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Removal from kidney transplant listing
Transplants | Last Active: Jan 23, 2023 | Replies (20)Comment receiving replies
They are concerns the heavy immune suppressants at the beginning could cause a reoccurrence of the leukemia. It have been over 20 years. And there seems to be some concern over the radiation treatments for the bone marrow. The center where he was removed from the transplant list said they lost the doctor that was comfortable transplanting those with prior bone marrow transplant and my son was told to apply to where he is now practicing. Apparently this doctor was with them in Dec but had left by January.
Should the new location accept my son for transplant how can we possibly get the anonymous kidney donors to apply to the new location? The donor coordinator said she can only tell them they can apply where my son is listed but can not tell them where that might be.
Replies to "They are concerns the heavy immune suppressants at the beginning could cause a reoccurrence of the..."
Hi @kandyh 😊
I am thrilled to hear that you have the name of the expert specialized doctor and the transplant center where he is now located...That is incredibly good news!!
I would think that job one is to get approved and placed on to the transplant list at the center with that wonderful doctor as soon as possible.
Regarding the Living Donor process; once your son is accepted, you should be able to post that hospital's Living Donor link or phone number for potential living donors to start the process and take the initial health eligibility questionnaire. (The hospital will give you the details after your son is accepted with them).
If a potential donor passes the initial health questionnaire, they will need further extensive testing.
My recommendation is to focus on getting your son approved with the new center that has the expert doctor. (Don't let yourself get distracted with possible anonymous living donors from social media). I started out with several family and friends living donors and none of them passed the donor health tests. My brother had leukemia in the past, friend with diabetes, etc.
I received a deceased donor kidney and I am beyond grateful and happy!!! ❤
Is the expert doctor now located at a transplant center near you?
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@kandyh Since these two donors were found via social media, can you go back to that same platform and make an announcement of the possible trsnsplsnt location change?
Finding a living donor can be a daunting task. Things I have heard in my kidney disease support groups and seen at Relay for Life events include: making a pin that states your need and wearing it everyday. Sending an email to everyone in your address book, and ask them to forward it to their friends, etc. Ask your boss at work if it is okay to post an appeal company-wide. Have a custom decal made for the back/sides of your car, with contact info. Make t-shirts for your family to wear, with your need.
My sister offered to be tested to be my living donor. However, a transplant is not an option for me, since I am an active blood cancer patient and always will be. It was disappointing for both of us.
Ginger