Living with FSGS
Last updated: April 2023
I was first diagnosed with minimal change disease (MCD) and, 3 years and 3 biopsies later, they finally diagnosed me with focal segmental glomerulosclerosis (FSGS). This is a rare incurable chronic kidney disease (CKD). When I first got sick, I had retained over 60 pounds of fluid. I looked like the Michelin tire man. I was taking 24 different medications, one of which was steroids. The steroids were the worst. Between the metal taste in my mouth, to the personality changes, and then they discovered I was steroid-resistant. I’ll never take this drug again.
Navigating daily life with FSGS, a chronic kidney disease
Being self-employed and single, I had to work, which was a daily struggle. Learning to live with this disease has been a battle mentally, physically, and financially. Every day is different. Some are good while others are not.
Is exercise an important part of your CKD management?