I've finally learned how to spell fibrillary glomerulonephritis without referring to my medical paperwork. Now I need to learn how to pronounce it, because that is my diagnosis.
WHAT I KNOW:
1. Every online entry I've found about the disease includes this line: "Fibrillary glomerulonephritis is a rare disease with poor renal prognosis."
2. How rare? It only shows up on .05 - 1.0 percent of kidney biopsies.
3. There is no known treatment.
WHAT COMES NEXT:
UM and Mayo have recommended trying treatment with Rituximab, a lymphoma drug. UM has requested pre-authorization from my insurance company and we're now in wait-and-see mode.
HOW I FEEL ABOUT THIS DIAGNOSIS:
While I'm relieved that this is not amyloidosis, I'm also struggling with the reality of having a rare disease that I can't pronounce and no one understands. My health situation is exacerbating a deeper issue: feeling different. Remember the Sesame Street "one of these things is not like the other" skit? Yep. That's me. I'm the W on a chalkboard full of 2s. I've always felt out of place -- at jobs, on teams and even in my own family. And now I feel like I don't even fit in within the world of kidney disease patients. So far I've found one person to talk to -- a very nice 64-year-old woman in Florida with fibrillary glomerulonephritis who has been kind enough to answer my questions over email. For that, I am grateful. She has helped me realize that others have faced this disease and that I can, too.
I found another W.
1. So glad you found someone to connect with who can relate.
ReplyDelete2. I can't believe you found this video. Who keeps this stuff and puts in on youtube anyway?
Miss you Darc!
You are wonderful, Darcy, and we love you very much! (and wonderful is a w word!).
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