NYCLawGirl
New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.
I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.
Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?
Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.
Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?
Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...