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bugsowen (@bugsowen)

Understanding GFR and kidney disease: What's normal?

Kidney & Bladder | Last Active: Sep 27, 2020 | Replies (19)

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My next dr appointment is next Friday. Hopefully I will find some additional info and a referral for renal dietician. Also, are you seeing a nephrologist? Some say definitely should…

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Replies to "My next dr appointment is next Friday. Hopefully I will find some additional info and a..."

@bugsowen Like @jolinda, and others here, I have a nephrologist. You might ask your primary care dr if he feels you should be followed by a specialist. My nephrologist works hand-in-hand with my oncologist and primary care drs, and they exchange information. If you know someone else with kidney disease you might want to ask them, or if you are near a teaching hospital or a Mayo Clinic campus, think about getting referred to a nephrologist there.

@bugsowen, My first indication of kidney disease was from a scan report ordered by my primary doc (pcp) for something else and mailed to me by the specialist reading the scan. I immediately called for an appt with pcp to ask for a referral to a nephrologist. My pcp hadn't mentioned that my egfr scores had been running lower than normal for some time. Only learned that I was stage 3 ckd at first visit with nephrologist who'd used scan results to tell me of my diagnosis. Have learned since from other ckd patients that many pcp's don't consider ckd worth discussing until a patient reaches stage 4.

It then took 2 requests to pcp and 2 requests to nephrologist to get referral to the dietitian. That persistence paid big dividends for me because I'd also been diagnosed with prediabetes and trying to come up with a diet plan for both was time consuming and nerve wracking. Modifying my diet with help from dietitian, learning how to read lab reports and make needed adjustments and learning from other ckd patients on this and another patient site are the three best things that have happened for me with my ckd.

Had I not asked for the nephrologist referral and persisted in requesting the dietitian referral, I am certain that I wouldn't have learned of the stage 3 diagnosis and that my ckd labs would not have shown the improvement they have. After three appts with the nephrologist, I will be changing to another nephrologist because other than telling me at the first visit to stop NSAIDS and take Tylenol instead for over-the-counter pain relief, she has provided almost no instruction on how to better maintain my kidney function. Becoming informed through research online from reputable sites like Mayo and NKF and membership in the patient groups has helped me become a much more proactive patient advocate for this serious health condition. Wishing you the best and hope you'll let us know how your next doc visit goes.