Well time to get dinner cooking.

    Paula

    • #14591
       Charlene Marshall 
      Keymaster

      LOL Paula, I love your response: “the doctor and dietician were whacked” … that made me laugh out loud, and I am so glad you said it, as I was thinking it. Hopefully it gave Ray a laugh too! Laughter is the best medicine 🙂

      Do either of you have pulmonary function tests done regularly to check things like your FEV, FEV1 rates, etc? This should give you a baseline between appointments of how well your lungs are working. I have them done every 3-4 months so we can cross-reference the decline (unfortunately in my case) over a set period of time. The pulse ox readings are important of course, but so are the physiological tests of your lungs like PFTs, 6-minute walk tests, etc.

      I hope you’re having a nice weekend Paula, and truly hope the weather there is as gorgeous as it is here today. I am just about to go sit outside and enjoy the cooler temps and beautiful sunshine!

      Take care and speak with you soon,
      Charlene.

  • #14590
     Charlene Marshall 
    Keymaster

    Hi Ray,

    Thanks so much for your reply, it is nice to hear from you and hope that you’re doing a little bit better. No worries at all about any delay in responding to me – I always know you’ll connect when you can 🙂

    Sorry to hear about the mishap with the roving doctor, as if you needed to deal with that on top of everything else! Sounds like a bit of a nut, and while he may have tried his best, it is so hard for patients like us who know that in general there is a lack of understanding/knowledge about IPF even among specialists, so it’s hard to accept that a “drop in/out” or covering doctor would know how best to treat us. Glad you could end up seeing your own pulmonary doctor in the end for better advice. Sorry again that was your experience, how frustrating for you all.

    So right now you’re waiting for 30 days for the ulcer to heal before you start back on the Esbriet, and you will do that after you see the doctor in October? How do you feel about that plan? I know healing needs to take place, I can understand that, but are you nervous about starting the Esbriet up again? I hope the building up to the ideal dosage again works out alright for you and that you don’t experience the tough side effects again. I’ll keep my fingers crossed!

    Sounds like the doctor is onto something about adding a protein shake to increase the calories you consume, and I do agree that the Costco shakes are pretty good. The only thing I caution with those is checking the sugar content as I always compare how much sugar is in a shake before I buy them. I think the protein power from Costco is pretty good though, as are the protein bars (Kirkland brand). I love them! They come in a back of 20: 10 chocolate chip and 10 brownie, and each only has 1gram of sugar which I appreciate. Let me know how you make out with this, hopefully it works alright for you.

    Thanks so much for your kind words about Nova Scotia. Every moment out there was something I will cherish, and I still get quite teary-eyed telling friends and family about it because I loved every moment. The sightseeing was great, but I think my favourite moments was the quality time with friends I spent out there: driving in the car singing along to music with the kids, or laughing at inside jokes, or telling stories about our lives before we met. They are pretty special, and it made it so far to say farewell and come back to a life that I’m not convinced is for me anymore. Where I live seems to value work more than family time, and I live in a chaotic city doing a job that I’m passionate about, but could be more inspired by. I am really mulling over what to do about this. I don’t think I can up and re-root my life to the east coast, or could I? Not sure, I’ve been giving it a lot of thought and wondering why I don’t live somewhere that I know would make me happy, ie. by the ocean. I am having coffee with a friend this afternoon to discuss this more, as I know she will be blunt with me and help me consider all my options before deciding what do to about this feeling of just wanting to be in Nova Scotia. Sorry that turned into a novel, but in summary: yes my trip was absolutely incredible! 🙂

    Take care Ray and I look forward to hearing back from you when you’re feeling upto it.
    Charlene.

  • #14592
     Raymond C. King 
    Participant

    Hi Paula,

    I’m not sure which part of the 02 items you said you got on Wed that you were upset about? Did you mean the regular O2 machine that generates O2 that you use while in the house with the long tube line that you must drag thru the hose and use at night, or the portable one that you can carry when not on the O2 generator type? I know that there are a lot of different types of portable O2 units you can purchase. I hope you can get one that you like.

    I have seen a lot of people around that I see locally when I go out that are using a portable. That looks more convenient than having to pull/push the tank in cart. I guess some people need more O2 than a portable unit can provide and have to use the bottle in a cart unit. I only once had to use O2 24/7 for a month when I returned from surgery a year ago Oct and that was a lot of hassle and I hated it. I didn’t get to try the portable unit though and no longer need it yet. I am happy to hear that while you are on the O2 unit, your O2 level stays up over the 90 reading that you need. I’m sure, if nothing else, it will help you both in feeling better and ease your mind about having to worry about the level dropping down too low.

    That was funny about what your daughter said about you skin being soft and you saying it was the Downy. I wish my skin was soft. It is so dry and flakes all the time. Maybe I should try wearing Downey sheets some way?

    I don’t know why you seem to worry about the fat fairy so much. From the picture you post, I don’t think you have much to worry about. I know my wife seems to always worry about her weight all the time and I sure don’t think it is necessary and it just causes a lot of extra stress. Weight seems to go up and down so why worry? I guess I’ve always been lucky all my life and haven’t had to worry about it and now, since I can’t eat much over a cup of food per day, I am being told I need to pickup a few pounds. I just don’t know how I can do it.

    I hope your CAT scan in Nov turns out in your favor. Keep me posted on how it goes. I guess it is the only real way they can tell if things are really getting better or worse other than the function test giving them some alerts.

    I have really questioned how anyone can tell if the OFEV or Esbriet is working or not as they say that it only increases the time that you have before the inevitable and doesn’t cure the disease. How do you predict how fast you are proceeding as it affects everyone at a different rate?

    I’ll bet you are still under a lot of stress getting things done with the new house and kids do take some time to deal with. Does your daughter live quite close by? I know that when you are in a new house there are really a lot of things to get done to get it the way you want it. Is it a brand-new house or just one that needs some fixing up a little?

    I would hate the thought of going into a nursing home too. I know, if nothing else, they are very expensive. We have thought about purchasing a new home that would be more usable if we were disabled and needed more handicapped amenities. We really love our house, location, and it has most everything we will ever need. It is too large for us now that the 5 kids have gone away but after living in it for 48 years, we just can’t see moving. If nothing else, we could hire someone to make the doors wider and build some ramps to get us into the house if needed or any other needed things. It is hard to find a house that already has that done and until the handicaps take issue, what do we need? Most of our house is on the ground level and the only thing we would ever have to go to the basement for is that all our laundry equipment. They have stair ride elevators that we could put in if we needed that. There are bedrooms and furnace and AC stuff there, but we could get help with that if we ever needed to. One of our daughters and family live in town not very far away and we can always call her. Most of our neighbors know us and have offered to help us out if we ever need anything.

    I’m happy the storm didn’t hit you. That is another worry you had to put up with. I guess NC and some surrounding states did receive most of the damage.

    I better close now and get some other things done.

    Take care,

    Ray

  • #14593
     paula 
    Participant

    Hey Charlene

    I believe the pulmonary function tests have been like 2 times a year. I think. But from what he said, I think, is he sees each test numbers to gauge what is going on.

    Glad you got a laugh out of my comment. Being PC is not one of my traits. lol

    Kind of cool here today. I am currently making a bean/sausage soup for later.

    Hope your enjoying the warmth and sunshine.

    Paula

    • #14607
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Thanks for your reply, and hope you’ve had a good Monday! It was so cool here today too, only 10 degrees so it really feels like autumn. As sad as I am to see summer go, the cooler weather for my breathing is definitely easier and I am enjoying the breeze through my window at night. I enjoy being bundled up with a cool breeze coming in. How did your soup turn out? Sounds delicious! Maybe I’ll get out the slow-cooker this weekend and make some butternut squash soup. I always love that 🙂

      Glad you clarified the function tests, and that he is using the numbers each visit as a baseline for you. That is good to hear, as I always gauge the progression of my lung disease based on those numbers too.

      Chat soon and hope you’re having a nice start to your week.
      Charlene.

  • #14594
     paula 
    Participant

    Hi Ray,

    I was referring to the portable O2 with the cart which thankfully they took back the next day and left a smaller portable. This one has a piece of equipment that goes on to of the bigger machine that makes the oxygen to fill the tank. The portable ones that do not need to be filled like that should be here in about 3 weeks I think. The nurse said it weighs about 8 lbs. I asked about the smaller ones that they advertise, she said they no longer use those because they break so easily where as the newer ones they are using are pretty dependable. She was saying on the salesman purposely let the unit fall down a flight of stairs. She said everyone gasped and held their breaths. The salesman laughed and said I did that to show you how durable these are. It worked perfectly fine after the fall.

    To get on the portable ones that you see people using that do not have tanks have to qualify for them. Well here they do. Your levels need to be below a certain number. The nurse told me the portables used to go up to 5 liters but not so much now. She said they are now either a 3 or 4 liter units. Anything over that you have to go to the tanks. Also if your on the portable air condensers that you need to plug in when your not using it to keep the battery charged, most of them have the pulse function which sends out puffs of air when you take a breath. On the one I currently have, if I am having a hard time, I can change it over to a constant flow. I was on oxygen last July after my biopsy for a week. I hated it. When I went back to the doctor I told her I did not need it anymore, she had me do the walk of shame without the oxygen and agreed to my not needing it.

    Downy skin. Trust me my legs/feet are very dry. My forearms look the skin of a snake. Ewwwww. I can just envision your wife watching you rub your skin with Downy to make it softer. Don’t forget the other benefit, nothing will stick to you. lol.

    Both of my kids now live less than 20 minutes from me. Before the move they were an hour away. Its nice to be able to see them like I have been able to do. My daughter just started a new job with the TSA so I get the youngest (8) off the school bus and on Tuesdays I take her to tumbling class. Keeps me on my toes and keeps me moving. Which as you know they want you to do.

    How does one know if Esbriet/OFEV is working? Well for me, with the Esbriet it was pretty quick after I got on the full 9 pills a day. I wasn’t coughing as much and did not get the SOB as much. Unless I was attempting to talk while doing something else. My friends would always say “What are you doing? Your all out of breath” To which I would say something like, tying my shoes. I was feeling better. Then not quite 4 months in I developed the allergy. As I told my doctor I honestly can not tell him if the OFEV is working given all of the other stuff that was/is going on. Being on the O2 I see a difference. I am sleeping better at night. My toes (which are messed up due to nerve damage a few years ago) do not get as numb as they used to or as cold. Depending on what I am doing, I do still get SOB but………

    Thank you for your kind words about my not looking like I have to worry about the fat fairy. That picture was taken back in the 90s. My daughter keeps telling me to get a new picture but I like it. Do you recognize who is in the picture with me?

    I fully understand why you and your wife would prefer not to move, and it sounds like what you would have to do to it to make it easier for you would not be to hard to accomplish. If possible you could probably even move the laundry up to the main floor.

    The stress on many things has come down some. Getting used to the O2 and trying to decide if I want to go back to volunteering with Hospice. I love doing it, so I probably will.

    Well I need to go stir my soup.

    I hope your feeling a little better. I often think of you and hope that things are going as well as can be expected.

    Talk to you later
    Paula

    • #14609
       Charlene Marshall 
      Keymaster

      Hi Paula,

      I know your reply was to Ray, but I had a chuckle when you shared the story of the concentrator tumbling down the stairs! I know they’re durable, however, I didn’t know they were that durable 🙂 Do you know which portable concentrator you’ll get? I have the SimplyGo Respironics machine and I have no problems with it! The only complaint is how heavy it is, but I usually lug it around on a little trolley anyways. Mine does both pulse and continuos flow, and I use the tanks sometimes too. It definitely takes some time to get used to these, I hope you’re gentle with yourself in the process. I’ve been thinking of you and hoping that the adjustment to the home 02 is going alright…

      Take care,
      Charlene.

  • #14595
     Raymond C. King 
    Participant

    Hi again Charlene,

    By the way, what does “KEYMASTER” mean in your title?

    I guess by this time of the day you are having coffee with some of your friends and enjoying their company? It’s a little after 1PM here and so I guess it is after 3PM there?

    I don’t know how to feel about the Esbriet plan that the doctor will be putting me on. It seems like it will take forever before I ever reach full strength of the 9 pills per day. I am also not convinced he felt that the Esbriet caused the stomach ulcer even though he said he was going to start out slowly. I know it must have starting to get me sick because of the vomiting I had shortly before I got the bleeding ulcer. There was too much coincidence in that while I was on the 1 pill 3 times per day, I developed the vomiting sickness and just a couple of days after starting the 2 pills per day I got the bleeding ulcer. That really makes me wonder. I did get nauseated sometimes before I started the Esbriet, but I seemed to notice that it was a different kind of nausea that I was getting. Also, I seem to worry that again, I won’t know if going on the Esbriet that it just won’t open an ulcer again. Just stress I guess.

    Thank you for the info on the COSTCO shakes. I know they might have a lot of sugar in them, but I will watch out for the sugar content. I will be paying mostly interest in the protein content if any. I know they have a Nestle Protein Breakfast powder. A dietitian a few years ago said she didn’t usually prescribe this but said I should purchase a lot of high calorie items such as milk shakes and hamburgers to build up weight. That didn’t sound right to me, but she was a dietitian.

    I do know about the Kirkland brand protein bars. My wife purchases them sometimes. I usually get to maybe eat one once in a while, but she really likes them, and they are gone before I think of trying one again. I guess I should get a case of them next time. I do have a problem with chocolate causing me some upset though and she really craves it, so I don’t eat many of the chocolate chip ones. We also buy the 60 in a box Quaker Chewy Granola (30 chocolate chip and 30 peanut butter chocolate chip) bars from COSTCO. They keep a long time and I even forget they are there because I don’t even get hungry much anymore. I guess I have just weened myself off from getting hungry unless I concentrate on it or see something that stimulates my appetite to eat something. I’ll try to keep to the protein type because I must watch the fiber.

    I am happy you got to go on your Nova Scotia trip and enjoy some socializing with some of your friends and their families there. There is nothing more stress relieving than being with friends and families. It always seems to end fast though especially when you are having fun. The days just seem to fly by and then it’s back to the old grind.

    It’s always good to evaluate your life from time to time and decide if it is time for a change or not. Sometimes a change in your life style is really what you need to make life worthwhile. Working and doing the same thing day after day needs some adjusting. Before I retired, I changed jobs and job locations several times. Each time it seemed to give me and the family a new challenge and outlook on life. It was kind of hard on the kids because of the changing schools and friends but they always seemed to get new friends and still have memories of the other places they lived.

    You mentioned moving closer to the Ocean as you really like that. Were you thinking about moving to Novia Scotia or maybe the US East costal area? You do say your mother lives close by. If you move a long way from her and the rest of your family, it is always hard to get use to, but things work out you still can visit with them occasionally. You say your Grandmother’s lake beach house is a nice place to go and you go there often. Missing that might be a little hard but people like to go other places too. I know we didn’t purchase a lake or camp condo because we would just have to go to the same location year after year and we like going other places to see new things even though in the long run it might cost more.

    One of my sons just retired and purchase large 5th wheel camp trailer so they could travel around in comfort. It is long and with tip-outs it looks like a house inside with all the amenities. He is talking about spending his summers in Alaska, but his wife says she likes the comfort of their home and it close to her family. They do spend a few weeks in the West costal area camp sites and some other mountain or US Park locations, but they say that there are fewer camp sites that allow that big of a camper. They said where they do get a reservation the nightly prices have almost doubled since last year. Also, they must make reservations almost a year in advance to get a space. They went to Yellowstone Park a few weeks ago and they said that they had to make it 11 months in advance. Also, it is hard to predict what conditions might exist when their camp schedule is to start. Maybe one of them might be in the hospital or they have house, truck or trailer problems etc. They still go places without reservations anyway and try to get a trailer space in or near a location where they are traveling. So far, they have been lucky. I guess we all need a change in our lives to try to do something to get away from the monotony of doing the same thing day after day.

    Sorry I made a book out of this again. It’s just releveling to me to chat with someone and get away from the TV once in awhile even though it probably doesn’t mean much to them. I’m selfish I guess.

    Love hearing from you and for putting up with the rambles.

    Take care,
    Ray

    • #14610
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for writing back! It is nice to hear from you and I hope the start of your week is going well 🙂

      The “keymaster” title on my profile is because I am the forum moderator, so that title basically just highlights for me and others that I can make edits / adjustments to others posts, ie. edit for grammar, or delete inappropriate content. I believe users can only edit their own content/posts, but I can remove or edit everyone’s posts so that is the purpose of the title. Hope this helps clarify!

      Coffee with friends on Sunday was lovely, and it was so nice to sit outside and just watch my dog run around freely in the cooler weather. The sun was warm but the breeze was cool, so it was a nice mix of weather and much less humid, which was welcome in my books compared to the summer weather here lately.

      I don’t blame you for feeling worried about the Esbriet, and the plan to work up to the full strength again. It does seem too coincidental that it wouldn’t be caused by that based on the symptoms that developed after increasing the dose of the Esbriet. Hopefully starting slowly and seeing how you tolerate it before increasing will help this time. I understand why you’d feel a bit stressed about it though! With regards to the nausea you’d mentioned, do you know what this was caused by? I randomly get bouts of nausea as well and this is new for me, and I haven’t done any medication adjustments lately. Maybe you can help me with the mystery of why this is happening, was yours food-related? Sometimes I think I get nauseated if I am hungry, or too full now but not sure why that would be the case when none of my medications have recently changed.

      Good idea re: the protein bars and shakes! Let me know how you make out with them, and if you find a good one that is relatively low in sugar, high in protein and actually tastes decent as well. I always mix mine up with fruit if I can, and should start having them more often as I’ve kind of gotten away from them after eating basically whatever I wanted while on vacation. This included an entire lobster we caught and cooked, which was awesome!

      I couldn’t agree more about the days going far too fast while on vacation. The week flew by, and it was a very emotional farewell and plane ride home. I’m hoping to go back out to visit though, as there is a new airline servicing the area that I live and there are roundtrip flights for under $200. This means that I could definitely go out to visit them for a weekend, and not feel guilty if the flight is only that much. I already want to plan another trip! Vacation is so rejuvenating for me for a number of different reasons, which I just actually published a column about today 🙂

      I am feeling a bit better in terms of the “post-vacation blues” and don’t feel as unsettled anymore. I guess the long of the short of it is: I am happy with my job, home, friends and family surrounding me but now I am questioning, could I be happier? If I were living by the ocean, my answer to that would be yes without any hesitation. I really admire people who moved / travelled for jobs, especially with a family, as you say you did. It’s so neat to realize growing up that home is a feeling vs. a place and although its tough to leave people you grow close to behind when you move, with technology nowadays it is so much easier to keep in touch! We’ll see what happens…. I am giving myself a bit more time to settle in after vacation to really see how I feel once I am back to the daily grind of life here. If I did choose to move though, yes, it would be to Nova Scotia. I’d need to remain in Canada for my access to Canadian healthcare and the cost of living is significantly cheaper out east than it is here. We’ll see, but if I did relocate that is where it would be for sure 🙂

      So cool for your son and his wife to have purchased a 5th wheel. That would be so much fun to move it around different areas. I know friends who do this each summer, they move it every season to somewhere different and I always thought this would be neat to do as well. This is becoming a very popular option for sure, so my guess is that is why campsites need to be booked so far in advance. We did this as part of my visit to Nova Scotia, we stayed in a 5th wheel camper the last night at their campsite and had a fire, played guitar, etc. It was truly magical! They also gave me this most beautiful necklace made of beach glass from the beach in Cape Breton and a little jewel that says: “let the sea set you free”, which suits me perfectly. Ah, I miss them all so much!

      So glad you choose to write back and keep me updated on things and that you’re willing to chat about all my antics. If I’ve learned one thing over the years is that I can be both pretty indecisive (ie. to move or not move) or impulsive when it comes to things I want. But, life is short as we know, right? When I feel something, I just kind of go with it … a bit free-spirited you could say! It’s so nice being able to chat with you about this stuff.

      Have a great day and hopefully a wonderful week 🙂
      Charlene.

  • #14596
     Raymond C. King 
    Participant

    Hi Paula,

    I’m happy you didn’t have to keep the 02 unit with the cart. That looks like a real headache to take anyplace, especially in a car and you are the driver.
    I guess they are still working on portable ones to make them more portable and still provide as much 02 as they can. There must be some tradeoff that a person can get for what you need. Hope you can get the new portable soon.

    I never thought about a benefit of dry skin in that nothing sticks to it. LOL We live in an area where the humidity is very low, so I don’t have to worry about that.

    It’s nice your kids live close to you now. It sounds like your daughter that went to work for TSA has a good Government job. What does she do for them? Does she work in NY or VA or is there a branch closer? I retired from a government transportation job. I worked for the FAA. One of my sons retired from the Air Force 2 years ago but then went back to work for them after he retired. He was an F-16 and F-35 Electronic Tech. The Govt has pretty good pay and retirement. Good luck to her.

    I know how it goes with school kids keeping you busy. It seemed like we always had to take ours someplace all the time. The boys always had to go to band practice and the girls had Drill Team, Cheer Leader or other meetings to go to.

    I don’t have the SOB issue and now after taking Hydrocodone (NORCO) 5,375 MG I no longer have the dry cough. I started taking the NORCO before I started on Esbriet, so I don’t know what to look for an improvement from using Esbriet. I guess maybe, time will tell. Maybe things will get worse for me in time and then after taking Esbriet it helps, I will know it is working.

