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DiscussionNewly diagnosed with CKD (Chronic Kidney Disease) and terrified
Kidney & Bladder | Last Active: Apr 9 10:49am | Replies (77)Comment receiving replies
Replies to "@gingerw how were you diagnosed? I have a high ANA and high scleroderma antibodies but docs..."
@windyshores For years the high protein levels in my urine were thought to be caused by systemic lupus, which I was diagnosed with in 1988. No one questioned it, no one investigated further, until 2012 when I saw a new nephrologist who was more up-to-date with different conditions, and had an interest in my case. He recognized there were other values that seemed to contradict the theory of SLE as a culprit, and suggested a kidney biopsy. That was done, and the pathology was sent to Keck USC in Los Angeles, with a confirming pathology done by Cedars Sinai in Los Angeles. This condition was first recognized officially in 1996, and their departments had read case studies, but had never seen an actual case! They were very excited, to say the least. This diagnosis was reconfirmed in 2019 with another kidney biopsy.
I have been followed closely since then, and went on dialysis as of Sept 2022. I followed a good renal diet long before the drs suggested it, starting back in 2005 or so. In my case, I believe it helped hold off the inevitable decline in function. For me, there is the need to push protein also, as dialysis depletes that [especially peritoneal].
Ginger