Wednesday, July 18, 2012

What to Expect

I get a LOT of questions about lung transplant through this blog, but by far the most common is the simple yet personal staple: "what was the hardest part about lung transplant?" And I pretty much always answer this by explaining that, for me (and for most patients I know), the hardest part about lung transplant is managing expectations.

Look, lung transplant isn't a cure, especially not in the case of cystic fibrosis. It's not a snap-your-fingers-and-go kind of deal. Lots of people I know are in and out of the hospital even after their surgeries, although the frequency and severity of those hospital stays seems to vary. In any case, transplant isn't a magic bullet. People who think it's going to be one normally end up somewhat disappointed, if not disheartened and disillusioned.

On the other hand, I know very few CFers post-tx who actually regret it, and that should tell you something. In my own case, I can tell you that by the time I reached the point of really NEEDING new lungs it was no longer a philosophical question for me. I wasn't pondering the relative pros and cons of life on immunosuppression or the possibilities of rejection. Nope. By the time I needed lungs, all I wanted to do was live. I would have taken odds against all the complications in the world just for one deep breath. I knew transplant wasn't a cure, but I also knew that it had the possibility to be a lifeline -- and that was good enough for me.

Managing expectations, to me, means pushing myself within reasonable limits. It means being kind when I can't do something right away (or sometimes when I have to admit that I can't do it all), but it also means choosing everyday to be optimistic about the possibilities. It means knowing the difference between "it's hard" and "it's impossible" and the difference between "I can't" and "I don't want to." It means that unlike what I experienced with end-stage CF, most of the time when I wake up sore and achey and feeling kinda crappy, I need to trust that I can push through it and that everything's going to be just fine. And of course it means being realistic when a problem simply isn't going away or can't be pushed through and letting my doctors know -- something that for me, personally, is always the hardest part.

Finally, it means acknowledging when my expectations were in fact wrong, and adjusting them accordingly. I'm two years out of transplant haven't gained a pound, for example. It's not what I expected, and for me it is disappointing, but I have to learn to deal with it. I'm adjusting my expectations to try and be happier with what I have, even if it does mean that Boost Plus and I are gonna have to stay friends for now. Blech.

I have a lot of friends out there currently facing the transplant decision. I remember that process -- the fear and the hope, the excitement and the dread, the dreams of what would come later and the nightmares about what "could" happen at any given second.

So, for all of them and for all of you, here's what to expect from life after lungs:
Expect beauty.
Expect obstacles.
Expect to be happy.
Expect to shed tears.
Expect to learn lessons, some of them hard.
Expect to have to push yourself.
Expect the best out of everyone around you -- including yourself.
Expect the unexpected.
Or, in other words, expect LIFE.

Happy breathing, beautiful people.


  1. You hit the nail on the head. I saw this post shared on a friends Facebook profile. Will be three years post this august! Thank you, piper, for sharing your story!

  2. This could not have came at a better time. My doctor wants me to go to the transplant clinic for a consult. Your list of what to expect was exactly what I wanted to hear.