Organ Transplants Support Group

I didn't have a lung, but had a liver. I have a life now. I didn't know how bad I was until I had the transplant. Best wishes on your decision.

Liver transplant here.

My experience you don't get a transplant unless you are going to die.
So I guess in my mind the question is do you want to live?
If so get on the list and hold on for the ride of your life.
Transplant is not an easy thing for most but in my mind it beats the alternative.
God Bless Good Luck

Thank-you both. I realise that I am not in the best of health but I adapt my life round this. It's sometimes frustrating and I am unable to do some of the things that I used too, but I don't know if I'm ready for transplant. I do not trust the dr that I am seeing at all, so really I have to make the decision. I want to live, if only for my daughter, and I put so much effort into trying to do just that. I spend hours each day on physiotherapy, treatment, exercise, attending to dietary needs etc. My drs told me I wouldn't live to be 7 years and am now 39. (Maybe this gives a clue as to why I am unable to trust the dr!) For me, it's about getting the timing right. I don't know how long these lungs are going to last, as in keeping me alive, so it's difficult.

My suggestion is this do all the pre testing and get as far along in the process as possible so that if and when they due start to totally fail you will be ahead of the process. You won't get one until you absolutely need it anyway. there is a terrible shortage of organs for transplant so they don't use them on you unless there is absolutely no alternative and they cut it pretty close. I had about two weeks left before I got my transplant after waiting 11 years.

Thank-you again. This is very helpful. I'm going to do as you suggest and start the ball rolling. Good to hear that you got your transplant and are here to tell the tale.

I just received a bilateral lung transplant 5 months ago and I encourage you to go through with it. I cannot express the joy I feel every day as I am breathing on my own for the first time in 3 1/2 years. I feel as if slowly but surely I am re-entering life again. Whatever you need to do, it is all worth it when you take that first breath of air on your own. I was listed for 2 1/2 years with one dry run and I had gotten so ill towards the end I don't know how much longer I would have survived. Even though I must pace myself, lots of medications and some restrictions, everyday I am returning more and more to leading a normal life. I definitely encourage you to go through with it.

Thank-you AndiN. It's so good to hear of your successful transplant. I am really happy to hear that you're getting your life back. I'm going to discuss the possibility of transplant when I next see the consultant. I hope your new lungs serve you well for many many years to come.

kinders, I'm so glad you are moving foward with this. Your drs. will advise you if this is the correct choice for you. Most transplant centers also offer support groups. It is a big endeavor but, as I said, everything is worth it. There has been so much progress made. i.e, when I was first considering transplant, the survival after transplant was only 5 years and now the average is 10 years. I figure by the time I get to 10 years, the survival time will have increased again. What is even more important is that your quality of life will increase greatly. Of course, you must always be careful, take lots of meds, etc., but it just becomes a part of your new and improved life and becomes routine. Not such a big trade off for life. Good luck and please let us know your progress.

Hi Kinders.

I just received my double-lung transplant 2 months ago at UNC Hospitals in Chapel Hill, NC. I'm doing great so far and i'm so glad I went through with it.

I was on oxygen for 17 years so it's been a major adjustment for me to breathe without it. But i've been o2 free for almost a month now and I can't be more happy. It's not an easy road by any means but it is worth it in the end.

Good Luck with your consultation and evaluation and keep us updated on your status!