January 24, 2019 at 8:01 pm #15634Kathleen ShefferKeymaster
Have you gone through transplant evaluation? What was the experience like for you? If you have never had an evaluation, what’s stopping you?
I went through transplant evaluation three times before I received my heart-lung transplant. Based on my experience, it’s never too early to find and get to know a transplant team. I’ve seen too many PH patients die because they waited too long to consider the option. There seem to be a lot of misconceptions about the process and I’d love the opportunity to address concerns you have.
Has your specialist introduced the idea of an evaluation? What’s your greatest fear about transplant? It’s a scary topic for most of us!
January 25, 2019 at 6:17 pm #15640Janet SarnoParticipant
Hi Kathleen. I’ve been undergoing testing for last four months for double lung transplant. Some of the tests with contrast have been hard on my intestines. I think I’m close to done. My workup is being done at MGH in Boston. The scary thing for me is how long will I survive afterwards and how do I take all those pills. Any suggestions on alleviating my fears on life expectancy and taking so much medication
January 25, 2019 at 8:24 pm #15642Kathleen ShefferKeymaster
Hi Janet, I’m sorry you’ve had a tough time with the contrast. I hate the stuff! Hopefully you won’t need it much in the future.
None of us know how long we have left, but I’ve met lung transplant recipients living 20+ years and heart-lung recipients living over 30 years, having had some of the first surgeries (which came before “just” double-lung transplants). It’s not as if most people live 5 years. There’s no cap on how long you can live. I hear “average of 5 years” all the time. But that’s an average and not a median. Some people only live months to a year post-transplant (unfortunately a great deal). But when transplant goes well, it can go really, really well.
As far as the medications are concerned, I take about as many medications now as I did when I had PH, but the difference is they are all pills – no IV’s or inhalers for me at this time. It’s so much more manageable. A bit challenging to learn all new medications at first, but now that I have the hang of it it takes very little time out of my day. The side effects of transplant medications are nasty, but so are the side effects of PH medications!
Just remember you know yourself. You are an individual. Your journey is your own and you will find a way to persevere.
This is hard. But transplant opens up so many beautiful opportunities for growth and new experiences. It’s hard, but it’s worth it.
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