Are you ready to learn about a new disease? I know you are!
Dr. Leung (pronounced "learn" btw) thinks I have something called Fibrillary Glomerulonephritis. It is a rare kidney disease characterized by fibril deposits in the kidneys. He does NOT think this is amyloidosis. So that's good! But fibrillary glomerulonephritis is no walk in the park, either. Again, it's rare - only 1 percent of kidney biopsies have this result. There is no cure and no proven treatment and most cases advance to renal failure within a few years. Dr. Leung is still working with the pathologist on one more thing - and he's suggesting that UM stain 2 of my prior biopsies for amyloid just to rule it out completely. But it's looking like i have fibrillary glomerulonephritis and will start treatment with a month of chemo (rituximab - a drug used to treat lymphoma). It's delivered via infusion.
I go to UM on Tuesday, Oct. 1 and will know more then.
Hard to believe that I'm feeling happy about needing chemo and the high chance that i'll need dialysis - but compared to the amyloidosis it sounds pretty good!! Ha. Life is funny.
Thanks everyone for your continued support and prayers. I still have a fight on my hands, but now I think I know the enemy.