M. Abscessus and Transplant

[donin]

Hello,

My 26 year old son is being evaluated for transplant. Many centers will not consider him because he has m. abscessus (he is otherwise the perfect candidate). Three centers have agreed to evaluate him. He has completed the rigorous evaluation at one hospital but was rejected because his m. abscessus is not sensitive to the macrolides family of antibiotics (even though the m. abscessus is clinically controlled for him). We now have two to go (Duke and Pittsburgh). The rejection was terribly disappointing. I am wondering if anyone else has experience with being a 'difficult' transplant 'case.'

Thank you for any insight you have to offer.

 

[BreathinSteven]

I don't have personal experience with being a "difficult" transplant case - but I'm aware of a number of fellow-CFers who have... In the more distant past -- cepacia was a somewhat automatic disqualifier at many centers. (I believe that it still may be at some...) I'm not as familiar with m.abscessus -- but I have to believe that the situation is similar in nature.

I believe that, even though your son's m.abscessus is clinically controlled for him -- the transplant center is looking forward towards the moment when he is immune suppressed -- and suddenly, resistant m.abscessus or cepacia or other bugs becomes a MAJOR issue. And -- our highest levels or immune suppression -- when we are at our very most vulnerable -- is immediately after transplant... Which is probably the same time when there would be the largest proliferation of bugs that were in our former lungs.

I can only imagine how disappointing going through this extensive evaluation and being rejected would be... I hope he is accepted at Duke or Pittsburg. There are probably a few dozen centers available in the country -- many with varying levels of expertise in dealing with certain problems... I would ask the center that rejected him which centers might entertain a case with his situation. The centers are aware of other centers areas of expertise.

I hope your son gets what he needs soon... Love, Steve

 

[cftransplant]

I was told to drop dead at most of the major transplant centers in the US, a few out of country. Keep on going and do not take it as a personal insult, I sure as heck did not take offense. Only Duke and UNC were serious at the time, I had cepacia. I still have cepacia. I felt that the centers that had an issue with my infection would kill me and did not have the expertise. I certainly would not put it that "I had to go to Duke". Heck they saved my life a couple of times and have some rather sharp staff. If you have any questions, send me an e-mail. Pittsburgh has a good reputation, they had some issues 15 years ago.




CF transplant cepacia 64 and 14 years out

 

[donin]

Thank you both, very much, for replying.

I do think that Duke and Pittsburgh are better options than Boston in that they have the biggest and most innovative programs and are the most willing to take risks. Boston felt manageable because it's just 90 minutes from home and we have dear friends living in the city. But, I really take heart in your observation about expertise being the most important element. I think my son had that figured out before me.