Sunday, August 10, 2008

The News...

Okay, so back in January my CF doc suggested that it might be time to start looking into being evaluated for transplant. Her reasoning was good: the evaluation process can take a long time, many people find it hard to get evaluated once they become super sick, and it's emotionally draining so better to get it out of the way earlier and have more time to process the whole ordeal. All very solid points and very logical. Basically the exact kind of thinking that normally makes me jump right on board. But this time...not so much. The news hit me like a ton of bricks. Sign up for four days of intense medical testing all so some doctors I've never met before can determine if I'm qualified to have my lungs pulled out of my body and replaced with those of a stranger? Was she crazy? My actual reply was that I would need some time to think about it and talk it over with my family, but my internal response was more along the lines of "get me OUT of here!"

Deep down I knew she was right. Since early 2007 I have been on and off IV antibiotics about every couple of months because of serious lung infections. I'm now on supplemental O2 at night to help my body rest. And, probably the most serious indicator, my FEV1 hovers between 38 and 44% when I'm healthy. I don't even want to go into my numbers when I feel sick. Factor in that just about 5 years ago my baseline was FEV1 85%, and it doesn't take a genius to figure out that my CF has progressed extremely rapidly....this was definitely the time to be considering all of the options. But still, lung transplant? Wasn't that for people who can't work or leave their apartments? I just kept going over and over the reasons why lung transplant didn't make sense in my life: I worked, I exercised, I could go out with friends until the early hours of the morning! It all just felt way too surreal to be true.

I'll admit it took me a few days to get past that initial phase of feeling overwhelmed. Actually, that was 7 months ago, and I still feel a little overwhelmed to be honest. But basically I went home, called my family, and then started the (very) long process of determining whether transplant was the right road for me. I gave myself some time to grief the thought of losing my current lungs (even at their worst they've still always been there for me); I spent hours online and on the phone getting stories of lung transplant from other cystics, reading up on the procedure, and generally gathering information; and I did a LOT of thinking. What I discovered was that I definitely wanted the option of lung transplant, and that therefore I needed to be evaluated. I also finally came around to the thinking that it was better to do this now, while I'm relatively healthy and have a fairly normal life to fall back on, than to wait until everything falls apart and try to brave the testing process then. CF is unpredicatble, I know that, and anything I can do to stay two steps ahead of the game is definitely worth the effort.


  1. I'm so glad you have a blog Piper. I hope that all goes well and that you can stay on the in-active list for a very long while!!!!


  2. Hi Piper, I just bookmarked you. :) Found it through your post.

    Just wanted to say hello.

  3. Wow, I feel like I just read my own story except I'm 32. My Doc brought it up to me in November and in June he asked if I decided where I was going to go for my evaluation. I was shocked to say the least. I just start the process at Brigham and Woman's in Boston. Good luck to you!