PKD Life - Fall 2020 - 17

See a specialist
"Every disease specialist has
knowledge that is not typically
given in a general clinician
setting. I recommend any
patient who doesn't have a PKD
specialist to at least seek one
out for an evaluation." -Diggs
"It's really important to have an
open line of communication
with a PKD specialist. For one
thing, there are treatment
methods available now that
were not available in the past.
And when problems do happen, it's easier to mitigate
the damage before it goes
too far." -Noce

Prenatal concerns
"If you are a woman with high
blood pressure and PKD and are
starting a family, it's important
to know that some blood pressure medications can be harmful to an unborn child. We may
need to take you off of one blood
pressure medication in order to
get it washed out of your system.
We would start you on another
medication that would not be
harmful to the unborn child.
This could take a few months
in order to ensure washout and
good BP control." -Grier
"For those with hypertension,
we generally recommend seeing either an obstetrician who
specializes in kidney disease or a
high-risk obstetrician. For those
without hypertension, they have
the option of seeing a high-risk
obstetrician as a consult. They
may not need to follow you
through the entire pregnancy,
but if you develop preeclampsia
(a dangerous form of hypertension during pregnancy), you have
someone you can turn to if it
becomes an issue." -Grier

Slowing PKD's progression
"We strongly recommend
getting your blood pressure checked on a regular
basis, and advocate for
very tight blood pressure
control. Our typical target
is 110/70." -Grier
"Limit sodium intake,
as it affects blood pressure." -Diggs
"It's really important for
patients to pay attention
to nutrition labels. A can

of soup may say it's
33% of your daily sodium,
but if that's one serving
and you eat the whole can,
it might be three servings.
Then you've had all
the day's sodium in one
meal." -Noce
"Stay hydrated, because
this has been shown to be
one of the mechanisms
used to slow cyst production." -Diggs

"Don't drink 1 or 2 liters of
water at a time and say
you're done for the day.
Spread it out over the
course of the day." -Grier
"Patients often want to
know how their kidneys
are doing. The eGFR is an
estimation of glomerular
filtration rate, which, in
plain English, is known
as kidney function, using
creatinine level, age, and
race to calculate." -Diggs

Treatment insights
"Patients often come to us
because they've heard about
tolvaptan. We will ask them
to drink at least 2 to 3 liters of
water daily as a trial for tolerability. Tolvaptan is not for everyone. It causes increased thirst,
increased urination, and waking
up at night to urinate, all of
which affect your quality of life.
Even more critical, it can affect
your liver, so you need frequent
lab work in the first 18 months.
We make sure they have as
much information as possible
so they can make the best
decision and be successful."
-Grier
"Many people do not realize
how much work and how long
it takes to get a kidney transplant. I've met so many patients
who wished they were referred
sooner to a nephrologist and
for a transplant evaluation."
-Christensen

Consider a
clinical trial
"Participate in observational
and intervention trials. There
is much to be known about the
treatment of PKD and only one
drug approved to date for PKD."
-Christensen
"Being part of a research study
not only helps you but will help
your future family members
and friends." -Testa

We have
your back!
"People with PKD should
know that they are not in
this alone. There are people who care and want to
help you." -Testa

P K D C U R E .O R G

PKD_FA20_16-17_Feature_Nephrology.indd 17

9/23/20 8:55 AM

http://www.PKDCURE.ORG

PKD Life - Fall 2020

Table of Contents for the Digital Edition of PKD Life - Fall 2020