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← Return to kidney disease stage 5
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Hello, I'm near eGFR 20 which would put me in the transplant category. I have not reached it yet. I'm on a 95% vegetarian diet, careful with salt and potassium. My first cousin has also lived with ESRD for over 10 years without dialysis. And a very comfortable life as well. No symptoms to speak of, her blood work, creatinine, keeps her in that stage. She eats very little meat protein and watches her salt and potassium carefully.
May I ask what your numbers are? eGFR, creatinine, proteinuria (?). There are so many factors that play into how serious kidney disease is.
I have nephrogenic diabetes insipidus, which is a rare disease. My urine is always very clear which means my kidneys are not cleaning my blood very well. But I have no noticeable symptoms (now at least).
Kidney disease is mysterious in my opinion. My PCP has a few patients who refused dialysis and are living quite normally in "ESRD." I mean for years! I have an appointment with my nephrologist next week. My PTH is high (315), so I might have to take medicine for that.
My big concern is infection or virus illness. I just finished my shingles vaccine. I'm so careful washing my hands and cleanliness.
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Most recent numbers: eGFR= 79 the first time I've been below 80 since my transplant. Before transplant I was always below 15, usually around 12 or 13 more or less. In the last few months before transplant I went all the way down to 8. That's when I decided to go for transplant. Creatine was all the way up to 6.7 on the day I got transplant. I was generally somewhere between 3.5 and 5.5 for most of the 10 years before my transplant. Since transplant my creatinine has been less than 1 until the most recent bloodwork that showed creatinine at exactly 1. I never had trouble with parathyroid until I got the transplant but it's been ridiculously high since the, but does seem to be slowly coming down. Most recent was 146 parathyroid. My compromised immune system is also a big concern. My WBC got down to 1.6 and I suddenly started testin positive for BK virus after 9 months of new kidney with no BK positives. I too am constantly washing my hands and also mask up whenever I leave the house even to just take out garbage.