Hi,
Lauren who is the young lady who had type 3 cepacia and Duke turned her down after she moved to the area, did have her tx at UNC. She lived just about a year post tx.... but her death did not have to do with cepacia. She had other health problems that arose. Lauren was a good friend and that was very upsetting for me.
The other centers that will consider cepacia.... Pittsburgh, but now you say they will not.. .so I guess dump them off the list. Univ of Cleveland.... not the Cleveland Clinic. Childrens hospital of Wisconsin, I would assume then that Univ of Wisconsin MIGHT consider cepacia, Univ of Alabama. - they will consider, they have done 2 or 3 cepacia in the past, no success yet.
As far as Dr. Egan holding the Cepacia record... I think it is accurate. I have asked about this in the past and believe that is what was said. Dr. Egan trained at Toronto under Dr. Joel Cooper... of course the father of lung transplantation. I know that Toronto does Cepacia, and has a rather large number of CFers with it... but in the U.S. many CF centers send their cepacia patients to UNC, as they know Dr. Egan has the success and history of it. I am not sure about Europe. I am sure there is one or two centers that do it there, but not sure which ones off hand.
Glad to year you are doig so well!!
Joanne Schum
luckylungsforjo@aol.com