I am 54 years old and have recently been placed on the transplant list. My current GFR is 17, and I have secondary FSGS as a result of only having one kidney (congenital absence). I first noticed evidence of FSGS when I was 24 years old. At that time, my doctor tested my uric acid, but he didn’t believe the crazy high results with no gout attacks, believing it to be a false positive. I changed doctors when I was 28, and the new one insisted on sending me for further testing. I found out I only had one kidney at that time.
Eventually, I had an open biopsy. My nephrologist was in Toronto, and he sent samples from my biopsy to pathologists in Canada, as well as three in the U.S. Only one doctor, who was based in California, recognized it, calling it “focal sclerosis.” No one had heard of it no matter how hard I tried to seek information. Sometime in the ’90s, FSGS became the accepted term. Sadly, it seems to be getting more and more common.
I am lucky because I experience very few side effects even now. Other than being tired and a little foggy sometimes, I don’t have the pain or swelling that so many other FSGS patients suffer with.
Three people have volunteered to donate their kidney, so hopefully one will match and this chapter will be resolved shortly. I must admit, I stress over this. I pretend I am all chill, but I am waking up with my jaws clenched every morning, which gives me headaches. I try to do fairly vigorous exercise to offset the stress.
Nineteen years ago I married a wonderful man — Tim. We do not have kids, as the medical understanding at the time was that I would not be able to carry kids. We do borrow other people’s kids (we have had 13 live with us over the last 11 years), but that is a story for a different forum! Tim is a scientist and I am a middle school ESL teacher. We now live in eastern Washington state with our sweet golden/husky princess, Belle.