    No, I don’t recognize the picture of the person with you in your posts. Was he someone you took a “Selfie” with? I thought it might have been your husband. I don’t have a good memory of people’s faces. I am very embarrassed sometimes when someone asks me if I know who they are when I see them. I worked at the Idaho State College for 6 years, have done TV servicing since 1956 and traveled around while in the FAA and people and faces just change so I have given up trying to remember who’s, who. The picture I use in my post was taken when we were in England in 2010 and that happened to be the picture I used for Facebook and that is what the IPF forum posts.

    We don’t have a lot of room to move the laundry from down stairs to upstairs, but I have thought about moving it to the garage. We have a 24×24 ft garage just off the kitchen and 3 steps to get to it, so I have thought that would be a possibility.

    You mentioned that maybe you are considering going back to volunteering to work with Hospice. Does it require a medical training or are you already trained in that field?

    Thank you for the health inquiry. I am feeling fine and just can’t think of anything new that I can get sympathy for. My wife has been a good nurse for me. She seems to know when I am not feeling well and reminds me that I should take something for it. I envy how much she seems to do. I just sit around, and she is always doing something. She wont even let me get up on a chair to change a battery in a smoke detector or change a lightbulb. She is always up early in the morning to take me off my feeding tube at 7AM, crushing and injecting my meds and then washing the tube area and bandaging up over the tube. Then she gives me more meds at 1PM and then it’s more meds, bandaging, and then back on the feeding tube at 7PM for 12 more hours. Then it starts all over again. Some routine? We should get use to it since it has been going on for 7 years now. Maybe someday?

    Enough said about me. Hope things start looking up for you and your family.

    I hear a big Borate Bomber going overhead. We must have another wild fire going on nearby. They land and refill at our airport. It was a bomber base during WW2, so it is big enough for the big planes.

    Until later,
    Ray

  • #14599
     paula 
    Participant

    Morning Ray

    My permanent portable will be here in about 3 weeks. They are on back order.

    The guy in the picture is not my husband. Not sure if you remember the old show Night Court. Well the guy in the picture is the guy who played Bull the bailiff. Met him at a celebrity soft ball game

    My daughters works at an airport in Worcester, MA. She could have taken a full time job in Boston at Logan but the hours were crazy and the commute and parking is horrible. She is hoping that with more airlines flying in and out of Worcester will get her a full time job. But her benefits are what they would be if she was a full time employee.

    Volunterring with Hospice does not require much in form of education or training. But I have my masters in social work, spent many years working as a advance life support EMT. I have my social work license but am letting it slide this year. I have never used it but kept it up in case, but given my health status its kind of a moot point now.

    I almost joined the Air Force when I was graduating from high school. Wanted to be an air traffic controller. My friends talked me out of it. Probably would have gotten fired with the bulk of the controllers when Regan went beserek.

    Your wife sounds like an angel. You are very lucky.

    If you moved your laundry out to the garage in the winter time would you be able to keep the area heated so the pipes do not freeze? And is the garage connected to the house where no one has to go outside to get to the laundry?

    Well I have to get going. Having a window repaired (hopefully) today and supposedly they are suppose to finish up on a few things that need to be done on the new deck. Makes me wish I held back a couple of thousand dollars when we gave him the final payment. He was not the one doing the work on the deck but he was who contracted them. He was suppose to be here last week but it rained. But he did not call to reschedule. I reached out and he said he would be here today, not raining today, actually pretty nice. So if he blows me off he will see a side of me that he probably will not like. lol

    Talk to you later
    Paula

  • #14600
     Raymond C. King 
    Participant

    Good afternoon Paula,

    On your posted picture. I kind of thought that you must have been referring to the guy with you in the picture as being a celebrity or something by the way you said it. I never did watch Night Court, so I didn’t know who he was. I watched a lot of Judge Judy and Peoples Court all the time.

    It didn’t dawn on me at the time, but I should have suspected that your daughter would be going to work at one of the airports nearby. I was just thinking of TSA home office locations. It might have a lot of good job opportunities for her. She might like Worcester Regional Airport and maybe she could get better advancement possibilities at Logan International Airport. There would be fewer people to compete with for advancement. They seem to have quite a turnover of employees here locally but maybe they have left because they advanced to other locations for better pay. We have just a small airport here, so it doesn’t compare to the Worcester Regional Airport.

    I should have guessed that you had had previous training in health care since you stated that you had been doing that kind of work before. EMT training and your master’s in social work should well qualify you. I had just brief medical training when I was drafted into the Korean War. I was trained as a combat medic at Brooke Medical Base in San Antonio, Tx. In Germany, I worked in the emergency room as an Ambulance Tech in a 150-bed hospital for 8 months and then as a Medic for an Infantry Regiment for 8 months. I was in the Army for only18 months though, so I didn’t get a lot of medical training. They let me out of the service early because the war was over, and I had to start college at that time.

    Yes, you were probably lucky you didn’t take Air Force Air Traffic Controller training and maybe ending up in a civilian ATC job after you got out. I was working for the FAA when Regan fired all the ATC people. He really destroyed the ATC program when he then hired a lot of people and gave them very little training to do the job. They have had a lot of in-flight and close call landing and take-offs incidents as a result. It is a very stressful job. Especially at the larger airports and Air Traffic Control Centers.

    My employment with the FAA was as an Electronics Technician maintaining and repairing ground to air navigation equipment such as VOR, TACAN, Microwave, Tower Equipment, RADAR, ILS (Instrument Landing Systems), etc. The only thing I had to do with Air Traffic Control was testing and repairing the equipment they used.

    Yes, our garage is connected directly to our house and is fairly well finished and insulated. We do have a furnace vent in the garage too, so it never gets below freezing in there if I wanted to move the washer/dryer there. Also, the main floor of the house is a couple of feet above the garage so if I ran the water pipes through the wall to the basement water source, it would be a real short run. I don’t think I will have to worry about anything freezing.

    I hope your contractor gets your deck finished up for you soon. I know I have had a lot of problems when I hire a contractor to do a job and he ends up sub-contracting the work to other people that never show up or do a bad job when they do. I’ve tried to always try to get a contractor that is bonded, licensed and insured with the city so if it turns out to do a lousy job, I can go back to the contractor to straighten it out. I also try to never completely pay them off until I am satisfied with the job. They seem to always ask for at least 50% down to do a job though and to get it straightened out it ends up costing more than the initial 50% I had held back.

    Better close now. Got to get something done.
    Ray

  • #14625
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for the explanation of the Keymaster title and job. I imagine it keeps you really on your toes keeping up on all of people’s posts.

    As far as the nausea, it seems to crop up without any reason that I can put my foot on, I really have no idea what brings it on. My wife keeps guessing things I have eaten or done that might have caused the onset. We’ve spent 7 years trying to figure it out and it is possible it was caused by just everyday eats or physical activity. This morning I woke up feeling sick again and my wife mixed and gave me some Finnigan for the nausea. It was given to me at 7AM and 5 hours later, it didn’t help. Under some of the IPF sites side effects listings, it states you might have bouts of nausea with IPF. That is all I can conclude about it. I will probably not try to eat anything today, so I won’t aggravate it.

    I haven’t purchased any of the protein bars or powders yet, so I can’t report anything on that. We only go to COSTCO about once a week and that might be coming up soon.

    WOW! Catching a lobster and cooking and eating it makes me hungry. I love lobster. We don’t get much fresh seafood locally. It is usually shipped in by air on special occasions or we get it frozen. The ones they ship in by air are in the 5-6oz category and way overpriced. We do have a Red Lobster Seafood Restraint here, but everything is priced sky high. I do purchase a lot of frozen shrimp at the markets and they seem to taste pretty good if you thaw them slowly and don’t overcook them. Everything seems to have the label “Previously Frozen” on it. Nothing tastes better than fresh seafood or fish.

    The $200 RT plane ride does seem to be within a nice range for the travel to Novia Scotia. With gas and motel prices being as high as they are, that would be the thing to do when you can. Especially for the rejuvenating aspect. Maybe someday you can move there?

    We did travel a lot when I worked for the FAA. We would go to different places in the 11 Western States a lot. Sometimes we would only be there a week or two. We had 3 small children at that time that were not school age yet and go from motel to motel. After 3 years of travel, we rented a house in a central location, so the family didn’t have to travel with me. Other times, I would have to go the Oklahoma City for training. The classes were usually 4 weeks to 3 months. One of our children was even born there. Then we transferred from Installation to a maintenance job. We would be at different locations, but the stay would last for several years. We would rent a home or apartment. Then, in 1970 we transferred to where we are now and purchased our present house. I have since retired from the FAA in 1981 and went back to college and trained to be a computer programmer. I worked for the Local State University and then retired from that in 1993. I have been retired ever since.

    A lot of people here purchase motor homes or trailers and go to Arizona for the Winter and then come back to Idaho for the Summer. Some even purchase permanent property in Arizona and just leave their trailers or motor homes there. We call them “Snow Birds”. We see a lot of people going south in the winter from Alaska and Canada too.

    I’ll close for now. I do have a few things I better do before it is medicine time at 1PM again. Same old things day after day. Get up, take medicine at 7, sit and watch tv, get medicine at 1, sit and watch tv, then medicine at 7PM, sit and watch tv. Then at 10PM its bed time again.

    I hope you are feeling well. I’m happy you like your job and have a lot of friends and relatives close bye to visit with. That should be conducive to a good life.

    Enjoy the rest of the day and hopefully the weekend.

    Ray

    • #14651
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for your reply and letting me know how things are going with you!

      Yes, it certainly does – a lot of work goes into replying to each person’s post personally, but I think this is what is so special about our forum in particular; the personal replies. It is also very meaningful and therapeutic for me to be able to do that as well. As a result, I am so thankful for everyone who takes time to write on these forums and share their experiences.

      I hope your nausea is a little better today Ray. I find nausea so difficult to deal with because no one can see that you’re actually feeling unwell, but you might feel awful. Another one of those “invisible” side effects of IPF. Frustrating! I get this too, and maybe it is just an IPF issue as I haven’t been able to identify what brings on the nausea either, it just seems to happen. Glad you have your wife to help you manage it, she sounds wonderful!

      Keep me posted on the COSTCO bars. I am going this weekend, so I’ll keep an eye open for the protein bars just because I enjoy them quite a bit, however, I haven’t been able to find them for quite some time here in Canada. My  brother works for a new startup company in Canada right now and their bars are flying off the shelves…. they’re called Suzie’s good fats bars. I love these, and they follow the ketogenic idea of low carbs, high *good* fats and I find my body actually craves these, even though they have very little sugar in them. It might be an option for you if you can’t find the Costco bars, they just aren’t meant to be a meal replacement, is one thing to note.

      I couldn’t agree more re: fresh lobster and seafood while on the coast. Let me tell you, I sure got my fix of it while visiting Nova Scotia. It was wonderful 🙂

      I think you’re onto something in terms of just flying there for now for a visit, as $200 RT is so manageable. Maybe in a few years I can consider a move. As much as I want to, I am thinking staying put is the best option for me right now only because I have so many factors to consider. If I can visit to feel rejuvenated then that is enough for me for now I think. We’ll see how I feel as a little time passes. Thanks for all of your kind words regarding this, and for hearing me out/letting me vent.

      All that  moving sounds exhausting, but such a great way to see the countryside as well! Kudos to you and your wife for being able to do that with such small children, that is amazing. Yes, lots of people here head south for the winter as well, especially those that are retired. My grandparents used to do this and I was always very envious, although they worked hard for the luxury to be able to do that. 🙂

      Thanks again for writing and catching me up on how things are going for you. Glad you can add ‘contributing to the forums’ to your schedule for the day, as I always enjoy hearing from you!

      Until next time, take care,
      Charlene.

  • #14629
     William Sherman 
    Participant

    Well, I guess that I’ll give Esbriet a go, got my first months supply about an hour ago. It has been quite an ordeal getting it. VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city. But despite the VA being very difficult, my Pulmonologist went to bat for me and got Humana to reconsider their 2 denial letters and approved my prescription for Esbriet; but when the Humana Speciality Pharmacy called to ship my 30 day supply, they kind of casually mentioned a Co-Pay of $2,274.59 for the month’s supply. I said not to ship it as I could not afford it. They said that they were going to turn it over to their Financial Depart to see if they could help on the co-pay. A couple of days later they called again, only now there was “Zero” co-pay. I don’t know how, but it went away.

    So tomorrow morning I finally start my Esbriet. I consider it about 90 days late, as the prescription was written back on June 27th. Wish me luck, it has been a long wait. Bill Sherman

  • #14652
     Charlene Marshall 
    Keymaster

    Hi Bill,

    It is nice to hear from you, thanks so much for writing! How are things going for you?

    Sorry to hear that the VA is giving you so much hassle for getting this life-prolonging medication. That is infuriating, especially when you have the records and documentation to show your diagnosis. Have you started the Esbriet yet? How are you tolerating it so far, if so?

    Your experience of “losing” the co-pay sounds very similar to Ray’s. I remember him telling me that he wasn’t sure how the cost to him became zero as well, but it did and I’m glad the finance department/drug rep companies are doing this for patients. Kudos to them, and I guess the most important thing is that you’re getting the medication you need. I do hope you’ve been able to start it with as few side effects as possible though!

    Please let us know how you’re doing when you can Bill.
    Warm regards,
    Charlene.

    • #15271
       Steve Dragoo 
      Participant

      Hi William,

      I may face some VA challenges fr esbriet son.  Which VA and how long ago?

      Thanks,

      SteveD

      • #15283
         Charlene Marshall 
        Keymaster

        Goodluck Steve! I hope William is able to provide some helpful tips for you.

        Charlene.

  • #14690
     Raymond C. King 
    Participant

    Hi William Sherman,

    I empathize with you on your plight to get ¬the VA to approve your Esbriet prescription. I ran into the same problem with Blue Cross and Blue Shield. I think that they are hoping we might die from the IPF or other things and then they wouldn’t have to pay for it. It is a real high-priced drug, so I can kind of see why they bock. The insurance companies delays for a long period of time are maddening when all we want to do is live a little longer.

    Good luck with your startup of Esbriet. I was only on it for about 2 and ½ weeks and I developed a bleeding stomach ulcer and had to be hospitalized and stopped taking it. Now I must wait another 30 days before I can try it again to wait for the ulcer to heal.

    I hope your pulmonologist wants you to start slowly so you can get use to it before you start the full 9 pills daily dose. I guess, after reading other peoples posts, the side effects can show up even after you have been taking it for months.

    Good luck with your progress and I hope things work out well for you.

    Ray King

    • #14691
       Charlene Marshall 
      Keymaster

      Well said Ray.
      Thanks again for sharing your experience with the Esbriet for others to learn and possibly benefit from 🙂

      Hope you’re doing alright.

      Charlene.

  • #14697
     Raymond C. King 
    Participant

    Hi Charlene,

    I’m just getting around to try answering your last posts to me. Sorry, but time just got away from me with things happening.

    Yes, my nausea finally abated. Thank you for your concern and comments about it.

    No, I haven’t tried the COSTCO protein bars you suggested. I’m keep forgetting to go to the COSTCO to get them. COSTCO is always crowded with cars. I do have a handicapped parking permit because I can’t walk far but it seems like everyone either has the permit or just parking in those spots anyway. I’ll still trying to get there sometime though.

    I did lookup the availability of the Suzie’s Good Fats Bars and the company your brother is involved with. I see the bars can be purchased at several places in the US at anywhere from about $2 to $2.75 each. There is a shipping warning that the chocolatey coating melts easy in the summer heat, so they shouldn’t sit in the mailbox for a long time. They do have good reviews and as you said have a good keto rating. Thanks, it’s worth trying.

    I’m still drooling over your lobster eating event. All I can do is dream about it though.

    I am just getting over another problem I found out that I must watch out for in the future medical and dental visits. Last Wednesday, I had a dental appointment to try to remove the cap from the furthest back right lower molar ‘implant tooth. The cap mount had been getting loose over the last few years and normally they can remove the cap, tighten the screw that holds the implant mount the cap is glued to, and then re-glue the cap back on the implants mount and you are done. Nothing is ever simple for me. They couldn’t get the cap off to get to the screw. They had to destroy the cap by cutting it off and then make a new cap. So, a $79 tooth fix was going to run into $937 for the new cap.

    The dentist had a new computerized unit that would take pictures of the tooth area and send them to a computer. He had to have me open my mouth as wide as I could, and he used his thumb and picture probe to hold my cheek away from the area as far as he could. It took him about 35 minutes to take the pictures as the computer was building the cap image on the screen. After the pictures were generated, he used a program like Photoshop to edit and fill in some places to resize and design the cap for the tooth. Then the computer would send the design to a cabinet in the next room to cut a rectangular piece of porcelain into the designed tooth cap with 2 diamond water cooled saws. That took about 10 more minutes.

    The whole purpose of the process was to be able to have a ready-made tooth cap to install without them making a tooth mold that would have to be sent to a lab to finish in about 2 weeks and sent back to the dentist to install. But, after he made the tooth cap, it was too large and didn’t fit properly. So, he had to do it “the old-fashioned way” and he made the mold to send to the lab for them to make.

    The result was that I had a real sore jaw from him having to hold my mouth open so wide to try to remove and cut the cap, then take pictures for the cap design.

    Then a side effect came on while I was checking out of the dentist office. The nurse asked me if I had a Latex allergy. I told her I didn’t think so. She said, “your jaw and lips look swollen.”

    After I got home, my lips were so badly swollen that I was slobbering because I couldn’t close my lips. My right cheek looked like I had stored a year supply of food in it. Later that night my tongue, throat, and left cheek had swollen up too. I tried taking some Benadryl to reduce the swelling. By Friday morning most of the swelling had gone down. So, I guess the next time I have any medical appointment of any kind, I will make sure to tell them not to wear Latex gloves.

    I tried to cut this to as few words as I could, but I always end up making a book. Sorry! I didn’t really say anything about Esbriet so it’s a bad post for anyone trying to find out about taking it. I’ll quit posting for a few days to try to make up for it.

    Love reading your posts to me and the other people.
    Take care,
    Ray

    • #14699
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you, and no worries at all about any delay in replying. Someone once said something to me that really stuck when it came to online replies/emails: “never apologize for having a life outside of being online”. I love that and it is so true! But, don’t just disappear either cause I like chatting with you 😉

      How are things going now? I’m really glad to hear the nausea has subsided for you. Knock on wood, I haven’t experienced this in awhile as well. Maybe it was just a bit of a virus I had? Doubtful as it comes and goes so often but I’ll take it for now. I do however think I’m coming down with a cold though, which scares me. My ears are so sore, along with my throat and swollen glands. I’m trying to rest and drink lots of hot fluids to get rid of it before it amalgamates into anything.

      Funny you mention you didn’t make it to Costco yet – neither did I! My friend and I were going to go on Friday, but we went for dinner and just chatted too long before realizing the store had closed. Oh well, another time. Yes, the Suzie’s good fats bars are so good! I say to my brother all the time that this was a good company for him to invest it, as they’re doing so well and my body actually craves them now due to the reduction of sugar they’ve helped me achieve. Yes, the peanut butter ones can melt if outside too long due to having no preservatives and a blend of healthy fats, so if you can, try to pick them up at the grocery store. I eat mine right out of the fridge so they’re cold (a friend puts them in the freezer) and they’re so good! Let me know if you do end up trying them 🙂

      I’ll private message you a photo of the lobster eating event, it was amazing!

      Aww, I am so sorry to hear of yet another “hiccup” at the dentist. How awful for you! What rotten luck, something has to turn around for you soon my friend. Had you ever reacted like that to the gloves they’ve used before? Yes definitely make sure they don’t use the latex gloves in future for you. Doesn’t it aggravate you that we can’t just be ‘simple’ when it comes to supplies doctors or dentists use on us? I feel this way with medical supplies as I am highly allergic to Elastoplas which is in most band-aids or dressing changes and I can feel the frustration nurses have when I ask for something different. Not our fault, but it sure can make us feel bad. Glad the swelling went down quickly with the Benadryl though and that the side effects didn’t last. What a tough day for you! Do you have to go back in two weeks then to get the mould? Did you have a hard time in the dentist chair with breathing? I really struggle with this as laying lat on my back is hard for me and then sometimes when they rest their hands on my chest they reduce my oxygen cannula. It drives me nuts.

      Hope you’re doing well otherwise, and that your weekend has been restful. It’s a cloudy day here, but cool… yesterday was the perfect fall day and I quite enjoyed having the windows open and tidying up the house. I have some candles going right now (away from my oxygen, and I don’t burn them too long due to my scent sensitivity) and am going to make a slow-cooker butternut squash soup today. I’m looking forward to that!

      Tomorrow (Monday) night I’m picking up a friend who also works for BioNews from the airport as we have a funeral to attend on Tuesday. Our Columns Manager, Serena, passed away last week from complications of Pulmonary Hypertension/PVOD. Our hearts are pretty broken, so it’ll be a tough week.

      Talk to you soon and hope you enjoy your Sunday!
      Charlene.

  • #14722
     Raymond C. King 
    Participant

    Hi Charlene,

    I won’t stop chatting with you as I like the chat too. It’s not often we get someone to listen to all our problems, but you seem to get your share of it. I seem to be able to generate problems often without even trying hard. Thanks for listening and replying especially when I think my problems dwarf what you must put up with.

