I'm like you - I pretty much ate up any tx story I could for a long time when deciding whether and when to get evaluated. The thing I learned from talking to some very close, long-standing, non-internet friends of mine who have had lung transplants? There is no "real" transplant story. Not by a long shot. Everything from the waiting experience to the first breath off the vent to the 5-year post-surgery outcome varies HUGELY from person to person. Yes, there are some common threads, but after about 6 months of asking every prying question I could think of to anyone pre or post tx that came my way, I suddenly realized that I was going to have to figure some of this out on my own through trial and error - no one can tell you what life with a tx will be like.
The downsides I've heard people mention? Horrible side effects from post-tx drugs, fear of or actual experience of rejection, pain, facing the possibility of retransplant, feeling like they're living on borrowed time, survivior guilt, post-transplant depression (apparetly more common than doctors let on), and having to deal with the same loss of lung function and sudden decline that they originally experienced with CF all over again when one of my friend's new lungs failed. Of the 5 CFers I've known who have had lung tx (not counting the ones on this or other online forums): 1 is going strong with his new lungs 12 years post-tx and is married with a child he has since adopted, 1 is going strong 4 years post-tx and wrote a book, 1 is going strong 2 years post living lobar tx and is 19 so now considering going away to college, 1 experienced chronic rejection after 7 years and was re-transplanted with a single lung, and 1 experienced chronic rejection after 5 years and was re-transplanted with both lungs. All, I am so happy to say, are still alive, although their lives are not without complications.
