About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (12)

Wed, Mar 11 8:26am · Living Donor Kidney surgery next Tuesday: Any advice? in Transplants

Thank you. No new information. Still waiting on the NKR. With my Mom's high PRA of 83% it may be a long wait

Sun, Mar 1 6:52pm · Living Donor Kidney surgery next Tuesday: Any advice? in Transplants

Thank you for your kind words. Best of luck to your daughter and husband! <3

Tue, Feb 11 7:56pm · Living Donor Kidney surgery next Tuesday: Any advice? in Transplants

Hi Rosemary!
Aww.. thank you for thinking about me and my Mom, that is very kind.

She is doing alright on dialysis, much better than she was before starting dialysis and better than she was at the beginning of dialysis. The month before dialysis started she was getting progressively weaker, needed a walker to walk anywhere further than just around the house, and was having problems with shortness of breath. Most of that has resolved since starting dialysis, except she is still very fatigued. They attribute this to her anemia, they aren't sire if it's secondary to her kidney failure or another unrelated issue, they're sending her for a colonoscopy. When she first started dialysis she was very dehydrated, dizzy, and nauseous from the fluid removal, this has subsided as they have adjusted for her specific needs- they replace all of the fluid they take off. She hates being on dialysis (who doesn't?) and we are still very hopeful for a transplant.

Her last blood draw in January showed stable antibodies. She had more bloodwork done on 2/3 and if that also shows stable antibodies they will put us back on the paired donation list. We should find out Friday 2/14 or Monday 2/17 hopefully (they say it takes 10 business days to result the labwork). Once we are back on the paired donation list the National Kidney Registry can start looking for a chain for us again. It can take anywhere from 2 weeks to one year for them to find a chain. We've been told that her antibodies will not make it harder for them to find a chain, but I find that hard to believe. She used to have one antibody and now she has 14, that has got to be harder to match? I'm hopeful we will be relisted soon and that they will find a chain as soon as possible.

Thank you so much for your kind words. It humbles me to know that a complete stranger takes the time to think about my mother and I. Thank you.

Tue, Jan 7 9:34pm · Kidney transplant - The Journey from the Donor's Side in Transplants

Thank you very much for your loving support, I greatly appreciate it. I will keep you updated. We live in a small suburb just west of Rochester, NY and are fortunate to have Strong Memorial Hospital only 20 minutes away so we don't have to travel far.

Mon, Jan 6 5:23pm · Kidney transplant - The Journey from the Donor's Side in Transplants

Thank you very much. They told us that her most recent plans show her antibody level is unchanged from her previous labs, so that's a good sign. Hoping to find our this week how long they have to see stable antibodies for before they'll put us back on the paired donor list. Then fingers crossed they'll get us back in to a new chain soon!

Mon, Jan 6 8:20am · Kidney transplant - The Journey from the Donor's Side in Transplants

Yes, she started dialysis on 10/16/19. When she was in the hospital having her catheter put in they decided to give her the blood transfusion. Dialysis was rough at first, she actually still produces urine and has about 6% kidney function, so at first she was getting very dehydrated and dizzy, but they've adjusted to her needs and she's adjusting. We're actually about to graduate a class to do in home hemodialysis. We're going to do it at home for the first time on Thursday!

Sun, Jan 5 7:31pm · Kidney transplant - The Journey from the Donor's Side in Transplants

Thank you so much for checking in. Unfortunately surgery did not go as planed. A week prior to the surgery it was cancelled. My mom's antibodies changed, most likely due to a blood transfusion that she had in October when her anemia peaked, and they didn't catch it until the bloodwork at our pre-anesthesia testing. She was no longer a match with her donor and the chain was cancelled. We were crushed. We were taken off the NKR, marked "inactive". Now we're waiting for the antibodies to stabilize. Once they see that they have remained unchanged for a few months they will re-list us.