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Polycystic kidney disease (PKD) and future planning

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

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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Replies to "Hello Stephanie, and hopefully more. I'm Dan and I was recently diagnosed with cysts on my..."
Ginger, Volunteer Mentor | @gingerw | Sep 23, 2023

@juventus Welcome to Mayo Clinic Connect. From what I could find, Bright's disease is an old term for inflamed kidneys.

Here is what Mayo Clinic has to say about kidney cysts. I hope you will take a look at the article, and let me know if you have any questions?
https://www.mayoclinic.org/diseases-conditions/kidney-cysts/symptoms-causes/syc-20374134#:~:text=Kidney%20cysts%20are%20round%20pouches,what%20causes%20simple%20kidney%20cysts.
Ginger

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stephanierp | @stephanierp | Sep 25, 2023

Hello Dan,
Welcome to Mayo Connect and thank you for reaching out. You mentioned you were diagnosed with cysts on your kidneys. Were you also diagnosed with PKD?

I was diagnosed with PKD over 25 years ago. I remember the time as shocking and disorienting. No family history for me, either. It took a period of time to adjust - to recover not from the disease, but from diagnosis. For me, some unusual high blood pressure readings sent me in for an ultrasound. I looked at the screen and my kidneys were covered with black cysts - "too numerous to count" is what I was told. Up until that day, I believed I was completely healthy, and after that day, I realized I carried a disease that could take me out.... and there was no cure.... and it was relatively rare, so there were not a lot of people to talk to. It was a lot to get my brain around.

I am glad to hear your renal numbers are good and that you are exercising, and drinking lots of water. A healthy life-style is very important and increase your odds, tremendously, for avoiding kidney failure. Keeping blood pressure in check, is also key. I had to do that with meds.

I also recommend avoiding high stress situations and relationships. One of the interesting things I noted over the years was that when I was going through significantly stressful times, my GFR would drop significantly. Years, when I had normal life stress, my GFR stayed pretty much the same. I learned, a little late in the game, that I needed to distance myself from crazy-making people and situations, even when (or perhaps, especially when) those people are family members. I just share that last bit, because it is the one thing I wish I would have done for myself, when I was first diagnosed.

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