ES 
EN 
I was diagnosed in 2018, after thinking I had the flu. I went to the hospital—kidney function was very low. They thought I was dehydrated, pumped me full of saline, and my function did not improve.
I gained 40ish pounds of water weight in 24 hours. I was in the hospital for 2 weeks, full kidney failure, absolutely oblivious. I walked 4 miles a day and worked while in the hospital.
I became my own advocate and manager of my own health.
Luckily, my kidney failure was acute. I was put on high-dose prednisone and released.
I relapsed on taper down 5 months later. Back up on high-dose prednisone—added tacrolimus, based on my own research.
I switched to an academic hospital/nephrologist who is an FSGS/MCD specialist. Game changer. A doctor who listens to me and partners with me.
I had significant side effects from prednisone, but also “accepting my disease.” Once I switched to my nephrologist—who was real with me—that was my turning point.
I became my own advocate and manager of my own health. I learned all I could, and instead of resisting my disease, I accepted it.
I’ve had 4 relapses. At diagnosis and initial relapse, I was spilling 10–11 grams. I’ve caught my last 2 relapses early and make my own recommendations to my nephrologist.
I advocate as much as I can. I truly believe knowledge is power.
I live my life with more intent and purpose. Life is too short to waste on those who aren’t in your court.
