As you may know by reading my blog I am entering the transplant stage of CF. I have really struggled with the idea of becoming active on the list.
What are your thoughts on transplants? I know you probably haven't given it much thought since your health is pretty good.
I guess I have always viewed it as a life saving operation to buy you more time. The thought now by doctors is do the transplant before you get too sick so that you have an easy recovery. What do you think about this?
My thoughts have always been this, I'm not here for me. Meaning, I'm happy with the life I have lived and don't have a desire to extend that life by having a lung transplant. With that said however, I also don't feel like it is just my call. Like I said, I don't live my life focused on myself and I have always enjoyed blessing the lives of other people. Those people include friends, family, and strangers.
When I was younger I always said that I would refuse a lung transplant. That of course was when it was all about me. When I got to be in my late teens early twenties I said that I would get one only if I had a family and my wife or kids pleaded with me to get one. Now that I am older and wiser (haha) I have come to the conclusion that I will fight tooth and nail to keep the pair that I've got, but when the time comes, I am open to a transplant. I have been told straight up by my mom and girlfriend that it's not about me but about them :) They want me around (not sure why) and so for that reason alone I would go through with it. Now, like I said, I will do anything and everything to avoid going down that road (and as of now, I'm no where near sick
enough) but that brings me to the next part of your question.
I have always viewed transplants as trading in one set of problems for the next. I have always wondered though, "What would it feel like to take a deep full mucus free breath?" You know, the type I took when I was a young buck (or did I? I wonder that often). A lung transplant would give me that chance and as you said most likely extend my life.
Now the tricky part is timing. I have known CFers that had been in the 30 and 40 percent that recommitted their life to taking care of themselves and ended up back in the 60's or 70's. I have of course known CFers that did everything they possibly could and their lung function didn't change. So for me, I would make sure that I had exhausted all other options before going on the list
I realize where the docs are coming from and there is a lot to be said for that school of thought. Have they presented you with any studies that back up there position? If the numbers are there to support it then it would be hard to argue. I'm sure you have talked to many CFers who have had a lung transplant and it would be valuable to get there feedback as well. One in particular would be Sara over at oceandesert.blogspot.com. She's a friend of mine who had a transplant recently and would have some good info for you I am sure. I have had many other friends who have struggled with the same exact idea (as far as going on the list) so just know that you are not alone. You are having very common feelings and hesitations. I may not be the most valuable resource because, as you may have already gathered, I am very stubborn and often have a "nothing can stop me" attitude. Who knows, maybe one day that will be my undoing?