B. Cepia and transplant

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Asexyblond23

New member
I have heard from some CF doctors that if you have B. Cepia you will be denied for a transplant due to the fact that it can be in your trrehia and it can infect your new lungs. Does anyone know about this? Anyone who had b. cepia recieve a transplant?

Alisha
 
A

Asexyblond23

New member
I have heard from some CF doctors that if you have B. Cepia you will be denied for a transplant due to the fact that it can be in your trrehia and it can infect your new lungs. Does anyone know about this? Anyone who had b. cepia recieve a transplant?

Alisha
 
A

Asexyblond23

New member
I have heard from some CF doctors that if you have B. Cepia you will be denied for a transplant due to the fact that it can be in your trrehia and it can infect your new lungs. Does anyone know about this? Anyone who had b. cepia recieve a transplant?

Alisha
 
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IG

Guest
I believe there are clinics that do accept them, though the operation is riskier. If memory serves me right WinAce had b. cepcia and would have been accepted to a clinic if his insurance (medicaid?) would have paid for it.
 
I

IG

Guest
I believe there are clinics that do accept them, though the operation is riskier. If memory serves me right WinAce had b. cepcia and would have been accepted to a clinic if his insurance (medicaid?) would have paid for it.
 
I

IG

Guest
I believe there are clinics that do accept them, though the operation is riskier. If memory serves me right WinAce had b. cepcia and would have been accepted to a clinic if his insurance (medicaid?) would have paid for it.
 
M

MCGrad2006

Guest
It is very hard to transplant those who have cepacia. My friend Kay had it and did not make it through the surgery. I am not sure if it was caused by the cepacia, or if she was just too sick to handle. Boston does those patients and I think other places do, just not sure which ones.
 
M

MCGrad2006

Guest
It is very hard to transplant those who have cepacia. My friend Kay had it and did not make it through the surgery. I am not sure if it was caused by the cepacia, or if she was just too sick to handle. Boston does those patients and I think other places do, just not sure which ones.
 
M

MCGrad2006

Guest
It is very hard to transplant those who have cepacia. My friend Kay had it and did not make it through the surgery. I am not sure if it was caused by the cepacia, or if she was just too sick to handle. Boston does those patients and I think other places do, just not sure which ones.
 
H

HairGirl

New member
I have B. Cepacia and yes there are just a couple clinics that will do them due to how difficult it is and disease control (spreading etc.) yes, you will still have b. cepacia after a transplant and yes it will infect your new lungs, average life expectantcy for those with b. cepacia after lung transplant is 1-3 years. My dr. is one of the ones that has written tons of papers and reasearches about lung transplants, he's the leader in transplant qualifications? something like that.
 
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HairGirl

New member
I have B. Cepacia and yes there are just a couple clinics that will do them due to how difficult it is and disease control (spreading etc.) yes, you will still have b. cepacia after a transplant and yes it will infect your new lungs, average life expectantcy for those with b. cepacia after lung transplant is 1-3 years. My dr. is one of the ones that has written tons of papers and reasearches about lung transplants, he's the leader in transplant qualifications? something like that.
 
H

HairGirl

New member
I have B. Cepacia and yes there are just a couple clinics that will do them due to how difficult it is and disease control (spreading etc.) yes, you will still have b. cepacia after a transplant and yes it will infect your new lungs, average life expectantcy for those with b. cepacia after lung transplant is 1-3 years. My dr. is one of the ones that has written tons of papers and reasearches about lung transplants, he's the leader in transplant qualifications? something like that.
 
M

mcbrash

New member
I know that not all hospitals will do cepacia transplants as there is much more of a risk involved. We happen to live close by to a hospital in Toronto that does do cepacia transplants. My son had cepacia and received his call just four weeks after being listed. He had his transplant on May 1st 2005 but unfortunately the cepacia did get into his new lungs and Matt passed away on the 15th of May, 2005 without having the chance to use his new lungs.

A friend of Matts had a dream just after he passed, that Matt came to him and told him that "if he'd had known about the outcome of his surgery, he would still do it over again" Also when I was going through Matt's journals that he kept while he was in hospital at one time, he said "I can live with the symptoms but I can't live with the restrictions any longer"

Although my heart is forever broken, I am so grateful that Matt had that HOPE that he would perhaps have a chance of a normal life once again because of transplant.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005
 
M

mcbrash

New member
I know that not all hospitals will do cepacia transplants as there is much more of a risk involved. We happen to live close by to a hospital in Toronto that does do cepacia transplants. My son had cepacia and received his call just four weeks after being listed. He had his transplant on May 1st 2005 but unfortunately the cepacia did get into his new lungs and Matt passed away on the 15th of May, 2005 without having the chance to use his new lungs.

A friend of Matts had a dream just after he passed, that Matt came to him and told him that "if he'd had known about the outcome of his surgery, he would still do it over again" Also when I was going through Matt's journals that he kept while he was in hospital at one time, he said "I can live with the symptoms but I can't live with the restrictions any longer"

Although my heart is forever broken, I am so grateful that Matt had that HOPE that he would perhaps have a chance of a normal life once again because of transplant.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005
 
M

mcbrash

New member
I know that not all hospitals will do cepacia transplants as there is much more of a risk involved. We happen to live close by to a hospital in Toronto that does do cepacia transplants. My son had cepacia and received his call just four weeks after being listed. He had his transplant on May 1st 2005 but unfortunately the cepacia did get into his new lungs and Matt passed away on the 15th of May, 2005 without having the chance to use his new lungs.

A friend of Matts had a dream just after he passed, that Matt came to him and told him that "if he'd had known about the outcome of his surgery, he would still do it over again" Also when I was going through Matt's journals that he kept while he was in hospital at one time, he said "I can live with the symptoms but I can't live with the restrictions any longer"

Although my heart is forever broken, I am so grateful that Matt had that HOPE that he would perhaps have a chance of a normal life once again because of transplant.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005
 
E

EnergyGal

New member
I have two CF /transplant friends and know of more who are ten years out of their double lung transplant. I would check with Duke and UNC to get the real answers. Many of the folks who believe you cannot be transplanted with cepacia have old information.
 
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EnergyGal

New member
I have two CF /transplant friends and know of more who are ten years out of their double lung transplant. I would check with Duke and UNC to get the real answers. Many of the folks who believe you cannot be transplanted with cepacia have old information.
 
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EnergyGal

New member
I have two CF /transplant friends and know of more who are ten years out of their double lung transplant. I would check with Duke and UNC to get the real answers. Many of the folks who believe you cannot be transplanted with cepacia have old information.
 
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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.
 
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.
 
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