Lung Transplant

[tckylem]

I am getting close to a transplant. My FEV1 is 25% but I only need oxygen when I exercise. I can gain weight like crazy. Duke has me visit the transplant team every 3 months. My health has been stable but, I don't want to wait too long. One bad infection could kill me. I can do most anything it seems the body is good at adapting to the condition.

How would I feel after the new lungs? Should I do it now or wait just a little longer?

Kyle
29 yrs
male

 

[IG]

Well I can't tell you whether you should wait or not. I was in denial up until the day they said they had a pair of lungs for me. Fortunately I couldn't say no [my grandmother would have beaten me with a stick <img src="i/expressions/face-icon-small-tongue.gif" border="0">] and it turned out better than I had ever hoped.

Some people feel differently after transplant. I had a few complications with medicine afterwards so I was hopped up on drugs. [not entirely the worst thing in the world right after Tx] Afterwards, being out of the hospital I felt extremely weak [that's what happens when you sit on your butt 98% of the time] but really good. I was able to breathe which was a huge and noticable difference. Over all I felt good, but I'm sure there are others out there who can say they didn't feel terrific, it was horrible, they felt great, etc. Anyway good luck and if you have any questions feel free to ask.

 

[anonymous]

I agree with Candice...It is different for everyone. Personally, right after transplant I felt wonderful. I was out of the hospital in nine days, walking without oxygen, could climb a flight of stairs. I had a few complications including acute rejection, airway narrowing and a bout of bronchitis. But it was all very very worth it.
I would say get it now if you do not have the quality of life that you would like. If you find that CF is holding you back from doing the things that you love to do...like playing sports and going out with my friends.
I knew it was time for me to get one because I was not able to go back for my last year of college nor was I healthy enough to work. So I thought...now is the best time for me. You really need to evaluate your life and see where you are at. You really don't want to get much below 25% lung function or you are just not going to be able to do anything.
And like Candice said if you have anything to ask..feel free. I would be more than happy to answer any of your questions.
Margaret
Double lung 11-11-04

 

[tckylem]

I have lots of questions. I am married to a very good wife. I just want to make sure I make the correct decision for us both. We are going to have a child and I want to make sure I will live as long as I can. It seams my problem is lung function. I am just a little scared.

 

[IG]

It's understandable to be scared, it's a very scary process and it's great to get all the facts that you can before hand. Feel free to email me [immortalgoddezz@hotmail.com] or post your questions on here and I'm sure Margaret and I [and most likely others] will do our best to answer them from our point of view.

 

[Grendel]

When you all had your transplants, what was your average FEV1? Also, what was your FEV1 when you pursued the list or was accepted to the list?

Finally, I have thought a bit about this, after your transplant, when you get pneumonia or bronchitis with the new lungs, your congestion is nothing compared to before, correct? Also, do your lungs clear up easier after the infections, than they did when you had your original CF lungs?

Thanks.

33/m
w/CF

 

[IG]

I believe my 'average' if you could call it that was something around 20%. When I was listed I believe it was 32%. As for the pneumonia/bronchitis question I have noooo clue, and I hope I don't have to experience it either. With the immunosuppressant drugs any cold that you get can be really dangerous so they're very diligent about pushing 'keep away from sick people.' Despite this I have gotten a cold once or twice and that was more of a head cold than anything else so my lungs [thankfully] were spared from any of that and I didn't have a problem shaking the cold. Took longer than usual but I did get rid of it and my FEV1 has stayed pretty high.