Re: Re:post transplant questions

[Guest guest]

Mike,

I don't have any information on transplant to share with you though I will tell you that I have shared some of the same or similar questions in the past. I am currently still "too healthy" for transplant and that's fine by me. I do think that in general survival rates and quality of life post transplant are improving. When the time comes for me to make this decision, I think my only other option will be dying so that pretty much makes my decision quite a bit easier. I'm almost 49 and no where near ready to throw in the towel. So when the time comes I'll likely put my cards on the table and give it a go. It's a chance at living longer, no guarantee but a chance.

I live in NC close to Duke. They only do double lung transplants there, no singles. They believe that life expectancy is better with the double transplant.

We've had two transplants recently on the board. If you search old posts for Gwynne's and Judy's there is alot of information there. I don't personally know anyone with alot of problems post-op. Though we've all heard stories, like Congressman Charlie Norwood from GA. He had a single lung transplant in 04. He died of lung cancer in )7 but his cancer was induced in the non-transplanted lung by the immunosuppressive drugs he had to take post transplant. That's scary but it's one of the chances you take and it's why the consent forms are the size of books.

If I hear of anyone else who might be of interest to you I'll post it to the board or email you!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re:post transplant questions

Thanks so much for your comments Judy. By biopsy, I was diagnosed to have IPF last May - although looking back on Catscans - it was revealing itself (scarring) back in 2005. I just completed a transplant evaluation and was accepted but for now have opted not to be listed. My wife and I feel that we need to gather all the facts before we make our decision one way or the other. Many of those facts can only come from those IPF patients who have had transplant(s) . For one thing, I have questioned whether one's quality of life can be seriously altered by only replacing one of the diseased lungs. That allowing the IPF to progress in the other lung would seem to counter any benefit one may have by going through with a transplant. The doctor's themselves have had no comeback to this question so we must look to the patients

for answers.

I have been trying to reach people such as yourself for the last year with no success. I have made contact with most of the transplant centers around the country and after discussing this issue with their social workers, I have requested email addresses or phone numbers so I could communicate with their successful transplant patients. It is like our requests continue to fall on deaf ears. This has gone on now for over 13 months and to this day, no one has come forward.

We don't want to start feeling paranoid like there is some attempt to keep that information from us, but how do you explain the vail of secrecy around all this? Last month, when I completed my transplant evaluation, I requested this information again. In fact, the team was quite surprised when I said I didn't just want to hear about their success stories - those patients who recovered in record time - I also wanted to hear from those who are still in a hospital bed 5 months after the transplant. Again, to date no information has been made available. In the past, I have posted similar requests for such information on this forum as well as the Transplant Friends forum without success.

Can somebody out there shed some light on this? Many of us will be crossing this threshold someday and we need to know what we are getting ourselves into. For me the likelihood of whether I can have a better "quality of life" will be the basis of my decision. But I cannot reach such a decision unless I have the rest of the story.

Mike