Polycystic kidney disease and elevated potassium.

Posted by jdiakiw @jdiakiw, Aug 12 5:57pm

I am an 84 year old male with pkd creatinine ranges around the 200 mark. Recently my potassium hovers around th 5/6 level . I am feeling incredible weakness and feeling frail. Is that likely caused by my 25% kidney functioning ? How concerned should I be about my potassium levels?

Hi, jdiakiw @jdiakiw, as an 85-year-old CKD patient, diagnosed as "moderate" kidney disfunction, I have some experience with your issues of concern, but I'll readily say I'm not qualified to offer any diagnoses. What can you tell us about your Creatinine level? My lab reports it in mg/dL, and the normal range is 0.7-1.2. Mine runs a little high at 1.45 mg/dL. Does your figure of 200 mean you're measuring the solid Creatinine in mL (milliliters), which might be the equivalent of 2.0 in my lab's system? Would that be quite high? What does your doctor say about that? Your potassium in the 5-6 level compares with mine in the 4-5 level. Potassium is a primary interest, since I have a genetic kidney problem that excretes potassium and refuses to reclaim it. It surprised me a few years ago and sent me to the emergency room with hypokalemia. As long as mine stays below 6.0 I know I can regulate it nutritionally. Your kidney function of 25 percent filtration rate (GFR) compares with my 42 percent, which doesn't cause me conscious concern right now, but I know I have to keep an eye on that level. This comparison of your situation with mine dramatizes the importance of a ready line of communication with a medical team that knows in detail what I'm dealing with. Are you able to get that kind of service from your nephrologist and endocrinologist? Martin

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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.

Liked by fiesty76

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Well, @jdiakiw, you do indeed exhibit a rousingly professional medical team. Congratulations on putting that together. I don't have a polycystic condition thankfully, but I had a marble-sized cyst on my chest that ruptured a few months ago. We bathed it daily and kept it protected from bacteria, but did nothing else except tweezer out pieces of the lining when I could see them. To keep my potassium levels up, I drink a cup of pure coconut water for breakfast every day and add a little later if I need additional potassium. Against that background, I simply reduce my daily coconut water in order to bring the potassium reading down. That's not much help for you, I realize, so I'll add that I tracked down a good list of potassium rich foods on the Internet and prepared myself to avoid the most fearsome of them, but it was not necessary in my case, so I lost the list and didn't worry about it. Let me know if you want me to try to track it down and pass it along. Martin

Liked by fiesty76

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@predictable

Well, @jdiakiw, you do indeed exhibit a rousingly professional medical team. Congratulations on putting that together. I don't have a polycystic condition thankfully, but I had a marble-sized cyst on my chest that ruptured a few months ago. We bathed it daily and kept it protected from bacteria, but did nothing else except tweezer out pieces of the lining when I could see them. To keep my potassium levels up, I drink a cup of pure coconut water for breakfast every day and add a little later if I need additional potassium. Against that background, I simply reduce my daily coconut water in order to bring the potassium reading down. That's not much help for you, I realize, so I'll add that I tracked down a good list of potassium rich foods on the Internet and prepared myself to avoid the most fearsome of them, but it was not necessary in my case, so I lost the list and didn't worry about it. Let me know if you want me to try to track it down and pass it along. Martin

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Thanks. I’m ok with the list. D pei arranged for me to he phone yesterday with his nursing in his Dept. We talked over an hour and then she sent me additional materials and links

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@jdiakiw

Thanks. I’m ok with the list. D pei arranged for me to he phone yesterday with his nursing in his Dept. We talked over an hour and then she sent me additional materials and links

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@jdiakiw, I'm glad that you were able to consult with your doctor and nurse. As @predictable said, hyperkalemia is serious. Here's what Mayo Clinic's website states:

"If you have symptoms of hyperkalemia, particularly if you have kidney disease or are taking medications that raise your potassium level, call your doctor immediately. Hyperkalemia is a serious and potentially life-threatening disorder. It can cause: Muscle fatigue."
– When to see a doctor: Symptoms Mayo Clinic – High potassium (hyperkalemia): https://www.mayoclinic.org/symptoms/hyperkalemia/basics/when-to-see-doctor/sym-20050776

When you have time, I'd be interested in hearing what resources and links that your team provided that were useful to you.

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I asked her about an alternative to diet. At 84 I enquired with every morning another surprise I am still alive, why can’t I live out my final days not fretting if I may have too much potassium . I asked about 2 things
1. Any current drugs that bind with the potassium to remove it from my body
2. Since wondering what my potassium level is between monthly tests I asked about a simple home potassium tester I found online and was it available here
Hi Jerry;

I apologize for the late reply. It took me a while to find some answers for you. There are two potassium binders available in Canada: Patiromer (Veltassa) and Lokelma. Neither are covered by government plans. If you have private insurance it may be covered. I asked the pharmacist about the cost, but she hasn’t gotten back to me. You can speak with your Nephrologist or family physician about whether these medications are appropriate for your case.
https://www.veltassa.com/patient/
https://www.lokelma-hcp.com/home.html
I think this is the home test you may have been referring to regarding potassium testing at home. It’s not available yet. However, you can try to contact the company for more details. Possibly they are doing research trials and testing still.
https://www.kaliumhealth.com/technology
You can sign up for updates on their site.
https://www.kaliumhealth.com/
If you have other questions, please let me know. Karla

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High potassium is called hyperkalemia. I take a phosphorous binder every 6 days. You need to Express your concerns to your kidney doctor.

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