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Polycystic kidney disease (PKD) and future planning

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

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.

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Replies to "I feel quite confident of my team. Dr Pei is a leading researcher, professor, head of..."
blbird33 | @blbird33 | Jan 25, 2023

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

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stephanierp | @stephanierp | Feb 14, 2023

Hello jdiakiw,
I'm Stephanie and I have PKD, as well. I had a transplant 3 years ago, this week. When my GFR was approximately 17%, I experienced high potassium levels that made me feel sick, and as if my heart was failing. I believe heart issues is a major concern with elevated potassium levels. My initial nephrologist elected to just watch the potassium and not medicate. For several reasons including this, I switched doctors. My new doctor medicated immediately. I felt better within a day. I apologize, in advance, for not remembering the name of the medication. I remained on medication to keep potassium at reasonable levels until my kidney transplant 7 months later.
Here is a link to diet suggestions I followed https://healthyeating.sfgate.com/menu-low-potassium-foods-1688.html

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