Hey there,
I am sorry to hear your friend is in need of a lung transplant, but at the same time I am glad that he is eligible for one.
The first step is going to be making an appointment at a transplant center. Your friend can talk to his CF doc about possible centers and from there if the insurance will cover him going to any of the centers mentioned. The first big hurdle with transplant I think is finding a place your insurance will cover you going too - that you want to go too.
I would start NOW writing down questions. Anything - ANYTHING - your friend or you or anyone else that your friend cares about wants to know write it down. You may have a TON of questions but that is okay. ASK every question you have. This is a HUGE thing to go through and ask the things that are important to you.
I personally had a double lung transplant in May 2007. I started beign seen at the transplant center in Dec 2006. My first appointment I had over 4 pages of questions for the docs and nurses at the center I was going too. I felt bad at first for taking so much of their time, but realize now that I needed to do that.
As for whether or not to go through with the transplant that is a VERY personal decision and honestly ONLY your friend can make that choice for himself. As a person that went through it and as a friend of people that have chosen to have a transplant and some that have chosen not too. It is something that NO ONE should be pressured into. It is a huge commitment and you (or the person that is going to go through it) needs to decide FOR THEMSELVES if they are willing, ready and able to go through what is going to be required with a transplant.
For me I do not regret my decision at all - I would do it again tomorrow if necessary. I have had few problems - none lung related since my transplant. On the opposite note there are many people I know that have "bumps in the road" post transplant, but most of them still think the transplant was worth it and most would do it again.
I still take meds everyday - main difference. I take mostly all pills. I do a sinus rinse daily - mostly twice daily. I exercise regularly and have to do a daily breathing test (at home) along with check my blood pressure and temp twice daily. There are still things to do daily post transplant - the difference is time and that unlike with CF where you can say yeah I will just skip my meds today and I will just maybe have a harder time breathing or cough a little more - skipping meds and things post transplant could cause you great problems and ultimately led to rejection, infection or worse.
For me breathing post transplant is NOT by any means comparable to pre transplant - even at my healthiest I do NOT remember breathing being this simple and easy. As I told or asked my fiance - this is what breathing is supposed to feel like. I was and still am amazed at the difference.
I guess I just reccomend to check it out - have your friend look into it for himself. Ask EVERY question you can think of that is important to you and remember you do NOT HAVE to ask everything or know everything about what is going to happen. If the idea of an answer to a question freaks you out don't ask. It is okay not to ask questions if you are afraid of the answer (and you know the answer won't affect your decision).
I personally stopped asking questions once I decided I was indeed going to be listed. I didn't want to cause myself any MORE undue stress or anxiety about the situation, but that is how I was your friend may not be the same way.
But YES - check it out, ask questions of the docs because they will be able to answer your questions best - at least the technical part of it - ask people with transplants why they chose to do it and ask people without why they chose not too. Ultimately decide if it is worth it for YOU not for your girlfriend, boyfriend, parents, brother, sister or joe schmoe down the street. Decide whether or not YOU are willing to go through it. It can be painful and a bit much to deal with - especially at first as you get adjusted to a new life and new issues that you are faced with - to me it was worth it.
My fiance posed one question to me when I asked him what HE thought I should do. He said he didn't want to tell me what he thought he wanted me to make up my own mind and he would support me. Then he told me that he wanted me to make sure it was worth it, going through the surgery, the recovery, therapy and meds and everything else for life if I only got say 6 more months from it. I thought about it and decided if I could just get ONE (1) really FANTASTIC day out of the transplant that I would think it was worth it. One day without coughing, being able to laugh run and so on it would be worth it, so I decided to do it. I have gotten more than a day obviously, but my point is make sure your friend evaluates what is important to HIM. Let him choose for himself and let him know that you will support him no matter what his decision is.
This is a stressful and emotional decision and time for ANYONE to deal with let alone when/if you have everyone you know pressuring you to make the decision THEY want you to make and making you feel as though your decision (if it isn't the same as theirs) is wrong.
So yeah just support him no matter what and everything else I mentioned above.
I know I talked alot with that post so I will stop now. If you or your friend EVER want to talk you can email me at Divawithwings@gmail.com
Take Care and Good Luck,
Lindsey
