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Kidney Transplant: Questions as I prepare for transplant
Transplants | Last Active: Mar 5, 2023 | Replies (28)Comment receiving replies
@l0lag0lag0b3, I would like to reach out and offer a virtual handshake to welcome you to Connect. I'm happy to hear that your transplanted kidney is doing well.
I have a transplanted liver and a kidney. My transplant was 13 years ago, and they are doing well. My kidneys failed suddenly while I was waiting for my liver transplant. The diagnosis was hepatorenal failure. I still have my native kidneys, and they don't produce urine. As long as they don't cause any problems, it is my understanding that they will remain in place.
I realize that you came to Connect with a question, however I have a question for you because now I'm curious. How did you learn about/become suspicious of your native kidneys that would warrant their removal? Were there any specific tests performed, or any symptoms related to the EPO (Erythropoietin Hormone) or the post transplant Erythropoietin? Has your kidney transplant team expressed any concern?
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Hello Rosemary,
Many thanks for your response, Congratulations on the 13th anniversary of transplant and wish you keep on doing well for long time to come 🙂
Let me say a few thing about myself, My wife was the kidney donor which to me was a miracle and over the last three year (to be completed next month) my kidney function has been around 80. except for the PTE secondary issue.
Having an engineering background & a couple of misleading medical experiences prior to the transplant - I have developed an inquisitive mind, and I read with great passion all the articles / case studies related to the PTE secondary issue (NIH/JAMA). Also had my transplant done out of state as my wife wanted me to go a leading kidney transplant center ( srtr.org ) as our current state is not listed in the first 25 performers domestically.
One of my native kidneys is in the pelvic & had low function 5% or less for the 30 years (prior to the transplant). It was not removed during the transplant. Had Ultra sound done to measure the kidney shrinkage.. they have shrunk hopefully in coming time they will shrink more.
My measured EPO is around 40, So currently I am taking highest dose of ARB and let's see if that helps, started with 25mg then 50mg and now 100mg to weaken the EPO paths heading to the bone marrow. if this does not work , phlebotomy is next step ( i have had it done once) . After 4/5 phlebotomies I would quality for native kidney removal (per medicare guide lines (am a senior) . My understanding is even though native kidney are no longer participating in the urine manufacturing process.. how ever they are signaling (generating EPO) saying help me I need more blood) so until the native kidney shrink significantly this phenomena will continue. In Some case studies with 50mg of ARB has been successful to control the high RBC / Hematocrit situation.
Also I am a vegetarian so my heme iron intake is quite low. Do walk at least 4 miles daily to keep my cardiac function active & alive.
Of course if I develop infection due to the native kidneys then the removal will get priority.
That's my story... I still grateful for my kidney transplant and will remain active on the this issue and am thankful to you for sharing your experience. Regards, Neil