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Has anyone had HUGE swings up and down in GFR over time ?
Chronic Kidney Disease (CKD) | Last Active: Mar 4 12:49pm | Replies (19)Comment receiving replies
I think the chemo treatments set my baseline to a very low number, but then
I started getting at least one CAT and one PET Scan every 3 months. A year
later they were moved to every 6 months for the CAT and once for the PET.
Now 11 years later I only get a CAT per year. Sometimes with Contrast,
sometimes not depending on my EGFR at the time. It always drops between 2
and 4 points and then slowly recovers. I feel like it's damaging my kidneys
every time but no one seems concerned but me and the radiologist...
Replies to "I think the chemo treatments set my baseline to a very low number, but then I..."
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@joefriday49 I agree, almost no one seems concerned.
The entire CKD treatment process seems to be inherently flawed. As I see it, It’s basically a non treatable, non reversible disease. Diet is important, as are avoiding many things. Yet, most doctors don’t even tell you about your eGFR and CKD until you are below 60 - stage 3. Then, most nephrologists don’t even want to see you, until your eGFR is much lower then 60 AND you have other symptoms. For example, I self referred to a nephrologist when my eGFR was 53. My urologist has NEVER even mentioned my eGFR.
From what I gather from my research, many , NOT ALL, nephrologists do not seem overly concerned about much, until eventually your eGFR and symptoms get to a point where you need dialysis. If that occurs.
My General Practitioner of 35 years told me last week “CKD doesn’t usually kill you, what kills you is cardiovascular issues from the CKD”. I responded “okay, if the CKD causes cardiovascular issues that kill you, then the CKD does kill you”!
As @gingerw said “ it’s a firehouse of information”. It is. Deciphering it is very difficult. Am I over reacting? Am I under reacting? I think I have to take this in stride, as I am early on in the CKD for now , thankfully, and live healthy and take each day as it comes. For me, that is much, much easier said then done.