Hi, my name is Tricia. My story begins in 1999 at age nine. Little did I know that swollen eyes and a distended stomach would strip my healthy life away from me.
I had been on a Girl Scout trip. I did not feel well and when I got home my parents took one look at me and the next thing I knew we were being met by a nephrologist at Children’s Hospital L. A. I spent five days in the hospital leaking protein and feeling like I had doubled in size.
That was the beginning of the urine checks, needles, IV’s, blood tests and so many different drugs. This Idiopathic kidney disease called Nephrotic Syndrome changed my carefree life into a scary dream.
I was on Prednisone and Lasix for over a year, then I became steroid dependent and could not be weaned off without relapsing. Prednisone was a wonder drug because it worked, yet I was so hungry! I craved macaroni and cheese and curly fries. The side effects were horrible, and I didn’t even look like myself.
Near my 10th birthday I was put on Cytoxan, a chemotherapy drug for 10 weeks. It made me nauseated and tired. I was in remission for three weeks, before leaking protein again.
A renal biopsy was preformed in 2001. At that point I had gained seven pounds in three weeks, and my cholesterol and blood pressure were off the charts.
After the biopsy, my diagnosis was changed to Nephrotic Syndrome FSGS.
Neoral and Prednisone were the next drugs I took, I was taking over 14 pills a day. The side effects of Neoral were brutal. I called them, “skunk pills” because they smelled so bad! And the thought that this drug could cause cancer was something I couldn’t believe.
This was a traumatic year and a half. I did achieve remission after stopping Neoral; but it only lasted for only four months! I was in the 6th grade at that time and I overheard a kid call me “the steroid girl!”
After that short remission my Nephrotic Syndrome FSGS came back with a vengeance. I started leaking protein again and my edema was out of control.
The summer before 7th grade I was put on 1000mg a day of Cellcept along with Prednisone and Lasix.
I was on Cellcept for two years and was weaned off of Prednisone without leaking any protein! The summer before high school I was weaned off Cellcept. That same time my hormones changed, and I was finally off all those horrible drugs!
During high school I was doing quite well, but the damage done to my kidneys by the Neoral had raised my blood pressure. Now I have to be on Lisinopril to control my blood pressure. But there is a happy ending to my story.
I am finally in remission. Currently a junior in college about to turn 21 and I feel very blessed. I eat healthy, control my sodium intake, exercise and get plenty of rest. I got through it all with the help of my wonderful family and friends and now because of my Nephrotic Syndrome FSGS, my sister Renee and her husband Kurt Suzuki are now ambassadors for NephCure!
I just hope that anyone who is diagnosed with Nephrotic Syndrome /FSGS can find the help they need through NephCure. So we can all work together to reach out to other families who are dealing with these same issues. Since finding families is paramount to getting awareness plus increased government and other funding for research; so we together with NephCure can find a cure for Nephrotic Syndrome/ FSGS and all devastating kidney diseases.
story/image source: nephcure.org