    The nausea problem seems to come and go. I have read that it is common with the Gastroparesis that I have so I guess I better get use to it. Early this morning I again woke up nauseated and had the dry vomiting problem. I took a Zofran and hoped that that would let me go back to sleep. I laid there still feeling nauseated for a little over an hour that way and noticed my wife kind of wakening up. I said her name kind of quietly and she immediately said “what?” so I knew she was awake. I asked her if she would mind mixing and giving me a Finnigan. I wasn’t sure where she had put the bottle of them or I could have done it myself. I can put them in the syringe, hold the J-Tube in one hand and reach the syringe plunger to inject it with my thumb and fingers with the other hand without squirting it everywhere. But, it is a lot easier with the two of us doing it. I don’t feel too bad about doing it when I see some of the nurses do it when I am at the hospital. Even though I offer to hold the tube for them and they say they can handle it ok, but a lot of them end up getting my hospital gown or bed covers all wet. Anyway, soon after she gave it to me I evidently dropped off to sleep. When I woke up my night feeding unit was alarming showing that I was out of food. It was time for me to get up and I didn’t feel nauseated. So far, the rest of day is going on fine and I am not going to eat anything today to change the feeling. Maybe I’ll try some food tomorrow if the night goes ok. Enough about that.

    I do have to go back to the dentists next week but not to get the mold. He did that before I left his office last week and he sent it to the lab. It will be to have him put on the new tooth cap that the lab made from the tooth mold he took. All he should have to do is glue it on the Implant stud and maybe just grind it off a little if it doesn’t fit quite right and then polish it. If the lab made it wrong, he would have to send it back to them and I’d go through it all over again. I’ve had good luck with caps the labs have made before, so I hope this goes well also. I’ll make sure he doesn’t use Latex gloves when he does it.

    How are you feeling now? You stated that you might be coming down with a cold or something. There has been a lot of cold type illnesses going on in our location. My wife had something that lasted for several weeks, and so did a lot of our neighbors. It was kind of just a sore throat, cough and sniffles but it just seemed to drain everything out of her. She didn’t feel like doing anything and just took cold medicines and slept a lot. She feels a lot better now. I feel sorry for your plight because you must go to work and do a lot of other things. We can always just hunker down and do nothing until we get over it.

    I’ll have to check our larger grocery stores to see if they handle Suzie’s Bars. Walmart or COSTCO would probably be my best bet as I’m pretty sure that the couple of stores that we have, and cover Idaho and a couple of surrounding stores, wouldn’t. That is because they generally can’t just order a small quantity of them, so it must be an item that has some demand. I’ll look around. If all else fails, I can always order some from Amazon. I will let you know if I ever get any to try.

    I haven’t noticed the private message you were going to send me that you took at the lobster eating event you had in Novia Scotia. I looked at the messages on the forum. I’m not sure I am looking in the right place for it. When you send it, I’ll try to watch it if the drooling doesn’t cover my computer screen.

    How did the slow-cooker butternut squash soup turn out? My daughter made us a zucchini squash soup a couple of years ago and it turned out well. Last Christmas I had purchased us a real fancy slow cooker with all the frills and I was going to use it to make a lot of the recipes I had been reading about. One of our sons had showed us his and he really liked it. Well, we got it and all I ever made with it was some spaghetti and meat balls once. The recipe made so much we had to throw away most of it. Also, the spaghetti all stuck together and came out it clumps. I wanted to try a roast or chicken but never did because all the recipes seemed to be for 8-12 people and there is just the 2 of us so we would have had to freeze a lot. It did work for boiling eggs. Anyway, my daughter and her family of 4 live in the city and I decided to give it to her. She had mentioned she would like to purchase one, so she could get something cooking before she went to work and then she wouldn’t have fix something when she gets home. She works a night shift from 11PM to 11AM 4 days/wk. She really likes it. Her husband and a son uses it too.

    I was sorry to hear about you losing your Columns Manager due to the PAH. It’s always hard when you lose someone you are close to. I hadn’t heard of PAH, but it appears to be one of the other things that causes a person to die from not receiving enough blood to the body. Had she had the problem for a long time?

    I hope your weekend went well for you?

    I’ll close this book chapter for now. Take care.

    Ray

    • #14753
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your reply, and so sorry for my delay in getting back to you! It has been a bit of a tough week, and I’ll be glad to see it end. Unfortunately I dealt with a family emergency this week, attended a funeral of a friend/colleague, had a friend visiting from California (this was a great thing!) and am still recovering from the cigarette inhalation last week. It has been a lot, so I’m pretty tired but will do my best to thoroughly respond to you, as I really like writing with you as well!

      Has the nausea subsided for you, as your body (hopefully) adjusts to the starting of Esbriet again? Actually, I seem to remember October 15th being a significant date for you for some reason, so maybe you haven’t started the Esbriet up again yet? Anyway, let me know as I’ve been thinking of you and hoping that if you have started it, it’s going alright this time. Is Finnigan a type of anti-nauseant you use that is effective? I don’t think I’ve heard of it but I have heard of the Zofran, and have used that as well. I think I have pin-pointed some of my nausea issues to stress, as when I am upset or overthinking something, it seems to aggravate sporadic bouts of nausea. I can’t link it to anything else anyways. Thankfully it isn’t too bad right now and hasn’t been for awhile, which surprises me given the tough week I’m working through. Glad overall your nausea wasn’t bothersome the day you wrote to me… we need to celebrate the little things, right? 🙂

      Hope your experience back at the dentist went alright? Still can’t believe you had the latex reaction, that is horrible and I hope they noted that so next time you don’t experience that again.

      Thank you for checking in with me, you’re so kind. I am still fighting sore ears and a sore/scratchy throat but *knock on wood* it doesn’t seem to have turned into anything. I am washing my hands constantly though, and avoiding people who are coughing at all costs. A colleague of mine has bronchitis and I am so nervous to be anywhere near her, but really, she shouldn’t be at work anyways since she is exposing more people than just me. How is your wife feeling now? Sounds like she is on the mend, which is what I hope! Do you get the flu shot, or what has your doctor said about this Ray? I’m curious to hear about this, as it is time I start going to get it if I am going to (which I think I am).

      Sounds good re: letting me know if you try the Suzie’s good fats bars. My brother said they are in Walmart but not in Costco yet, and are only just coming to the US now so you’d have to check a larger store likely to find them, like you said. They also changed the name/branding to break into the US… apparently you’re going to get them called Love Good Fats bars instead.

      I totally forgot to send you the picture. I am going to look into doing that now, to see if I can get it. To check private messages (which is how I’m going to send it to you), click here: https://pulmonaryfibrosisnews.com/forums/members/raymond-c-king/ (you just have to be logged into your account).

      I love my slow cooker, and am always looking to try some new recipes so if you had any good ones from when you had yours, feel free to pass them along! The butternut squash soup turned out so good, and it made more than I thought so I put some in the freezer and brought some for friends lunches this week. It was nice! It is our Canadian thanksgiving this weekend (so I may be offline a lot of the weekend) and I’m going to make another batch of the soup to bring home for part of our big dinner. It is supposed to be cold and rainy here all weekend, so that will be a nice, warming part of dinner hopefully.

      Thanks so much for your kind words about Serena. Many of our hearts are still aching at BioNews, and I can confirm mine certainly is. I am in disbelief a bit I think, and will always miss her. She was such a unique and amazing person! She was diagnosed with PAH in 2013, although I’m not sure it was managed the best. Her and I share some of the same doctors/medical team as she lived in the same city as me… this is an added layer of complication now too, as I have some fear that they are also ‘missing’ things when it comes to my health. However, that could be all-consuming so I am trying not to let my mind go there at all.

      Anyways, I should wrap up my novel and see if I can figure out how to get that picture sent to you. Enjoy your weekend and looking forward to hearing from you whenever you have some time.

      Warm regards,
      Charlene.

  • #14762
     gil 
    Participant

    William Sherman,

    VA is stalling wanting a biopsy despite have two Pulmonologist from different cities saying I have IPF and two different High Resolution Scans, each done in a different facility and different city.

    Sorry to hear that about the VA, I go to the Palo Alto VA and have not encountered any issues. I did have two VA doctors disagree with the diagnosis, one thought the fibrosis was due to autoimmune issues and the other thought it was IPF and the medication for one does not work for the other.  I did not want risking side effects if the medication would not work for me, I went for the biopsy and the diagnosis is IPF and while one doctor wants me to start with Esbriet my primary pulmonary doctor still believes that some of my symptoms are due to autoimmune issues and wants me to see a couple of other doctors, he thinks my joint issues, dry eyes and mouth, and skin issues that come and go warrant further study.  Other people with IPF have not had an issue getting medication from the VA, so I am very curious which VA facility is denying you drug treatment, it does not sound right unless they suspect autoimmune issues.

     

    gil

    • #14764
       Charlene Marshall 
      Keymaster

      Hi Gil,

      I know your reply was to Bill, but I just wanted to say thanks for sharing a bit more of your experience regarding the VA and your process of getting diagnosed. Are they still suspecting your other symptoms that you listed are due to something other than IPF? Just curious.

      Very grateful for all the information you share with this forum and the time you take in responding 🙂

      Hope you’re doing well. It’s always so nice to hear from you!
      Charlene.

  • #14774
     paula 
    Participant

    Hi Gil, I had the same results with the blood work that was done, that they were thinking along the lines of the autoimmune. Kind of funny one of the tests said I was allergic to pigeon poop. Guess that means I can’t hang out on the bench and feed the pigeons. lol. Biopsy showed I have IPF. After that was done my insurance company ok’d the medication.

    They put me on one med, forgot the name it started with a M. That did nothing. Then last Dec they started me on Esbriet. I was doing great. No side affects, and it seemed to be doing what they wanted it to do. Then 3 1/2 months in I developed an allergy to the Esbriet.

    Now they have me on OFEV. Not sure how well its working due to a major stress issue I was dealing with in July that caused the fibrosis to get worse and I am now on O2 24/7. For right now they still have me on the meds. That might change after the CT next month and then my visit at the Mass General Hospital with my other pulmonary doctor.

  • #14795
     Charlene Marshall 
    Keymaster

    Hi Paula,

    I know your reply was to Gil, just touching base to see how you’re doing? I saw you mentioned you’re on oxygen 24/7 now… was that the original plan when they brought oxygen to you a few weeks ago? I thought it was just for nighttime or exertion originally? This totally could be my assumption though, I just hope it doesn’t mean you’ve gotten worse since having to going on it 24/7. Thinking of you as you adjust to using oxygen, I remember that time well and know it isn’t always easy.

    Warm regards,
    Charlene.

  • #14796
     Raymond C. King 
    Participant

    Hi Charlene,

    I’ve been sending you, I thought, a Private Message and I am not sure got out to you. I have sent it 2 times to make sure. Maybe, I just don’t understand the “Private Message” procedures, but it showed that I posted the Private message but later disappears when I try to find that I sent it. If you are getting my “Private Messages”, please just post “I got it” to me on this forum area and I will know it went out OK.

    Thanks,
    Ray

  • #14798
     Charlene Marshall 
    Keymaster

    Hi Ray,

    You’re wonderful – I got your private message! 🙂
    I’ll spend some time this afternoon replying to you for sure, but you did it right … thanks so much. Chat with you on there soon!

    Charlene.

  • #14799
     Raymond C. King 
    Participant

    Hi Paula,

    I haven’t had a post from you in quite a while, but I see you have had to go on Oxygen 24/7 now and it is probably hard to get siked up to post things again. I have been reading your other posts and it sounds like things have really changed for you. I guess it is inevitable that this will happen from IPF. I’m sorry it came on so vigorous to you. It seems that it gets worse with some people for no apparent reason. I am happy that you were able to get settled in your new house before the Ox 24/7 came on. I hope the stress you were under didn’t hasten it.

    Please keep us posted on your progress if you feel up to it. I’m sure we are all praying for you.

    The best to you,

    Ray King

  • #14812
     paula 
    Participant

    Good morning Charlene and Ray

    Thank you for your kind words and thoughts. I can not have the oxygen on when I am at the computer, too close to where the gas heater/dryer etc. So I space my time down here.

    Charlene, initially it was suggested by the nurse who did the pulmonary function that I be on the O2 at night. But when I gave the list of my sat rates to my doctor it was determined that I need to be on it all the time. If I am just sitting around doing nothing I can be off it for a bit. And I tend to do that when I am driving so I am not using up all of my portable O2 as I am still waiting for the one that runs on battery power. But as of late, I have noticed that I am getting periods where I get chest pains that go away when I put on the O2. Eventually I will probably be at the point where I can only have it off when I am taking a shower, at that point I will probably get a lap top so I can go on the internet from upstairs.

    Ray the thought of the doctor is that the stress from dealing with selling the house caused the fibrosis to get worse. Hence my need for the O2. But the doctors had told me earlier that the IPF can for unknown reasons all the sudden get worse. I guess its the nature of the beast.

    I am getting a CT done next month, then will see my guy in Dec at which time I will probably be making the appointment to see my guy in Boston. My doctor down here has been keeping Boston in the loop. Not sure what he (in Boston) will decide on whether or not I am now a candidate to be put on the list, from what I heard is a very extensive thing you have to go through to get fully on the list. I have lost close to 30 pounds since I saw him last Dec and my weight was something that would have kept me off the list.

    How are you doing Ray? Have things started to calm down for you? I saw mention that your wife was not feeling well. Is she feeling better now? I hope so.

    Well its almost time for me to get back up stairs and back on my O2. So I will end here for now.

    Talk to you both soon.
    Paula

    • #14833
       Charlene Marshall 
      Keymaster

      Hi Paula,

      So great to hear from you, sorry for taking a few days to reply. I actually thought I was over a bit of a cold and was feeling better but today I came home from work with terrible flu-like symptoms. I’m very nervous its going to develop into something: having a hard time keeping food and fluids down, and really hot/chilled throughout the day with feeling achy all over. It really stinks!

      It is nice to get an update from you though, thanks for writing 🙂

      About the O2 use, I’m glad that the doctor identified the difference for you even if it is a pain to be on the oxygen 24/7. Keeping your other organs healthy by being properly oxygenated is so important, and hopefully it makes you feel a bit better too knowing you’re getting enough oxygen. It is definitely hard to adjust to though, the “tethered” feeling was really tough for me. I’m glad you’re finding ways to manage though, and hopefully still able to do the things you enjoy. I often take my O2 off while driving as well, as I fear my lungs will become too dependent on the oxygen if I am on it all the time. Although, I know that’ll eventually happen anyways … perhaps it is my exercising a bit of of control or stubbornness? 🙂

      Keep us posted on the progress re: your listening status Paula. The evaluation is quite intensive, but there are a lot of amazing teams that help you along the way. Hang in there and glad to hear that for now things are going okay for you. Think of you often!

      Cheers,
      Charlene.

  • #14815
     Raymond C. King 
    Participant

    Good Morning Paula,

    Thanks for the explanation of why you can’t use your computer very often when you are on 02. I have both a Desk Top and Lap Top computer. I used to always just use a Desk Top one for decades because I would put them together from kits and wanted powerful use for games I was addicted to. The last one I built was in 2009 and I have ended up using it very sparingly and now it is was still using Windows 8 and most of the games need Windows 10, so I didn’t keep up with it. Also, I had bad surgery in 2011 and don’t have the ambition to go in the other room to sit there and use it.

    In 2012 my daughter gave me her Lap Top computer while she was staying here for 6 months between jobs. It had quit working and she was just starting a new job for the Navy Dept back East and they were allowing her to work at home on a computer for a month while they got her settled in. Hers stopped working and she needed a new Laptop immediately and went down and purchased a new one. A couple of months later, I fixed her old Laptop and used it until a little over a year ago when I bought a new one. A few months ago, I just ended up junking my old Desktop computer. It was getting obsolete and had no real value since it was homemade and not a normal brand computer. I am not sorry as I can now sit and use the Laptop while I sit in my recliner in the living room and I am on it a lot in the day. I think if you could buy one, you would really like the change and it wouldn’t interfere with your 02 setup. When I was on 02 24/7 last year, it didn’t interfere with me being able to use it anytime. Most of the Laptops have a Wi-Fi unit installed so it can communicate with your Internet Modem almost anywhere in the house. If it doesn’t have a built in Wi-Fi, you can always get a small adapter that plugs into the USB port and it will connect it up for you.

    I figured the dealing with the new house and moving stress was at some of the source of your IPF getting worse. They say that stress is even a thought of what causes IPF. I’m sure it didn’t help yours.

    Good luck on your CT scan next month and the possibility of going to Boston for further checks. I guess the list the Boston Doctor may put you on is for a lung transplant? Do you have any insurance that might cover some of that cost if you can get it done? If not, maybe there is a Foundation that might cover it. You are lucky you are still at the age where they might consider the lung transplant. I am over the 70s cutoff age so that could never be a consideration on my part. They say that if you are older, you probably wouldn’t live thru the surgery anyway. Congratulations on losing the 30 pounds so you could at least be considered to have it done.

    Thank you for inquiring about my wife not feeling well. It seemed to be just a cold type crud that was going on in the US and lasted for a long, long time. She is feeling much better now and seems to back to her old self again.

    I seem to be doing well. I have a Pulmonologists appointment on the 24th. It isn’t for new tests, but I assume he will start me on the Esbriet again since the bleeding stomach ulcer has not acted up again. He mentioned that when it was healed, he would start me back on the Esbriet but only 1 pill per day and then workup slowly to see how I was tolerating it. I still have almost a full 30-day supply of the Esbriet that I haven’t even tried very long and so far, it was causing problems. Monday, I had an appointment with my Home Health Care Doctor to see if I was not gaining any weight that a Dietitian at the hospital last month said I needed to gain. I had lost a pound since my last visit but he said to keep an eye on it and he would check me in a couple of months. My blood pressure was a little low 109/59 and he said it might be because I was a little dehydrated and I should try to take in more water. Also, he asked me if I have been feeling the cold. I told him I was always freezing, and he said it was probably because I don’t have enough fat to insulate me from the cold. Also, I asked him if I should worry about an IVC filter that was installed in 2011. I have seen ads on the TV that says if you have one, it should have been removed in 5 years. He said they are not any longer installing them unless it was extremely necessary, and he is making me an appointment to have a HRCT scan to see if they could or should remove it. He said they can break up and can go to the heart or lungs and even cause death. He said they sometimes must remove them by surgery if they have deteriorated too much. The CT scan will tell.

    Other than that, the new J-Tube they installed last month seems to be working well and even though I am back to where I need the Hydrocodone for the soreness it causes, it isn’t leaking and seems to be anchored in where it won’t come out like the old one did last month. At lest the Hydrocodone serves a duel purpose of taking care of the J-Tube soreness and stops the dry IPF cause and chest pains.

    Enough about me. I hope you get to feeling better. I know it takes a lot of your energy just raising a family and managing a household without all this IPF caused problems.

    Good luck to you and keep me posted on how you are doing when you get a chance.

    Thinking of you,
    Ray King

    • #14834
       Charlene Marshall 
      Keymaster

      Hi Ray,

      I know your reply was to Paula, but I just have to say …. you built computers?? That is so cool, and is a hobby that my nephew would absolutely go nuts over! 🙂

      Did your Pulmonologist start you back on the Esbriet, Ray? I know I have an email from you to tend to, so if you mentioned it in there already, my apologies. If the doc did, I hope it is going alright for you. I will respond as soon as I can, just touching base with a few replies on the forums before tackling my emails. Remember how I mentioned I thought I was on the “mend” of whatever my scratchy throat was? Seems I have a bit of a flu/gastro-intestinal bug now. I came home from work today very chilled then sweaty, sick to my stomach and feeling very lethargic. I am up now after a long afternoon nap (4 hours!) and feel a bit better but definitely not 100% yet. Hopefully I’m on the mend very soon …

      Thanks as always for writing, and I’ll get back to your email as soon as I can 🙂

      Charlene.

  • #14844
     paula 
    Participant

    Hi Charlene
    How are you feeling today? Better I hope. Make some fresh chicken soup. It will do wonders for you.

    You wrote something that made me laugh because of something that happened on the first day I was “tethered” to my O2.

    My husband and I went grocery shopping, this was when I still had that larger portable O2 with the trolley type thing. So I went to look at something, then all of the sudden I was being yanked back. I had forgotten to drag my new friend with me. I thought it was funny and could not stop laughing.

    They had to come out yesterday to replace one of my portable tanks because the pulse function was not working correctly. I was out getting my oil changed when they came, I had asked my husband to bring the new tank because I was very close to being empty on the tank I was using. He called me after they came to inform me that it was empty and he had to put it on the charger. He thought he could put it on the charger, do a quick errand and then bring it to me, but I told him it would take a few hours so not to worry. I was pretty much just sitting there so I would deal with it.

    Took over 3 hours to fill it, when I went to take it off, I noticed that I could hear it was leaking. I put on the other tank to recharge that one, and not only could feel the air leaking out of the tank but found a pin hole. I called the company and they are suppose to bring me another one today. Never a dull moment.

    • #14869
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Great to hear from you, and thanks so much for your kind words! I am on the mend, although still fighting something that is sucking all of my energy out of me. Sometimes the symptoms are reflective of a little cold virus, and other times I switch back to more flu-like symptoms: hot/cold, feverish and fatigued. It’s odd because just as soon as I think I’m over it, it comes back and knocks me out again. Overall though, I am better than I was and good suggestion: I made some chicken stew the other night in the slow-cooker and it warmed me from the inside out. It was great! 🙂

      How are you doing these days? I hope the weather is more pleasant there than it is here. Autumn is here with full force, it is -1 tonight and so windy that I bet by morning, most of the leaves will have fallen from the trees.

