PKD kidneys removed at time of transplant

@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

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!

@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.

@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.

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

Hello
I am post transplant 15 months I still have my PKD kidneys in I am scheduled to have them removed in in early February
Has anyone else their kidneys removed after transplant??
Any complications and did the transplanted kicney work as well as it sis before remving kidneys
Just nervous and have a lot of questions running thru my head
Thanks Bob

Hi Bob,
I have 4 kidneys. My native kidneys shut down as a result of my liver. I received a liver and kidney transplant on February 10,2021. The new kidney let me down so I was blessed and received a second kidney transplant on November 12,2021 that works great. They told me that when the other 3 die they will just shrivel and die. Leaving them there unless they create a problem down the road.
That is my story, but as we all know, each of us has a unique story to play out. Good luck and prayers to you 🙏

Firecat
Thank you for your response. I'm glad your were lucky enough to get a second transplant. My native kidneys are causing pain and discomfort. The surgeon wanted to wait a year or more to remove them to make sure the new kidney was working. Had some ups and downs the first year, UTI's and proteinuria, but now everything seems under control.
I'll post afterwards

Hi Bob,
I, too, have PKD. I had one kidney removed at time of transplant three years ago, and second PKD kidney removed a year ago in February. I FEEL SO MUCH BETTER!! My transplanted kidney works better, now that my body is not trying to process the icky stuff my PKD kidneys were putting into my system. The flank pain is gone (not immediate, took a little time). I can breathe better (kidney not squishing my lung) and I feel all over better.

I had the first kidney removed through open procedure and second kidney removed laparoscopically. The recovery for the first one was much longer due to the long incision, and because I was also healing from kidney transplant. I felt like a gutted fish and recovery was months. The second removal was done laparoscopically, at Mayo by Dr Prieto, and the recovery was amazingly easy. I was walking around within a week, with little pain.

My advice to anyone having a PKD kidney removed is: I would do it but insist that it is done laparoscopically. Even if this means rescheduling your surgery with a doctor, who will agree to do it that way. There is no comparison to open and laparoscopic. I suggest Dr Prieto, because he is so experienced with PKD kidneys - and PKD kidneys are a different beast. Self-advocate for a surgeon that can do this in the healthiest way for you. Dr Prieto, not only did it laparoscopically but he also used an old c-section scar to remove the actual kidney. He said he could also have removed it from my old kidney transplant scar. He was committed to causing me th least amount of pain, and scar tissue does not experience pain. I did not want incision to cut through my stomach muscles again, like the first time because the recovery took so much longer and was painful. I was scared before second removal and questioning, whether I should leave well enough, alone. I am so glad I had the courage to get it removed. I feel so much healthier and stronger since I did.
Please feel free to respond with any other specific questions you have, because this is a topic near and dear to my heart. I was terrified to do it and the people on Connect, who had PKD, encouraged and supported me through it. And I am soooo glad I did!
Blessings!

stephanierp
Thank you for the information. I was thinking of leaving well enough alone because my new kidney is working so well.
You said your kidney function is doing better after the removal of your second kidney, that is one of my concerns, whether or not my new kidney will function as it does now
Anyway the beginning of February is the big day
I will post afterwards
Thank you
Bob