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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
@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
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My maternal grandfather was Native American and my faith in him and my Shaman (medicine man) who pow-wowed me at 6 months old. I was deathly ill, dying and he placed a special spirit inside me that would guide and protect me for the rest of my life. Keep that in mind when I explain why I call myself a “freak of nature”! You see, my life has been one crisis after another for 77 years. I literally drowned at 5 years old but was resuscitated after 3 minutes of being dead because my heart stopped. At 7 years old, my daddy was killed in a coal mining accident and I in turn tried to kill myself to be with him again. I finally committed suicide at 26 because I couldn’t live a lie anymore. I stopped my heart and was dead for 3 minutes and 7 seconds but was resuscitated again and had to live a life in a nightmare. You see how cruel life can be, I was given a protective spirit that somehow finds a way to protect me. I had an Abdominal Aortic Aneurysm accidentally discovered by my urologist looking at my right kidney and why I was passing so much blood. It goes on and on and on and on, like my protective spirit enjoys saving me. You can even throw in rare things in my body, no problem for my protector. How about a few very rare health crisis’s, a little tougher but not for my protector. Throw in 1 very, very rare blood problem, it’s still working on that one. I am not immortal, just a very studious person who can spent hundreds and hundreds of hours to find an answer. Know what MGUS is? How about Kappa IgM MGUS? It’s a rarer form of MGUS. How about Kappa IgM MGUS progressing directly into Waldenstrom Microglobulemia? That’s the very, very rare form of Non Hodgkin’s Lymphoma that’s trying to find places to set up business. Unfortunately it’s now in my brain and it hurts a level 9/10 pain without any medication. I discovered all that, rather my protector guided me to ask the correct questions. And now I have 6 doctors working with me to track all the information down that I, rather my protector supplied. Oh yeah, you can throw in a 1 in a million heart defect it discovered that’s ready to quit. Bad Kidneys that have cyst popping out, a bowel that can’t absorb enough food to keep me alive with all those bad guys grabbing it first. Or how about 19 lung infections in the last 8 years because I have an immune system that’s out to lunch. In 2017, I had the flu, bronchitis and pneumonia all at the same time, tore my left lung apart. Or how about battling my 4th case of Covid but here I am, still lock-in’ butt that is.
Sorry to hear about all your troubles, keep fighting, don’t give up , just look at me and I’m almost 79. The moment you give up, will be the day you’ll die. Here’s a quote from my autobiography, I talk about my “Point of No Return.” “That’s when you’re more afraid of life and living, than you are of death and dying!” Eleven hours after I thought of that saying, I killed myself.