Polycystic kidney disease (PKD) and future planning

I feel quite confident of my team. Dr Pei is a leading researcher, professor, head of nephrology at the hospital network. In Toronto he specializes in PKD2 my inherited condition. I have been taking ‘tolvaptran’ for 2 years now. It costs 30,000 $ per year but he was able to get it free for me. Ihave also had 2 interventions where they drilled down into my kidneys into the larger cysts 5-6 in in diameter drained the fluid and reinserted a concoction to kill the lining of the cysts What are the major dietary changes you have made to keep potassium low? Normal reading in our reporting is up to 120. Dislysis is necessary when it reaches around 300.

@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.

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!

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.

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.

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.