I have been part of kidney discussions here for a few years now so I am surprised to just be seeing this thread today. I am not seeing some of my experience here so I thought I'd share. The short version is that I am very fortunate that my health care providers have been very proactive and the chronic kidney disorder they discovered has been mostly been put under control.

Long version: My primary care medical professional, a PA, referred me to a nephrologist after looking at annual tests she'd ordered ahead of a routine physical exam I had when I was 68. She noted that my creatinine had been slowly rising for a few years and was now approaching 1.0. It took a few months and many tests for him to sort out what was wrong. A kidney biopsy was the turning point.

My biopsy was evaluated at my clinic's lab but then sent on to Hennepin County Medical Center for further testing. That lab forwarded my biopsy to the lab at Rochester Mayo's Nephrology and Hypertension Department where a pathologist (who happened to have published on the disorder she found) concluded that I have a rare disorder called immunotactoid glomerulopathy (ITG). I started reading the medical literature (I have still have access via the library at my old job) and learned that there are three types of ITG. Seventy percent of ITG patients also have lymphoma and 30 percent also have myeloma. So this is an immune system malfunction. My immune system was producing what I surmise are non-usable immunoglobulin G and lambda sidechains which end up being deposited on my kidneys (the pathologist used electromicroscopy to see these unique deposits). The deposits physically block my kidneys from being able to filter waste. They seem to be permanently attached or replaced as fast as they are displaced.

The hematologist I saw next had me tested for both lymphoma and myeloma and found no evidence that I have either one. (That result means I am one of about ten people in the world known to have idiopathic ITG--I've met three of the others through the ITG Facebook page.) I think he decided that just in case these results were false, he'd recommend I have treatment for lymphoma (since more ITG patients have that) with Rituxan--which failed to slow the progress of the ITG. Next, I was treated with Velcade/dexamethasone, which I found to be a common first treatment for myeloma.

My creatinine improved but the other troubling symptom, raging proteinuria is still problematic. Unfortunately, I developed peripheral neuropathy from the Velcade so that treatment was halted. I have been monitored now for almost three years. My numbers have slowly worsened so I am thinking treatment with a newer anti-myeloma med is likely to be recommended at my next appointments.

I believe that I have benefitted from aggressive evaluation and treatment, while I was in Stage 2, after my primary noted rising creatinine and referred me to nephrology. BTW, I am now also seen by a Mayo nephrologist who has published on ITG with the pathologist in his department who diagnosed my kidney problem.

My local nephrologist puts me at Stage2/3A since I don't easily fall in either category.