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Polycystic Kidneys-double nephrectomy-Dr. Prieto-Transplant

Posted by kidneybean1 @kidneybean1, Feb 22 9:02am

I have grossly enlarged Polycystic kidneys (PKD) and grossly enlarged liver (PLD). My egfr is 37. My nephrologist said I will be needing a double nephrectomy and a live kidney transplanted in, in a few years. She said for me to ask my friends to think about being a donor. I have received about 5 replies that they would donate. My husband wants to donate. I am 69 yrs. old and my husband is 64. I have been watching the videos of Dr. Prieto with paired transplants. I live in NY. Has anyone had a transplant at Mayo Clinic (Minnesota) with Dr. Prieto as the surgeon? How does that work if you live far away? And were they able to take huge kidneys out at same time as getting new kidney put in?

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sissydog | @sissydog | Mar 6 11:29pm

I had a kidney transplant and bilateral nephrectomy in September. Dr Prieto was my surgeon. Mayo is a great hospital. I was admitted for 6 days and spent a few weeks in a condo. You will have appointments for a few weeks. Lots of housing options. Let me know if you have any other questions.

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kidneybean1 | @kidneybean1 | Mar 15 12:34pm
In reply to @stephanierp "I am 58. I was 54 at the time of my kidney transplant and 56, when..." + (show)
@stephanierp

I am 58. I was 54 at the time of my kidney transplant and 56, when my second kidney was removed. And just because my decline took 7 years, is of little consequence to your situation. As we know, the rate of organ decline is dependent upon many factors that vary from patient to patient. I am sorry you have pain to endure. I remember it and am beyond grateful it no longer exists in my body. Would they remove part of your liver too? To provide you with some relief? Focusing on blessings and gratitude helped me endure the pain of the disease, and I can hear it also helps you. I wish you the very best, and am happy to share anytime.

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Stephanie,
My husband says my breath smells bad. I’m still in stage 3b. Is this another way the body tries to get rid of toxins through the lungs and skin?

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1 reply
stephanierp | @stephanierp | Mar 15 3:10pm
In reply to @kidneybean1 "Stephanie, My husband says my breath smells bad. I’m still in stage 3b. Is this another..." + (show)
@kidneybean1

Stephanie,
My husband says my breath smells bad. I’m still in stage 3b. Is this another way the body tries to get rid of toxins through the lungs and skin?

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Yes, I believe when the body can't get rid of urea through urine, it eliminates it through the lungs. The body truly is amazing in the way it continues to keep us healthy, when other things start to fall apart. Urea and saliva form ammonia - so it smells like ammonia breath. I brushed teeth and tongue several times a day, and used mouth wash, and breath mints. It helps but does not get rid of:)

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kidneybean1 | @kidneybean1 | Mar 16 10:31am

I had an episode yesterday what felt like a low blood sugar incident. Shaky cold sweats. (Labs normal) After I ate I felt better but it was concerning to me. Since I have Polycystic Liver Disease too, I wonder if I have cysts on pancreas too? It can’t be viewed on scan. I’m thinking to stay active, moving, walking can help all those ducts and organs being compressed to keep working.?

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1 reply
kidneybean1 | @kidneybean1 | Mar 16 10:41am
In reply to @kidneybean1 "I had an episode yesterday what felt like a low blood sugar incident. Shaky cold sweats...." + (show)
@kidneybean1

I had an episode yesterday what felt like a low blood sugar incident. Shaky cold sweats. (Labs normal) After I ate I felt better but it was concerning to me. Since I have Polycystic Liver Disease too, I wonder if I have cysts on pancreas too? It can’t be viewed on scan. I’m thinking to stay active, moving, walking can help all those ducts and organs being compressed to keep working.?

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Correction:
My Glucose was 70 according to bloodwork this week. Is that low enough to feel unwell?

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kidneybean1 | @kidneybean1 | Sep 15 4:26pm
In reply to @somedaydialysisfree "@kidneybean1 Highly recommend Dr. Prieto & team. I had my polycystic kidneys out there last April..." + (show)
@somedaydialysisfree

@kidneybean1
Highly recommend Dr. Prieto & team. I had my polycystic kidneys out there last April by him. I did not have transplant at the same time but yes, they can do it. My experience was a great one. It was such a relief to get them out & have the pain & discomfort gone.

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@somedaydialysisfree
Do you live in Minnesota!
I live near Albany, NY. Very far away for me. I am looking at my options here in NY hospitals.
Very overwhelming for my husband and I to choose which transplant center works best for me. I do not accept blood transfusions for religious reasons. Plus, we have to figure out insurance costs since I am on Medicare. We’re meeting with a health insurance person next month with our questions. One day at a time…
-Jess

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kidneybean1 | @kidneybean1 | Sep 17 5:42pm
In reply to @somedaydialysisfree "@kidneybean1 Highly recommend Dr. Prieto & team. I had my polycystic kidneys out there last April..." + (show)
@somedaydialysisfree

@kidneybean1
Highly recommend Dr. Prieto & team. I had my polycystic kidneys out there last April by him. I did not have transplant at the same time but yes, they can do it. My experience was a great one. It was such a relief to get them out & have the pain & discomfort gone.

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Where was your home when you got your kidneys out? Do the accept PDPH insurance as well as Medicate?

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