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Why is CKD Stage 3A downplayed? Am I over reacting to be concerned?
Chronic Kidney Disease (CKD) | Last Active: 15 hours ago | Replies (37)Comment receiving replies
@kayabbott I’m at 3b now and yes, it’s seems I’ve been the only one concerned. My last Nephrology appointment my doc told me that I am shedding Phosphorus and my calcium is on the low end. She ran a FGF test (Fibroblast Growth Factors) which was extremely high at 280. This means my parathyroid gland is working overtime pulling calcium from my bones to keep a normal level. She said she was baffled by the results. Now she is doing something she said she has never done because it’s so rare. She is ordering a full body PET scan to look for a BENIGN “Brown tumor”. A tumor that can attach to bone anywhere in the body and suck out the calcium. The tumor itself is benign, but can become life threatening due to bone loss and calcium deficiency. She has never seen it before but is a last ditch effort to figure out what’s happening.
But now I wait. It will take months to get the scan booked, after my referral rises to the top of the pile… IF my insurance company approves it.
Sigh, our healthcare system is so broken. Wait times for procedures rivals that of Europe, but their healthcare is free, we pay billions to wait.
Terri
Replies to "@kayabbott I’m at 3b now and yes, it’s seems I’ve been the only one concerned. My..."
@rocksology I agree completely. I am 83 year old male at stage 3b. My eGFR holding steady at 39. I had a PET scan 4 months ago at Oncologists recomendation. These are not all that uncommon. Is basically a full body scan with radioisotope to expose tumors, both benign and malignant. Mine took 3 months to schedule and was covered by my insurance (Medicare+BC/BS). Yes, getting any medical appointment, even with PCP, take a long time. Medical care in US is as bad or worse than Europe/Canada and far more expensive.
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@rocksology A PET scan would be good, particularly if decalcification is due to bone lesions or other nasty things that ramp up calcium in bloodwork. An orthopedic doctor could also help with reasons for the high calcium, especially if associated with osteopenia or osteoporosis (reversable now with meds and exercise). My Ca, K, Na, and phosphorous levels are all normal, but I avoid foods high in these elements. The renal diet is a bit of a pain, but important. Check with your doc to see if a SGLT2 inhibitor such as Jardiance would be useful; they don't seem to improve eGFR numbers when they are less than 45, but mine did drop my systolic BP a lot (it was OK before, but relaxed blood vessels and kidney tubules are supposed to slow CKD progression).