Forum Replies Created

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  • justme0956

    Member
    September 8, 2019 at 6:50 am in reply to: Starting Esbriet

    @Roger Mills, I had no side affects with Esbriet. Well for the first 4 – 5 months, then I developed an allergy to it. Then they put me on OFEV. Within 3 months I got diarrhea. Bad. They took me off for a few months to give my body a rest. Then started me back. After a few months the diarrhea came back.

    I am now off of OFEV because I made the transplant list and MGH states that the OFEV interferes with the healing process.

    Bottom line, you need to decide what will be best for you. You really can not compare the side affects that your mom had from her cancer treatments with the stuff for the fibrosis. In reality the drugs only help to slow down the process. Good luck in your decision and if your doctors do not like your decision tell them its your body, you understand what your being informed of, but bottom line is your making the best decision for you. If they can not respect that, then you might need to find another doctor.

  • justme0956

    Member
    June 16, 2019 at 6:25 pm in reply to: Starting Esbriet

    @Marianne, I was switched from Esbriet to OFEV because I developed an allergy to it. I really have not had any issue with the sun while being on either one. I actually think that the Esbriet worked better but I could be wrong.

    My doctor just increased the dosage from 100 twice a day to 150 twice a day as my SOB is getting worse and I am now having episodes where my fingers and toes turn blue.

    As for the cost, Check out. https://www.patientservicesinc.org/     

    They will help with the cost after your insurance company pays what they will pay. Many places that used to provide help for PF meds are no longer doing it.

    As for the projection of when the generic form will be on the market, I have not heard anything but I have been totally wrapped up in the process of trying to get on the lung transplant list at Mass General Hospital. I am at the 3/4 mark of the process.

    Good luck with the meds.

  • justme0956

    Member
    May 28, 2019 at 4:46 pm in reply to: Lung Transplant Considerations.

    As some know here I am currently going through the evaluation process to see if I can get on the list. I am going through  Mass General Hospital, Boston who has a really high success rate. Probably because their criteria is so rigid.

    My thoughts on the concept of a transplant? Scares the crap out of me. I am someone who need to be as much as I can be in control of what i going on in my lift. On this the only thing I have any real control over is my quest to lower my BMI (was near 39 in Jan 2019 (Boston will not consider you if your over 30). Once I got below 32 they agreed to evaluate me. I am currently at 29.4.

    The surgery though……. I am entrusting my life to a team of medical people. ‘

    Do I only want transplants from healthy people? Or am I willing to accept donors who have been exposed to Hep C or a risky life style that put them at risk for HIV? As a former advanced life support EMT I give myself a dumb slap when I forgot that people who work in the emergency services are also considered “at risk” donors.  Hospitals in the US have been doing these donors for approximately 4 years with good enough results that the FDA just approved it, which means the insurance companies will now pay for the harvesting of these organs. Before the approval it was up to the insurance company on whether or not they would pay for the harvesting.

    Still choices on this issue are limited. Do it and hope you do well, or ……. well die.  Since it is my job to be a royal pain in the butt to all that I know, (and some lucky people who do not really know me ;o) ), I plan on sticking around for quite some time.

  • justme0956

    Member
    May 28, 2019 at 4:35 pm in reply to: Clearing Throat

    Not sure if I am dealing with the same issue (although I do have the nasal drip and nose bleeds), but when I am talking all the sudden my voice craps out on me. Sounds like I (for a better lack of description) a frog in my throat. Even trying to clear it, does not seem to do much until it decides to behave itself. Quite annoying if you ask me.

  • justme0956

    Member
    March 16, 2019 at 2:34 pm in reply to: Dying from IPF

    Hello.

    When I am going about I am on 3 liters but when I am on the bike at the gym I bump it up to 5 and that helps my levels to get no lower than 87.

    Congrats Gary on getting on the list. I am not on the list yet, Boston Mass General is considering me. They were waiting to hear from my health insurance before setting up my first consultation. A 8 hour day where I think I will be meeting any person who has an ist at the end of his name. Cardiologist, nutritionist, etc. My insurance company called me yesterday, actually its the RN who will be the go to person through out the entire process and for a year after the transplant. She told me that the insurance company has given the green light for everything, pre stuff and the transplant. I did not ask what my share is but that is the least of my concerns.

    I get winded very easily and I can no longer bring in the groceries. Even when I have my portable on. The last time I did, when I went to switch from my portable to my in house unit, I noticed all of my fingers were blue. Knew that was not good. Put on the house O2, sat down and put on my O2 monitor. I came in at 73. So now, everyone else brings in my food.

    Please keep us informed about your progress getting the transplant. Did they give you any idea as to how long it might take? The RN told me she has seen it happen as early 3 week but as long as 9 months. I am dealing with it one step at a time, because I am sure you know, you can get booted at any stage of the consideration process.

  • justme0956

    Member
    March 8, 2019 at 5:09 pm in reply to: Dying from IPF

    Hi Bill I absolutely LOVE your attitude.

    Boston has agreed to consider me. Scares me the prospect but I am going to do what I can.

