PKD Life - Winter 2020 - 11

DOCTOR Q&A

Living Well With PKD
Nephrologist Michal Mrug, M.D., shares his
insights and expertise. With Debra Gordon

M

ichal Mrug, M.D., professor of medicine at the
University of Alabama at Birmingham (UAB),
chairs the PKD Foundation's Scientific Advisory
Committee. He co-founded and co-directs the UAB
Polycystic Kidney Disease (PKD) Clinic and oversees
clinical PKD research activities at UAB.
We recently spoke with Dr. Mrug about common
patient questions and challenges in autosomal
dominant polycystic kidney disease (ADPKD).

tools that helped many
of our patients to achieve
healthier diets is Eat, Drink,
and Be Healthy: The Harvard
Medical School Guide to
Healthy Eating by Walter
C. Willett, M.D. Additional
diet-related resources can
be found at pkdcure.org.
What are the biggest
clinical ADPKD challenges today?
The US Food and Drug
Administration's approval
of total kidney volume
as an ADPKD biomarker
in 2015 and subsequent
approval of tolvaptan as
the first therapeutic for
adult high-risk patients
with ADPKD in 2018 are
among the most notable
clinical advances. Yet
even these advances do
not always allow accurate prediction of disease
progression in individual
ADPKD patients, and they
do not cure the disease.
Hopefully, data from

4

What do people
newly diagnosed with
PKD want to know during
their first visit with you?
New patients usually ask
about their prognosis and
therapeutic options. They
often want a prediction
for when their kidneys
will fail or ask questions
related to pain, hypertension, kidney stones, or
cystic liver disease. Some
ask about screening for
ADPKD in their children
and medical management options for pediatric
patients. More recently,
people with ADPKD also
ask about what they can do
themselves to slow their
disease progression.

1

So what are the most
2 important things that
people with ADPKD can do
to help them slow their disease progression and avoid
dialysis or a transplant as
long as possible?

We believe that adherence
to several general measures may improve ADPKD
outcomes and should also
complement the care of
high-risk patients being
treated with tolvaptan.
The role of the patient is
critical, especially in the
maintenance of excellent
blood pressure control,
adequate hydration, and
a healthy weight and
cholesterol levels, and
in following a healthy
diet that's low in sodium
and calories.
Which of these
recommendations
do patients struggle with
the most?
Among the most challenging to maintain is
often the healthy diet. It
seems that many of those
who succeed understand
both how and why they
should change their eating
behavior. One of the best

3

existing and future clinical
trials will accelerate our
understanding of ADPKD
progression as well as
individual differences in
ADPKD manifestations,
and eventually lead to
the development of curative therapies for ADPKD.
Therefore, we encourage
all eligible ADPKD patients
to participate in clinical
studies. For details, see
clinicaltrials.gov or
pkdcure.org/living-withpkd/clinical-studies.
What about people
with ADPKD who
cannot participate in
clinical trials?
Participation in the ADPKD
Registry is one of the most
important ways how all
people with ADPKD can
accelerate ADPKD research
toward fulfilling the PKD
Foundation's vision of
ending PKD. For details
about the ADPKD Registry,
see page 16.

5

*

LEARN MORE

Answers to many questions can be found on the PKD
Foundation website (pkdcure.org) or in UpToDate,
an evidence-based clinical resource for patients
and their families (uptodate.com/contents/
polycystic-kidney-disease-beyond-the-basics).

P K D C U R E .O R G

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http://www.pkdcure.org http://www.clinicaltrials.gov http://www.pkdcure.org/living-with-pkd/clinical-studies http://www.pkdcure.org http://www.uptodate.com/contents/polycystic-kidney-disease-beyond-the-basics http://www.uptodate.com/contents/polycystic-kidney-disease-beyond-the-basics http://www.PKDCURE.ORG

PKD Life - Winter 2020

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