Never biopsied for IgA Nephropathy

[Kbristow]

About 8 years go when I was on the kidney wait list, doctors thought I had IgA Nephropathy. But my kidney function was so far gone (GFR 15) that they didn't bother to biopsy it because it wasn't going to change the fact that I needed a kidney. I was fortunate to receive a living donor kidney, and have been fine ever since.

Wondering who else out there was told you likely have IgAN but never biopsied. Why and why not according to your doctor? I understand that it is often a slow-acting disease and it may or may not damage my transplanted kidney. My doctors are watching my creatinine which has been stable in the six years I've been transplanted. But am I watching out for the same symptoms? foamy, dark urine? high blood pressure? proteinuria? I'm very curious if I have IgAN or not and wondering if there is a benefit to know.

[horsie63]

Is it genetic? Could you have a gene test to rule it out? My retinitis pigmentosa and Sensio neural hearing loss is genetic that may have caused my kidney failure according to some pubmed articles on my particular genetic disease. Not something that showed up in the biopsy as it is mychondrial.