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What are things I can do to live well with 3b kidney disease?
Kidney & Bladder | Last Active: Jun 4, 2022 | Replies (32)Comment receiving replies
Because of having a very rare blood disorder, I’ll be 1 out of 3.5 million people with it. That means there is only about 340 people in the United States that will have it, if they get tested for it. The official name is Waldenstrom Macroglobulemia, which is already a rare form of Non Hodgkin’s Lymphoma. So my 6 doctors believe my WM has set up a home in my brain causing a tumor. I have to get 2 CT scans on the 24th and 3 MRI’s June 22nd. If that isn’t bad enough, they believe the tumor is the same kind that killed my sister in 1989 at just 39yo. It was a rare tumor called Anaplastic Astrocytoma. My poor kidneys can’t keep up with all the bad guys setting up shop all throughout my body. My last blood check had a reading of 38 and was still tanking towards dialysis, so I’m literally falling apart but still fighting. My favorite quote “I cried because I had no shoes, till I met a man who had no feet.” Things can always be worse. I came into this world with a sickly body and I’m going to leave still in it.
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@becky1024 I echo what @nscappa has said, in that we are here to support you however we can. I also have an ultra-rare health condition, involving my kidneys, and have found that working with my doctors, doing my own research, and being "part of the team" helps me.
Dialysis typically is considered as a person gets towards 10% function, except in cases of sudden kidney failure. Gentle exercise, good healthy eating [low/no sodium, careful with potassium and phosphorous] stress reduction however you can, all can play part of keeping yourself as healthy as possible. Learn your lab numbers, watching trends not single results will give you good guidance. Many times declining kidney function comes on slowly, and our bodies learn to adapt to it, so it takes us by surprise when we realize how we may be affected. I feel fairly well at 13% function, but in looking back, I know my energy and "usefulness" used to be better. Now, add in my other health issues like being an active cancer patient on chemo, and I am reluctant to put all the blame on my kidney issues.
I do hope we can offer you support and ways to handle all you are going through. Have your doctors found any link to what your sister went through, and your case, to help you now? You have about three weeks before those tests, how will you handle your time and emotions? Have you thought about writing it all down, keeping a journal to sort things out? We are here for you, please lean on us!
Ginger