PKD Life - Fall 2020 - 16

Nephrology
Nurses

Wish You Kne w

Nurses who work at top PKD clinics across
the country share their best advice. By Beth Howard

P

eople with PKD spend more than their fair share of time at the
doctor's office-depending on the severity of their disease, they
may have follow-up visits anywhere from every six months to
every six weeks. Yet there's often much they don't know about the
disease-or even know to ask. Here, nephrology nurses who work at top
PKD clinics across the country tell us what they wish more patients knew
to live their best lives with PKD.

Get up to speed wit h PKD
"If you're first in your family "I can't stress enough the
importance of patients
to be diagnosed with PKD,
getting engaged in their
it can be a shocking concare early on, especially
versation to have. Bring
during college and their
someone with you to your
early 20s. Early hypertenoffice visits so that they
sion should be on their
can hear what you probradar, especially if there
ably are missing." -Testa
is a family history of PKD
or urological problems."
"I wish all of our patients
-Noce
knew how important it
is to know their family
"When I am seeing new
history of PKD-mom
patients, I tell them you
or dad and siblings, and
cannot believe everything
which type of PKD1 (early
you read on the internet.
progressors) or PKD2
If you can't find it on the
(late progressors) they
PKD Foundation website,
have. This is important
then check with your
for setting long-term
physician. You don't want
or short-term goals and
to start vitamins, exercise
making informed deciprograms, or funky diets
sions for themselves and
without making sure
possibly their offspring."
that there's solid science
-Diggs
behind them." -Grier

16

Test ing quest ions
"Unless patients have an
atypical presentation, or if
they're the first member of
their family to be diagnosed
with PKD, we typically don't
recommend genetic testing.
Whether you have PKD1,
PKD2, or another PKD variant,
the treatment and care you
receive will basically be the
same as you progress." -Grier
"Frequent imaging of kids to see
if there's possibly a cyst really
isn't worth it. Just let your
pediatrician know that there's
PKD in the family and insist
that they get their blood pressure checked and urine tested
for protein at their pediatrician visits. And make sure the
family is doing those things we
know slow disease progression,
such as limiting sodium and
drinking lots of water." -Grier

Our Nurse Panel

Wh a t

Helen
Christensen,
RN, MHA, Living
Donor Facilitator,
Living Kidney Donor
Program, University
of California, San
Francisco

Charalett Diggs,
RN, MSN, Research
Nurse Coordinator,
Division of Nephrology,
University of Maryland
School of Medicine

Debbra A. Grier,
BSN, RN, MBA,
CCRP, Clinical
Coordinator,
Polycystic Kidney
Disease Clinic, University of Pennsylvania

Elyssa Noce,
MSN, APRN,
AGPCNP-C, CDN,
Nephrology Nurse
Practitioner, Yale
New Haven Hospital

Veronika Testa,
BSN, RN, CCRC, Division of Nephrology,
Kidney and Blood
Pressure Center,
Tufts Medical Center

P K D L I F E * FA L L 2 0 2 0

PKD_FA20_16-17_Feature_Nephrology.indd 16

9/23/20 8:55 AM
PKD Life - Fall 2020

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