      That made me laugh with you when you shared the story of being at the grocery store. I can definitely relate, which is why it gave me such a chuckle! Last year, I took a friend of mine to the airport who never really travels and she was embarking on her first solo adventure which I thought was so amazing (I am a huge travel fan, so I was very excited for her). We were next in line to go up to the counter, and while she was nervous, I was staying with her until she went to her gate and when they called her up to check in for her flight, I got so excited I walked away from my tank completely. The lady behind us (a complete stranger) panicked and started moving my tank towards me as I walked away… we all laughed and joked about who was more excited for my friends vacation, me or her.

      Ah bummer, so sorry to hear about the tank leaking too. How frustrating! Was it just the cannula, or part of the concentrator that was leaking on you? I hope your provider brings you extra cannulas as well as you’re to change them frequently and I had to ask my provider to start bringing more. I can order them online too, and usually do as back-up, but prefer not to pay for them. Hope they were able to bring you a new one quickly!

      Thanks for writing, as always, it is great to hear from you!
      Charlene.

  • #15123
     Raymond C. King 
    Participant

    Hi gain Charlene and Paula,

    I’m just catching up on how my IPF and Esbriet challenge is going. I finally got my bleeding ulcer cleared up and got a visit with my pulmonologist. He has decided to try to get me back on Esbriet again but on a modified dose. I am to take just 1 pill daily for 2 weeks and then 2 pills daily for 1 time per day etc. As my doses continue to expand, if I have problems, I am to let him know immediately. He said that since I am taking tablets ground and powdered and are they are going directly into my intestines without the slow to release action that the tablets were designed to be dissolved, that I may never be able to achieve a full 9 pills per day. Also, he said that whatever point I find that my system will not tolerate a stronger intestinal concentration that I will just have to end up taking that amount. He said I probably will never be able to take the 1 pill full daily dose tablet Esbriet version because my system wouldn’t accept that strong of a concentration. Therefore, I will just end up taking whatever amount I ended up being able to accept. At that tolerance point, he said he didn’t know if what I was able to take would do the work it was designed to do because Esbriet life extension tests were run with people that took the full dose over the test period. He said he did not want to switch me to Ofev because it might cause more side effects to the other problems I am having.

    The result is that I may not be able to take enough if any, Esbriet to do me any good and it is going to take a long time trying to build up any quantity of Esbriet for it to get to a point that it is extending the progression of my IPF. I am truly a Genie pig for Esbriet for this type of taking their medication. They have no clue of what my results might be, and they keep calling me to see if I have started taking it again yet and if so, to please let them know what problems I am having if they should occur. THEY OWE ME!!

    As for now, I am going into the hospital again Friday to have an IVC (Parachute type) stint taken out. It has been in for over the 5-year time they say is considered safe to leave them in. They can deteriorate and break up and go into your lungs, or heart. Some have caused death. Mine has been in for about 10 years and my HRCS shows one leg is sticking into the blood vein and the head has tilted, so out it will come. The doctor said they don’t put them in anymore unless it is extremely necessary.

    I’ll let you know how the Esbriet process goes from time to time, but it looks like it’s going to be a really long process, so I probably won’t post much for a long time.

    Hope things are going well with you both. I see things have fallen apart a lot for you, Paula and you, Charlene, appear to be as busy as ever. Keep up your spirits and take care of yourselves.

    Ray King

    • #15149
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for writing and providing us with an update on how you’re doing – I think of you and Paula often! Glad the doctor is starting you back on the Esbriet if he thinks it will help, albeit slowly to avoid unpleasant side effects. I hope you can manage this slow increase for sure, and that nothing similar happens like it did last time. So it sounds right now that your body is building up a tolerance to it, and only your system will determine what that tolerance will be? Hopefully it is enough of the medication be effective in slowing down the progression of your IPF. Fingers crossed you tolerate it okay and that its helpful for you!

      I agree with you – I think they do owe you, especially because you’re giving them information for potentially future patients who may also have to take this drug the same method that you are. It should be sufficient to know that you’re helping future patients, but it sure would be nice to have some acknowledgement of being their guinea pig throughout this process. They are learning a lot from you!

      I hope the stint removal is a simple process for you, keeping my fingers crossed. I believe you said that is today (Friday) .. holding you close in my thoughts!

      Thinking of you both with love, as always. Hang in there!
      Charlene.

  • #15124
     paula 
    Participant

    Morning Ray

    Thanks for the update. Such a long process to get up to the full dosage. Makes one wonder how effective it will be. Heck its a crap shot doing the full dosage.

    Good luck tomorrow. Will you have to spend the night or can you come home after the procedure? I will be thinking good thoughts for you.

    I apologize for not being around much. I have been dealing with a cold that is basically kicking my butt. Went to the doctors yesterday. He feels its just a cold and as a rule they do not like to treat it with antibiotics as colds are usually viral. But he did give me a script in case this cold does not go away. At this point I am hoping the blooding noses end. And feeling like blah. BUT I did find out something interesting.

    He was talking about a Z-pack but said there is a possibility of a problem with it since I am on OFEV. If I were in the hospital they would give it to me as then they would be able to quickly address any issues from the interaction. But I thought this news was very interesting and wanted to pass it along to others like Charlene who are on OFEV and let them know about the possible problem with being put on a Z pack while on OFEV. Not sure if its an issue if your on Esbriet.

    Got to run. I have to drag myself out to the store and get groceries. I hope everyone is doing well and hope your feeling better Charlene.

    Paula

    • #15150
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Thanks for writing – as always, it is wonderful to hear from you although so sorry you’re dealing with a cold. It’s that time of year isn’t it? Its so terribly scary for those of us living with a lung disease!

      Did he give you a script in case the cold you have is not just viral but instead bacterial? I hope you’re able to knip it in the butt soon, especially the nosebleeds. Those must leave you feeling terrible! What is a Z-pack Paula? I’ve never heard of this… I’ll keep it in mind about the interaction with OFEV though, thanks for sharing!

      Thinking of you and wishing you well!
      Charlene.

       

  • #15138
     Raymond C. King 
    Participant

    Hi Paula

    Thanks for the quick reply.

    Yes, this Esbriet saga is quite exasperating. I am thinking that I should just tell my Pomologist to forget about it. He did ask me if I still wanted to go through with the whole process when he kind of felt that I might not be able to get to the full strength. It’s going to be a long time to find out and Esbriet doesn’t have any real way of knowing for sure if it is working for everyone. It is just a guess and of course, they want to sell their product.

    The stint removal Friday is just done as an outpatient procedure, so it is in-and-out after your wakeup and can walk ok. The Doctor said they will be going through the vein in my neck, so they can pull the stint out top first. They will also open the groin vein, so they can help guide the legs of the stent or remove any pieces if it should break up during removal. My wife will drive me back home after I wake up. It’s no big deal. I have had a couple of stints put in before, but they never did go through the neck vein. They always just went through the groin vein. Thank you for thinking the good thoughts for me. They are appreciated but I think it is just kind of a minor short procedure. Just like going to the Doctors office but a little more stuff available if they need it.

    I am sorry you have been having a bad time with your cold. My wife had something similar over a month ago and after a time, went to the doctor about it because it was knocking her down and she was afraid she had phenomena or something. The doctor told her it was just the crud cold that seemed to be going around everywhere and just to take the store medications for the symptoms she was experiencing. She took a lot of Cold Ease and other medications for the congestion. It really lasted for a lot longer than the regular cold and the newscasts said it was quite an epidemic that was going around. I know this doesn’t help in your case and I wish you well dealing with it. With your loss of oxygen problems, this is no small deal. Keep us posted.

    Keep us posted about the problem you are having about using a Z-Pack while being on OPEV. I hope it doesn’t apply to Esbriet too but maybe I won’t even be on it if I get to the point of needing external oxygen. So far, I am still above the 88 OXY
    Sp02 reading necessary to require it.

    I didn’t know Charlene was not feeling well. I haven’t heard from her for a while. I hope it isn’t serious.

    I’d better close for now and get a few things done. Winter is starting to come on heavy and I still have some items that need winterizing outside.

    My best thoughts are with you and Charlene.

    Ray

  • #15153
     paula 
    Participant

    Morning Charlene

    Yes he gave me a script in case I am not feeling better by next week. I am starting to feel slightly better, hope I am not jinxing myself saying that. lol

    A Z pack is a 5 – 7 day regiment of an antibiotic. Here is a link to describe it

    https://www.webmd.com/drugs/2/drug-20602/zithromax-z-pak-oral/details

    Supposedly it does not interact well with OFEV. And as the doctor told me, if I was in the hospital they would give it to me only because they would be able to monitor me in case there is a problem and they can react quickly to it.

    Hope Ray is doing well today.

    Paula

  • #15160
     Charlene Marshall 
    Keymaster

    Hi Paula,

    Thanks for getting back to me so quickly – you’re speedy! I hope you aren’t jinxing yourself either, and truly start feeling better. I’ll keep my fingers crossed for you, but good to know you have an antibiotic just in case 🙂

    Ah, interesting about the Z-pack. I see it is for Zithromax, which I go on all the time when I get strep throat (which I get faithfully every year, and have since I was little). It is a quick acting antibiotic which is nice! I hope you don’t need it as well but good to know that it doesn’t interact with OFEV for when/if I do need it in future. Thanks for sharing!

    Take care,
    Charlene.

  • #15167
     paula 
    Participant

    Hi Charlene

    Maybe I worded it wrong but the Zpack has the risk of a negative reaction when taking it while on OFEV. The doctor would not prescribe it to me for at home. Said he would if I was in the hospital but that was only because they could monitor it and if there was a reaction they could respond quickly.

    take care
    Paula

  • #15172
     Charlene Marshall 
    Keymaster

    Hi Paula,

    I hope you’ve had a nice weekend, hard to believe it is the start of another week already…. my weekends go by far too fast! 🙂

    Oh, I didn’t pick up on that per your previous post but that could have been my goof too – I’m sure you explained it very well. I will have to remember this because I faithfully get strep throat a couple times per year and am regularly put on Zithromax. However, I’ve never had it yet since being on OFEV (fingers crossed) so I’ll need to remember to tell the Dr. that if they don’t remember. Hopefully they do! I am so cautious about getting sick now that I am living with IPF, although I know it will become inevitable… so far I think my efforts are paying off a bit anyways as I haven’t been dealing with too many terrible illnesses. I just got my flu shot so hopefully that helps as well.

    Thanks for writing and clarifying this for me, I appreciate it. As always, wishing you well!
    Charlene.

  • #15180
     paula 
    Participant

    Good Morning Charlene

    Always happy to provide any tid bits of information that I might come across. Now I just have to remember that information should my primary opt to put me on a ZPack.

    I do not do the flu shots. I got shingles this past spring, right around the time I had the reaction to the Esbriet. My primary was telling me about the new shingles shot that was out but he said he was not going to recommend it for me. Which was find by me.

    The cold is slowly abating. Phew. Like you I try to stay health, usually I can. Normally I do not get anything but every five years I will get sick as a dog. Temp will go up to 104 – 105 which will stay there for around 3 days. And then everything returns to normal.

    The fat fairy found me. I think its a residual affect from Sept when my doctor put me on a 10 day regiment of pregnisone. Hopefully I can get her away from me and start losing again. lol

    Any word from Ray? Hope everything went well for him.

    Talk to you later
    Paula

  • #15183
     Charlene Marshall 
    Keymaster

    Good Morning Paula,

    I really appreciate your willingness to share the information you find, thanks again. It feels like a lot for us to remember when we go to the doctor, doesn’t it? I’ve begun writing information that might apply to me (such as this Zpack and OFEV) in a little notebook that I carry in my purse so I always have it readily available to bring up at appointments. This was also a tid bit of information I received from these forums! 🙂

    I remember when you came down with Shingles, ick, that must have been no good. Is it because you’ve already had them that your doctor recommended you not get the shot? I know lots of people don’t get the flu shot and I don’t preach them to, it is important everyone is happy with their healthcare decisions. Do any of your family members get it?

    Really glad your cold is starting to go away, there is nothing worse (I find anyways) then trying to sleep when you feel congested from a cold. Keeping my fingers crossed I can keep it away this year! I’ll also wish the fat fairy to leave you alone…. it always makes me giggle when you refer to this! Lol.

    No word from Ray yet, I also hope everything is going alright for him and he’s just taking the time to heal and rest.

    Chat soon and enjoy your day!
    Charlene.

  • #15184
     paula 
    Participant

    Afternoon Charlene

    Not only do we need to remember stuff to talk to our pulmonary guys, but we have to be on our toes with others who might be prescribing medication for us. As we sadly know, many doctors have no clue about the meds for the PF and in reality only have a thumb nail of knowledge about PF to begin with.

    As for the shingles shot. My primary told me after I was pretty much over it about the new shot but said because of all of the medical issues I am dealing with, he would not feel comfortable suggesting it. Plus he gave up years ago trying to talk me into getting the other shots.

    Thanks for keeping your fingers crossed to get the fat fairy to leave. haha

    Talk to you later.
    Paula

    • #15189
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Thanks for writing! I sure hope the weather there is nicer than it has been here the last several days … it hasn’t stopped raining for a week. It’s been terrible! Starting to make me angry actually, as I definitely am impacted by the seasonal affect disorder (SAD) during persistent bouts of rain. Couldn’t agree more with you re: how much lands on our shoulders when it comes to those prescribing us medications and possible interactions with PF meds. Sure can test our patience being a patient, can’t it? One of my friends said that to me once and I’ve never forgotten it!

      Hope you had a good rest of your day and that things are going alright for you. Thanks for the update re: the Shingles shot. I wonder if this is something I should discuss with  my doctor too…

      I spoke too fast: I am very congested this morning, chilled and feel a general amount of ‘yuck’. I slept for 10 hours last night, plus a nap yesterday and could go back to bed now. Am afraid I’m fighting something. Let’s hope not!

      Chat with you soon,
      Charlene.

  • #15185
     Raymond C. King 
    Participant

    Hi Paula and Charlene,

    WOW! I am way behind catching up on all the IPF news and posting replies. SORRY!

    I hope you don’t mind my combining a response to you both in one post and not making it more of a personal response to each one?

    Thank you both for inquiring about how I was getting along after the IVC filter removal.

    It was a long Friday. They called me at about 9 AM Friday and said they had a cancelation and wanted me to come in as soon as I could instead of 12 Noon. I went in at about 9:30 and didn’t get home from the hospital until about 5:15 PM. I thought it would be a lot shorter as it was done in the Out-Patient Surgery part of the hospital. The doctor said he was going to have to make an opening in my neck area to pull it out. He also went into the groin with a probe with a balloon on it so if it broke up or one of the legs that were embedded in the vein wall broke through it, he could cut off the venous flow of blood. After the procedure, he did say he had to cut away some of the neck mussels to get to the vein, so it would be a bit sorer than normal. Anyway, it all went well, and it didn’t break up during the extraction. The only bad part was that after I got back in my room, I had to lie flat on my back for 3 hours to make sure the bleeding had stopped. My neck still hurts when I twist my head. I will take the bandages off tomorrow and then get started on the Esbriet procedure. My pulmonologist told me to start it again after I was feeling OK this week. We decided tomorrow was the date.

    I seem to spend most of my time going to doctors. Wednesday, I have my normal yearly heart doctors visit. Friday, I go to my Spine and Pain doctor. I went to him last Thursday for a really bad shoulder problem I was having. It got to where I couldn’t reach my head to comb my hair. He said it was my shoulder rotor cup and that there were 3 things he could do to help it. One was surgery. The second was giving me a shot in my shoulder and the third was send me to Physical Therapy. He then said that for me, I only had two options. I was too old for surgery and I would more than likely die if he went that way. He told me he would recommend trying the shot and if that didn’t work in a few days, he would make an appointment for me for Physical Theory. The shot option would last for maybe 6 months if it worked and the Physical therapy would help increase my movement range a little, but nothing would cure it. So, Friday I go in for the shot. He does it with Contrast injected first so he can see under x-ray where the needle is going. But he said someone must be with me to drive me home because of the Contrast injection. Well, that will kill Friday and the follow-up appointment for the following Tuesday.

    Sorry to just keep posting problems with me but at my age, that seems to be my life.

    Paula,
    Thanks for posting the information about the Z pack. Since I am not on things like that yet, I was at a loss. It sounds like a really harsh drug. I hope it is and will work for you?

    I hope that you get over that cold. The high fever undulation sounds quite scary, I know that the fever alone can really knock a person down.

    I don’t know what to recommend for the “fat fairy” issue. My dietitian wants me to gain weight. Does the prednisone cause weight gain?

    Charlene,
    I see all your many, many posts on all the different forum topics and it looks like you are keeping awfully busy. I don’t know where you find all the time. It takes me forever just to. put in a post. I just procrastinate too much and waste time.

    Happy you got your flu shot. I’m not sure they work because my brother and his wife never get them and don’t ever get flu shots. I keep thinking that someday they may be sorry they didn’t get one, but I have no ammunition to counsel them. All I can tell them is we always get ours but when we still get a little dose of it sometimes anyway, what can I say?

    I’ll close for now and get this posted.

    Take good care of yourselves and keep me posted how things are going with you.

    Ray

    • #15190
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Not too worry at all about missing some updates and needing to catch up … just nice to hear from you and that Friday went alright. Feel free to combine a message back to both of us anytime, I completely understand that. I won’t be online too much today likely as I think I’m starting to come down with something too; very congested and achy this morning. Bad timing!

      Thanks for outlining how everything went yesterday, and hope you feel that it went as well as possible. Glad it didn’t break up, but I would imagine your neck feels pretty crummy after that. Goodluck with starting the Esbriet today, I hope that goes well. Keep us posted if you can, but of course no pressure at all. Sadly, I feel like I can relate with the overwhelming amounts of doctor and medical appointments we have, it is pretty frustrating isn’t it? Sorry to hear about your shoulder, that is terrible! The shot sounds similar to what my friend gets in her knee after a major sports injury. If it means anything, it really seems to help her with pain management so I’ll keep my fingers crossed it does for you as well.

      Thanks for the kind words Ray – keeping up with the forums lately feels like a full-time job but one that is really meaningful for me so I am happy to do it. I am awfully tired today (think it is this virus I am fighting) so I am going to go back to bed and try for a few more hours of sleep/rest. Take care and I hope the rest of the week goes well for you!

      Charlene.

  • #15188
     paula 
    Participant

    Good morning Ray

    Very happy things went well for you last Friday. Bummer about the shoulder issue. I do not do well with those shots but like so many other things I seem to be a magnet for problems. The PT will help you as I have had shoulder surgery 5 times.

    Ah the Z pack. I have had them in the past, they seem to work fine. But as I explained to Charlene because I am on the OFEV the only way they will give me that form of antibiotic is if I was in the hospital so they could monitor more closely if there are any issues. So no Z Pack for me. The cold seems to be going away. And hopefully the fat fairy will find someone else. I would send her your way but she never listens to me. lol

    Well have to get ready to go and vote. Should be interesting to see how the voting turns out.

    Hope you have a great day. Thanks for letting us know how you made out.

    Take Care
    Paula

    • #15191
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Goodness – shoulder surgery 5 times… did you have an injury to it that was repeated and needed repairing?

      I forgot it is voting day for my US friends, hoping that turns out okay for all of you!
      Take care,
      Charlene.

  • #15192
     paula 
    Participant

    Morning Charlene

    Just got back from voting and grabbed a few things on sale at the grocery store.

    I can not even remember sleeping 10 hours without waking up several times. Hope your not getting the virus.

    I must have forgotten to mention that I am the surgery queen here. lol Killed my arm while working as an EMT which put me out of work permanently. I think on that arm/shoulder I had a total of 10 surgeries and my back is something like 5 or 6 surgeries. They all blend in together. Two of the last surgeries was because of the allergic reaction to the titanium rod they put in my back and then had to take out. Sadly when I was going for these surgeries the entire staff would remember me. On my next to last back surgery, the primary surgical nurse came out and said “OMG it is you. I saw the name and I had to come out. Can’t believe your back (no pun) here.” I told I came back to wish her a Merry Christmas since it was only a couple of weeks before Christmas. She gave me a huge hug. lol

    Hope you are able to get some more hours of sleep and start to feel better.

    Later
    Paula

    • #15216
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Nice to hear from you – sorry for the few days delay in replying! I am so happy to report that my feeling unwell didn’t really turn into anything (not yet anyways, fingers crossed) although I do believe it was some kind of virus. I slept for hours upon end on Tuesday and Wednesday, which is very unusual for me. Especially to wake up from a nap, do minimal things then need to lay down again. I didn’t really feel unwell other than a terrible headache that was managed with tyelonal. Thankfully the last few days have been better so I am now spending some time trying to catch up on forum replies! 🙂

      Glad you got out to vote – I didn’t follow the end result of voting in the US. Hopefully it wasn’t too bad…

      I think I do remember you telling me about your arm/shoulder following your years as an EMT. That totally stinks, I hope it was worth all the surgeries in terms of pain management now and doing a bit better? That must have been a painful recovery for you from all of those surgeries – you are one tough lady!

      How has your week been? Hopefully pretty good. I am happy that it is Friday tomorrow, not going to lie!

      Chat soon,
      Charlene.

  • #15193
     Raymond C. King 
    Participant

    Morning Paula,

    Thank you for the fast response. It sounds like you and Charlene start your day early in the mornings. I too seemed to start my days early, but I have no real reason to do so. All my life I just have always been an early riser. I woke up at 4:05 AM this morning but thought I had no reason to get up and tried to go back to sleep. All that happened was my thinking of all the things I wanted to do today and since some of them required I had to check things first, I decided to get up at about 4:50.

