PKD kidneys removed at time of transplant

Posted by jolinda @jolinda, Jul 24, 2018

PKD (Polycystic Kidney Disease) caused my kidneys to grow to be huge! Not only was I in stage 5 of kidney failure when I arrived at Mayo Clinic, which is bad enough but I also was miserable because my native kidneys grew so large I had trouble eating, sleeping, moving and breathing. My scans showed them pushing up in my lungs and pushing down into my hip bones. NOT FUN!!! I was very blessed to have a healthy living donor but I was worried that even after a new kidney I'd still have a poor quality of life because my giant old, non-functioning kidneys would still be there causing so many problems. I was doubly blessed to meet Mikel Prieto when I was at Mayo clinic in Rochester, MN who is a brilliant surgeon and was already researching the possibility of doing both surgeries at once (1.bad giant kidneys out AND 2.new healthy kidney transplanted). I am so proud to say I was the first patient who received a laparoscopic (tiny, tiny incisions) bilateral native nephrectomy (both bad PKD kidneys removed) with a simultaneous living donor transplant (awesome new kidney transplant from my healthy friend Dawn) all at one time. After surgery I was 22lbs lighter!!! Can you imagine, that's like 10lb twins... YUCK!!! This is a complex surgery and it is not right for everyone but it improved my quality of life beyond measure. I wanted to share my story so others are aware that this type of hope exists but also I want to find out if anyone else has a similar story.

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@bobinnevada

I had mine taken out 2 weeks ago post one year transplant. Rollercoaster of a ride. Just got home still draining fluid. Lost about 25 lbs. a lot longer recovery time than conventional transplant
Hanging in there
Bovinenevavda

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I am glad those icky PKD kidneys are out of you, but I am sorry your recovery is complicated. I will look forward to hearing if you experience an overall feeling of health, when you are further healed. Wishing you all the best!

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@bobinnevada

Yes did have ileum’s, had to go back in and clear

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I had an ileus after transplant, sooo painful.

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Jolinda
So happy for you. I am 69 and live in NY. I have grossly enlarged polycystic kidneys. My egfr is 36. My nephrologist says I should get a live kidney donor transplant in 2 years. I want Dr. Prieto to do transplant. How do I start process with Mayo Rochester or is it too soon? I also have grossly enlarged polycystic liver disease but function is normal. Pain is manageable.
Thank you for any advice you can give me.
Jessica (kidney bean)

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@kidneybean1

Jolinda
So happy for you. I am 69 and live in NY. I have grossly enlarged polycystic kidneys. My egfr is 36. My nephrologist says I should get a live kidney donor transplant in 2 years. I want Dr. Prieto to do transplant. How do I start process with Mayo Rochester or is it too soon? I also have grossly enlarged polycystic liver disease but function is normal. Pain is manageable.
Thank you for any advice you can give me.
Jessica (kidney bean)

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@kidneybean1 Jessica, here is a link to the transplant center at the Rochester campus: https://www.mayoclinic.org/departments-centers/transplant-center/home/orc-20203891

My suggestion is to contact them and see how best to proceed. Have you been evaluated for transplant already? It is not a simple process. If you have a live donor in mind, have they been evaluated, yet?

As an end stage kidney disease patient, I know things can change in an instant. What you don't want to do is be left "holding the bag" so to speak. Get your information from the transplant center and move forward with your plans.
Ginger

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