Hey Nuttzzy:
Love that you had the guts to start this thread, by the way. Awesome topic!
I'm right at where you are (a little lower FEV1 and a little more advanced in the tx process - I've already been evaluated and am considering going active on the list) and I totally understand feeling overwhelmed by the prospect of transplant. Believe me, it's a HUGE DEAL! I think the CF community in general is excited by the opportunities that transplant presents for us cystics, and sometimes that leads to downplaying the scary side of it all, but really, it's a HUGE DEAL (whoops, did I already say that? lol). "Trading" the scary but familiar problems of CF in for the equally scary AND totally new problems associated with transplant and a compromised immune system is a really daunting prospect. I think anyone who DOESN'T spend a lot of time thinking and questioning a decision like this is probably taking it too lightly, but that's just my opinion.
Transplant is a deeply personal decision. I get the thoughts about letting people down and wanting to fight as hard as you can, but I also think that the plain reality is that transplant probably isn't the best option for some people. And I think you're the ONLY one who can decide if it's right for you. That said, here are a couple of things that helped me make my decision:
1) Talking to people who have had transplants about their experience, and explaining beforehand that I wanted as much of the "whole picture" as they could give me
2) Asking TONS of questions of my doctors
3) Reading transplant literature (luckily CF dominates that lung transplant memoirs genre, but I also found more scientific and objective books to read including "the Lung Transplant Handbook" which I found very helpful if a bit outdated)
4) Talking really honestly with my family about my hesitations and my excitement so that they understood where I was coming from and didn't think I was crazy for some of my more emotional reactions
5) Taking a lot of time for myself to just think about it and not pressuring myself to rush the decision
Sounds like you're starting the process a little on the early side (just judging by your PFT numbers anyway), which is GREAT. My doctor did the same thing with me and it was super helpful - I felt like I had the time to really process everything instead of waiting until I was already really sick. Also, remember - just because you're starting the process of making this decision right now does NOT mean it's time to give up the fight with CF. Your FEV1 numbers are still in the 40s and I know plenty of people who have gone 10 years or more with numbers like those, although it's very much an individual thing. So this is not necessarily a "do or die" decision right now, and whichever decision you make you can always change your mind as you get sicker (or healthier!).
Feel free to PM me if you want to know ANYTHING about the evaluation or listing process, both of which I've either just finished or am just starting. And I hope you get some good responses from other people - I'm excited to see where this thread goes!
Good luck!
