annie,
There is alot that could be said about the transplant process itself. Trust me I think I asked about every question under the sun when I went for my first introductory appointment at my center. I searched online for personal stories and was seriously depressed because the most common finds were very upsetting because the people had bad outcomes or had struggled alot.
I had a VERY hard time making my decision. I toyed around with the idea for months before it was ever brought up to me by my doc because I knew the time was coming because of my health status. When it was brought up I still didn't know my answer I just knew I wanted to go to a center and talk to a transplant doc or team and ask THEM my questions. So I did.
Still after that I wrestled with what to do and honestly didn't make my decision until my fiance asked me a question. If I only got 6 good months out of the transplant would it all be worth it to me - by all he meant the pain, the recovery, the meds, the everything?
I thought about what he said and I replied 1 day without meds without coughing and just being able to be with him would make it worth it to me - to just be able to breathe again.
So I decided I was gonig for it and from that point on I stopped asking questions about the transplant itself and only asked questions about MY transplant - meaning when things were occuring with me I would ask about them or ask about tests that were being done on me and so on.
It is a very hard decision and my reason for posting this is not to say if 6 months wouldn't be worth it to you then don't do it. I am just trying to show that sometimes the answer won' tcome from looking at all the pros and cons to transplant - because I will be honest when I was looking at that stuff everything kind of balanced out and there wasn't anything that made me lean one way or the other.
It came down to something else for me.
Good Luck with your decision and I say even if you are not decided when you go back to the doc ask him if he can set up a regular appointment with a transplant center - if one is near you. That way you could ask them some questions and see how you feel about it after that.
This is a HUGE decision and you are going to have to be committed to it for the rest of your life. Do NOT rush into it and don't let anyone put time constrants on your decision. Though I will say with your PFTs being where they are you unfortunately do not have to ability to take years to decide so it will be accelerated but if you need 2 months instead of one to weigh your options then do that in my opinion.
Love Linds
Good Luck and I will be thinking of you and hoping that regardless of what decision you make it is the right one for you.