    I always must start with a cup of coffee and while drinking it, I can make me a list of the things I want to accomplish before the day goes away so I won’t forget. Just a memory problem or old age I guess. I don’t know which has the priority. I can also catch up on the news on the TV while sipping the coffee.

    Then, my wife usually gets sometime after 6 AM to get ready to give me my first sequence of daily medications and change my bandages on the J-tube at 7 AM. She is a night person and stays up way after I go to bed at about 10 PM. Sometimes I wake up at 1 to 3 AM and she still hasn’t gone to bed. A lot of times, she takes naps during the day and goes to sleep in her recliner while we are watching evening TV. I have never been able to take naps in the daytime. I figure that a waste of time for some reason. They say it is better for you to take a daytime Siesta, but I just never could.

    Anyway, there is a lot of things to keep up with today, election time and I guess we will have to go and vote. As you say, the election results might be quite interesting and to take a lot of time for the results. I always hate to go to our voting place as it is a school and there is never any place to park. It is only about 6 blocks away and if the weather was good, I could walk there if I was able. Today, the weather forecast is for some cold windy conditions with rain and possibly a little snow. I see on the TV that the East Coast is having bad weather too.

    Thank you for your information on the shoulder shot. WOW! 5 surgeries on the shoulder. My doctor did say that sometimes the shoulder rotor cuff surgery doesn’t help. My wife did have a knee problem of a worn-out knee cap pad and she got immediate relief from the shot the doctor put in it. That was over a year ago and she still has had no trouble with it. My brother had knee replacement surgery and he said it worked well, but it still hurts from time to time but not as bad as it did before the surgery. I guess its kind of a crap shoot one way or the other. Everyone seems to get different results

    I am happy to hear that your cold seems to be going away. Some of them have been hanging on to people for over a month. I know my wife had one that seemed to last forever and a lot of the medicines she was taking didn’t help her much. It seemed to really knock her down.

    Thanks for offering to send the “Fat Fairy” my way but I really don’t need her or his help. (I have to include both sexes to be politically correct nowadays”) LOL, I don’t seem to be losing or gaining weight, so I guess I am getting what my body can handle.

    Take good care of yourself. I know your days are chocked full of a lot of frustration over what this PF is adding to other problems.

    Until later,
    Ray

  • #15197
     Raymond C. King 
    Participant

    Good Afternoon Charlene,

    Thank you for your quick responses especially when you don’t feel well. I hope things ease for you soon. I’m glad you decided to just set things aside and go back to bed to get some needed rest. I do hope it helps although, with all the problems you have and have had, you might not be able to sleep long enough to make them go away.

    I have noted on the TV weather forecasts on the East Coast, it sometimes shows me the approximate area where I think you live and as you said, there has been a lot of wet weather. I couldn’t see if it had some snow or not mixed up with it. The only snow we have had was just a skiff one morning and other than that, we have had a few days with a little rain.

    On the 12th-16th of October, we drove to see our daughter in Ft Collins, Colorado. On Sunday, two days before we left, they had about 4-inches of heavy snow. Luckily, on Tuesday when we left, most of it had melted. When we were leaving though, I had to clear the snow and frost off my car windows. The rest of the snow melted and blew off the car before we hit the Wyoming border. The roads were all clear all the way home so the 8-1/2-hour trip home went well. I guess its winter time now, so we were lucky.

    I am sorry your SAD has been acting up on you. I’m sure that more depression isn’t what you need. I have been lucky that I don’t have to worry about the weather changes because it changes so frequently, even within the day. I once worked with a guy while I lived in Southern Utah that had to move to a desert area in California where it is just hot and dry all the time. He did have a bad case of Asthma though and that seemed to help him. I guess where you are the weather changes quite often. I’m sure it gets cold there now and since you are in a Great Lakes line, there can be a lot of different types of wet weather changes. Is there anything you do about your SAD other than anti-depressants? I guess while you were in Nova Scotia, it didn’t act upon you too much? Keep us posted. I really worry about you. I hope you are not coming down with something new today that knock you down more?

    About the IVC removal last Friday. We changed the neck and neck bandages last night and both areas seem to be healing properly and no sign of infection. In fact, we were able to just put a regular Band-Aid on both wounds. The neck area doesn’t hurt too much now. I think I have just made more out of it than was necessary. I guess I am just a glutton for sympathy.

    I did start my Esbriet this morning. So far, the only thing I have noticed was that about 5 minutes or so after having it crushed and injected into my intestines, I got really dizzy. It only lasted for about 15 minutes. I’ll keep a record of how it goes when the rate and frequency are expanded.

    Thanks for the best wishes on the shoulder shots for this Friday. I guess there is a chance it might help.

    I will be telling my heart doctor tomorrow that the little sound he said he heard while listening to my lungs 2 years ago, turned out to be IPF. On that check, he said he heard a small click on my left side and that I should let my family doctor know about it on my next visit. I did tell my family doctor what the heart doctor told me, but he said he didn’t notice anything there. He was my same doctor that noticed the crackle early this year and started the discovery of the IPF. Maybe he got a better stethoscope that he used then. I just must keep these doctors in business by my constant visits.

    I’ll close this now. I hope you start feeling better and that the bad symptoms you said you were having this morning didn’t develop into anything bad and some extra sleep helped.

    Thinking of you,
    Ray

    • #15217
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Nice to hear from you, thanks for the update on how you’ve been doing! Thankfully, as mentioned to Paula above, my virus didn’t seem to amalgamate into anything other than an excessive need to sleep. I slept 16 hours in a day earlier this week, but other than that and a terrible headache that would go away with pain meds, nothing else really happened which I am happy about. It was good for me to set aside things that day however and spend time resting, which is clearly what my mind and body needed.

      I noticed in your reply to Paula that the forecast there was calling for some snow. Did you end up getting any? Apparently we’re to get snow here tomorrow, and it sure feels like it .. it now feels freezing here! The cold air makes me cough and cough, so its time to get out my scarves to wrap around my mouth to avoid that. Despite that, I’d rather snow then the terrible amounts of rain we’ve been having. Hopefully that is over now, the small window a few weeks ago felt like it had rained for days…

      I’m really glad you got to visit your daughter in Co. that must have been so nice for you all! I’ve heard Colorado can really be hit with terrible weather, so I am happy to hear it all melted and didn’t give you any trouble for the ride home.

      Thanks for your kind words about the SAD – I actually haven’t been formally diagnosed with it, and thus, wouldn’t take anti-depressants for it. I just typically notice it is a feeling I get, particularly a feeling of being low or upset when there are so many days of cloudiness but especially rain. I actually wonder if the changing barometric pressure had something to do with my terrible headaches earlier this week, since it was +15C on Monday and today it is -3C here…that is quite the shift in just a few days! I love the sun and warmth so winter months here with all the cold is already tough on me, and you’re right – I didn’t experience this in Nova Scotia because I was surrounded by sun, the ocean and warm weather which are three of my favourite things in the world. Plus I was with amazing friends! I’ll be alright, even seeing the sun today was a welcomed change and with a few more days of it I hope to be fully on the mend and feeling a bit more like myself.

      I’m really glad your incisions are healing up well and that the pain in your neck has subsided. I also was thinking about you this week as you re-started Esbriet, and I was hoping it was going well. Sorry to hear of your dizzy spell, I hope that didn’t re-occur with additional doses? Keeping a log/record of it is a good idea and when you can, please keep us posted on how you’re tolerating it.

      Hope your appointment with your heart doctor goes well. What was his/her response to being told the sound they heard turned out to be IPF? I’ll keep my fingers crossed too that your shot goes well tomorrow and alleviates the pain!

      Take good care and chat soon,
      Charlene.

  • #15240
     Raymond C. King 
    Participant

    Hi Charlene,

    No, we haven’t been getting any snow. Just some cold and freezing nights. We haven’t had hardly any rain in the Southern Idaho area. It all seems to be going north of us. We have had a real dry spell. The whole west has not had hardly any moisture and now the forest fires have really started up bad in California and Southern Oregon. So far, we haven’t been getting any of those since camping has well stopped since school and the colder weather has set in. Sorry to hear about all the rain and cold weather has started in your area and that always seems to upset your health problems. A nice warm place like Nova Scotia would probably help some of your SAD symptoms and other problems too but it costs a lot to locate in one of those places. Some of those places aren’t too nice now because of all the hurricanes and now the LA and San Francisco area fires. So many people are now going to be left in the cold, so to speak.

    Happy to hear that your virus problem seems to have abated now after that 16 hours of sleep. Sleep can really help with a lot of problems. I hope the headaches are gone now too?

    Thank you for your kind words about all my medical problems when mine seems to dwarf what you and Paula are going through. My neck incision has well healed up now. I was able to take off the bandages this Friday.

    The heart doctors visit went well although, as usual, on a routine visit with my heart doctor I end up just getting to have a doctor’s PA (Physician Assistant) doing the tests and checking the results. It was kind of funny that the while talking to the PA I told him that I had been getting a lot of migraine problems with the shimmering angle glare in my eyes that only seemed to last 15 to 30 minutes. He told me he worked with a pain and spine doctor for several years before coming to the Cardio office and that the pain doctor could give me a Sphenopalatine Ganglion Block that always seems to work. I asked him who the Doctor was, and he told me. I said wow, I have an appointment with him on Friday to give me a shot in my shoulder and I will ask him about it if he has time. My heart ECG and other tests went well. He did listen and confirm he heard the crackles in my lungs from the IPF. My EKG test and SpO2 levels were in the mid-90s and blood pressure was 110/56 so everything was well within ranges.

    On Friday, I did go to the Pain Dr to get the shoulder shot. I told him about the Migraine condition and the Sphenopalatine Ganglion Block that the heart PA told me that he gives. He said that they only do that block in rare cases as it is permanent. He said if it is really bothering me, there are a lot of medications that can help and to let him know if I want to try any. I told him I didn’t have them very often and it seamed to happen more with the bright sun and other bright lights that caused them. He said that was a common cause. I later looked up the subject of migraines on the internet. It seems to be a pretty common problem and if the shimmering goes away after a short time, no real treatment is needed. I don’t get headaches with them, so it probably isn’t caused by any serious brain problem. Anyway, the shoulder shot went well. I just had to lie down on a slab under the X-Ray unit for a short while when he gave me the shots of, I guess a combination of Steroids and Cortisone. That is what they usually inject for that type of pain. It has helped a little, I think. It still aches a little, but I can comb my hair now with my right hand and don’t have to support it with my left arm while doing it. I think it was getting better even before the shot so maybe it helps and maybe not. I go back this coming Tuesday for a follow-up appointment.

    So far, the dizziness from taking the Esbriet has kind of stopped. I get just a little dizzy just after I get the shot, but it goes away quickly. I’ve only been taking the 1 one time per day tablet now for 5 days. In another 9 days, I will be taking 2 per day. I have had a couple of nights that I got a little acid reflux, but it didn’t burn like it had a month and ½ ago. I can just chew up a Tum and go right back to sleep for the rest of the night. I’m careful that I don’t eat anything after 4 PM and don’t recline for 3-4 hours after I eat. I also chew 2 of the esophaCool tablets with a sip of water before going to bed. I think that helps too. I have been keeping a log of each day for the Esbriet, so I can refer to it if I need to later.

    We went to a free lunch at the Texas Roadhouse Restaurant at 11:15 AM today. Several restaurants were giving Veterans a free meal today and tomorrow to celebrate Veterans Day. I had to pay for my wife but mine was free. I was a Korean Veteran. I was drafted into the army in 1954 to 1956. I had been an eye glasses lens grinder before I was drafted so I served time as a medic.

    I hope you had a good weekend and it went well. Keep us posted.

    I’ll chat with you later. Keep in touch. I love hearing from you.

    Ray

    • #15255
       Charlene Marshall 
      Keymaster

      Hi Ray,

      It is nice to hear from you too! Glad you haven’t been getting any snow, ours stuck around for the weekend and then melted. Although, it is really cold here still so I don’t know how it melted… the nights are really cold now, so I am layered to try and stay warm even though I keep my house quite warm.

      I actually just heard about the California forest fires this morning, how terrible for everyone! I had no idea it was going on, and that it has caused such serious devastation. I know Idaho isn’t really close geographically to California, but do you anticipate having to deal with any of the poor air quality as a result of all the fires? By the look of them there are so many actively burning right now. There are amazing benefits to living on the coast in my opinion, such as the beautiful ocean views but there are also a lot of natural disaster risks by the sounds of things. And, with global warming it just seems to be getting worse and worse…

      Thanks for the kind words about the virus. It has seemed to stop and not develop into anything, thankfully. I am still pretty tired, but as you know it is hard to decipher that from IPF due to it being such a common symptom. Thankfully the headaches have subsided too, I think they my have been pressure headaches due to the drastic change in temperature.

      Glad your heart doctor’s appointment went well, I was thinking of you. PAs are big here in Canada, not yet anyways … do you typically have a good experience with them? Sounds like everything was in the good ranges, which is always a bonus.

      Are you noticing any difference in terms of pain-management from the shot? I know it is only a few days later. That doctor seems good and really thorough too. Did you always have the migraine troubles, or did this start since your IPF diagnosis? I am just curious if there is any change headaches might be linked to IPF (due to chronic under oxygenation, stress of a chronic illness, etc). Maybe that is my issue too. That said, headaches are so common that next to anything can cause them I guess! Goodluck with the follow-up appointment tomorrow!

      Good idea re: the blog of the Esbriet symptoms. Glad its been manageable for you so far, I’ll keep my fingers crossed that this continues as you continue to take the medications and even increase the dose. Is the plan to increase it for sure, or do you have an appointment to confirm the first dose has gone well and increase it after a discussion with the doc?

      Glad you had a nice lunch with you and your wife, and thank you so much for what you’ve done for your country. Did you do any other Remembrance Day celebrations yesterday?

      Take care and chat soon. I have a bit of a busy week, so I don’t know how much I’ll be on the forums other than scheduling content but it is a good busy 🙂

      Regards,
      Charlene.

  • #15241
     paula 
    Participant

    Ok Once again I have forgotten how to start a new topic but this was so funny, in a sad way I just had to share it.

    So I get my OFEV from CVS Specialty. They call me this past Thursday to see if I want to order my next months supply. I said yes as I only had 7 days left here at home. No problem they tell me, they will get it to the pharmacy the next day so I do not run out. Great. (I have them send it to the pharmacy instead of me because 1) I do not want to hang around all day waiting for the UPS guy, and 2) if the package is left in my mail box and then disappears, I am screwed. So I have it sent to the pharmacy so they are responsible for the drugs until I get there.

    I received a text from CVS on Friday informing me my script was in. Did not feel like going back out so I went to get it the next day (yesterday, Sat). So I tell the guy at the window I am picking up a script from the specialty pharmacy. He comes back with a really large paper bag. I said that was strange that the pills were in that large of a bag. I signed for it and said to the guy, why is the bag so big. He said it had a large box in it. Opening it a little he said it was a starter box. To which I said that is not right, and asked him to please open the box to make sure the pills were in there.

    So he takes the bag, with the box and brings it over to the pharmacist. Shortly there after, they both come back and she is telling me how sorry she is and she does not understand what happened. I asked her what she meant and she said the only pills in there was for diaherra (sorry to lazy to check for correct spelling) but there was no OFEV pills in the box. She said I would have to call the specialty place, and if I needed her help she would attest that the pills were not in the package.

    Of course the place is not open on the weekends. But I talked to one of the answering persons, who tried to contact the pharmacist to see if the order could be reshipped. He could not. So she talked to her supervisor who began the investigation as to what happened and why the pills were not send. They are aware that I now only have 4 days left at home. So they are suppose to call me in the morning tomorrow.

    I told the lady on the phone that while I appreciated the extra pills for the loose stools (notice I am not trying to spell that word again. lol) that they do a great job BUT they are not worth $10,000.oo.

    Should be interesting to see what happens tomorrow. Wish me luck.

    • #15254
       Charlene Marshall 
      Keymaster

      Hi Paula,

      No worries at all, I can re-explain how to start a new topic if you’d like? Just go to the forums list: https://pulmonaryfibrosisnews.com/forums/ and click on whichever forum you’d like to post your new topic in and then scroll down to start a new topic and give it a title 🙂

      Oh my gosh – what a crazy and frustrating story! That must have driven you crazy to have to deal with, and thank goodness you looked in the bag to confirm the Ofev was not in the brown bag… it would have been so annoying to have to go out again. I am curious to know what happened too, and I did have a chuckle when you made the comment about how the pills for diarrhea were not worth the $10K! 🙂

      Did they call you to confirm they would be in soon, especially now that you only have a few days left? Wishing you luck that this gets sorted with as little headache as possible. It amazes me all the errors that can happen with  medications! siiigh.

      Hang in there… the saga continues!
      Charlene.

  • #15249
     Michael Lamkin 
    Participant

    I just wanted to share my experiences so far after using Esbriet for a little over three months.

    Worst side effects so far are diarrhea (constant after 7 weeks use) and a skin rash on forearms, hands, legs and scalp probably due to sun exposure. The rash started as red spots on my forearms about the size of a pencil eraser and then became kind of risen and started itching like crazy.  My arms turned bright red even after the itching subsided. The rash then spread to my legs and scalp but fortunately I started to stay out of direct sunlight and taking medication before the itching got too bad in those areas. Severe stomach upset four or five times after using for about 10 weeks with full dosage. I’ve experienced a reduction in my appetite and a decreased tolerance for spicy foods. Blood work completed ever 30 days has so far remained normal.

    The severe stomach upset seemed to usually occur after enjoying a spicy dinner. A medication taken for a couple weeks in addition to avoiding sun exposure has taken care of the skin rash. My arms and hands are still red and very dry and scaly even though the itching has subsided. I discontinued the use of Esbriet for 3 days and diarrhea went away but immediately came back after I started using Esbriet again.

    I’d like to hear if anyone else has experienced these or similar side effects and if you have been able to manage them.

    Thanks, Michael

    • #15252
       Charlene Marshall 
      Keymaster

      Hi Michael,

      Thanks so much for getting in touch and letting us know how you’re making out with the Esbriet. I know lots of people find it really helpful to hear about others’ experience with the anti-fibrotic medications for IPF. I can only contribute to my experience with Ofev as I’ve never tried Esbriet, so I know others will be glad to hear from you.

      All that said, I am so sorry to hear of the unpleasant side effects you’ve been experiencing! The diarrhea and the rash sound awful. I know from others’ sharing their experience that sun exposure can be really difficult for those on Esbriet. Others have had a similar reaction too, especially after the sun. I’m glad that is starting to subside but sounds like it has been a tough-go for you. Have you connected with your doctor about these specific side effects?

      I am glad to see that Paula replied to you as I know she had a reaction to Esbriet, as did another member of our forums – Al Arnold. Hang in there, and I hope connecting with others gives you some insight into how to manage this a bit easier for you.

      Warm regards,
      Charlene.

    • #15256
       Claudia Sundberg 
      Participant

      Hi Michael,

      I just wanted to share some of my journey with Esbriet.  I started it at the end of June and was on it for for 3 months.  At that point we were on a 47 day vacation and I was having bad stomach pains and diarrhea.  I figured I would stop taking it so I could enjoy the vacation.  The stomach pains disappeared by the next day but it did take about 2 weeks for the diarrhea to stop.  I started titrating back up in September and at this point I have no stomach pains but I do have the friendly diarrhea back again.  The diarrhea is at this point pretty predictable so I know when it’s coming.  Lately, though, I have been getting headaches and sinus issues that are not a cold.  It might be the change of seasons here in MN with our January temps in November.

      I am ok with the side effects at this point and do not plan on stopping it.  I hope it is helping.

      Claudia

      • #15281
         Charlene Marshall 
        Keymaster

        Hi Claudia,

        Thanks for sharing your experience with Esbriet with us, particularly Michael as I am sure he appreciates hearing from others who have been on this drug. I can’t share much as I have only been on Ofev. It seems as though the 3 month mark is the “magical” number for problems starting to arise with Esbriet. I’m glad the stomach pains stopped for you, and that the side effects are manageable right now for you. Do you find it is helping you overall?

        On a different note, I’ve really been having frequent headaches as well as of late and am wondering if it is the pressure and/or weather change. Hope yours subside for you soon!

        Chat soon,
        Charlene.

  • #15251
     paula 
    Participant

    Hi Michel

    I used to be on Esbriet. Never had any problems until 3 1/2 months into it when I developed a rash that spread and was very itchy. Long story short, I had an allergic reaction to it. I am now on OFEV which unfortunately I get the diarrhea 5+ days a week.

    Just like the Esbriet, there are many foods that I no longer like. Such as cheese. Let me preface that with I love cheese by itself, but can no longer stand it on hamburger. And I can no longer stomach eating pizza. The mere thought makes me feel ill.

    Have you talked to your doctor about the itchness? Do. They took me off of the Esbriet for 2 weeks and then we attempted to start it again (I also had shingles around the same time) to see if it was the Esbriet that was causing the rash. Within 13 hours of my first pill, I broke out in hives and a rash that was so itchy. I stopped taking it and the rash went away.

    Charlene also knows of someone else that has had an allergic reaction to the Esbriet.

    Let us know how your making out. We are all here for you.

