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. My sister made the
decision to become a living donor, and on January 22, 2008, saved our mother’s
life by donating her kidney to our mom.
I’ve had it a little easier than my mom and uncle. My parents found out I too had
the disease when I was 10 years old. Growing up I was monitored regularly to
make sure my kidneys were functioning as best they could. In my 20s, my kidney
function started to get worse and I was given weekly injections. In my 30s, I
started to get gout flare-ups in my foot. It started out as once a year, but the
older I got, the more frequent the flare-ups became. In 2021, after getting flare-
ups about four times a year, I started medication which has helped immensely
and I have been pain free ever since. My progression has been a slow one, but I
am now in stage 4 kidney failure, with 15% kidney function. I am still fortunate
that I am able to live a healthy life, despite knowing in the near future, I too will
need a transplant.
When my twins were born in 2007, I knew right away that my daughter carried
the same gene that caused our disease. They did bloodwork, and unfortunately I
was right. When she was two years old, her nephrologist asked for bloodwork
from her twin brother, myself, 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. We 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 daughter be in
stage 4 CKD? Why were her numbers worse than mine? Nobody had answers. 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!
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