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Starting Esbriet
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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.
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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.
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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
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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.
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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
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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.
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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
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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
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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. -
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 -
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. -
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 -
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. -
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-
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.
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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
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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.
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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-
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.
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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-
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.
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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 -
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-
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.
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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
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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.
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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.
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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.
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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
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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. -
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
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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.
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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
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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.
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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……..
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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. -
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
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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.
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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
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