B. Cepia and transplant

D

Diane

New member
There is a guy named Greg who had cepacia and had a transplant and last time his wife wrote on his site, he was doing great.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.standinginthegap4greg.org/?id=Latest%20Health%20Update
">http://www.standinginthegap4gr...est%20Health%20Update
</a>
But unfortunately, the majority don't always do so well.
 
J

Joanne

New member
Hi,

There are several centers in the U.S. who will tx those with Cepacia, but not type 3 any longer. UNC, Duke and I think Pittsburgh will do them, and there could be a couple others. It is worth looking into and investigating.

The new lungs will not necessarily get cepacia, they may, but not always. That is the trick of a center doing a cepacia person. Cleaning the chest cavity out really well so the cepacia does not get into new lungs is key, but also that it does not get into the blood stream.

At UNC, where I had my tx but not cepacia, I have had many friends who had their tx done there, and had cepacia. I asked Dr. Thomas Egan what makes it so tricky and that is what he explained to me. He said when it gets in the blood stream, there is really nothing to do. If it gets into the new lungs, there is some meds that can be used, and he has success with it.


Joanne Schum
 
J

Joanne

New member
Hi,

There are several centers in the U.S. who will tx those with Cepacia, but not type 3 any longer. UNC, Duke and I think Pittsburgh will do them, and there could be a couple others. It is worth looking into and investigating.

The new lungs will not necessarily get cepacia, they may, but not always. That is the trick of a center doing a cepacia person. Cleaning the chest cavity out really well so the cepacia does not get into new lungs is key, but also that it does not get into the blood stream.

At UNC, where I had my tx but not cepacia, I have had many friends who had their tx done there, and had cepacia. I asked Dr. Thomas Egan what makes it so tricky and that is what he explained to me. He said when it gets in the blood stream, there is really nothing to do. If it gets into the new lungs, there is some meds that can be used, and he has success with it.


Joanne Schum
 
J

Joanne

New member
Hi,

There are several centers in the U.S. who will tx those with Cepacia, but not type 3 any longer. UNC, Duke and I think Pittsburgh will do them, and there could be a couple others. It is worth looking into and investigating.

The new lungs will not necessarily get cepacia, they may, but not always. That is the trick of a center doing a cepacia person. Cleaning the chest cavity out really well so the cepacia does not get into new lungs is key, but also that it does not get into the blood stream.

At UNC, where I had my tx but not cepacia, I have had many friends who had their tx done there, and had cepacia. I asked Dr. Thomas Egan what makes it so tricky and that is what he explained to me. He said when it gets in the blood stream, there is really nothing to do. If it gets into the new lungs, there is some meds that can be used, and he has success with it.


Joanne Schum
 
M

mcbrash

New member
I'm sorry I did forget to mention also that I personally know a few people that have had cepacia transplants and are doing remarkably well.

Sandy
 
M

mcbrash

New member
I'm sorry I did forget to mention also that I personally know a few people that have had cepacia transplants and are doing remarkably well.

Sandy
 
M

mcbrash

New member
I'm sorry I did forget to mention also that I personally know a few people that have had cepacia transplants and are doing remarkably well.

Sandy
 
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