    Paula

    • #15253
       Charlene Marshall 
      Keymaster

      Thanks so much for sharing your experience with Michael, Paula. I know it’ll be helpful for him to hear from someone else who had a similar experience. You’re right: we’re all hear for one another! 🙂

      Charlene.

  • #15264
     paula 
    Participant

    Morning Charlene.

    No they did not call me. I called them and initially they acted like they did not know what was going on. Its suppose to be here today.

    Had I taken the bag and then discovered that the pills were not in the box, it would have been a case of my word against theirs and they would not have been willing to reship. Personally I do not know what happened as it never even showed up on my insurance for payment.

    Raining here. Blah……..

  • #15282
     Charlene Marshall 
    Keymaster

    Morning Paula,

    Thanks for getting back to me, although I am sorry to hear you continue to have the “run around” with the pharmacy. Unbelievable the hoops we sometimes have to jump through as patients! Did it end up showing up yesterday, like you thought it might?

    I guess in the bigger picture, I am glad you checked in the Pharmacy to determine in front of them that the pills were not in there and that it didn’t come down to your word against theirs. Could you imagine that fight? Not one I’d want to put my energy into, so exhausting. I guess that is the one positive to look at if we reframe the experience, right? Still so sorry this happened to you!

    Did the rain subside? Guess what… it is snowing here! The ground is covered now as are all the roof tops. It is pretty but the cold/winter weather brings a whole new set of challenges for me. The most annoying one right now is skin irritations due to the dryness.

    Hope today is a better day for you!
    Charlene.

  • #15290
     paula 
    Participant

    Afternoon Charlene
    Just got my meds today. Phew.

    Sorry that your dealing with those headaches. Hopefully they will ease up soon.

    SNOW????? Nasty word. lol. Yes the rain finally stopped. We are suppose to be getting that dreaded S word Thursday night. Projecting 1 – 3 inches. Should be interesting because I have to go for my CAT scan Friday. Roads should be lovely.

    I hear you on the dry skin. Sometimes I feel like a snake shedding my skin.

    As for having to go up against the pharmacy if I had not noticed that the pills were not there, yeah not something that I would like to do. Not afraid of them, but I have other things that have my attention and quite frankly I would be worried that the stress would only add to the problems that I got when I was so stressed out when we were selling our other house. Thanks but no thanks. As it is, I have noticed that unlike before, the amount of time I can be off the O2 without my numbers dropping low is shrinking. And I have noticed a few times that my numbers if low enough are not rebounding as quickly.

    I was telling my friend this morning that I suspect I will be heading to Boston soon. Then the big question is whether or not they feel I have gotten to the point where I need to be put on the transplant list. That issue is such a mental balancing act for me. Do I really want to be on the transplant list? No. But I also do not want them to wait until things are so bad that breathing becomes even more harder. Then there is the chance for what ever reason I do not qualify for the list. Scary.

    I just bought tickets for my son and myself to go to a Boston Celtics game in Feb. We go at least to one game a year. Have been for 10 years now. My husband does not think I should go, saying it will be too much for me. But I told him I was going. That this might be the last time I can do this, so I am going. Something that both my son and I look forward to.

    Well I have to do a couple of things before getting supper going. I hope all is going well on your end. And it would not hurt my feelings one bit if you decide to keep the snow up there. lol

    Paula

    • #15298
       Charlene Marshall 
      Keymaster

      Hi Paula,

      Sorry for the delay in getting back to you, my headache has been back the last few days which is so frustrating! It feels like I just get it under control, then it returns. My guess is that it is due to the weather as its pretty up and down here right now. Right now, outside my window, I can barely see outside or across the street! There is so much snow, which is coming from a snow storm hitting the US Eastern coast. Fingers crossed it isn’t too bad!

      So glad you got your meds, and sounds like just on time too. Did you ever find out just what happened at the Pharmacy and not having your pills included in the bag? Just really glad you got them in the end.

      Thanks for your kind words about the headache – I wonder if I am actually not drinking enough water, and am dehydrated? I can’t imagine it is a virus that is lingering around this long but who knows I suppose. I’m going to dry to drink more!

      I can only imagine the mental balancing act of being on the transplant list. Did they give you a lung function / FVC / % that they want you at before they consider transplant? Curious to hear as this is how they typically do it here in Canada.

      I’ll try my best to keep the snow up here for now, it sure is falling like crazy right now. Can’t imagine clearing my driveway out… not sure what I am going to do about that this winter. Something Ill try to deal with later as I’ve been on the phone all day dealing with insurance issues pertaining to the accident almost one year ago. It’s unbelievable the delays and “snags” that can happen with things like that. Probably similar to what your experience would be with the pharmacy if you had to deal with them. I’m just so glad you didn’t and you could conserve that energy a bit.

      Hang in there, and chat with you soon. Let me know how you make out tomorrow, and whether or not the snow finds you tonight.

      Charlene.

  • #15291
     Raymond C. King 
    Participant

    Hi Paula,

    Sorry to read about all the problems you have had about getting the pills you need, etc.
    I see where you are still waiting for your acceptance for a lung transplant. When do you see your doctor next to find out if you can qualify? Waiting for results that might help seem to just intensify the stress you still have. I hope you can learn something soon.

    I hope you don’t run into any road problems when you go for your CT Scan on Friday. I have been noticing the weather on the East Coast a lot. I guess you are not looking forward to 1-3 inches of snow forecasted for your area and I guess there may even be more up and down the 95 corridors? It seems like you have been getting all the wet and cold weather there and the Western States areas and where I am, having just been getting dry conditions with high fire warning areas. We haven’t been getting the bad smoke from the California and Oregon fires like we were. It seems that the winds are blowing the smoke to the West. I guess that is bad for the Los Angeles and San Francisco areas because the fires mostly started in the mountains east of them. We do need the moisture, but we have been getting a few nights down in the single digits with the days in the upper 30s and 40s. We get a lot of cold wind blowing from the surrounding mountains that now have snow on them. I guess its just winter and that can be anticipated. I’m sure the snow will soon start to fly locally soon.

    I hope you don’t have a problem when you go to the Boston Celtics game in February. Has that always been a tradition for you and your family or just you and your son? I hope everything works out well for you. I hate to fight the crowds at those type of events. I just stick to watching games on the TV. I guess the game would be blacked out on TV though in your area?

    I’ll close for now. Take care.
    Ray

  • #15292
     Raymond C. King 
    Participant

    Hi Charlene

    I have been noticing the cold temperatures and other winter type weather in your area. We have had low temperatures too and I seem to always get cold. I too try to keep the house heat thermometer turned up a bit, but my wife always says its too hot. I try to keep peace and compromise and turn the heat down some. She tells me to put on a sweater. I have a couple I can grab and that helps.

    We are about 775 miles from San Francisco, CA fire areas and about 850 miles from the Los Angles, CA fire areas. We are in the dry high fire danger area too like most of the Western US States. We have had some wildfires too, but the fires were in the mountain’s areas. Most all our wild firefighters are now in the California area helping to put out those fires. Since most of the winds are now blowing to the west, it is blowing most smoke away from Idaho, so our air quality is clear.

    Yes, I have had a pretty good experience with the Pas. Most of them have been working with the doctors long enough that they seem to know what to do. If there is anything they may question, they can always consult with the doctor.

    I had a follow-up appointment with the pain doctor that worked on my shoulder Tuesday. I think the shoulder shot worked a little, I’m not sure. I was starting to get a little better before the shot. I assumed I was allergic to one of the shots but wasn’t sure as I had been taking the Esbriet again for 4 days. I took some Benadryl. By Tuesday, the swellings were down. I did ask the doctor if there was anything in the shot that may have caused it. He said he didn’t think so as he always has given me the same shot in my back, neck, and shoulder 2 years before and it didn’t happen then. Other than that, he said he didn’t know what caused it.

    I hope things are still going well for you. I know you are busy answering everyone all over the forum.

    Until later,
    Ray

    • #15300
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your message and for following up. It is nice to hear from you!

      Please excuse my brevity of this reply, as I am trying to correspond back with as many people as I can while the pain in my head has subsided. As I was saying to Paula, I’m not entirely sure if it is due to weather/pressure, dehydration, under-oxygenation or a virus I am fighting. All I know is that I am so sick of this headache; its really hard to keep up with the forums and other computer-specific tasks I am trying to do.

      Right now it is so cold here, and the snow is falling so heavy that I can’t even see across the street at the moment. It is the same system likely that Paula is getting as I think this is coming up from the US Eastern coast. Fingers crossed it doesn’t dump on us too much!

      Glad your air quality is clear, although my heart just breaks for those in California. I actually have a few colleagues I work with through BioNews who reside in California and are lung transplant recipients. The air quality must be so scary for them right now. Have been thinking of and praying for all in California frequently.

      Glad you think the shot worked at bit, even that I would guess is some progress? Hopefully the pain has subsided for you. How is the Esbriet doses going for you? Hopefully you’ve not had any sign of trouble? Sounds like the swelling did respond to the Benadryl, which is good but I know it can be a pain to always take that with potential allergic reactions due to the drowsiness it can cause.

      I’m doing well other than these headaches. Hoping I can get them under control before going away this weekend. Some friends and I are going to the States actually, so I also hope the weather isn’t too bad!

      Take care and thanks as always for the lovely update 🙂
      Charlene.

  • #15304
     Steve Dragoo 
    Participant

    Hi Charlene,

    I had a contrast dye mri on my kidneys a while back and getting headaches from it, which affects many people that do this procedure.  There is a lawsuit started against the company providing the product but idea if it will be successful.  Just thought I would mention it in case you did this…

    SteveD

    • #15316
       Charlene Marshall 
      Keymaster

      Hi Steve,

      Thanks for sharing this information, that is really interesting information! I did have a contrast dye MRI on my head in June to identify any possible neuro issues following a concussion at the end of last year. I can’t imagine it is related to the dye, but super interesting… wow! My headaches may be any number of things unfortunately: a concussion, neck injury (whip lash), weather/pressure or medication related. Who knows! Thanks for sharing 🙂

      Take care,
      Charlene.

  • #15305
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for your quick response even though you are rushed and still fighting that head pain. I hope you can find a solution that will help soon.

    Thank you for inquiring about how the Esbriet procedure is going for me. So far I haven’t had any real bad symptoms except the little dizzy spell right after I take it. I’m just on that small dose now though. I increase it some next Tuesday.

    I have noticed that the Nor Eastern is really going to hit the East Coast and it looks like Eastern Canada is being hit too. Hence your not being able to see across the street because it is snowing. Having to shovel the snow is no fun, as you are really aware of. Especially hard in your condition. Can you get someone to do it for you?

    This front seems to be coming from the South of you now. I hope it passes your area fast enough not to foul up your trip with your friends to the States this weekend. Will you be driving or flying? If you go, I hope you have a good time. Just watch those taxi drivers!

    I notice on TV we are going to get another cold storm from mostly north of us and it shows in the projection that it will sweep through Canada later this next week. Winter is here!

    I’ll close now so I can maybe keep my posts a little shorter. Have a wonderful trip and weekend if you can. I will be praying for you.

    Ray

    • #15317
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Nice to hear from you and thanks so much for your reply!

      Thanks also for your kind words about my headaches: I am happy to report that today is so much better, so far anyways. I think I’ve actually tracked my most intense and frequent headaches to being at my desk so I actually asked my HR manager to have an ergonomist in to adjust my chair. It makes sense based on my elbows not being supported and it pulling on my neck/shoulders causing a headache. I’ll start there and see if it helps. For now, I am so happy that the head pain is gone as of this morning.

      Well, we got absolutely dumped on with snow last night and overnight! The snow is now beautifully thick on the trees, and it is beautiful but not fun trying to drive in it. Also, I couldn’t go anywhere until someone came and shoveled my driveway (thankfully it isn’t a big drive) but there is no way I could do it by myself anymore. I get too breathless, plus the cold already makes me cough really bad. I have to figure out how to do this on a regular basis this winter though, I’ll put an ad up soon I think as I want to be proactive about it vs. reactive when we have a big storm.

      Looks like it has passed us by now, and the roads are being plowed. Its very wet now as the temperatures are warming up a bit, but still classic Canadian winter. Should be fine to go to the states tomorrow as the roads are clear, which is great. We’re driving – it is about a 3 hour trip. There is an amazing Christmas store called Bronners in Frankenmuth and it is beautiful. Can’t wait!

      Really glad to hear your Esbriet dosing is going okay, I will keep my fingers crossed that it remains that way for you, especially as you increase it next week. Thanks for all of your kind words, I think of you often and love being able to correspond so regularly 🙂

      Take care,
      Charlene.

  • #15324
     Raymond C. King 
    Participant

    Hi Charlene

    Thanks so much for your reply!

    Very happy to hear your headaches are better today. I hope the chair arrangements request to the HR manager to adjust your chair helps. Is that the HR manager at work or on the forum?

    Happy the snow has started to clear your area now even though you got a good dump.
    I kind of figured out your Canada location and I see you are really close to 3 of the Great Lakes where I’m sure you get a lot of lake effect caused snow.

    It was nice of someone to have cleared your driveway for you. I do hope you can find someone to do it for you the rest of the winter. We have very few people that want to be hired to clear walks and drives here. I have advertised in the paper to get it done and I get no good responses. I did have one person that said he would do it but he refused to sign anything saying he would or what would trigger his start to clear it. I don’t know if he will follow up until the snow starts getting deep here. So far, no measurable snow though.

    I viewed the Bronner’s Christmas Wonderland store in Michigan you are going to go to this weekend. It looks like they have everything you might like pertaining to Christmas. I hope you have a wonderful time.

    I’ll close now. I know you are busy preparing for the trip.

    I love hearing from you as I worry a lot about how things are going for you.

    Ray

    • #15345
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for your message and nice to hear from you as always. I am back home now after a day trip to the beautiful town of Frankenmuth, Michigan. It was a nice day but I sure was tired after being out and about for almost twelve hours, and in crowds of people I was pretty anxious about getting sick. I wore my mask the whole time and I had my friends carry my oxygen for me, which really helped with my stamina and energy levels. The Christmas store is the biggest one in the world, and it is absolutely stunning. I was really glad to be able to go!

      I have definitely tracked the frequency and intensity of headaches to my chair at work. Right now I am on a bit of a break from work to complete this next course of cardio-pulmonary rehab, but I am going in tomorrow to be assessment by the ergonomic specialist. I really think it will help with my headaches, and I am very lucky: my HR Director where I work is very supportive of all of our needs as employees.

      So far the snow has stopped, although it is still covering the ground which I am okay with. It is the big “dumps” of snow that I struggle with, because as you say then it disrupts driving and requires shoveling which I can no longer do on my own. Creating some type of advertisement for my neighbourhood is what I’m hoping to actually to do today. So much on my plate, so I’m having to prioritize getting things done without wearing myself out! I hope a little kiddo in my neighbourhood can do it, and I can give them just a bit of money for it, so it is a win-win for everyone 🙂

      Sorry your advertising for someone to help you with shoveling/clearing the driveway hasn’t been successful. Do you have any close friends/family/neighbours that could help you out with this? I’m sure you’ve already thought about this, so pardon my ignorance for asking.

      The store was lovely, I’ll try to upload a picture in my next post … the displays were incredible at Bronner’s Christmas Wonderland with all the lights and decorations.

      Thanks again for writing, I hope you had a nice weekend as well?

      Talk to you soon,
      Charlene.

  • #15424
     Raymond C. King 
    Participant

    I tried to delete the above accidental post. Please disregard it. It didn’t work!

    Ray

  • #15426
     Charlene Marshall 
    Keymaster

    Hi Ray,

    Your message came through no problem, I received it! Strange that we can now type in the text box of the ‘Starting Esbriet’ conversation, but we couldn’t before. Maybe it is reaching its length capacity? Not sure but I did get your private message so I’ll be sure to write you back there momentarily! I had a really busy weekend, but it was a great one 🙂 I hope yours was too!

    Charlene.

  • #15432
     paula 
    Participant

    This is only a test, had this been an actual test…………………………… message received here as well.

    How was everyone’s Thanksgiving? Good I hope.

    Called my doctors office late Friday afternoon to let them know I have been getting episodes of blue toes (and some times the feet) and blue fingertips. Thankfully it does not stay blue for long. And I have to talk to him about the side affect of the OFEV. The bathroom issue is really getting to be too much. The rate that I am going to the bathroom I should be light as a feather. lol

  • #15450
     Charlene Marshall 
    Keymaster

    Hi Paula,

    Thanks so much for writing, it is nice to hear from you!

    The forums have been ‘acting out’ as of late for some people, and not for others it seems. As an example, Ray tried so hard to write more on this forum thread and check in with us on how things were going but it wouldn’t allow him to do so. Naturally, thought the length of this forum thread may have reached its capacity from everyone contributing such great thoughts, but it doesn’t appear to the case as you were able to post! Others have had a hard time with their messages being deleted, or not reaching me at all and a few are even struggling with their login. Not sure what is going on…super strange. In any case, I am happy to hear from you!

    I didn’t celebrate Thanksgiving this weekend due to being from Canada but I did have our extended family Christmas which was lovely. It was so nice to catch up with my cousins, as I really miss them in the summer months. How was your Thanksgiving?

    Any update on the blue toes and fingers? As far as I understand, that is a sure sign of under-oxygenation, so I wonder if your oxygen needs have increased and your 02 should be adjusted? Do let me know when you find out if you can, that must be a bit scary? Also sorry to hear of your bathroom troubles and the side effects of Ofev… that totally seems unfair, especially given your reaction to Esbriet. Maybe the physician can lower the dose a bit and still have it be effective?

    Thinking of you and hoping today was a bit better for you!
    Charlene.

  • #15461
     paula 
    Participant

    Hi Charlene,

    I kind of knew that you being in Canada did not celebrate Thanksgiving, but figured I would still wish that it was a good day for you.

    I have not heard anything back from the doctor about the bluing. It may be like when I did poorly on the PFT and he simply addressed it when I saw him. I will be seeing him next Wednesday morning. I will let you know how that goes.

    I tell people my falling into the 4% on titanium is because I am soooooooo special. I try to say that with a straight face but usually fail. lol

    Mild day here today. Think I am going to try a new apple cake recipe.

    Hope your having a good day.
    Paula

    ps. no problem on my replying to Susan. We are all in this together.

  • #15490
     Charlene Marshall 
    Keymaster

    Hi Paula,

    Great to hear from you, thanks for writing! How has your weekend been? I’ve actually been offline a bit the last few days which has been quite nice for me.

    Have you heard anything yet from the doctor about the “bluing”? I thought that would be something they would address quickly because if it is under-oxygenation, it would be impacting your other organs, etc. Maybe because it happens quickly and then goes away, they aren’t as concerned? Not sure, but really curious to hear. When you mentioned you’d be seeing the doctor on Wednesday, was that this past Wednesday or the one coming up? Hope it went well if you’ve seen him/her already!

    Mmmm apple cake, that sounds delicious! It’s very mild here today as well, its 12+ degrees which is very unusual for December weather here in Canada. That said, I think it is supposed to “flash freeze” tonight and be in the negative temperatures the rest of the week. Crazy weather, but a good day for baking. Do you decorate for the holidays at your house? I did that last weekend and now thoroughly enjoy being in the living room around my Christmas tree.

    We are all in this together, I agree!
    Hope you had a nice weekend,
    Charlene.

  • #15498
     paula 
    Participant

    Morning Charlene

    No I have not heard back from the doctor yet. See him on Wed. I have a list of stuff to talk to him about, the latest is the light headness feeling I get. Horrible.

    Raining here right now, just got back from my grandson’s hockey game, going up the stairs to the seats, yes with my oxygen I was so light headed. Took me a few minutes after I sat down to get my bearings.
    Not sure what is going on, but something sure is.

    My husband set up the tree yesterday and finished the outside lighting. He gets really into it. I used to but not so much anymore. And I definitely am not one to put up a tree this early but……..

    Well have to run. Making a brunch and then clam chowder for dinner. Hope your having a good day. Talk to you soon.

    Paula

  • #15503
     Charlene Marshall 
    Keymaster

    Hi Paula,

    Thanks for writing, it is so nice to hear a bit of an update about you, although I am so sorry to hear you are now experiencing light headedness. Gosh, I hope that subsides for you soon and you can catch a bit of a break! Have you been able to track it to anything specific, other than exertion like you mentioned after climbing the stairs? Before I started on supplemental oxygen, I would get dizzy and light headed when I would change positions such as sitting to standing but that has been better since starting my O2. I wonder if your oxygen requirements have changed and need to be adjusted? I’m really curious to hear what the doctor says on Wednesday, I hope it is a positive visit! Please let us know if you feel up to it….

    It’s very rainy here too today, and while I don’t mind the mild temperatures, it is supposed to change this week for us and usually the drastic change in temps is when I get sick. So I am being cautious about that! The last thing I need is to fall ill before leaving on vacation to NYC next week.

    Hope you had a good brunch and dinner! I need to come visit your house, sounds like you are quite the cook. Enjoy your Sunday evening and wishing you a good week ahead.

    Charlene.

  • #15513
     Raymond C. King 
    Participant

    Hi Charlene,

    Belated Happy 31st Birthday. I’m sorry this wish is late. I didn’t know when it was. I hope the celebration with you and your dog watching Christmas movies, the spa visit, and order-in dinner was relaxing for you. You really needed some good things going for you.

    Really happy to hear from you as I know you really needed the rest and to get away for all the correspondence for a while. You have really been having a lot of problems going on with you that have caused you a lot of stress trying to solve what to do about those pesky new occurrences. I am very happy that some of the problems have quieted down for a while.

