PKD Life - Summer 2022 - 15

PHOTOGRAPHY BY RYAN WENDLER
" She's like
any normal,
healthy kid-
just one who
has to go to the
doctor more
often than
most. "
The Reni family:
Jennifer, Joseph,
Emory, Miko, and
Thyme.
THYME'S STORY
Joseph Reni, Winter Haven, Florida
Our daughter, Thyme, was born perfectly
healthy, without a hint that
anything was wrong. But at a regular
checkup when she was 4½, her blood
pressure was abnormally high, and
the doctor suggested we take her to
a nephrologist.
Within a couple of days, Thyme
began to throw up (which we learned
later had nothing to do with her kidneys).
My anxiety was already at an
all-time high, and this put me over
the edge, so my wife, Jennifer, and I
took Thyme to the emergency room.
Doctors did an ultrasound, and the ER
doctor said Thyme's kidneys " lit up like
a Christmas tree. " In other words, they
were super echogenic, which meant
they were full of cysts. Our doctor got
us in to see a nephrologist right away,
and he diagnosed her with ARPKD.
The nephrologist put her on medication
to bring her blood pressure down,
and while I'm not against medication,
I hoped that some diet intervention
could help keep the dosage low. So
initially, we became very strict with
her diet, lowering her salt and protein
intake, avoiding red meat and refined
carbohydrates, upping her water
intake, and promoting fresh vegetables
and fruit over anything processed. And
it worked. Her blood pressure came
down, and now, at age 5, she's only on a
tiny dose of the medicine.
One of the strangest things to us is
that when we first started researching
ARPKD, the news seemed so bad. It felt
like it was the end of the world. But the
more time went on, the more things
began to feel normal again. And she's
never been sick. She's like any normal,
healthy kid-just one who has to go to
the doctor more often than most.
My best advice:
Connect with a
positive community.
ARPKD isn't well
represented online.
There is so much
more hope and many
more cases of real
long-term health. I've
met a lot of people
through social media
who are in their 20s
and 30s and beyond
who are doing great.
Sometimes I feel it's
my personal mission
that no parent will
ever again have to
deal with what I did
when I plugged in
" ARPKD " in Google.
PKDCURE.ORG
15
http://www.PKDCURE.ORG
PKD Life - Summer 2022

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