PKD Life - Spring 2020 - 10

Ages & Stages
CAREGIVING

Here's how to help
someone get the best
possible care for PKD.
By Andrea Atkins

STAY ON TOP OF
PKD INFORMATION
Register for webinars, sign up for
Advocacy Alerts, and follow news from
the PKD Foundation. Knowing what
drugs are approved or what testing is
recommended enables your family
member to get the latest and most
effective treatment, and Advocacy
Alerts provide an opportunity to
influence critical patient legislation.
1

Frey, of WhiteG lenna
house, Ohio, and her

husband, Bob, often drive
two hours from their home
to the Cleveland Clinic so
her husband can see doctors
who specialize in polycystic
kidney disease. It's an inconvenience, Frey admits, but
she wouldn't have it any other
way. "I have always advocated
for Bob to get the best care,"
says Frey, a nephrology nurse
whose 28-year-old daughter
also has PKD. She says there
are many ways to be a great
advocate for someone who
has PKD:

10

2 KNOW WHAT QUESTIONS
TO ASK-BEFORE
YOUR APPOINTMENT.
Be ready to ask about test
results, symptoms, or anything
at all, Frey says. "If you don't ask,
they don't share with you. Don't
assume that nothing's happening because the doctor didn't tell
you," she says. Make sure all your
issues are addressed, and take
notes to give you a record you
can look back on-and serve as
a history of the disease.

ENCOURAGE-AND MODEL-
HEALTHY BEHAVIOR.
Telling a loved one to lose weight, start
exercising, or quit an unhealthy habit is
difficult, Frey says. It's better to provide
choices and options. "Sharing information about what can be healthier is
my role," she says. "It's up to them to
decide if they want to choose that or
not." In the meantime, model healthy
behaviors yourself-you'll inspire your
loved one.
3

4 STAY AWAY
FROM "WHAT IFS."
Worrying about what might
happen is counterproductive. "You can drive yourself
crazy and increase your anxiety, and that doesn't help
anyone," Frey says. Better:
Get the facts, deal with the
issues in front of you, and
take action with the items
you can control.

5 CONSIDER
DONATING A KIDNEY.
Frey donated a kidney to a stranger
and did an advanced donation-
meaning her donation earned
a voucher that her daughter or
husband can use for a future transplant. She felt a "huge satisfaction
in knowing that I helped someone
get off dialysis and go back to work."
And she started a nonprofit with
her daughter called Kidney Donor
Conversations (mykdc.org), which
provides education about living kidney
donation and supports those who
are contemplating donating a kidney.
"I only have one kidney to give, and
I want to help more people. It's my
way of advocating for everyone with
kidney disease," she says.

*

CACTUS CREATIVE STUDIO/STOCKSY

5 Ways to
Be Your
Loved
One's Best
Advocate

PKD LIFE * SPRING 2020

PKD_SP20_10_Caregiving.indd 10

3/30/20 11:20 AM
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PKD Life - Spring 2020

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