Polycystic kidney disease (PKD) and future planning

@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.

Here is her links
Good websites for meal ideas:

http://www.davita.com/recipes

http://www.myspiceitup.ca

http://www.kidneycommunitykitchen.ca

This is the link for the low potassium information:
https://www.ontariorenalnetwork.ca/sites/renalnetwork/files/assets/nutritionfactsheet-potassium.pdf

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

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

I have just been approved for financial help from AZ&ME Prescription Savings Program for the mentioned drug, Lokelma, Potassium Binder. In the US the cost is $2,000. My insurance would have paid half. However, because I am low income I qualified for free meds for the next year. The drug has to be taken very carefully, i.e. with close supervision. I have not yet started and am still researching, if you want more info on this program please let me know. Your nephrologist and staff can help you with qualifications needed. Kitmus

Thank you. I plan to when next he comes to town. My concerns are ebbing, however.

Polycystic kidney disease
Does anyone have this and know if it always leads to kidney failure. Mine has been stable I am stage 3a but what about my future

@lc1989 Welcome to Mayo clinic Connect! Polycystic kidney disease is usually a inherited trait in families. Is this the case for you?

Here is an article published by Mayo Clinic on PKD and its treatment: https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820#:~:text=Polycystic%20kidney%20disease%20(PKD)%20is,they%20can%20grow%20very%20large.
It's a good thing you are looking into more information now.
Ginger

Hi @lc1989, I'd like to add my welcome. I moved your question about PKD and if it always leads to kidney failure to this existing discussion:
- Polycystic kidney disease (PKD) and future planning https://connect.mayoclinic.org/discussion/pkd/

I did this so you can easily connect with fellow PKD-ers like @caseyk @jolinda @stephanierp @nimalw @seantraci9 @tomo @triff1 @jdiakiw @predictable @kitmus @kzeiss.

I'm not sure if I'm in the right place. I'm going back to mayo for a removal of a mass on my kidney. On March 1-3. I was just there a couple weeks ago.