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.

Interested in more discussions like this? Go to the Transplants group.

@grady1, Welcome to Mayo Connect. I send my sincere congratulations to you and your wife for the successful kidney transplant. I did not have the same procedure, but I do understand how emotional it is to receive life thru the gift of organ transplant.
I want to assure you that you are invited to read and/or join in any of the discussion groups that interest you.
Rosemary

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@cehunt57

@mlmcg congratulations on your new kidney turning 10. It sounds like you are doing a good job keeping it happy in a happy new home! I think one of the reasons folks are looking for living donors (me at least) is because the UNOS waiting list is so long and is getting bigger/longer every day. There is some research that shows that a living donor transplant is more successful and lasts longer than a deceased donor transplant and there are some practical timing/scheduling issues that can be dealt with if the transplant comes from a living donor. Having a living donor also helps shorten the UNOS waiting list for others. As a person of faith I believe the transplant will occur at the right time and from the right source. I am nearly 13 years post pancreas transplant (deceased donor) and am busy trying to keep it happy in a happy body. I’m also trying to stay as healthy as possible while waiting for a kidney transplant. I just returned from annual pretransplant evaluation at Mayo and my listing has been changed to inactive because my kidney function has improved and I’m too healthy for transplant at this time!

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Bless your heart. What an experience, Six months ago, I had a non-functioning transplant removed. It was decaying and he surgeon told me it fell apart in his hand. I feel so much better now. Check out the “kidney project” for wonderful info on a bio artificial kidney expected to be available in 2020. No anti rejection meds and no dietary restrictions.

Stay healthy!

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@rosemarya

@jolinda, On the most basic level of understanding, I cannot even begin to imagine the physical relief you felt after your surgery – 22 lbs! However the most fantastic part is the new life that you received because of the kidney donation from your friend, and your willingness to be the first patient to undergo this process.
Thank you for sharing your story on Connect. I am confident that patients are already experiencing the benefit of this procedure.

Jolinda, is this surgery to remove the enlarged kidneys (PKD) only for patients with living donors? or can someone with a deceased donor also be a potential candidate?

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@rosemarya Great question, as far as I am aware this surgery has only been possible with a living donor. The kidney removal process happens first and the surgeon can't predict how long it will take until they see what they are dealing with inside each patient. Deceased kidney's have a limited time they remain viable so it seems like it is too risky to do without a living donor. Keep in mind I am not a doctor and things are changing everyday.

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@jennifer0726, I want to invite you to this discussion to meet other patients with PKD experience. You will also find the 2 short videos that I told you about.
I wish you well as you prepare for your living donor simultaneous kidney transplant and bi-lateral nephrectomy.

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@rosemarya

@jennifer0726, I want to invite you to this discussion to meet other patients with PKD experience. You will also find the 2 short videos that I told you about.
I wish you well as you prepare for your living donor simultaneous kidney transplant and bi-lateral nephrectomy.

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Thank you, Rosemary!

I actually have watched both of those videos many times while waiting for an evaluation at Mayo (after being approved in Iowa), and since approval while waiting for my living donor to be approved at Mayo as well! @jolinda’s story gave me hope, and Dr Prieto and the fact that he pioneered and perfected this surgery was the reason I decided to come to Mayo.

I first heard about Dr Prieto through two FB groups for PKD. Everyone who had that surgery in those groups had such wonderful things to say about Dr. Prieto, Mayo, and their surgical outcome.

God answered my prayers by blessing me with my living donor cousin and approval to get the simultaneous laparoscopic transplant and bi-lateral nephrectomies with Dr Prieto on 12/7/2020.

I am elated to know that in less than three weeks I will be rid of my “evil twins aka ugly twins” and have a perfect new little kidney from my generous cousin!

Thank you all for the warm welcome!

Jennifer

@rosemarya @jolinda

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