PKD Life - Fall 2021 - 14

MY PKD LIFE
Grateful for Two
Second Chances
Thanks to two generous donors,
I'm able to enjoy my life to the fullest.
By Valen Keefer, as told to Leslie Pepper
I
was 10 years old when I fi rst heard
the words polycystic kidney disease.
I was at my pediatrician for a regular
checkup, and my blood pressure was
160 over 140. My doctor immediately
sent me for an ultrasound, and both of
my kidneys were fi lled with cysts.
I vividly remember sitting in the back
seat during the car ride home, watching
my mom crying in the front passenger
seat. I was too young to grasp the gravity
of my ultrasound results and the monumental
impact this hereditary diagnosis
would have on the rest of my life.
My mom, now 65, is the oldest in our
family to survive with PKD. Her mom
was the next oldest, and she passed
away at 53. Every other family member
who had PKD died younger than
my grandma.
SO MANY HOSPITALIZATIONS
From a young age, I had numerous medical
problems. Throughout middle and
high school, I had countless cyst bleeds,
which led to many hospital stays, some
for months on end. I couldn't participate
in sports because my kidneys were
so large and the cysts so frail that they
would rupture easily.
I performed in the school plays
instead, which we thought would be safe
for me. But the cysts were so fragile that
14 PKD LIFE * FALL 2021
once, when I had to do a scene where
I pretended to faint and gently fell on
the fl oor, a cyst ruptured and sent me
to the hospital. I missed the fi rst half of
my senior year of high school because
the cysts continued to bleed and I
needed transfusion after transfusion
to compensate.
When I was 18, the bleeding got so
bad that I needed both of my kidneys
My Advice
SEEK EDUCATION FROM TRUSTED
RESOURCES. A new diagnosis can be quite shocking
and devastating. Remember to be kind to yourself
as you gather information and learn as much as
you can about PKD. Knowledge is empowering.
CONNECT WITH OTHERS. PKD is a lifelong
journey. As you navigate the trenches of this disease,
seek support and connect with others going through
similar challenges. Doing so can really help you feel
supported, not alone, and can give you hope.
SPEAK UP AND ADVOCATE. Your voice matters.
You are in control of your health. From diagnosis
to dialysis and transplant, it is vital to advocate
for yourself.
FIND JOY. Perspective is everything. We can't
wait until life's challenges go away to decide to be
happy. Find joy in every day.
PKD Life - Fall 2021

Table of Contents for the Digital Edition of PKD Life - Fall 2021
