Cepacia transplant desperately needed

HairGirl · Jul 20, 2007

I myself have just been looking into this, I have the exact same cepacia, genomevar III and my doctor told me that Pittsburgh would be the best place to go they have a wonderful track record and she (my dr.) has sent two other cepacia patients there as well, and they take good care of the patients. They take on difficult cases and I believe they do more transplants (all kinds) then any other center. Just look at the University of Pittsburgh website it explains it well. I was accepted at Pittsburgh but at the current time I have decided not to pursue transplant.

Any other questions just let us know, I think there are only three centers that like to do cepacia, University of Pittsburgh, Duke, University of NC.

HairGirl · Jul 20, 2007

I myself have just been looking into this, I have the exact same cepacia, genomevar III and my doctor told me that Pittsburgh would be the best place to go they have a wonderful track record and she (my dr.) has sent two other cepacia patients there as well, and they take good care of the patients. They take on difficult cases and I believe they do more transplants (all kinds) then any other center. Just look at the University of Pittsburgh website it explains it well. I was accepted at Pittsburgh but at the current time I have decided not to pursue transplant.

Any other questions just let us know, I think there are only three centers that like to do cepacia, University of Pittsburgh, Duke, University of NC.

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

irish58 · Jul 20, 2007

Thanks everyone

for your helpful information. Yes, type three III is genomevar III, same thing. The director of the centers have told us that they do not have a list of hospitals that will consider a type III transplant. That's why I am asking those of you in the CF community. I know it seems unusual that they would not have this information, but they say that there is no "directory", that we need to seek this out ourselves.
We have no's from
UNC
Alabama
Minnesota
Toronto (only Canadian citizens)

Thanks Again

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

MCGrad2006 · Jul 20, 2007

You could also check Brigham and Womens/Childrens Hospital in Boston. My friend was transplanted there recently (not sure which Cepacia she had).

thefrogprincess · Jul 21, 2007