    Thank you for your nice inquire about my wife and my health problems. My wife is still having the shoulder, back, and neck problems and is making visits to the Chiropractor. She goes to him again tomorrow. I have been taking her because she can’t boost herself into her car and she has problems even getting into the passenger seat of our other car. I think after tomorrows Chiropractor visit, he will recommend her to Physical Therapy. Her stiffness has been a little better, but she still can’t sit, or lie down, or reach things very well. I must help her put on the ice packs. She can still tape on my bandages and operate the syringes when she gives me my medications 4 times per day, but she can’t crush the pills to prepare the meds. She puts on ice packs 3 times per day for about 20 minutes on each place she is having problems and walks as much as she can in the house.

    As for my sickness from taking the Esbriet at 2 pills per day. The vomiting stopped almost immediately after I quit taking the 2 Esbriet’s and I started feeling good again. I go to the pulmonologist again Wednesday. I think he said he was going to run more testing on me to see how the IPF was progressing. No, I haven’t discussed taking Ofev. I will question him about going to it on my visit. I know initially that he wanted me to use the Esbriet because it was least likely to cause me problems. I know that one of the things OFEV wants you to tell the Dr before you receive OFEV is if you have had heart attacks and that if you have a bleeding problem. I have had heart attacks and I am taking Plavix, a blood thinner. so maybe that was it. I don’t remember exactly what he had said as both drugs were new to me and I didn’t know anything about either one at that time and assumed he knew what he was talking about.

    I went to my regular doctor this morning on a scheduled 3-month visit. He examined the healing scab on my neck where the other doctor had opened the spot to get to the vein to extract the IVC Filter stint. It had not been healing very well and a few days ago, festered up and some puss built up and drained a little. He said that one of the self-dissolving stitches probably hadn’t completely dissolved yet or there was something else in it. He gave me some different kind of salve to use on it other than the Neosporin I was using. He said he didn’t want to lance it yet and to give it a couple of weeks to see if it would heal up and if it showed redness or more swelling, to make another appointment.

    I am happy to hear that you found someone to do your snow removal. Sounds like you and Paula have been mainly getting a lot of rain? We haven’t been so lucky, I guess. We did finally get some snow. We got about 4-inches Saturday night and Sunday morning. At about 9 AM Sunday I heard someone shoveling the snow and asked who he was. He said he was the 16-yr old kid that lives across the street. I think his mother had sent him over. Last year he and his mother came across the street and helped my wife do some of the snow shoveling. He had done about ½ of the driveway. I told him I thought I had someone hired to do it. I asked him how much he wanted to do the job. He said there was no charge and I told him I would be happy to pay him and asked how much he wanted. He kind of stuttered and said $5. I told him I’d be happy to pay him more than that if he would do it. Just a short time later, he had just shoveled most of the driveway and said he was through. I guess that was all he had intended to do. I told him we would like the sidewalks done too. He said OK and came back a short time later. I saw him talking to someone on his cell phone or he was playing a game, but he finally came to the door and said he was done. There was still a lot of the sidewalk and part of the driveway that needed to be cleaned and I pointed out exactly what we wanted still done. He finally got it well cleared and we decided we’d give him what we were going to pay the fellow we think we had hired to do it for the winter. We gave him $35. The guy we thought we had hired never did show up, so I guess we are “still out in the cold” for someone to clear our walks this winter. We did get about another inch of snow last night and this morning but no one else has been clearing their walks so I guess we will just leave it. The temperatures are supposed to be in the upper 20s daytime and close to the zeros the rest of the week. Maybe more snow Wednesday/Thursday.

    Really sorry you must put up with having to go to work and having the school finances to pay along with just regular living, especially in your condition. Did you finally get your settlement for the terrible wreck injury you had last year, or are they still fighting it? I hope your attorney didn’t take everything as I know they seem too.

    Sounds like you have a cute dog. My son and daughters all have dogs. My son’s dog has been costing him a fortune for medical charges. His dogs are both small Shih Tzu’s and their legs and ears are always having something wrong with them. I think they have paid as much for surgeries as it costs for his and his wife’s procedures.

    I really hope you have a nice vacation with your Mom in NYC this next week. How long will you be there? I hope the weather there will be good. I notice on the TV news that NYC is having a lot of rain also. Have a good time but just beware of the Taxi Cabs.

    I’ll hope this post goes OK on Starting Esbriet. It’s kind of hard jumping back and forth between both locations to see how you and Paula are doing and corresponding at a different location.

    I’d better close now. I hope this isn’t too long and it still posts. Keep us posted on how things are going. I love to hear how things are going for you.

    A person that worries about you,

    Ray

    • #15550
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your kind birthday wishes, I am so appreciative and as always, its nice to hear from you. I had a great birthday, really focused on what I wanted/felt like I needed that day which ended up being very quiet and calm; a drastic difference from my regular days. It was a good day and I am just hopeful that the upcoming year will be filled with lots of good for me, and for all of us. A new year (birthday or calendar year) always brings me a lot of hope, so I am trying to hang onto that.

      So sorry to hear your wife is still dealing with the pain, that is terrible and I do hope she finds some relief with the chiropractor. Did he make the referral for physical therapy? Do they know the root cause of the pain and discomfort? Sounds like she is doing all she can to alleviate the pain, kudos to her as I know this isn’t always easy. Sometimes I just crawl into bed when I am uncomfortable and don’t want to do anything else. I’ll be keeping my fingers that she gets some relief soon!

      Did you have much luck at the pulmonologist yesterday (Wednesday)? I’m glad the sickness stopped when you ceased the Esbriet, although I am a bit sad for you as I know we all hope we can tolerate the medication that might prolong our lives. I’d be really curious to know what the doctor says about Ofev, as I know I haven’t has as much trouble with it, but I think Paula is having a tough time so it is just how your body reacts I suppose. I didn’t know about the comorbidities that might cause issues with Ofev, so perhaps as you say, that is why the doctor didn’t recommend it at first. Curious to hear what the pulmonologist says!

      How is the incision on your neck healing? Hopefully better now with the prescription cream that the doctor provided. You certainly didn’t need that to happen! Hard to believe (for me anyways) that was 3 months ago you had the stint placed already…

      Yes I am thrilled about finding someone to help with snow removal too actually! It was the highlight of my day when the text message came through from a neighbour offering to do this for me. We’ve gotten quite a bit of snow through the night and into the day, although it is really pretty today (nice and fluffy stuff) it is going to cause a bit of a headache for drivers. Hopefully you aren’t getting more snow there? I was just looking at the weather next week, for when I am in NYC and it looks to be about 10 degrees C and sunny, which I’ll take for spending time outside in that beautiful city. I’m pretty excited about that! We will be there for 5 days, next Thursday – Monday so that will be really nice. My Mom is excited to go, and I’m looking forward to spending time with her there.

      Re: the accident, the settlement is in process and definitely getting closer to being over. Hard to believe how long it takes, and the “fight” to even get this far has been exhausting. That being said, it’ll be nice when it is all over and we can put that experience to bed by wrapping it up with a nice cheque. It’ll also give me more to think about in terms of it will financially secure me a bit more to stop working, because there is nothing that I want more right now, especially with all the internal politics/crap going on in our agency. It really makes me value my time at home, and I just want to scream at my colleagues about what really matters in life! It’s hard because this is a gift that my disease has taught me, that others will never understand unless they’re faced with a life-threatening illness as well. Oh well, life goes on I suppose…

      I’d better close now as I’ve been quite busy this week and have tons of catching up to do / posts to make on the forum. Stay warm and I look forward to hearing from you when you can.

      Take care,
      Charlene.

       

       

  • #15562
     Raymond C. King 
    Participant

    Hi Charlene,

    Thank you for taking the time to reply to my post.

    I have been feeling very sorry for Paula with all the problems she has been having. I guess she is really having bad results with the OPEV reactions. I wonder how many people have been able to use either the OPEV or the Esbriet long enough without problems to have said it slowed down the IPF. Maybe someone has had some promising results from taking them but it’s hard to know for sure. I suppose in this forum, all we see is people posting problems with those drugs.

    Thank you for your nice inquire about my wife’s health problems. Thurs, she went back to the Chiropractor and he looked at the results of the 7 x-rays and said for her age, the shoulder and hip joint sockets look very good. The neck and back both have arthritis in them but her back repairs she had earlier look intact. He said without and RMI on the shoulder cuff he couldn’t tell too much by the X-rays but since she is starting to gain motion in both shoulders from the stretches and icing, she has been doing, he thought maybe she should give it a couple of more weeks and if not better, he would have an MRI run on them. Today, she does think the adjustments he made Thurs helped and she seems to be moving things around and walking better. Her next appointment isn’t for 2 more weeks but she feels that she will just keep doing the stretches and icing and she might be OK.

    On Tuesday evening, I started getting nauseated again and took some Zofran. By bedtime, I still felt a little nauseated but went to bed. About 1:30 AM Wednesday, I woke to feel a little acid reflux and very sick. I took more Zofran and went to sleep after a time. I still didn’t feel well Wed morning. I met with my Pulmonologist at about 2 PM Wed and I told him how I felt. He told me to stop taking the Esbriet since my sickness didn’t come up until I had started it again for a couple of times. He said even if I was able to take 1 pill per day of it that it takes 9 pills per day for it to do any good and he felt I would never be able to work up to that amount. He then said it didn’t look like I would be able to take any of the IPF drugs. He said that there was Ofev but that was out for me as it shouldn’t be taken by someone that has been having heart attacks and it causes stomach and acid reflux problems. He says he thinks that maybe the acid reflux problems that I had for many previous years may have been what caused my IPF. So, he said that since I couldn’t take the drugs, and my 0xy level was above where I would need oxygen, that I should just come in every 6 months and take the (SPV) spirometry and methacholine challenge tests and he would monitor them to see what I may need. I take my next SPV tests about the middle of January. He said there wasn’t much else he could do.

    So, I guess that means an obituary for me as far as my participation in the “Starting Esbriet” Forum. I am really going to miss the friends that I have made on this forum and all the help and concern that has been given to me especially by a couple of people I have been corresponding with. You and Paula have more problems than I would ever want to have but keep plugging along giving advice to some of us that don’t yet know what real trouble means.

    I am very happy that maybe your Taxi accident court case is finally ending, and you can maybe reap a little financial help from the proceeds. I’m sure the suffering has far exceeded what you may receive.

    I do not know the size of the agency that you work for, but it seems that the larger they get politics starts playing with the life of its employees. Some people are just working for what their status is in a company instead of the real things that matter in life. As you seemed to put it, life-threatening diseases and other life crippling hardships mean a lot more than just what a job can provide. I really envy your resilience and stamina to help people see what life all is about. It isn’t just black and white. Just keep fighting and I’m sure you will receive more blessings than a lot of people will.

    It is comforting to know that you have some help for the cold snowy weather you are having. We have had some snow and the fellow I had contracted to clear it didn’t show up when it snowed. A neighbor boy shoveled it for me for $35. I just hired and paid in advance another Landscape company to clear the snow for the year, but I must pay him $240 in advance for each month I contract with them. They figure that would cover 6 or 7 times it snows and if it didn’t, they would refund or credit me for the unused times they didn’t have to come out. I can cancel any time. I am also going to contact them for lawn fertilizing and spider spraying for 2019 too. It is cheaper than what we paid for the same service last year. I hope their service works well, I don’t want to worry about the snow and lawn care if I can get away from it. We are expected to get more snow this next Mon, Tues, and Wed. The temp is still in the single digits at night and in the 20 deg F in the daytime with some wind.

    The news weather forecasts show cold and wet weather going to be covering the East Coast this next week. I hope it doesn’t last through you and your moms Thursday thru the following Monday NY visit and you are going to be doing something special there and have some fun.

    I will be checking the IPF Forum from time to time to see how things are going with you and Paula. I hope Paula can get some good news when she goes to Boston about getting new lungs. She is really having a rough time of it. I also hope things continue to go well for you. You really have a lot of strength and faith that things will go well for you. My Pulmonologist told me about the same thing that you more or less stated. We must look at how well we are doing from day to day and month to month rather than a long in the future. Each day seems to be a new trial.

    I’ll close as this is getting long again. All my prayers to you and Paula and the other sufferers of PF. I hope we can all survive with all the trials this disease piles on us.

    Ray

    • #15587
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Great to hear from you! How has your week/weekend been? Sorry for my delayed response, I actually just finished two fundraising events, one this past Thursday and one yesterday (Saturday) which both were really great but it definitely took a lot out of me.

      I feel terrible about Paula’s reaction to the Ofev as well! It seems as though she’s been taken off of it and seems happy with that decision in order to get a bit of a break from all the unpleasant symptoms. I sure hope they don’t start up again if she goes back on it, but unfortunately know it is a reality. I am very thankful for her and Al (another forum member) along with yourself to be sharing your experience of reacting to the anti-fibrotic medications. So far I haven’t had any reactions similar, but I know they could develop any time so I am kind of “on guard” just waiting for them. It is kind of nice to know what to expect, although, dare I say that out loud?

      I am really glad that the doctor seems impressed with your wife’s diligence in managing her pain and doing her exercises to stretch her shoulders. Kudos to her for that, I know when I dislocated my shoulder that it was so important that I did the stretches but I avoided them due to the pain… probably not the right thing to do in the end. I hope she continues to get a little bit of movement, and steady improvement although I can understand wanting the MRI to find out the root cause of the problem. I am glad to hear that her sockets are in good shape, along with the repairs she previously had to her back. I will keep my fingers crossed that she continues to improve!

      Ah, I’m really sorry that your sickness started up again after beginning the dose of Esbriet. That must be disheartening for you that he encouraged you to stop it altogether? Or are you relieved that you won’t experience the symptoms of the Esbriet anymore? I can see you feeling both ways, or at least I think I would if I were in your position. I have heard of acid reflux being linked to IPF, and know a few people on this forum really suffer with both and aren’t sure which one caused the other. How do you feel about the plan your pulmonologist laid out, like going once every 6 months? I hope your SPV test go well in January.

      Just because you aren’t tacking the anti-fibrotic medications, doesn’t mean you have to stop corresponding on the forums, not at all :). We’d love for you to continue! There are lots of other forums, see the full list HERE for you to participate in and your contribution is always valued. Let me to try to start a conversation thread between you, Paula and I so we can continue chatting, kind of like an email but through the forum messages and we can just continue to correspond that way, even though it isn’t discussing Esbriet. Or, we can email because now I think I have both yours and Paula’s emails. Let me do that!

      Your kind words about the taxi accident, and especially my work environment really touched me and brightened my day. Thank you! You’re absolutely right about the workplace, and people working for ‘status’ vs. what really matters. I used to be naiive to thinking that actually occurred at my workplace, but sadly now I’ve come to know different. If it weren’t for needing the financial stability, I would resign I think… it just isn’t worth it for me anymore, and none of my colleagues (at no fault of their own) can understand what I now value as a result of my life-threatening illness, which certainly is not working every day. I actually got so mad the other day and upset that I wrote my resignation letter, but then realized I may have been overreacting so I am in discussions with my workplace about whether not it is good for my mental, emotional or physical health to keep working. It causes me so much stress to go into work right now (maybe things will change soon…) and I hate that. Keep your fingers crossed for me that things will soon improve on that end of things!

      Glad you’ve sorted out things with the snow removal and future lawncare. Its nice not to have to worry about that, isn’t it? My neighbour did my driveway the other night then text me to ask where I keep the salt so he could make sure it was safe for me to come home. I was so touched (and it was after my really bad day at work) that I cried. I am now trying to figure out what I can do to thank him for Christmas. I’ve never even met him, and he doesn’t want me to pay for it either which is so kind! A true neighbour at its finest…

      My Mom and I are SO excited to leave for NYC this coming Thursday! It is supposed to be about 9-12 degrees C while we’re there, which isn’t bad to be outside in, especially if we bundle up. I hope this week goes by fast, I’m pretty ready to head out of here for a bit of a break. I am most excited about going to Tiffany & CO. (I love their jewellery, even just to look at it…), the Rockefeller tree and Central Park. My Mom is excited for everything as she’s never been 🙂

      I’d better wrap this up now, I’ve had quite a productive day in getting caught up on the forums and some other  work at home. I might have a relaxing evening with a Christmas movie or two with my dog; that is what seems to make me happiest these days! Looking forward to continuing to correspond with you, I’ll try to get that email thread started today.

      Chat soon,
      Charlene.

  • #15565
     paula 
    Participant

    Morning Ray
    I am sorry that the meds are off the table for you. Maybe a page can be started for just being able to check in with one another to see how life is going besides the dealings with the IPF.

    Thank you for the concern you have for me, I really appreciate it and if I have not said it before, you and Charlene are always close to mind. Always wondering how things are going.

    Sorry your wife is still not feeling better.

    I realized by reading one of your postings to Charlene that I missed her birthday. Although to be honest I did not know the date, but HAPPY BELATED BIRTHDAY CHARLENE.

    I am feeling much better since being taken off the OFEV. Sure beats running to the bathroom every time I turn around. My daughter is having a fit over it as she knows that in order to buy me time I need to be on it. But I said to her that this is just a break. BUT if being on it means having loose stools 24/7 I will take a pass. The amount of havoc that would cause my body and just the after affects of the issue are simply not worth it to me.

    So Charlene, I know your busy but you really are the guru on starting threads, could one be set up where members here could check in just because? If not, Ray you and Charlene could also have my email so we can keep in touch.

    Thinking of you warmly.

    Paula

    • #15588
       Charlene Marshall 
      Keymaster

      Thank you for the belated birthday wishes, Paula! That is so kind of you 🙂

      I mentioned to Ray that I am going to get an email thread started with the three of us so we can check in from time to time, and of course Ray is always welcome on the forums even though he isn’t taking the anti-fibrotics anymore. There is still lots for us to chat about and catch up on. You both are on my mind regularly as well.

      Remember that beautiful sunshine that I mentioned in my post this morning? It has gone away now and is replaced by big thick snowflakes and it is freezing again!

      I look forward to staying in touch and I hope you’ve had a nice Sunday.

      Cheers,
      Charlene.

  • #15566
     Raymond C. King 
    Participant

    Good Morning Paula,

    It appears you were up and at it early this morning. I hope it was because you had a good night’s sleep and not because you couldn’t sleep and just had to get up?

    Thanks for your concern about my wife. This morning she said other than having problems moving her legs, she thinks she is getting slowly better. Again, early this morning she needed to get up to go to the bathroom and had me take the covers off her legs, so she could slide off the bed. She thinks its still problems with her hips. I think that the small amount of arthritis the x-rays showed that is what is causing her problems. The only cure for that is to keep moving until the information gets better and take pain medication her Chiropractor told her. She takes the pain meds when she goes to bed, but they wear off after a few hours. It’s still just us suffering from getting old and there is no way to change that other than the alternative. Sometimes I think the alternative might be better but when things are running smoothly, I feel its best to just push on. There’s still too much that has to be done and prepared for that event and since I procrastinate a lot, maybe it will never get done.

    I didn’t know when Charlene’s birthday was either until she mentioned that she had a good time celebrating it. I guess she never did mention it anywhere in any of her posts before, so I was late with the BD wishes too. I was happy to hear she felt well enough to celebrate it.

    I am happy you are feeling better now after getting off OPEV and able to get your digestive tract back to normal again. I hope your daughter will understand that being miserable all the time is just not worth maybe extending your life a little. There is no real proof that the 2 drugs they have will do what they say. Maybe the few days it might extend our lives would be a curse other than a reward.

    I never had the diarrhea problems from Esbriet, but it was one that they list as a possible side effect for both drugs. Maybe I didn’t have those problems because I take Hydrocodone 4 times per day for J-Tube pain and it stopped the IPF dry cough and it causes some constipation. I too am feeling great again since stepping the Esbriet. I felt better with no more nausea the day after stopping taking Esbriet. I even felt enough better that I have fixed a dinner style lunch on 2 different days and still feel well enough after standing for a long time to eat some of it when I was finished cooking it. I try not to eat anything after 3 or 4 PM and that helps with the night acid reflux problems I seem to have sometimes. My wife was pleased as well because she is getting tired of eating frozen TV dinners and a home cooked meal tasted much better she said. She doesn’t like to cook especially when it is usually just for her because I am not hungry enough to eat anything.

    It would be nice if the 3 of us did have a separate place to keep track of each other than posting it on just this Starting Esbriet Forum. I would be happy to provide either of my e-mail addresses if that would be the preferred way to keep up with how we are doing without having to take up space and posting personal stuff which is of no concern to other people. I always feel guilty about my long posts which don’t pertain to the Esbriet subject. Maybe there is a better method?

    I hope your days look a lot brighter and you can keep feeling better. Keep up your good spirits. I hope things keep going well for you.

    I really look forward to keeping track of you and Charlene and you are on my thoughts and prayers.

    My best wishes to you and your family,

    Ray

  • #15568
     paula 
    Participant

    Hi Ray

    Glad to hear that your wife is feeling a little better. I take the store version of tylenol every night to help with the stiffness I have in my knees and where ever else my body decides wants to be a pain.

    Very happy to hear that you have been feeling well enough to make a few dinners and eat them. Awesome news.

    I never did have issues with Esbriet which made my having the allergic reaction to it all the more frustrating. . Such as life. I am going to enjoy my month of freedom of not having to take the pills and visit the bathroom so much. Like you I am not sure how much either of these drugs do. I know they are not meant to cure you or stop the progression, only to slow things down. Which so far seems to be the case in terms of the scarring. Sadly the function test said otherwise.

