June 15, 2021 at 3:16 pm #28868JillParticipant
Hi! My beloved is in the process of getting evaluated at St Joseph in Phoenix and here is my current question for those of you who have both been on either ofev or Esbriet and gotten a transplant:are the antifibrotics worth it? Is your quality of life better with the transplant than on the meds?
His quality of life is much lower because of the side effects of the ofev, and he’s tried everything anyone can suggest to mitigate the digestive hell. He’ll probably need to try Esbriet. But I wonder if he shouldn’t prioritize quality of life by stopping the antifibrotics and taking his chances that his lung deterioration is accelerated and he gets a transplant sooner. He’s 62 and has no comorbidities that we know of.
If you’ve been in this situation, we’d love your thoughts and opinions and to know what your experiences have been. What has been best for you and do you have any regrets or wisdom to share? Thanks so much!
June 17, 2021 at 12:26 pm #28903David OtaParticipant
To answer your question: “Is your quality of life better with the transplant than on the meds?”
Answer: “Yes, My quality of life before and after the transplant is exponentially better”
That was a simple answer to a straightforward question. Like most things with IPF and a Lung Transplants answers are neither simple or straight forward. I read your post last night and thought, I am uniquely positioned to weigh in on this topic.
A quick bio is in order, Diagnosed with IPF in 2011, Lung Transplant at St Joes in 2016, Chronic Rejection diagnosed 2020. I was on ofev for years with the stomach side effects. I was also on Esbriet before the transplant, and was actually taking Ofev and Esbriet as part of the ofev drug trial I was on. I will be 62 this year, so your guy and I probably remember the 70s and 80s better than we remember the last 5 years 🙂
When my wife and I were confronted with the end of our IPF journey and started looking at Lung Transplant Centers, Quality of Life was one criteria we considered. Several others were Transplant Survival rates, the trade of IPF for Transplant issues, how far we lived from Phoenix, my job, her job.
When I was finished with the transplant evaluation in 2016, I was shocked that the docs wanted to list me right then and there. I thought I was “too healthy” to get listed. I sometimes still think that. My plan at the time was to wait as long as I could before getting a transplant, and live with the awful things IPF was doing. I figured, someone might cure IPF, they might increase the transplant survival rates, I might stop declining. Ofev and Esbriet buys time, and that’s what I needed in 2011. Ofev got me to 2016, without it, who knows.
June 17, 2021 at 2:41 pm #28906ChristieParticipant
Jill, as far as antifibrotics, that’s a tough one. I asked my mom her thoughts on them (she’s 2 years post transplant) and she said she never had side effects bad enough to consider stopping them. She did have gi issues, etc. But the benefit was worth it to her. Every case is so different though, it’s gotta be up to your partner to decide what he can handle. In my moms case, she had appendicitis and had to go off of ofev for a month to take a heavy course of antibiotics. That event is what triggered the acute exacerbation that sent her to the ICU on a medevac jet… if she hadn’t been listed for transplant, that would have been the end of the road. Take that story how you will, but having gone through that, my advice would be not to temp fate.
As far as transplant though, 100% reccommend. Of course it comes with its caveats and its own issues, but it’s been absolutely worth it to my mom and our family. Shes still here. And she has regained much of what ipf took from her… now she just has to deal with regular old things that come with aging haha.
June 17, 2021 at 4:06 pm #28913Ben RobinsonParticipant
These posts were very helpful as I am taking the Transplant plunge this fall. Thank you very much.
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