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JM17's Post
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JM17
2y ago
Living with Stage IV Kidney Disease: How Long Can I Last?
Hi! I have stage IV kidney disease caused by lupus. My GFR is 20, but I cannot be referred to the transplant clinic at my facility without it “staying under” 20 for three labs in a row. One of the things I struggle with is knowing how long I can last until I start to need dialysis. I know it is an impossible question, but I’d love to hear other experiences. Did you make it 2 years from this point of having a GFR of 20? 5 year? More? It is hard to plan my future when this is so unclear to me, although I suppose that’s true to some extent for everyone.
Your answer
HW
2y ago
I was very lucky and ended up having a kidney transplant about 6 months ago. A family member donated it to me. My lowest GFR was around 11 before I got the transplant. I never went on any dialysis. Good luck if you have any questions I am always happy to help!
Lexilex
2y ago
When I first found out in 2015, I was at 18-19%. Currently at 13% and have an appointment today to see where I am. My doctor is shocked at how long I've lasted. It's definitely possible to last years at 20% depending on your condition. I believe what helped me last so long was medication and trying to stay close to the diet I was given. I also drink a lot of water since I'm not restricted from liquids and try to stay away from soda as much as possible. Good luck on your journey and I hope the best for you ❤️
Seahorse
2y ago
Hi....I did not last very long. I think it was about 2 years for me and unfortunately one of my greatest issues was the blood pressure & the fact that the doctor that I was seeing at the time kept me on a very "tight leash" withe the meds!! I literally ran out of BP med on the day I had an appointment. When she sent the Rx in via computer.....I went to pharmacy to pick it up and they did not get the refill. Then the office could not reach her. So..... basically after couple days without my meds the GFR dropped pretty drastically!!
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