Why We Walk

Chronic kidney disease (CKD) has affected my family for several generations, starting with my grandfather, who at 56, was denied dialysis because he was told he was too old. The disease was passed down to my mother and my uncle. They were both very sick growing up and were hospitalized for weeks and sometimes months at a time.

As an adult, my uncle was on dialysis for 7 years before he was able to get a cadaver kidney, which gave him back his quality of life. He lived with the kidney for 22 years before his unfortunate passing in 2018. In her mid-50s, my mother was at the point where she was going to need to start dialysis. I made the decision to become a living donor, and on January 22, 2008, and donated a kidney to my mom.

My parents found out that my sister had the disease as well when she was 10 years old. Growing up she was monitored regularly to make sure her kidneys were functioning as best they could. In her 20s, her kidney function started to get worse and she was given weekly injections. In her 30s, she started to get gout flare-ups in her foot. It started out as once a year, but the older she got, the more frequent the flare-ups became. In 2021, after getting flare-ups about four times a year, my sister started medication which has helped immensely and she has been pain free ever since. Her progression has been a slow one, but she is now in stage 4 kidney failure, with 15% kidney function. Fortunately, she is still able to live a healthy life, despite knowing in the near future, she too will need a transplant.

When my niece and nephew were born in 2007, my sister knew right away that my niece carried the same gene that caused our disease. They did bloodwork, and unfortunately, she was right. When she was two years old, her nephrologist asked for bloodwork from her twin brother, mother, my mother, and my uncle. He then sent it out to be tested to find out exactly what the disease was all about. Luckily with modern technology, he was able to pinpoint the genetic mutation, but at this point, there was nothing could be done for her. They just brought her back for yearly checkups to monitor how the disease was progressing. In April of 2022, things started to change. Her bloodwork was not good, and the doctor told us she was in stage 4 kidney failure. Our hearts dropped. How could my 14 year old niece be in stage 4 CKD? Why were her numbers worse than my sisters? We were told that there’s no reason for it, we just have to be mindful and bring her for check-ups every 3-4 months. Her doctor started her on four different medications, three that she takes daily. A pill, a powder, a liquid, and a weekly injection. You wouldn’t know by looking that anything is wrong with her. She looks like a healthy and active teenager and we hope she stays that way for a long time. 

We don’t know what the future holds, but we do know that every penny that we raise goes to fund research to help find a cure for chronic kidney disease for my family and the hundreds of thousands of other people who are diagnosed with CKD yearly. Please help us reach our goal and remember, if you are able to, share your spare!