    Time will tell. In the mean time I try to stay upbeat and keep busy. Yes I get winded very easily but it is what it is.

    Thank you for your attitude.

  • justme0956

    Member
    March 8, 2019 at 4:56 pm in reply to: Dying from IPF

    When I applied last time, I knew in less than 10 minutes. Once I get the information from the accountant then I will call them and then once that is approved I will contact my doctor to have him do a new script. I believe we will be bumping me up to 150mg. I sent you a note regarding Boston.

  • justme0956

    Member
    March 8, 2019 at 4:51 pm in reply to: Natural Relief for Mucus in the Lungs?

    Nice to know Patsy.
    I purchased some pineapple juice today, sure hope it helps. Anyone have any idea as to how much one should drink? I might have missed that piece of information.

  • justme0956

    Member
    March 8, 2019 at 8:48 am in reply to: Dying from IPF

    Hi Charlene

    I am still waiting on starting the OFEV again; Did not have any bad reactions last time after my break now I just have to wait to apply for the grant.

    Still waiting for Boston. Evidently there was a mix up at my doctor down heres office, I think I got it straighten out and I also spoke to Boston transplant team yesterday. So I wait.

    Gym today and weigh in at Weight Watchers. Fingers crossed.

  • justme0956

    Member
    March 7, 2019 at 9:25 am in reply to: Natural Relief for Mucus in the Lungs?

    Hmmm pineapple. Just might have to give it a try. Thanks for the suggestion

  • justme0956

    Member
    March 6, 2019 at 3:17 pm in reply to: Dying from IPF

    Hi Bill
    Sorry to read about having to sell off the stuff that has been an important part of your life. While there are things that I have had to give up, the latest is bringing in the groceries. Even with my oxygen on my levels drop to the low 70s and my fingers turn blue.

    I will not lie and say I do not have my moments when I get down. I try to stay focused on getting my weight down so I can be accepted in the lung transplant program. I go to the gym to ride the bike but I have to bump up the O2 to 5 liters so I stay above 85%.

    I have been off the meds for a few weeks. I had initially been on the Esbriet and got really good results until I developed an allergy to it. I OFEV is doing ok, but I do not think it does as well as the Esbriet. I am off of them now while I wait to see if I can qualify for the grant money stuff is so expensive.

    I wish you the best.

  • justme0956

    Member
    January 25, 2019 at 9:52 am in reply to: Fighting Fatigue

    Hi Charlene

    Yes I too deal with the fatigue. Amazing you can be sitting there one moment fine and dandy and then all the sudden you are falling asleep, yawning to no end (trying to reassure the person your talking to that they really are not boring you)

    For me the weather is the worse in causing the fatigue. Feeling trapped indoors. Lately I have been going to the gym. I ride the bike. I am up to 20 minutes. Easy pace. Even with my oxygen my sats drop down to 83 but I push forward. Thankfully my numbers still rebound quickly. Today is my first meeting at Weight Watchers to see if I can jump start my weight loss, which had been doing great but now I am at a standstill and if I want to make the transplant list I need to lose more weight.

    Its rare when I get a good night sleep, so it is not uncommon for me to go back to bed after my husband leaves for work and I take an hour nap. Then I am pretty much good to go until after 2 PM but I push forward.

  • justme0956

    Member
    January 25, 2019 at 9:44 am in reply to: Dying from IPF

    I am very sorry to hear of your father passing. I was diagnosed with IPF 2/16.

    Your comments of your fathers last five months were very helpful. Up until last summer I volunteered with Hospice and they are a wonderful group but as you said, they are not there 24/7.

    I have not done any volunteering since we moved closer to the kids this past Aug. As I was put on oxygen 24/7 in Sept and I have been very busy dealing with my declining sat rates. I do stay active, amazing how I feared using oxygen outside of the house and now its no big deal.

    I can understand the depression. Its frustrating to want to do something but its so hard with the SOB.

    I am very sure your dad loved the time he spent with you during this time frame.

    Again I am sorry for your loss.

  • justme0956

    Member
    September 10, 2019 at 11:53 am in reply to: Starting Esbriet

    Thanks Charlene. I think of you often as well. I know your very busy and I hope all is going well for you. Enjoy your trip. I am so jealous.

  • justme0956

    Member
    September 10, 2019 at 11:51 am in reply to: Starting Esbriet

    Robert Obrien ( @bobo )

    I was put on the the list the 20th of Aug. (I had my first appointment in April of this year) I was recently bumped from 3 lpm to 8 and it appears that might be bumped up again.  I would call the person you speak with in the team (my contact person is Jill) about how your getting worse to see if you can bump up your being reevaluated.  Where you are no longer stable one would think that would get you back on the list. As for your age, there was a post transfer guy there slightly older than you and he was doing great.

    Ann is wonderful, but there is only so much she can do. Personally I would also have my pulmonary guy advocate for you with them.

    If you ever want to chat I can give you my email address or phone. Being on the list is wonderful but…… unlike having a time frame, you are constantly waiting for that phone call.

