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Replies to "Hello. I recently had a radical nephrectomy due to a large beginning cyst. My egfr went..."
Kidney & Bladder | Last Active: 1 day ago | Replies (23)
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Replies to "Hello. I recently had a radical nephrectomy due to a large beginning cyst. My egfr went..."
@cl2020 Definitely wait to hear what your nephrologist has to say, please! You can ask to be placed on a cancellation list, so their office can contact you if an opening comes up sooner than February. A gp doesn't have the specialized training that I feel is required to speak confidently about Kidney concerns.
My Lupus was diagnosed in 1988, and I recall it being a drawn-out process to get there. First one set of tests, then the next set based on those results, and so forth. Right from the get-go, they were doing 24 hour urine collections, always finding high protein levels. But they never went further in getting to the source of it. Always chalking it up to the Lupus. Back in 1999 or 2000 a doctor said "might have to do a kidney biopsy to see if the continued high protein is the result of kidney involvement from the Lupus", but they never did. And, I wasn't advocating for myself as strenuously as I do now.
In the early 2000s I was placed on high blood pressure meds, and kidney function started to decline. Since uncontrolled high blood pressure is one of the leading causes of CKD, there was no further thought to that, still no correlation to Lupus, protein in urine, etc. Over the course of decades I have had a variety of providers based on where I was living. Is it their fault? Should I have grabbed my case as needing more attention? We'll never know. It feels like I may have been a victim of a medical community who basically took the easy way out, using an HMO system that didn't want to go the extra steps to see what was really going on, until it might have been too late.
Stay on top of your own situation. Ask questions, demand educated answers. For today, take time to write out your concerns, your fears. Sit with a cup of tea or coffee, and a couple of cookies. Take a deep breath, and remind yourself, "I got this!"
Ginger