Susan F.

Adult, Nephrotic Syndrome

May 6, 2020, marks the 37th anniversary of the day I walked into the doctor’s office because I had swollen ankles. I was diagnosed with Nephrotic Syndrome. I had never heard of Nephrotic Syndrome. I was 27 years old. I was sent to the University of California San Francisco Medical Center for a biopsy. My case was termed “idiopathic.” I was put on Prednisone and sent back to work six weeks later.

Soon afterward, I started to swell significantly. I could not bend my legs, wear shoes, and could barely bend my body to sit on the toilet seat. My face was very swollen upon rising in the morning. I gained a tremendous amount of weight over a short period of time. I was sent home from work (that last day I wore slippers). I was put on a much larger dosage of Prednisone, and took another medical leave. I cannot remember exactly how far I was into the large dosage when I woke up in the middle of the night and went to the bathroom. The following morning, I stepped on the scale and it showed a six pound loss. Something miraculous was happening, I thought, and it was.

I started to lose weight daily. Of course it was “water weight.” I lost so much weight that the doctors and nurses at UCSF had trouble recognizing me. I returned to work in September 1983. I continued to have frequent appointments at UCSF. I began the weaning process with Prednisone. I would, however, start to relapse at lower dosages. The relapsing would continue until the Spring of 1987. I was doing 24-hour urine collections as I had first done in May 1983. Dealing with Nephrotic Syndrome was difficult enough. I had a very hard time with the Prednisone. I was euphoric in the early stages of taking it. As I was weaned off the drug, the euphoria left, and I was depressed and anxious. When I look back I believe that my main battle was weaning off the drug. I had to wean off by extremely small increments. Increments that took me almost four years.

After quite a few normal test results and the discontinuation of the Prednisone, I received a call from my doctor in the Spring of 1987. I had passed the corner, so to speak. I remember his words to me: “it could be that it’s just over.” I still remember that phone call all these years later. From the moment of that phone call, I have never had a recurrence of the disease. For many, many years afterward, I would “check” my ankles to see if they looked swollen. I don’t do that anymore. I met my future husband a few weeks after that phone call. And the rest is history! I turned 64 years old last November.