Fibrillary Glomerulopathy. That's the name of my "firm diagnosis" of a very rare kidney disease.
Dr. has seen it 3 times himself, and between he and the 23 other nephrologists, they see it about once every 2-3 years. Apparently, there is no treatment course that has been successful in putting the disease in remission, so for right now, we're doing nothing. Because the swelling in my feet/legs has been minimal and because the steroids have so many nasty side effects and don't seem to work for this particular kidney disease anyway, we're just going to go back in 2 months and see what my bloodwork says. We just have to pray for no decline in kidney function (none so far), because this can cause kidney failure in a relatively short amount of time - just a few years. On the bright side, it could go away, too...they just don't know enough about it to give me my odds of going either way... another bright side is that I've lost another 13 lbs, which brings me to a total loss thus far of 40... AND another bright side is that my blood pressure, even before I took a Xanax, was 124/77 - and that was before he came into the room, so that's pretty good! See all the bright sides? I'm trying to!! He said that continuing to lose weight can only be good for this, but to be careful to not STOP eating. Also, suggested I need to see a therapist for my anxiety disorder. GEE, Ya think?
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