    Here is my email address if you or Charlene would like to write me, heck I really do not have an issue with others here if they want to reach out privately. They just need to put a clue in the topic area so I know who they are.
    [email protected]

    Well I have to run, very cold up here but very sunny. Suppose to possibly snow tomorrow. Yuck.’
    Paula

  • #15569
     Raymond C. King 
    Participant

    Hi Paula,

    I guess it is Ok to use this forum for a little personal information too but I have been worried that people who were looking for just the Starting Esbriet subject might object. My posts have been so long and mostly on a personal way to talk to my two friends. I did send you my two email addresses via email a short while ago. The use is for your preference.

    It is cloudy and cold here now too and the weatherman just said that snow was possible tonight.

    Better close now. I have a couple of projects I have been doing and I’ve got the house kind of messed up.

    Just Ray

  • #15589
     Charlene Marshall 
    Keymaster

    Sending an email to you both now, so we can continue chatting! I look forward to it and hope you’ve both had a wonderful Sunday.

    Your friend,
    Charlene.

  • #15611
     Raymond C. King 
    Participant

    Hi Charlene,

    I’ll reply now to your post you made on this forum since it will make it easier for you to see what I am responding to. Later, I’ll use the email setup we 3 have started. If I have any new Esbriet info, I will still post it here.

    My weekend went well, thank you and I’m happy yours went well also

    Thank you for the worry over my wife’s pain problems. That’s really kind of you to inquire.

    Her stretches and ice packs have been helping her somewhat, I think. Early this morning, I woke up and found her bed empty. She said her back hurt her so bad that she had been sleeping in her recliner chair. I guess that worked because she was moving around well later this morning.

    I just helped her put some strap around ice packs on both of her shoulders and upper arms. She uses the ice packs on her shoulders and then uses them on her back and neck 3 or 4 times per day. They are quite large, and she needs help strapping them on. I really think she is getting along a lot better as she doesn’t wince with pain when she moves and sits down as much as she had been. The walking and stretches etc. seem to have helped her.

    Sunday afternoon my daughter and 2 of her children came over and got our Christmas tree and other decorations from the cupboards and other storage places in the basement and upstairs closets and set them up for us. They decorated the tree and hung up all the wall and lighted window hangings around the house. That really perked my wife up a lot especially since they had to make several trips up and down the basement stairs. Now, she has about everything ready for Christmas. A lot of worry and stress now over with. I hate to say it, but I didn’t even move much out of my recliner while they were working. They were fast, and it only took them about an hour. The boys are tall enough to reach all the wall hangings without using a ladder. Then when they were done, my daughter had to go work her 12-hr shift. She seems to never need or get rest or much sleep.

    I hate to say it, but I don’t feel bad about having to stop taking the Esbriet. It made me so sick that I don’t miss it at all. I don’t know what it will mean in my expected life cycle, but I am so old now and I have lived a good life and feel that I have lived longer than I ever thought I would anyway. A few more months added to life over what taking the drugs would do might not have been worth it. I might be in a condition then that I would wish I was dead anyway.

    I guess you are back to work again today even though it is getting harder and harder to put up with the working conditions. With the horrible health conditions, you are experiencing, I don’t know how you take it anyway. It is too bad that you couldn’t use the attempted reorganization you said you had prepared but unfortunately finances play the whole role in our lives. I am I a lot healthier than you are and I just don’t know how I could ever put the time in at a job. I find it hard to get up from my recliner just to do a few simple things around the house. I do hope your workers start to realize you have a real problem and not just get caught up in their own simple problems. I’ll keep my fingers crossed that something good will happens to you soon. Are there any disability organizations in Canada that could help you with finances if you had to leave work?

    We are expecting a snow dump starting tonight but ending on Wednesday with a larger dump then. I’m happy we don’t have any doctors’ appointments this week to go to.

    It is very kind of you to want to do something nice this Christmas for the person that took care of your snow removal. I am happy you live in a neighborhood where neighbors look out for you. Most of our old neighbors have moved to other locations and a lot of younger couples have moved in. The old neighbors’ get-togethers we use to have no longer exist. People seem to just stay in their houses and don’t get out. I think, since I can’t go to a lot of the get togethers that still exist because they are mostly early evenings, we just don’t get invited anymore. We always have had to decline. My wife doesn’t want to go alone. I feel guilty about that.

    I think it is nice that you and your mother are going to NYC this week. I hope you have a really nice time. Your mother’s excitement about going there for the first time will make it even more of a great event. Yes, Tiffany’s, the Park and Rockefeller Center should be great to see. Rockefeller Center and that area should really be lit up. I know they have Hop-On Hop-Off Bus Tours that will take you around the city. Maybe you can pick up a boarding location and have an idea of the locations you want to visit so you could use them to get around. The people seem to be friendly there and I’m sure they will help you get around. I’ll email you a lot of the suggestion links to view if you haven’t already got everything else planned while you are there.

    I’m closing now. I’ve filled this forum up with a lot of stuff now and got to get things done.

    Talk to you later and I’ll also get an email sent to you.

    Someone who cares a lot,

    Ray

    • #15704
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for writing! As always, it is nice to hear from you and I appreciate the thorough update on how everything is going for you. Sorry for the delay in replying, I am trying to catch up on everyone’s forum posts (65+) since being away in NYC for a few days so this reply might be a bit short. We can / probably should move lengthy posts like this to email or a private message thread, just to be mindful of others’ activity feeds being filled with our correspondence. That said, I really want to continue corresponding with you and Paula, both! 🙂

      I’m really glad to hear that your wife continues to do alright, and that the stretches and ice packs seem to help a bit. I know my stepDad sometimes sleeps in a recliner chair when his back is bad, and it says it helps him too so I do hope this remedy works for your wife. Does she use any cold/hot topical lotions? I find this really helps with pain too when it is muscular problems we’re experiencing.

      That is so wonderful that your daughter helped with the Christmas decorations! I love having my house decorated for Christmas, it is such a small thing that brings me joy each evening. Who does all the wrapping at your house? Hopefully that won’t be too hard for your wife with her shoulder/back/neck issues if she likes to do it. Really glad they helped you decorate, sounds like a wonderful afternoon and happy to hear that the stress and worry over the hustle and bustle of the holidays (a very real thing for me) is a little less as a result of their help. That’s wonderful!

      Glad you seem content about the decision of Esbriet. I can imagine that would be so hard for someone who couldn’t tolerate the drug, to want to be on it, but not be able to take it. Really glad you’re comfortable with the decision, and I hope it doesn’t impact your lung disease progression too much.

      Thanks for the kind words re: my workplace and my health conditions. I had a very real/authentic conversation with some members of my team last week and I didn’t “hold back”. This was important to me, because I really challenged them about why/what they thought of my illness, and I hope made them think twice about why they’re doing certain things. They put some information back on me to think about too, which is fair but I felt like I said what I needed in order to move on or just “let it go”. It’s a work in progress, and I don’t think I’ll be working much longer anyways so I’ll just go in, do my job well and go home and try my best not to focus on the internal politics/negativity, etc. It definitely is getting harder, and I am very tired by the end of the day too. I’m looking forward to a break over the holidays, as our agency closes from Dec 24th – January 2nd which will be nice! Regarding the disability agencies, there are government funded disability programs in Canada for sure, which would suffice in terms of the money I’d get from that in addition to the money I make managing the forums but it wouldn’t allow much of a financial cushion, which working is allowing me to have right now. I feel much better having that ‘cushion” vs. not, so right now I am just putting up with it I guess…

      I had a WONDERFUL time in NYC, can’t wait to update you and Paula about it. I’ll try to get some pictures emailed to you both over the next few days, but still trying to get caught up on everything and prepare for Christmas as well. We did so much, even the locals couldn’t believe what we accomplished and while I was tired at the end of the day, it wasn’t too much for me physically. We did:  the Brooklyn Bridge, Lady Liberty, the 9/11 memorials and museum, Wall street, Times Square, Rockefeller Center (to see the tree/rink), 5th avenue shopping, Central park, the Plaza hotel, Macy’s and the Empire State building. My absolute favourite though was that we got cheap tickets to see the Christmas Spectacular show with the Radio City Music Hall Rockettes! That was absolutely incredible, and my Mom loved it. She loved the trip overall and wants to go back every Christmas, which is so amazing to me! I’m trying to figure out a way now to capture the memories of that trip for her for Christmas – I’m thinking the Pandora charm for her bracelet that is Lady Liberty 🙂

      Anyways, I should wrap this up and continue replies on this forum but I look forward to hearing from you and hope everything is going well the last few days. I’ll email you as soon as I can!

      Cheers,
      Charlene.

  • #15623
     Forrest 
    Participant

    Good Morning.  I started on Esbriet August 14, 2015 in the usual manor: 3 pills for the first week, 6 pills the second and 9 pills the third  week, the full dosage.  By November I started to notice some of the typical side effects – stomach upset, extreme tiredness, etc.  These effects continued to increase, and by mid-December I had to get off Esbriet; and the side effects stopped almost immediately when I stopped the Esbriet!  After discussing this with my Pulmonologist he suggested I try starting again.  In the mean time I talked with a very good friend who is a NP, and she suggested I start much slower than the usual suggested process, so  on February of 2016 I started with with Esbriet again, but this time with only 1 pill the first week, 2 pills the second week, etc.; it took 9 weeks to get to full dosage, but I have been the Esbriet with no side effects ever since.  Obviously the slower start worked for me.

    • #15680
       Charlene Marshall 
      Keymaster

      Hi Forrest,

      Thanks so much for your reply, and for sharing a bit of your experience with us regarding Esbriet. Sorry to hear it wasn’t a pleasant experience for you, especially after a few months. Really, really interesting to hear of your experience with introducing the Esbriet even slower than suggested, what a great idea / knowledge that was shared from your NP friend! I hope this helps others too, and I’m so glad to hear your symptoms or unpleasant side effects haven’t returned. Thanks for sharing this helpful information with us all!

      Wishing you the best.
      Charlene.

  • #15630
     Raymond C. King 
    Participant

    Hi Forrest,

    Very happy that it worked out well for you. My pulmonologist had tried to do that same procedure the NP suggested for you. But after I had been off from it for 30+ days, and restarted, it didn’t work. After restarting with only 1 pill per day, nausea started again the 3rd day as I said in my above post. Then my Pulmonologist took me completely off from it for good.

    Maybe it is just because my pill had to be crushed and injected through a feeding tube into my intestines that caused the problem. I can’t take anything directly into the stomach and Esbriet states it is to be taken uncrushed and with food. It must just be too strong when it is injected directly to the intestines for me. It probably shocked my system too much. Some people that have been taking the full dose for a period with no side effects and all the sudden develop some bad ones and can’t go on it again.

    I hope your episodes continue to work for you and you can live a long life. Keep the forum posted on any changes if you get any.

    Lots of luck,

    Ray King

  • #15632
     David Collard 
    Participant

    hi to all Esbriet users.  my concern is not starting esbriet, my concern is what happens when you no longer can take esbriet because it is no longer slowing  down the rate of IPF.

    • #15681
       Charlene Marshall 
      Keymaster

      Hi David,

      Really good question, although not one I am sure the answer to but hope others can provide some insight for you. I’d guess the pulmonologist might discuss Ofev with you, as the only other approved anti-fibrotic medication on the market but I know it isn’t for everyone either. Are you still tolerating the Esbriet?

      Wishing you the best!
      Charlene.

  • #15634
     paula 
    Participant

    Good question David. Esbriet was working great for me, or at least it seemed to be. Then my body decided it no longer liked it and make me allergic to it. Then I went on the OFEV. Kind of hard to say how well its doing. Went through a very stressful period when I first started taking it (buying/selling a house). Minor side affect and then about 6 weeks ago the side affects really took hold.

    My doctor did a PFT in Aug and my numbers dropped so much I am now on oxygen (3 liters) 24/7. I used to be able to take a little time off without it really affecting my sat rates but that is no longer the case. My CT showed little change. Doctor told me the PFT is more sensitive and shows stuff before you would see it on the CT.

    So I am off of the OFEV for a month. And then we will try again. Hopefully the side affect of diarrhea will not come back like it was. My doctor really wants to keep me on something to help slow down the process. But as far as I am concerned if the side affects come back like they have been in the past 6 weeks, I will go off of it. The medical issues that the side affect would cause my body outweigh the benefit of the drug IMHO.

    • #15682
       Charlene Marshall 
      Keymaster

      Hi Paula,

      I know your reply was to David, thanks so much for outlining your experience with both Esbriet and Ofev for him. Are you still feeling well since stopping the Ofev? I know your doctor wants you to be on an anti-fibrotic to help slow the progression of your IPF, but I also know you were really struggling wit the side effects. Hoping this note finds you doing better with that now that the Ofev has been stopped for a little while.

      I am back from NYC, and will soon send you and Ray a long email updating you on the trip, but it was absolutely wonderful 🙂

      Hope you’ve had a nice few days!
      Charlene.

  • #15635
     Michael Lamkin 
    Participant

    Hi all!  I’ve been on the Esbriet for about five and a half months. For the first two months the only side effects I noticed were increased shortness of breath, some loss of appetite,  nausea and more weakness than usual. Then the nausea seemed to subside a bit the diarrhea started which continues even now. I also got a nasty rash on my arms and legs which was determined to be caused by exposure to the sun and that was eliminated by taking a medication for a week and covering my arms and legs when I go outside. I guess the people at Esbriet are serious when they say the Esbriet makes your skin sensitive to sunlight, which I ignored for the first couple of months, until I got the rash. Lesson learned! I suppose the diarrhea is probably an allergic reaction but I’ll live with it if the Esbriet is working. I had a CT Scan three weeks ago and my pulmonary doctor said he hought it looked a little better (?) than the one I had eight months ago although the radiologist seemed to feel there was little or no change.
    I have a history of Valley Fever which, after 15 months, had finally gone dormant at the same time I was told I have IPF. A blood test I had a month ago indicated the Valley Fever had returned so I’m now waiting to see how my pumonary doctor wants to proceed. I’ll see him on December 18th. I’m guessing most of you guys aren’t familiar with Valley Fever but if you’re interested please feel free to google it.

    • #15684
       Charlene Marshall 
      Keymaster

      Hi Michael,

      Thanks so much for updating us on how you’re making out with the Esbriet, it’s nice to hear from you! Glad you’re able to manage the side effects of Esbriet thus far, and I hope your pulmonologist is the one that is right about your CT scan – in that, I hope there is some improvement for you. I’ll keep my fingers crossed that the Esbriet continues to be tolerable for you, but so sorry to hear the Valley Fever has returned. Your doctors appointment this week will determine how best to proceed in treating it? Is it common for it to return? I hope your appointment goes well, I’ll be thinking of you!

      Sincerely,
      Charlene.

  • #15661
     May Mya Win 
    Participant

    Dear Charlene.

    I was diagnosed as having PF for about a year.

    Antifibrotic agents were withheld initially because my doctor suspected autoimmune disease. Other medications were tried first.

    My condition deteriorated – respiratory tract infections contributed to this.

    50%of my lungs were gone from the initial 69%reduction. Antifibrotics were now a must.

    I was given a choice -and I chose Ofev because of the simple dosing. But my liver enzymes went off so badly. This improved on stopping the drug. Half the dose was the same story. It was obvious now that my liver was unable to tolerate it.

    My doctor started me on the only other option – Esbiret, the side effect also included liver toxicity. I was very wary and afraid.

    I have been on it since 5thNov and I am now on the maximum dose of 801mg three times a day. There are no tummy upsets and my liver tests are also normal.

    How come this one is tolerated by my liver? Maybe it is a case of ‘one man’s meat is another man’s poison’.

    The benefits of this are that I cough less, and the mucous is also less. My oxygen saturation has increased from 95percent to 97percent while I rest. I cannot, however, exert too much because if I do too much too fast,  it drops to 88percent and I am breathless. Exercise is with oxygen.

    I hope to improve further as it is early days yet.

    The reason of this disclosure is to encourage my comrades who suffer from severe side effects. Take heart- there is an alternative and it may suit you better.

    When starting these expensive medicines, just buy the minimum at first. It may not suit you, and the pharmacy most likely will not take the remaining pills back.

    Charlene, some of us are so fortunate – the right drug straight away. That is the best but there is an alternative for those who are not as fortunate. I sincerely wish everyone the right choice the first time.

    I have benefitted so much from your forum.

    May

    • This reply was modified 5 months ago by  May Mya Win. Reason: please detete duplicate
  • #15687
     Charlene Marshall 
    Keymaster

    Hi May,

    Thanks so much for writing, it is nice to hear from you and I appreciate your sharing a bit of your experience with me. Have you had a nice weekend?

    So sorry to hear that the doctors misunderstood your IPF, and instead attributed it to an autoimmune condition, thus withholding the anti-fibrotic medications. Did any of the other medications for the autoimmune disease help you at all? I have heard of them helping a little bit sometimes, things like Cellcept and/or Prednisone. That must have been so frustrating to know your lung function declined, and also that the Ofev caused trouble with your liver. I wonder if this is a common experience? It sounds like it based on what others have shared with the forum so I am going to keep an eye open for it because I am on Ofev too. Glad you’ve switched to Esbriet, and that your liver seems to be tolerating it better. I’ll keep my fingers crossed that it remains this way for you!

    Good advice to other patients who struggle with one drug, to try the other if they can because it may work for them. I really hope it continues to give you goo results. So appreciate your advice, and sharing your experience to go with it and really glad you’re part of our forums. I agree, it is such a wonderful community and filled with lots of knowledge from other patients. Glad you’re benefitting from it as well!

    Happy holidays!
    Charlene.

  • #15720
     David Collard 
    Participant

    my question is “ending Esbriet” rather than starting it…. I have been on |Esbriet for several years and it definitely has slowed down the progression of the scaring in my IPF lungs. However the last breathing test identified that esbriet was no longer slowing down the progression and the government medical plan was no longer going to support payment. Has anyone experienced this situation and what happens when you stop taking esbriet?

    • #15754
       Charlene Marshall 
      Keymaster

      Hi David,

      Thanks so much for your message, and sorry your inquiry is getting responded to about starting Esbriet vs. ending it. I’m not sure I’ve connected with anyone in the forums (to my recollection, anyways) who has ended Esbriet, without having a reaction / allergy to it as their reason for stopping it. My forum friend Paula said she found it was helpful for her, but then after a few months she developed an allergic reaction to it, and I know this happened to a couple of other folks as well who ended up not being able to tolerate it after a few months, despite it helping them, which is most unfortunate.

      I did get your private message too, which I’ll reply to as well so if you’d rather take this discussion there that is okay with me also, but did OHIP deny covering the cost of this drug for you because your latest scan showed it is no longer slowing the progression? Any chance you could get switched onto OFEV as the other approved anti-fibrotic drug that might help slow the progression, with government coverage? Curious to hear if your doctor mentioned this at all to you. From what I understood, all the forum members who stopped taking Esbriet started to feel better as soon as the drug got out of their system, although I’m not sure what the impact is or has been on their disease progression. Not sure if this is helpful at all? Sorry I don’t have more to share…

      Take care,
      Charlene.

  • #15721
     Raymond C. King 
    Participant

    Hi Charlene.

    I have sent you a message by another source on any personal information.

    I think I am comfortable about my not being able to take any Esbriet or OPEV. I’m not sure how much they would have actually increased my lifespan. The side effects I was experiencing were not worth trying it later.

    I have been feeling well since I stopped taking the Esbriet. I will see how good or bad the IPF is progressing when I have my six-month reevaluation in January and will post how the test went later.

    Thanks for your continued interest.

    Take care,

    Ray

    • #15755
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks so much for your reply, and letting me know you sent me an email. I just checked and received both messages so I’ll definitely respond as soon as I can. I hope to get all caught up on emails today, so if you don’t hear back from me today, it’ll be this weekend for sure 🙂

      I can certainly see your point about the side effects from the drugs impacting your quality of life, especially when we’re unsure how long we have with IPF anyways. I think Paula feels the same way, based on how terrible the OFEV was making her feel also.

      Really glad you have an upcoming test in January – I do too, on January 17th – and hope yours goes well. It’ll be good to have a new baseline to evaluate the disease progression/stabilization from with having the anti-fibrotics out of your system. Please do let us know how they go when you can, and hope you’re all gearing up for a wonderful Christmas.

      Warm regards,
      Charlene.

  • #16726
     Susan Howitt 
    Participant

    Although I have been offered Esbriet I have decided not to take it for several reasons. 1) I don’t have IPF but CPFE + several other lung diseases. 2) because of having several progressive diseases can’t see it working for all of them and not much point in maybe slowing down one or two and not the others.  3) At the moment I feel fine if breathless and am allergic to a lot.  4) Living abroad and with Brexit looming there is a chance that I will not have health cover and at 2,000€ a month there is no way in this world that I can afford it.

  • #16753
     Charlene Marshall 
    Keymaster

    Hi Susan,

    I applaud and respect your decision not to start Esbriet for the reasons listed. Did your doctor understand, too? Sadly, and far too often, patients are judged when they don’t take the drugs just automatically prescribed. Its tough to be in this position, but sounds like you’ve thought about all your options and I am glad to hear that for the most part you feel okay. I hope that continues for you for a long time.

    Warm regards,
    Charlene.

    • #16830
       Tony Buxton 
      Participant

      Susan
      I buy generic ESBRIET online from India at $0.25 a tablet.

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