PKD Life - Summer 2021 - Cover3

BREATHE
FIND RESOURCES NEAR YOU AT PKDCURE.ORG/GET-INVOLVED
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slow down t progre of t dis eas e, incl uding
eating mu he al thier, increas ing my time at t
gym, and lowering st re . "
" I've ch ange d a lot of bad hab it s in or der to
Petrifying Springs Golf Course
scottypkd *
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scottypkd A perfect day for golf
@gingineer3. He's spent all week
scottypkd A perfect day for golf
with @gingineer3. He's spent all week
helping me with my swing. Thanks
bro #golf #bigslice #pkd #adpkd
#polycystickidneydisease #endpkd
40w
cableknit Gingineer is an amazing
username
40w Reply
icherishcrochet Very nice picture!
40w 1 like Reply
My PKD Story
A bout 10 years ago, I
went to the emergency
room after a random
accident, and my blood
pressure was through the
roof, around 150/120. So my
primary doctor started me
on medication. Once my
blood pressure was under
control, he started noticing
weird measurements in my
kidney labs. He referred
me to a nephrologist, who
sent me for an ultrasound,
which showed that my
kidneys were full of cysts.
The nephrologist diagnosed
me with PKD right away.
That was seven years ago,
when I was 39.
I'VE ENJOYED getting to hear PKD
stories from others on social media.
Doctors can give you a diagnosis and
more medical information than you
can handle, but it's nice to see how
people are living with PKD and how
it's aff ecting their lives.
Through social media, I was
introduced to the FALCON study,
which I've been a part of since
December. You can fi nd more info
about this study and several others
at clinicalstudies.pkdcure.org.
MY ADVICE
Use the time you have eff ectively.
Learn about the disease, participate
in treatment, and fi nd out about
clinical studies. Don't be afraid to
get involved.
Prepare for the long term, but
SCOTT FLANNERY
Kenosha, Wisconsin
@ScottyPKD
enjoy the short term. I'm about
halfway between diagnosis and
dialysis, and it's been an emotional
roller coaster. But I'll stay positive,
keep taking care of myself, and with
the help of doctors and friends and
maybe a complete stranger who's
willing to part with a kidney, I'll get
through the backside of this with a
full life ahead of me. We all will.
*
COURTESY OF SCOTT FLANNERY
http://clinicalstudies.pkdcure.org http://www.PKDCURE.ORG/GET-INVOLVED
PKD Life - Summer 2021

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