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Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

Kidney & Bladder | Last Active: 19 hours ago | Replies (119)
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@my44

Yes, it took a while for my kidney function to deteriorate, as my nephrologist saw that it had started years earlier. My eGFR was in the low 30's when I first saw a nephrologist. I did progress to stage 4 and remained stable at that level for years.
But I don't think doctors should say that they're not concerned when they see our function deteriorating, even if we don't yet need a nephrologist. I think that if we are made aware that our kidney function is deteriorating, (even before we need a nephrologist), we can begin to take measures to preserve function by doing things like starting a kidney-friendly diet to eliminate those foods that are hard on the kidneys and moving away from medicines that hurt the kidneys. I think that if we adopt those types of measures, that could help to slow the progression of the disease, remain stable, and preserve kidney function. Maybe I could have been taking measures sooner to slow the progression.
You are right we have to take care of ourselves.

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Replies to "Yes, it took a while for my kidney function to deteriorate, as my nephrologist saw that..."
windyshores | @windyshores | 2 days ago

Any deterioration should be addressed. My eGFR was stable in the 50's for a long time, then dropped to 36 suddenly, so I then saw a nephrologist. But a stable 3GFR in the mid-50's or even low '50's didn't worry me that much and my doctors never mentioned it.

I have serious pain and was grateful to continue with my strong NSAID, sparingly, for a few more years. Noone told me to stop and noone thinks the drop in eGFR is from meds (I have lupus). But if I had had a more gradual drop, I would have totally eliminated NSAID's earlier. And taken the drop very seriously.

As for diet, my nephrologist recommendations are to push salt and protein, the opposite of what most kidney diets say. I needed to be bad off enough to get thorough testing (ultrasound, autoimmune testing, echocardiogram) to see if low blood pressure or low heart ejection fraction was contributing to a lower rate of filtration in the kidneys.

Muscle loss is another factor in the eGFR along with hydration, of course, so I get a Cysstatin C which is more independent of those factors.

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