Hi Guys, about 7 months ago I posted here that I was going in for a lung operationsince it went down to about 80% for the second time. Anyway, the operation I was told was a success but the after effects were 6 months of work abscence and in and out of hospital for that period of time with one problem after the next... anyway, I feel generally worse now than i did before i had the operation, my body has deconditioned so bad that i cant seem to recover from it, im more breathless, less energy, cant put on weight... my lung function is 20% of predicted... not good..

So I was back for a check up yesterday and they put me on some new pills and also told me if i dont pick up within a few months we may have to start talking about transplantation.. then he told me the survivability figures... i almost cried, im only 20 years old and I was basicly told if i dont get better i wont live past 35.

Has anyone here had a succesfull transplant and are living a better life than they were?

My son has CF, but is only a toddler. I don't have personal experience with a transplant, but know a person who had a transplant 3 years ago who just turned 35. I've read stories about people who've had successful transplants and have go on to participate in the transplant games, triathalons, marathons.

I do know of a couple of people with cepacia who had limited options because only a few hospitals will take patients with that bug. Some people were able to get successful transplants and UNC, some just couldn't get a transplant on time. Good luck!

Hi Frequency. In regards to your dilemma, it's a very personal decision. It would depend on what you would appreciate more: quality of life vs quantity of life. Can you have them both with a transplant? Of course your definition of quality of life is very personal, too. What do you enjoy most in life and will you be able to participate in one way or another after your transplant? Maybe your doctor can refer you to some past transplant patients that can give you some insight and answer some general questions.
If you are religious, I think your pastor / priest / spiritual advisor can also help you through your decision making process. My husband has CF. He is 37 years old and does not wish to have a transplant. His personal decision. Quality of life as HE sees it would not match the quality of life he feels he will have after a transplant. But again, a very personal decision. I will pray for you - that you will make the right decision for yourself. God bless.

How can they call it a success if you feel a lot worse? I'm curious as to how long you have been with this condition. Since you are very young a transplant might be well worth it. Let's face it, you don't have much of a choice. I wish you well. :) Hi Guys, about 7 months ago I posted here that I was going in for a lung operationsince it went down to about 80% for the second time. Anyway, the operation I was told was a success but the after effects were 6 months of work abscence and in and out of hospital for that period of time with one problem after the next... anyway, I feel generally worse now than i did before i had the operation, my body has deconditioned so bad that i cant seem to recover from it, im more breathless, less energy, cant put on weight... my lung function is 20% of predicted... not good..

So I was back for a check up yesterday and they put me on some new pills and also told me if i dont pick up within a few months we may have to start talking about transplantation.. then he told me the survivability figures... i almost cried, im only 20 years old and I was basicly told if i dont get better i wont live past 35.

Has anyone here had a succesfull transplant and are living a better life than they were?

i can give you some advise from expirience. My stepsons both have cf. their quality of life was very poor all through their childhood as they both had a severe case. my youngest stepson recived a double lung transplant in november of 1998. he was 12. he did have some complications after like rejection and some kidney problems and of course you have to be on anti rejection medication for life and that does put you at greater risk of infections and illness but he is doing amazing today. he lives a full life and can do more than he ever could before the transplant. he would not be here now if he did not have the transplant. My oldest stepson was on the transplant list for almost a year but unfortunatly he passed away before lungs came available for him. he was 15. its a long road to recovery after transplant but the end result is like night and day. I think it is the best option to have it.

Frequency...

I'm in a similar boat as you. i'm 21 this month and have been on the list for almost a year.

It sucks being so young and breathing like an 80 year-old, 80% is Brilliant and i can't believe they made you have an op for that, i've been around 35% for the past five years, i'm on the list cos it's about 28% now and i get very out of breath.

if you go on the list all i can suggest is think of the reasons to do it. I'm doing it for my family i wanna see my nephews grow up. and if you do decide to go on it, then Don't think afterwards.
Put it at the back of your head and get on, cos the first few months i was stressed to death, thinking and thinking, it gets too much too handle. I just don't think about it now and if it comes then i'll take the plunge.

Good luck

Mark