Our Stories

Rachelle's Story

It was the year 1990, I was 19 and had just finished my first year at San Diego State. I came home for the summer and was attending summer school classes in the morning and working as a waitress in an Italian restaurant at night.

I remember vividly being in my sociology class and glancing down at my feet that were bulging out of my penny loafers. I knew now that I had some major edema going on.

I went to my then primary doctor who proceeded to do basic tests, such as blood work and a urine sample. She discovered that I was dumping mass quantities of protein into my urine and referred me to a nephrologist, who scheduled me for a biopsy.

You might as well of told me I was going to have a labotomy. I had never been in the hospital for as little as stitches so to say the least I was FREAKED OUT!

After the biopsy I was diagnosed with Minimal Change Disease and was told it could be cured with a series of drugs. 

I was in major denial and all I cared about was going back to college in San Diego. I barely made it through the semester and came home at Christmas time. 

I wasn't getting any better and the drugs weren't helping. I was biopsied again that summer and found out I was misdiagnosed originally and that now I had FSGS.

I saw a couple specialists and the verdict was I would lose my kidneys in two to five years. They failed with in two years, two weeks after my 21st birthday.

I received my first dialysis treatments in the hospital and they removed 21 pounds of fluid in two days. I had a bilateral nephrectimy a month later and six weeks after that I had my first kidney transplant. My dad was the donor.

They removed that kidney after three months because the FSGS had reoccurred and had aggressively attacked the new kidney. 

There are no words to describe the disappointment and sadness. I was so ignorant to what was actually happening to me and when I reflect back to that time I know now how bliss ignorance is.

Since then I've had two more kidney transplants (cadaver) and the disease FSGS has reoccurred in them as well.

It's been 19 years this May that I've been on some form of dialysis. It's been quite a journey and it is far from over. I currently work part time as a bookkeeper and live with my husband. I'm on the transplant list, but inactive status.

Donation in Honor of Rachelle

Share your Story
Your story could provide support and information to many patients and their families. If you would like to share your story, email NephCure at info@NephCure.org.

By submitting your story you agree to allow NephCure to share your information and photo for marketing and promotional purposes.