Adult, FSGS with C1q Nephropathy

My name is Leah and I’m 31 years old. I started having foamy urine (apparently this was because I had proteinuria) in November 2013. I did not think much of it at first; however, I figured I would get it checked out when I saw my doctor next.

However, in December, I started to notice swelling in my ankles. I thought it was odd because I had never had swollen ankles or legs before.

Before I could get to the doctor, I got the H1N1 flu that left me sick and dehydrated. I ended up having to go to the emergency room for fluids. After I recovered from that, I caught bronchitis. I have asthma so that made it even worse. It was a very rough month.

At the time, my doctor said he would do blood work, but I could not see a nephrologist for at least a month.

I live about 50 miles away from St. Louis, so I decided to go to the emergency room at Barnes Jewish Hospital. I waited for six hours before seeing a doctor. My eGFR was in the 30s and I was really swollen. They sent me home with an appointment to see a specialist within two weeks. I had a lot of blood work done as well as a urinalysis.

I was diagnosed with Nephrotic Syndrome, so the doctors decided to do a kidney biopsy. The results came back  as FSGS/C1q Nephropathy. I was told that this is a very rare kidney disease. I could not find much on the internet, and most of those who do have it are children. I would be very interested in connecting with others that have this diagnosis.

At the moment, I am taking blood pressure and cholesterol medications for the Nephrotic Syndrome. I am also taking 60 mg of Prednisone every day. The side effects really stink; I am constantly hungry, irritable, and shaky. I also have trouble sleeping. The swelling has gone down. I have to go back for more blood work and another urinalysis to see if the protein in my urine has decreased at the end of March.

I am just taking it one day at a time, but it has been difficult to stay employed full time.