PKD Life - Fall 2021 - 11

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DOCTOR Q&A
Communicating With
Your Healthcare Team
Insights and advice from nephrologist Ronak Lakhia, M.D.
L iving with a chronic disease like polycystic kidney
disease (PKD) means frequent doctor visits
and dozens of decisions to make about treatments.
The key to the process is communication. Yet despite
the best intentions on both sides, patients and their
healthcare teams sometimes fi nd those interactions
challenging. We talked about this issue with Ronak
Lakhia, M.D., who leads the PKD clinic at the University
of Texas Southwestern Medical Center in Dallas
and whose research laboratory is supported by the
PKD Foundation.
sometimes months before
their appointment. These are
not urgent questions, but I
can use them to prepare for
the visit and make sure we go
over them.
Q Where do patients
struggle when it
Q What is the most
important thing
when it comes to patientphysician
communication?
It is vital to establish an open
and honest line of communication
between the two
parties. It is important that
you understand how your
healthcare team prefers to be
communicated with so you
can receive the most rapid
response. This may be as
simple as calling their offi ce
or sending messages through
the electronic patient portal.
Ask the offi ce what the
expected turnaround time
is for all messages. Finally,
make sure that if the healthcare
team reaches out to
you that you also respond
promptly. We want to know
that you received our message
and understand any
changes in the plan of care.
Q What about during
the doctor visit?
Before you visit the doctor,
write down any questions
or concerns you may have
to take with you to your
appointment. Use this list
to guide your conversation,
and write down the answers
if you need to. If you do not
understand something, tell
the healthcare team that you
need further explanation.
Finally, consider bringing
a friend or family member
with you to the appointment
for support and to serve as a
second set of eyes and ears.
Q Many times the
doctor is rushed.
How do you handle that?
At our clinic, patients often
send me their questions
through the electronic
health portal ahead of time,
comes to communication?
When you have polycystic
kidney disease, you often
have several diff erent doctors
taking care of you. It can
be confusing to determine
who to ask which questions.
Therefore, it is important to
have your healthcare team
anchored by a PKD specialist/
nephrologist and primary
care physician. Use these two
doctors' offi ces to help you
triage which questions need
to be asked to other members
of your healthcare team when
you are not sure.
Q Do you think patients
are intimidated by
their disease?
Yes, PKD can be a complex
disease, and each individual
case is diff erent. For many
people, it can be overwhelming
to accept their disease
and determine what to
ask and how to ask. This
is a completely reasonable
emotion. To help gain more
control, it is important to
have a good understanding
of your disease. One step
toward achieving this goal is
to establish a good relationship
with someone who specializes
in polycystic kidney
disease, even if you only see
them once a year. They can
give you an assessment of
how aggressive your disease
is, which other specialists
you may need to see, and
allay any fears or concerns
you may have.
Q What other advice
do you have?
People with PKD should
always ask their PKD specialist
what is new. This is an exciting
time for polycystic kidney disease
research. The new tools
and technologies that we have
today have signifi cantly accelerated
our understanding of
cystic kidney diseases. There
are new drugs and interventions
in preclinical and clinical
trials. Many of the doctors
who see individuals with PKD
also perform research. They
are an excellent resource to
teach you more about ongoing
studies that you may be
eligible for. They can also
help you interpret the results
of recently completed studies
that you may have read
about. I have found that many
patients are comforted to
know that there is a worldwide
PKD research community
dedicated to developing
treatments for PKD.
*
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11
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PKD Life - Fall 2021

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