Cepacia transplant desperately needed

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[irish58]

Hi all

New member...first post

I am the father of an 18 year old daughter that has cenocepacia (III). While she is holding her own, another family member has reached a point in his health (37 year old) where a transplant is his only hope. I find the lack of information about what hospitals will at least CONSIDER doing a transplant on a patient with genomevar III to be very difficult to come by.

I find it quite amazing that even the doctors at 2 seperate CF centers do not have this information. If they don't know then who does? Insurance issues aside, what hospitals have done cepacia III transplants in the past year?

Can anyone help?

desperate in Michigan

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[EnergyGal]

Hello Irish

I think you need to contact the various transplant centers that you would be able to relocate to. I know that Duke in North Carolina has transplanted many Cf/cepacia patients. It depends on what type of Cepacia a patient has. I would go to <a target=_blank class=ftalternatingbarlinklarge href="http://unos.org">http://unos.org</a> and look up the different tx centers that you can relocate to and call them. Be prepared to send them all your childs records.

You can be listed at more than one center as long as that each center is not located within the same region.

I wish you the best. Perhaps there will be more folks on <a target=_blank class=ftalternatingbarlinklarge href="http://transplantbuddies.org">http://transplantbuddies.org</a> with more information to give you. Feel free to visit

sincerely
Risa

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[irish58]

Thanks Energy!

Perhaps I wasn't clear, but the type of cepacia is referred to as ceno cepacia or known as genomevar III. It is the "bad" type. That is why I wanted to know about hospitals willing to even CONSIDER doing a transplant with this type of cepacia. It is widely known that almost all transplant centers consider this cepacia a non transplantable type. I just want to know if anyone knows of a center that had done a tx recently on a patient with the "bad cepacia". I guess we'll deal with relocation if we could just get the names of a center that is willing to even interview him, as a candidate.

Thanks
Irish

 

[tammykrumrey]

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.

 

[tammykrumrey]

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.