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Polycystic kidney disease (PKD) and future planning

Kidney & Bladder | Last Active: Sep 26, 2023 | Replies (37)
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@stephanierp

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!

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Replies to "Hello, I'm Stephanie and have PKD. I am so glad to hear you are stable at..."
lc1989 | @lc1989 | Feb 1, 2023

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 😊

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juventus | @juventus | Sep 23, 2023

Hello Stephanie, and hopefully more. I'm Dan and I was recently diagnosed with cysts on my kidneys. I'm not sure how I wound up with this. No one in my family has ever had anything like PKD. My Dad (GRHS) told me his father had Bright's Disease, but that's just an inflammatory type of kidney disorder. So it's been nearly a year into this diagnosis and I feel normal. What's different is I hydrate a lot more. I drink a gallon of water per day. I get as much exercise as I can.

So on a routine medical checkup, my primary care doctor found microscopic blood in my urine. Next thing I know, I'm getting a CT and a consult with a nephrologist.

I'm looking for support since it's rare and there are many groups nearby for this. I especially took comfort in your post that I'm responding to now. I'm trying to do what I need to to keep from getting kidney failure. My renal numbers are good currently.

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