Bilateral Nephrectomy after transplant

Posted by hello1234 @hello1234, Aug 28, 2021

Hi all,
A good friend of mine who had her kidney transplant four years ago just called me. The reason for her transplant was Polycystic Kidney Disease (PKD). At her 4 year post kidney transplant anniversary this week, she was just told that her native kidneys have grown in size and are covered in cysts. They need to be removed because they are causing problems. She is being scheduled for a bilateral Nephrectomy in a couple of weeks and she is very scared. I told her that I would message my Transplant Mayo Connect family to see if anyone has any experience with this surgery and can offer any advice or comfort?
Thanks everyone!!

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jodilynng | @jodilynng | Mar 10, 2023

In reply to @somedaydialysisfree "@jolinda, @gingerw, or anyone Any suggestions for cysts popping & pain you dealt w/it?" + (show)

Hi! I have had a few of them burst. I use heat (I have microwaveable corn bags) or Epsom salt baths and they help tremendously. Also might take a Tylenol or two as well.

Rosemary, Volunteer Mentor | @rosemarya | Mar 11, 2023

@somedaydialysisfree, @jodilynng - I have no experience with PKD or cysts. However, while I was searching for information for another discussion, I came across this information. I noticed that both Kidney cyst growth and Pain are mentioned in the treatment section.

- Polycystic kidney disease
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/diagnosis-treatment/
Are you monitored in any particular way to keep an eye on cysts. Are there any concerns about infections or other complications that could develop?

somedaydialysisfree | @somedaydialysisfree | Mar 11, 2023

Thank you!

jodilynng | @jodilynng | Mar 11, 2023

In reply to @rosemarya "@somedaydialysisfree, @jodilynng - I have no experience with PKD or cysts. However, while I was searching..." + (show)

I go to Mayo for my PKD care. They have an excellent nephrology department and the main focus of my doctor is PKD. I’m currently in the process of being evaluated for a transplant. Some people do have issues with infection after cysts burst. I have been lucky and have had no problems.