Aurelie V.P.

Teenager, FSGS

It was my first semester of freshmen year at college, fall 2015. I was away from all of my family and friends. One day, I noticed my feet and ankles were extremely swollen to the point where I could barely move my toes. To me, this was extremely surprising, since I was in decently good shape and played both soccer and lacrosse throughout high school. I went to the health services on campus, where they told me to go to the 24-hour urgent care nearby. After about four hours there and multiple blood tests, they told me I was okay to go back to my dorm.

Three days went by, and the swelling had only gotten worse. I had gained about 25 pounds in about a week. I went back to the urgent care, and after about three hours they transported me to the local hospital. Four days in the hospital all alone as an 18-year-old was pretty scary. I had no idea what was going on with me. They had done almost every test possible, and they still weren’t sure what was wrong other than seeing an extremely high amount of protein in my urine. I had gotten a biopsy done of my kidneys, and they sent me back to my dorm.

A few days went by and the local nephrologist called me with the results. He diagnosed me with Nephritic Syndrome and Minimal Change Disease. I was put on 60 mg a day of Prednisone, along with other diuretics and medications for the pain. A few weeks went by and the swelling went down, but the side effects from the steroids were awful. But I figured it was the only way to get better.

After a month on the Prednisone, the swelling started to come back. I had gotten more blood work done when my nephrologist called me, saying that they misdiagnosed me. Now, I have FSGS. They told me I had become immune to the steroids, so they put me on Cyclosporine. The swelling had gotten so bad that the skin on my stomach had ripped open. I was in so much pain that everyday tasks were unbearable. I couldn’t sleep at night and even clothing hurt my skin.

Two weeks went by, and the swelling got better. I went home for Christmas break to find out that my mom forgot to renew my health insurance, so I had to reapply. They told me this would take a few months. Well, I didn’t have a few months; a few days before Christmas, I was in so much pain I had to go back to the hospital. I found out that from when my skin ripped open and all of my medications suppressed my immune system, I had gotten an infection. I was put on antibiotics and seemed to get better, until a week later the swelling started to come back in my feet and ankles.

I feel a little hopeless now with no health insurance and no answers. We are still trying to find the proper treatment for me, but I continue to keep my head up. I still am going to school and doing my best to get through this, day by day.