First of all thank you so much for taking the time to write all that. It's much appreciated. Seriously. And I'm glad you are enjoying your 2nd chance at life. We all deserve it. :)
The truth is that everything that I read about transplant - including what you just wrote - makes me not want to have one. In my heart I know when the time comes I'll want one - I love to live and I want to live for as long as possible. That allied with our survival instinct plus not wanting to leave loved ones behind will give me strength to at least try to get one. But I just get so disheartened by all the shit that can happen. You see, my c.f. story is a bit different than most. I do want to preface this by saying my fev1 has been in the 30s for a very long time and I've been on o2 for sleeping and exercise for 4 years now. My condition is very stable but not a bed of roses. But here's the thing: I was diagnosed at 15 years old and my childhood was symptom free. I am pancreatic sufficient and don't need enzymes. My only symptoms are lung related. I only take 3 pills a day and I nebulize 2 meds. I've only been on IVs 3 or 4 times in my life (I'm in my 30s). I travel every year and I've lived in 4 countries. I'm still living abroad as we speak.
I basically remember a life before c.f. and I remember all my plans for my future before c.f. came along.
All of this to say that I have a really hard time accepting - still - that I have cf. even though it's been 18 yrs since the diagnosis. And I don't know if I have the strength to deal with new struggles. I feel that I've got everything under control as it is but I'm used to not having a lot of setbacks other than the huge setback that is c.f. and I feel unable to deal with new big problems that might arise. That's why I fear I won't be able to deal with all the new problems that come with a transplant. I don't know if I have that strength in me.