Hi I’ve been Stage 4 for at least 18 months now. Purportedly from Vitamin C toxicity, but I have my suspicions about that. I was 6 months out from Cisplatin chemotherapy when the symptoms appeared. Regardless, does the cause matter if it can’t be remedied. Went through 3 months of dialysis, wouldn’t recommend that, I was ready to face the consequences without it but the excellent nephrology team at Mayo Phoenix convinced me to try it on a temporary basis. eGFR improved from < 8 to 20+ and I stopped dialysis 16 months ago. I’ve been staying steady at 20 or so since then. I follow the diet for low oxalates, potassium etc closely. Drink lots of water. I’m able to enjoy life, a decrease in activity from the pre-cancer days but that’s to be expected at 73. I do have spells where I’m exhausted and feel somewhat ill. I know from past experience, I had HepC, to slow way down and rest till I feel better. DO NOT try to power through it. Usually lasts a week or two then I’m re-energized.
I qualified for the transplant list, I’ll be on active list next month, hopefully after two years of being cancer free. Frankly at my age, I lean toward allowing the kidney, if available, to go to a younger person. But they may change if and when I’m faced with the decision to die. I’m on bonus time already and feel fortunate for that.