PKD Life - Fall 2021 - 15

PERMANENT GLIMPSE PHOTOGRAPHY
removed. I was in the hospital for
almost a year, sometimes needing
dialysis daily. I was actually too sick
to be put on the kidney transplant
waiting list, but I needed a kidney
to survive. At one point, they called
my parents in to say their goodbyes
because the prognosis
was so grim.
I needed a living
donor to step forward.
Friends and family were
tested, and it turned out
that both a good friend
and another friend's
mother, Sally Robertson, were both
matches. The doctors decided to go
with Sally.
MY ADVOCACY JOURNEY
A few years after my health was
restored, thanks to Sally's selfl ess
decision to donate her kidney to
me, I thought back to my youth
and how there were no support
groups for me. I came across the
PKD Foundation, called them, and
introduced myself. The next thing
you know, I was the founder of
the South Central PA Chapter of
the PKD Foundation. I organized
monthly support groups, annual
fundraising Walk for PKD events,
and educational seminars.
It is amazing to refl ect on how
" I am thankful for my
mom's stable health and
for all of us to be able
to soak in this precious
time together, " says
Valen, with her mother,
Pam Cover.
my advocacy journey began and
how it has evolved to where I'm at
today with my national advocacy
eff orts. I've shared my story at over
100 events across North America
and collaborated with leading
organizations on various initiatives
where I share the patient perspective.
I've done countless press and
TV interviews, written hundreds of
blogs, and helped raise $1.2 million
for the PKD Foundation.
Unfortunately, the medical crises
continued for me. In 2016, I was
in and out of the emergency room
Fo ll ow
Val en on
Inst agram:
@va le nkee fe r
with fevers, tremors, abdominal
pain, and nausea. I was septic, and
although doctors did test after test,
they couldn't fi nd the source. Multiple
sepsis episodes and countless
tests and hospital stays later,
the doctors told me that I needed
a liver transplant to
survive. After getting
listed at two diff erent
hospitals and temporarily
relocating, I was
lucky enough to get a
new liver in 2018. After
my surgery, they discovered
that my PKD had aff ected
the bile ducts, which led to liver
infections and ultimately caused
the sepsis.
THE POWER OF
CONNECTION
When I think about it all, it's really
unbelievable. Sally, my kidney
donor, had such a full life when she
took a pause from it to donate her
kidney to me. She said she felt a
calling-like she was meant to do
this. And that decision has had an
amazingly positive ripple eff ect.
Not only did it give me my life back,
but it also gave my parents their
daughter back, and it allowed me
to meet and marry my husband,
Noah. It has doubled my life and
given me the opportunity to turn
my challenges into something
meaningful with all the advocacy
work I've been able to do. And
thanks to my deceased liver donor
saying yes to organ donation, I am
thriving and able to continue to
enjoy life to the fullest.
I'm 19 years post-kidney transplant
and three years post-liver
transplant and grateful to be the
healthiest I've been in years. Every
day, I want to thank my donors
through action-by living a life of
passion, positivity, and purpose.
*
SHARE YOUR STORY AT CONNECT.PKDCURE.ORG/VOICES-OF-PKD
15
http://CONNECT.PKDCURE.ORG/VOICES-OF-PKD
PKD Life - Fall 2021

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