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Removal from kidney transplant listing
My loved one was placed on the transplant listing for kidney transplant at a center in Tx. Over the month they determined that his case was too complicated (because of a prior Bone Marrow Transplant with radiation over 20 years ago) ) and removed him from their listing.
Will this removal from the one transplant center location make it more difficult for him to get accepted at another?
He was told that if they hired the expertise needed they would call him.
Is that likely?
At that location he had two donors that were found via social media that we do not know. We are told that they will only be told that he is no longer going to get a transplant at their location.
How can we possibly find or get the anonymous donors to move to a new location?
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Hi @kandyh
Is the concern the lifetime immune suppression medications will put him at risk for infections and cancers. Is that the main concern for eligibility?
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.
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1 Reaction@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
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2 ReactionsHi @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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1 ReactionI have made a post telling what has happened and where he hopes to be qualified. It maybe best to wait till he is qualified so that we don’t encounter the same problem if he is not qualified.
A year ago when we started I never in my wildest thoughts did I think this process would be so difficult. We had 5 family members and friend willing to donate. None of them qualified.
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2 ReactionsThank you. Those are some ideas I had not thought of. Like sending to everyone in your email contacts. You never know.
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1 Reaction@kandyh 😊
I was just like you! I was super panicked to find a living donor. The good news is that I ran into a fantastic warm soul in the transplant waiting room who told me not to worry. She said none of her living donors were able to proceed, but she received a wonderful deceased donor kidney. Fast forward, the same thing happened to me! Fast forward, the same thing will happen for your son! The primary focus has to be getting placed on the transplant list. That's the priority and everything else will fall in place.
I received a call at 2am in the morning that they had a match and the Operating Room was reserved for 2pm that day. Miracle ❤
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2 ReactionsYou brought sweet tears to my eyes. ❤️
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1 ReactionBIG HUGS @kandyh ❤❤❤
Please keep us posted on how things are going, your consultation appointment, the approval, etc !
I really feel like a healthy kidney is going to be matched to your young 30 year old son. And with access to the doctor with bone marrow transplant experience, you will have everything you need for a successful outcome with a deceased donor. (If a living donor works out, that will be fine too). 😊
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2 ReactionsYou need to find another church.
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