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Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?
Kidney & Bladder | Last Active: 4 days ago | Replies (110)Comment receiving replies
@katiekind Welcome to Mayo Clinic Connect!
Yes, I am indeed still around. The cause of my kidney disease is Type III Collagenofibrotic Glomerulopathy. There is a fibrinous collagen buildup in the filtering components of my kidneys, essentially and eventually shutting them down. There have been less than 50 people diagnosed with this condition. At this time I am on daily dialysis, as of September 2022.
Autoimmune disorders are difficult to pin down, as they seem to mimic several conditions. Has your loved one been able to get to Mayo Clinic, or a large teaching hospital, for help? I know it can be frustrating to get it figured out. Keeping a journal of symptoms helps the medical team to narrow things down, I found out.
Ginger
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Thank you so much for responding!!
I will look into this and see if it could be a match or if it leads me to a new pathway of research. I'm so sorry to hear that you are on dialysis, and yes figuring out which autoimmune condition he has, has been extremely difficult. He has not been able to go to the Mayo Clinic yet but im remaining hopeful. We are definitely keeping a journal and marking down all symptoms since there are so many of them! Thank you so much for your help!