Transplant Frustration

[patandfritz]

My other half's nephrologist wants him on the kidney transplant list. We go to the center and sit for their orientation only to find out they won't allow him until this coming June because he had cancer surgery and has to be three years post-op. His cancer doctor was appalled because he said the cancer Fritz had will not return, does not metastasize AND is not the type that can live in or on or go to organs. But, they will not allow for any of that.

[nh1966]

Unfortunately many of the transplant doctor's do not take the recommendations of other doctors. Some think they walk on water. I would see about going to another transplant center.

[Dixidude39]

I'm CKD4 because of cancer in my right kidney (a year before that, it was bladder cancer). However, my age (80) in all likelihood rules out transplantation should my remaining kidney become cancerous. For those who are eligible, I'm amazed by the handful of patients who come up with novel ways for getting a new kidney from a live donor. Example: wearing a T-shirt which states "I need a kidney. Can you help?" A live donor may step up!

[Jayhawker]

This is definitely frustrating. Can your significant other’s cancer doctor communicate directly with the kidney transplant center? If so, and the transplant center still won’t listen I guess you could petition their decision. Or you could try a different transplant center. If you go the later route, I’d be up front with new transplant centers as you contact them. I’d also send them a copy of the oncologist’s letter and final lab reports, etc.

I’m not sure where you live, but the transplant center I’m working with has done some higher risk transplants successfully. I don’t know what they’d say about your significant other’s situation, but it might be worth contacting them. They’ve got patients from throughout the nation. If you’d like more information, please send me a private message.

Jayhawker

[patandfritz in reply to Jayhawker]

Hi Jayhawker,

We live near Buffalo, NY. My other half got a letter from the transplant center yesterday (we were there in June) stating they would not consider him until he is three years post op. That will be this June. His cancer doc is furious. He said the cancer is the type that will not return, does not metastisize, does not live in or on organs. Every CT Scan comes back the same...no changes. I am going to send a copy of the letter to his cancer doc and we are going to send an appeal letter to the transplant center.

[Jayhawker in reply to patandfritz]

Let us know how this turns out. You’re both in my thoughts and prayers.

Jayhawker

[patandfritz in reply to Jayhawker]

Thank you Jayhawker

[mhawk123]

And you are not on dialysis?

Keep strong for now.....

[patandfritz in reply to mhawk123]

No, he isn't on dialysis, but will be in a couple weeks. Had a hard time building his fistula. Ended up doing a graft.