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@gingerw Wow! Thank you Ginger for your reply. I love this group! I wrote down those questions you suggested. When I was first diagnosed 5 years ago I attributed it to Aleve I took for back pain, so I have stopped. I did have my appendix removed, surgery, I took strong pain meds for a week and Tylenol. For at least five years I kept myself on a high protein diet to keep my hypoglycemia balanced and weight loss. Maybe it's a combo? I hate to ask but is it important to ask a nephrologist my prognosis about when or if I would have to have dialysis?

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Replies to "@gingerw Wow! Thank you Ginger for your reply. I love this group! I wrote down those..."

@ddon Donna, good for you for having stopped Aleve. Ibuprofen and aspirin are also NSAIDS to watch out for. Unfortunately, the medical community offers acetaminophen as a good thing to use, but most of us find that doesn't touch our discomfort. I myself am told no more than 1500 mg a day of that.

There are so many meds that can cause side effects later. My cousin had a cardiac medication that 10 years later was attributed to his kidney failure.

Indeed, it certainly could be a combo of things! Let's see what your nephrologist says about the base cause of your sliding function, and what course to take to stabilize it. Dialysis is oftentimes discussed as we get to about 15% function, and many people don't start it until below 10% function. There are several factors to consider here. Do you want to think about a transplant? If so, once your function is at 20% you can start the evaluation process and be listed.

Although you didn't ask, I started peritoneal dialysis at 14% eGFR, in Aug 2022. I was already on treatment for blood cancer since Aug 2021, and moving to dialysis helped give me a better quality of life. My awesome medical team and I had discussed the realities of things. Starting treatment for multiple myeloma meant I would be on it the rest of my life, as I am not a candidate for stem cell transplant to put it in remission. Starting dialysis meant I would also be on that rest of my life, as I am not transplant eligible. Besides the blood cancer that rules out a kidney transplant, I am O+ blood type, and would require that same type in a transplant! That is my reality.

You will come up with questions relating to your own journey. Look at the responses here and in our support group. Write anything down that comes to mind. You can edit it later. If you want, keep a journal to chronicle your path; that can be mighty helpful. And let us know when you have more questions. Reach out to me, we're here to be a support system for each other!
Ginger