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Cepacia transplant desperately needed

T

tammykrumrey

Guest
Has his CF/Pulmo doctor have any suggestion, since this is his/her field? I would hope they could help direct you in the right direction.
 
T

tammykrumrey

Guest
Has his CF/Pulmo doctor have any suggestion, since this is his/her field? I would hope they could help direct you in the right direction.
 
T

tammykrumrey

Guest
Has his CF/Pulmo doctor have any suggestion, since this is his/her field? I would hope they could help direct you in the right direction.
 
T

tammykrumrey

Guest
Has his CF/Pulmo doctor have any suggestion, since this is his/her field? I would hope they could help direct you in the right direction.
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
L

Landy

New member
Here is a link to the website of Greg Hon, who was transplanted and had "Type III" cepacia. I assume this is the same thing as genomevar III?
<a target=_blank class=ftalternatingbarlinklarge href="http://standinginthegap4greg.org/?id=Home
">http://standinginthegap4greg.org/?id=Home
</a>
Click on Greg's Journal---under the<i> Victory Sunday </i>subtitle (dated 1-8-06) and start with the paragraph that begins "In December of 2002...". You can read some of his story w/ battling cepacia and finding a center that would transplant him, etc.

He seems to be doing wonderfully after being transplanted in Oct, 2005.
I'm sure you realize that each lung transplant story has different twists & turns, cepacia or not.
Keep us posted
 
H

HairGirl

New member
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.
 
H

HairGirl

New member
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.
 
H

HairGirl

New member
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.
 
H

HairGirl

New member
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.
 
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