PKD Life - Summer 2022 - 16

" Figure
out a good
process and
stick to it. "
The Garrott family:
Matt, Carolyn, and
William.
4 months old. Unfortunately, he came
down with an infection four months
after that, so his remaining kidney had
to be removed as well. We spent that
Christmas learning how to perform daily
peritoneal dialysis, which would act in
place of his kidneys until William was
big enough for a transplant.
We all went through testing, and while
My best advice:
Figure out a good
process and stick to it.
It was essential for inhome
dialysis, where
there's a specific order
you need to do things
in. These days, William
is in charge of taking
his own medicine
every day. It's part of his
morning routine before
school, then he has a
pillbox on the counter
to remind him to take
his evening pills every
night before bed.
WILLIAM'S STORY
Carolyn Garrott, Avon Lake, Ohio
My pregnancy was completely normal
until my 38th week, when my doctor
found I had no amniotic fluid. They sent
me straight to the hospital, and doctors
could tell there was something wrong
with the baby's kidneys. Our son, William,
was born the next day and was
immediately whisked off to the NICU.
Within a few hours, the nephrologist and
the NICU physician came to my room
and said, " We think your baby has a condition
called ARPKD. "
We'd never heard of ARPKD, so they
had to explain it to us. They refused to
give us any odds but said that they would
do everything they could for William.
And, they added, it was up to him how
much fight he had in him. We brought
him home after about a month, but his
kidneys were so enlarged, he struggled
to eat and even to breathe. So doctors
took out one of his kidneys when he was
16 PKD LIFE * SUMMER 2022
I have a noncompatible blood type, my
husband, Matthew, was a nearly perfect
match. After several screenings and
dozens of vials of blood, an imaging test
showed that Matthew had extra arteries
leading to his kidneys and William's little
body would be unable to handle them.
We were heartbroken.
William was put on the transplant list,
and after some false starts, he received a
kidney one week after his second birthday.
The kidney transplant made a huge
difference for all of us. William was able
to pee on his own! No more dialysis, and
he finally had an appetite. Doctors have
assured us that if William needs another
kidney when he's older, Matt can be
his donor.
Today, William is an energetic 12-yearold
boy who's into cars and trucks and
roughhousing. He's also an avid reader.
William has to take a half-dozen pills
every day, but that doesn't stop him from
hamming it up or singing at the top of
his lungs when a song he loves comes on
the radio.
PKD Life - Summer 2022

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