Fibrillary glomerulonephritis
I was just diagnosed with fibrillary glomerulonephritis. I have an appointment the 27 at the mayo clinic in Scottsdale. Has anyone ever been diagnosed with this. Would like info. It says stage 3 kidney disease on my paperwork
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@jennifer208 You have several people from here sitting in your corner, rooting you on! Let us know how else we can support you?
Ginger
@jennifer208, I want to drop in for a short virtual visit because it has been a while since we've heard from you. How did your consult go with the hematologist? What have the doctors suggested as your next step in developing a possible care plan for you?
I got my bone marrow biopsy today. Will know in about a week
@jennifer208, I am thinking about you today. And I hope that this is the beginning of finding answers and a treatment plan.
@jennifer208 Gently distract yourself while waiting. It can be so hard, can't it? What do you have in your plans for this week of waiting? Anything interesting or fun?
Ginger
Thank you.
Ok sorry I haven't checked in. So my bone marrow biopsy came back negative. Great news. Bad thing is now we will probably never know why I got this. But I think I told everyone I was flying to Atlanta Georgia to see a doctor there about a clinical study trial. Well. Good news I got accepted. So next month I fly to Atlanta Georgia again to get my first treatment. I'm so excited. I really like this doctor and I believe it's going to be great. Now with that being said. All that's happening right now I'm praying they don't ground all flights. I need this.
@jennifer208 That is great news. I hope that things can proceed and that you will be able to go to Atlanta to participate in the clinical study. At this point, who knows what safety practices we will need to be practicing then, but if there are flight restrictions, is it possible that the clinical trial will be postponed?
JK
I don't know. But I hope not.
I finished another 2 rounds of Rituxin last week and feel so much better. Function is up from 17 to 24. Call your insurance company and push for this if you can! My insurance approved after recommendation from Mayo.