Living with Nephrotic Syndrome (NS)

I had just started my freshman year of college. I am an very active person and started to notice that I was very fatigued. I also noticed that my legs were really heavy and tight. I was gaining weight, but just put it off thinking it was part of the “freshman fifteen”.

However, when I went home for Christmas break my eyes and face started to swell and get really puffy. My mom thought it was me just getting used to the wood stove that we have in our house. I was a little more skeptical at this point. I tried to continue to cross-country ski (my main sport), but it was becoming SO hard…not that it isn’t hard to begin with.

Anyway, I went to the doctor in my small town, and they just diagnosed me with poly cystic ovarian syndrome and told me that was why I was gaining the weight. Well, then I went back to school, and my teachers and friends started to make comments to me about my appearance. They would ask me if I was in a car accident because my face was so swelled up. I realized that I had gained twenty pounds over break, even though I had eaten barely anything.

I remember crying to my mother on the phone that I didn’t want to go to class because I felt so fat and ugly. None of my class fit, and my legs hurt like crazy. Finally, one of my anatomy professors took action and somehow I wound up at a kidney doctor.

At this point I couldn’t tie my shoes or fit my feet in my ski boots because everything was so edemous. I had gained about 45 pounds at this point. The doctor took one look and me, and he suspected nephrotic syndrome right away. However, I had to live through the agony for another week until I could have a kidney biopsy to diagnose it for sure.

My parents were quite worried at this point. My protein ratio in my urine was 11.5, my blood pressure was really high, and my cholesterol was 795!! As soon as the diagnosis was confirmed I was started on high dose prednisone, a diuretic, an ACE inhibitor, a cholesterol lowering drug, + many other protective drugs.

After 2 weeks I was feeling great! I lost 40 pounds over that time! However, then the nasty side effects of high dose steroids set in. Every week my protein count would go down, but my face seemed to be getting bigger and bigger by the day. A

s of today, I am in remission, and I have been tapering off the drug. I have 2 more doses to take and then I hope to never touch the nasty stuff again. It is has been a year since this whole ordeal started, and it has been the worst year of my life. I can’t wait until I turn twenty so that I can feel like I am starting over. Good luck to all that have this condition!