Living with FSGS

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.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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