PKD Life - Spring 2020 - 14

MY PKD LIFE

Dreaming

BIG

I won't let my PKD stop me
from living life to the fullest.

By Topher Nuzzo,
as told to Leslie Pepper

n my family, PKD goes back at least five generations. My great-great-grandfather and
my great-grandfather both died very young
of the disease, and my grandmother had a
kidney transplant before I was born. My mother
has PKD as well.
I remember one night when I was about 10
years old, she collapsed while we were having
dinner. We later found out she was in renal failure and her kidneys were so large that they had
to be removed. She went on dialysis, and within
about nine months she had a transplant.
I knew from an early age that there was a
good possibility I would get the disease. It really
didn't bother me. It was just something that my
family dealt with.

PHOTOGRAPHY BY GUERIN BLASK

GETTING TESTED

Growing up, every once in a while I'd get pains
in my back, but I didn't necessarily attribute it to
the disease. It could have been due to anything.
Because of my strong family history, I wanted
to find out sooner rather than later, so that if I
did have PKD, I could do everything I could to
prevent its progression. So about three years
ago, when I was 19, I decided it was time to
get tested.
I took my mom with me to the ultrasound,
and as she sat down, her eyes locked on the
video screen. The technician doesn't tell you
any results-they send the report to the doctor,

PKD LIFE * SPRING 2020

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3/23/20 11:53 AM

PKD Life - Spring 2020

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