Polycystic kidney disease (PKD) and future planning

@racing212, this sounds like a new development. You are awaiting a liver transplant, right? And now, a mass on your kidney has been discovered? Do they know what the mass is?

Not yet they don't.

Hello,
I'm Stephanie and have PKD. I am so glad to hear you are stable at 3a. Many people, around 50% as I understand it, live their entire lives with PKD and do not go into kidney failure. Which is very positive. I would advise going to pkdcure.com hosted by the PKD Foundation for a lot of information on doctors, who specialize in PKD specific issues, current research being done, new medications recommended, etc. Expect the best - no kidney failure. Plan for the worst - with a knowledgable medical team and updated information.

If your journey does take you to kidney failure, as mine did, the good news is, it will come slowly. You need to go to all your doctor appointments to stay on top of its progress. This allows you time to get placed on kidney donor list and go public with your kidney request for a transplant. Another good thing, is your disease will not attack your new kidney, so a long healthy life is still very possible.

I am glad you have found your way to this board. Please feel free to reach out anytime.

Blessings!

Thank you for this info. My surgeon after three months post kidney transplant, is considering draining a liver cyst as the liver has enlarged after transplant and pressing painfully on my ribs daily. Did you experience increased pain after draining the kidney cysts? The surgeon seems hesitant to drain the liver cyst and I need to ask about the risks. Thanks, BB

What are parpelvic cyts on kidneys and how are treated

Thank you, reading your post made me feel better just keep my chin up and don't think the worst live for today and don't dwell on the future 😊

Hi
I'll be going for surgery on Monday to remove my PKD kidneys post transplant. One year and 5 months.
Has anyone had this surgery after a transplant and how did it affect your kidney function?
Also, were you relieved not having the pressure from the PKD kidneys anymore? Did you have any complications?
I'm very anxious about this surgery. My tells my any surgery its risky and everyone handles it differently.
I would like to hear from any of you in the same situation.
Thank you
Bobinnevada

Hi @bobinnevada I see that @jolinda had her PKD nephrectomy at the same time as her kidney transplant. Let's see if she is able to check in here before your surgery on Monday! What a Valentine's Day gift to yourself, right?

Looking forward to hearing from you and your experience after the surgery. Where will you have the surgery done? Sending you a hug of support!
Ginger

Hi Ginger ,Thank you for your response. I'm having the procedure done at UMC in Las Vegas.
I was hoping at the time of transplant they could remove the disease kidneys aslo but time was of the essence since I was receiving a kidney from a deceased donor to whom I am so grateful
I will posting after the surgery.
Bob

@bobinnevada Just saw this and am hoping everything went well today. How large are/were your native kidneys. Just had live donor transplant in Dec. Not sure if I would qualify for the double nephrectomy but kinda want to... Thinking of you.