PKD Life - Fall 2022 - 5

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Community Connection
WHAT DO YOU DO
WHEN YOU'RE HAVING
A LOW-ENERGY DAY?
Awareness
6 Factors That Predict
Rapid Decline in PKD
R ecent research presented at the National Kidney Foundation's
Spring Clinical Meetings identified six key factors that predict
rapid decline in patients with ADPKD. They are: younger age, male
sex, lower hemoglobin, hypertension, proteinuria, and cerebrovascular
disease.
The study authors used existing clinical information collected
from routine care records of ADPKD patients at Kaiser Permanente
Southern California. The hope is that the findings will help
inform providers about patients who are more likely to be rapid
decliners at the time of diagnosis and over the natural history of
the condition.
" Being able to identify these factors may provide insight into
whether ADPKD is likely to be more aggressive, which may help
patients consider certain therapies such as tolvaptan, or enroll in
clinical trials which may alter the course of their PKD, " says John
Sim, M.D., a nephrologist at Kaiser Permanente Los Angeles and
lead author of the study.
DONATING A KIDNEY
TO RESEARCH
If you have an upcoming surgery to remove a polycystic kidney,
here's why you should consider donating it to research:
* Tissue donation is one of the most important things patients
can do to support PKD research.
* There is no cost to the patient to donate diseased kidneys
for research.
* Your decision to donate does not impact your care.
Tissue donation is anonymous. Researchers welcome kidneys
from both those with ADPKD and ARPKD, as well as ARPKD livers.
" I use music on
low-energy days.
Sometimes I go to
the piano and make
my own music,
sometimes I just
listen. I like to start
with something
slow and soothing. I
don't want to jar my
mood too much. As
I start to feel a little
better, I might go for
something a little
more hopeful. " Moon
River " always works
for me. If there are
things that simply
must get done, I'll
find something
more upbeat to get
my heartbeat up
and get me moving.
Often, the music of
our childhoods can
improve moods. For
me, this means the
Beatles, Paul Revere
& the Raiders,
and the Monkees.
Those won't work
for everyone. Each
person needs to find
the music that works
best for them. "
-Annette Minnich,
Albuquerque, New Mexico
" For me, low energy
usually means I
either need some
exercise, I need
some nutritious
food, or perhaps a
bit of both. I'll often
start the day with
some gentle yoga
or take my dogs
for a walk. Getting
the blood pumping
and the body
moving goes a long
way to combating
fatigue. I also
rely on breathing
exercises that both
energize and calm
the mind. Fruit
smoothies can be a
great energy boost
midafternoon.
And never
underestimate the
childhood favorite
'ants on a log'-
celery slathered
with peanut butter
and topped with
raisins. "
-Jill Kiedaisch,
Hinesburg, Vermont
Would you like to be featured in a
future issue of PKD Life? Email
pkdlife@pkdcure.org.
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5

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PKD Life - Fall 2022

Table of Contents for the Digital Edition of PKD Life - Fall 2022