Hi everyone I am new to this board, and was hoping to get some support. My brother has CF he is 41 and just went through a double lung transplant today. I am really excited, yet worried, and well I was wondering if anyone has known anyone who has gone through this? Does the CF return to the lungs?? I had heard no at first but now my dad is telling me that it does..
Laura
Hi Laura, I am happy for your brother that he has received his transplant http://www.healthboards.com/ubb/dance.gif . I pray that he does well. As for an answer to your question about CF returning to the lungs this is what our CF doctors have said and the subject has come up in another messageboard with confirmation to what I thought to be correct. (confirmation by lung transplant recipients)
When you get a lung transplant the CF is GONE, IN THE LUNGS ! To me the most vital organ effected. CF however is still present and effecting the other organs like the pancrease. The transplant does not have anything to do with the pancreases ability to work properly, the mucus is still there and producing the blockage so enzymes are still going to be needed to digest fat and protein. Same goes for the reproductive organs etc. If he had sinus problems before, he will still have them. But his lungs are free and clear!
Please talk to your brothers pulmonologist and ask point blank... "is the CF gone in his lungs, will it ever come back to his new lungs?"
If you don't have the opportunity to talk to his pulmonologist you can most likely call any CF clinic and just ask. I happen to be going in to clinic tomorrow to have my daughters port flushed, if I can remember I will ask them to verify what I told you. They are used to me asking all sorts of questions anyway.
Chacha-
Thank you so much.. I would love it if you could ask your dr. about it.. I had thought that was the case with the CF not returning to the lungs but my father had told me diffrent..
He is doing well today as far as I know, he came through it with flying colors so now we just wait and see..
Thanks again,
Laura
Laura-
Thank you very much.. I will check it out..
To let you all know, Alan is doing great, I went down to visit him today even though he is asleep it really helped to see him. On Friday we had a scare because his Kidneys were starting to fail, and he was not passing any fluid. So they were talking about dialyses.. But they kicked in on their own and he is looking great.. They are hoping to take him off the ventilator on Monday
Thank you again for your support..
Laura
Hello I don't have CF but I have had 2 double lung transplants. I have BOS. They were both in 1994. It has been 9 years allready! While my lung function is abolutely terrible (15%) I am doing well right now. You never know when things could go downhil, and I have been there. I went downhill so fast after my first transplant. I came very close to dying. All the docs thought I would. I got that 2nd transplant not a minute too soon. Good Luck to your brother! ~ Katie ~
KatieZ-
Thank you very much. I hope that you start to do better soon.
Alan is doing pretty good now, he is a little upset that they have not lowered any of his meds yet. But what are you going to do.. He came home 3 weeks after the transplant and that was unbelievable. He seems to be doing well, he does get tired but that is to be expected.
Laura
I am glad he is doing well. I was in the hospital for about 2 weeks after both transplants. After the 2nd transplant I had 2 grand-mal seizures. I had a bronch on 9/11 and it showed mild rejection but that is nothing new for me. It will take 2 months to culture out the mycrobacteria I had - if I still have it. ~Katie~
Katie-
Alan is starting to go through Mild rejection now too.. He is sooo depressed, and that is so hard to see. He has always been so possitive and to see him be negitive is just not like him. The treated him with 3 days of IV steroids and did another bronch last week to see how things are going. He is going to talk to someone and hopfuly get on some anti-depressants. After all that he has gone through I can understand him feeling a little down.
Thanks so much..
Laura
Sorry to hear about the depression. I hope he can get a med for it. I haven't had much of any depression. Once a few years ago, my mom asked for something to be prescribed for it (didn't have it!) and the doc said no. I wasn't very happy with my mom about that. I am doing Xenapak for rejection right now. I did it in March/April and I think it has helped me out. I am doing it again now to see if it can help me out more and get rid of the rejection. No side effects with it which I love! Good luck to your brother!
~Katie~
Double Lungs 1/4/94
Katie-
Alan is having such a hard time on the steroids right now.. He is all puffy again, and it does a number on his blood sugar. He has diabetes due to the CF.. All and all I think that he is doing well, but he needs to start feeling that way..
I hope that you start to feel better soon too!!
Laura
My brother just had a double lung transplant 
! To me the most vital organ effected. CF however is still present and effecting the other organs like the pancrease. The transplant does not have anything to do with the pancreases ability to work properly, the mucus is still there and producing the blockage so enzymes are still going to be needed to digest fat and protein. Same goes for the reproductive organs etc. If he had sinus problems before, he will still have them. But his lungs are free and clear!