  • justme0956

    Member
    June 23, 2019 at 6:51 am in reply to: Has Pulmonary Fibrosis Changed Your Appetite?

    @Patricia Williams. Last year I dealt with the diarrhea for 11 weeks straight. Horrible (did not lose one ounce stupid fat fairy). I could not get under control. So my doctor told me to go off of it for a few months (at the time I was on 100 2 times a day) to let my body reset.

    This past Feb I restarted the 100 2 times a day and have learned an interesting method to keep the diarrhea in check. This works for me, and it might help you.

    The moment I see the first sign of diarrhea, I immediately take 2 of the pills that were sent with my initial prescription (was told when I no longer have any I can simply buy imodium ad. He said that 2 of those are equal to one of the pills sent with the initial prescription. So in my case it means I would take 4 of them at the first signs of diarrhea). In the past, I would kind of do a wait and see if in fact I was starting with the diarrhea, then take the meds.  This was probably why it got so out of control.  Now with my new way of dealing with it, any issues I have with the medication is really very minor.

    I have been bumped up to the 150 2 times a day because the IPF is progressing to the point that my hands and feet turn blue at times. The increase in meds is being done to try and stabilize the progression while I am in the process of trying to get on the transplant list. Yesterday I needed to use my ProAir because it was getting difficult to catch my breath. Usually doing the inhaler works right away. Not so yesterday. Took over an hour.

    Welcome to our family here. You will find everyone is quite helpful and no question is ever dismissed. Whatever is going on, we are here to listen, offer advice, and be a sounding board when you need one. No matter how big your family is, or how much they try to understand what is going on, We understand what your going through. Might be some slight differences but we get it. Welcome.

  • justme0956

    Member
    June 21, 2019 at 11:32 am in reply to: Has Pulmonary Fibrosis Changed Your Appetite?

    Hi Robert. I am at MGH as well. Have you been put on the list yet? I am almost done with all of the appointments and with any luck, hopefully I will know by the end of July or mid Aug. I will actually be there 3 times next week.

  • justme0956

    Member
    June 21, 2019 at 7:34 am in reply to: Has Pulmonary Fibrosis Changed Your Appetite?

    Charlene, I sent you an email this morning regarding Ray.

  • justme0956

    Member
    June 21, 2019 at 7:33 am in reply to: Has Pulmonary Fibrosis Changed Your Appetite?

    Hi @ Malcolm Mann. My eating habits started changing when I was on Esbriet. I am right now on 100 mg OFEV 2 times a day going over to the 150 two times a day to try and stabilize the progression of the IPF while I am in the process of trying to get on the lung transplant list.

    More than changing my appetite, I find there are foods that I simply no longer care for. Such as cheese. Let me preface that by saying I LOVE cheese and like to have it at night with crackers but I simply detest it on hamburgers now. And then there is pizza. Used to love pizza. Not anymore. Some times I will look at it and say, “mmmmm that does look appealing” but I know I would be lucky to even like one tiny bite. Snacks I used to like, not any more.

    So in answer to your initial question, I do not think in my IPF itself changed the way I eat, for me, it was the medication.

  • justme0956

    Member
    June 1, 2019 at 4:48 am in reply to: Lung Transplant Considerations.

    I am only aware of what they (Mass General Hospital) has told me so far. They are very rigid which probably explains their higher than national success rate.

    Not sure what hospital your working with, but I am sure they will let you know what their rules are.

  • justme0956

    Member
    June 1, 2019 at 2:45 am in reply to: Lung Transplant Considerations.

    My cousin is in year 7 post transplant. Another friend is at 4 years and she has a friend who is at close to 20 years.

    The case manager is giving you the national average.  A lot of factors go into how long you live after the transplant.

    At a recent meeting with the transplant group they were talking about a guy who was 17 years post op before he died but his death was not from his lungs. He had followed their post opt rules to a tee, thus he was very healthy with virtually no post op problems.

  • justme0956

    Member
    May 31, 2019 at 5:12 pm in reply to: Lung Transplant Considerations.

    Hi Robert I just had my cardio cath @ MGH today no stents needed. A cat scan reported that beside that the fibrosis in the right lung the also noted something in the left that is most in likely the fibrosis, but there is a small change its the early stages of lung cancer. Suggest another CT is done in 6 months.

    I will be meeting up with Dr, V near the end of July.  Fingers crossed that they accept me, I do like the team there.

  • justme0956

    Member
    May 29, 2019 at 5:47 am in reply to: Lung Transplant Considerations.

    We were just at Briggs the other weekend. I love them so much that when I was in Plymouth, I would travel up to them to get my plants.

    Coffee would be great. I have no appointments in Boston in June so maybe we could hook up then and I can tell you what I have learn so far on this journey. I was diagnosed Feb 2016

  • justme0956

    Member
    May 29, 2019 at 3:56 am in reply to: Lung Transplant Considerations.

    Cynthia, Good Morning. Not sure if the Generals program is bigger than B & W’s but they are more rigid. Also not sure if there is an age limit. If you like I can ask the next time I am talking to them.

    What part of RI are you in? I live on the Cumberland line (North Attleboro).

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