PKD Life - Fall 2022 - 21

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York. " I want my patients to know just
as much as I do about the disease so
they can make decisions. It's a genetic
disease, and it runs in families, but the
course for each person is going to be
unique. I want them to check labs and
see if together we can't make them as
healthy as possible. "
IT'S A PARTNERSHIP
So, how do you ensure that you and your
doctor become partners? The first step is
finding a doctor who listens to you.
" In order to be heard, you need to
know what you are going to say, " says
Greg Zollner, M.D., 60, a retired nephrologist
in Pennington, New Jersey, who was
diagnosed with PKD at age 38. " You need
to get organized for the visit. You have to
ask yourself what your priorities are and
what your questions are. " (See " Questions
to Ask, " at right.)
Being honest is also really important.
" It's very unlikely that what you're going
to say is a surprise or shock to your doctor, "
Dr. Zollner says. " It's like being a
priest in confession. "
Dr. Zollner also recommends using
the patient portals that most medical
practices offer. " I'm on all the portals, " he
says. " We can communicate efficiently,
and it makes it easy to have a rapport
with the physicians I see. "
THERE ARE BARRIERS
That rapport often faces challenges: limited
time with the doctor, health insurance
issues, patient fears of the disease,
and even geography if you live far from a
major medical center.
QUESTIONS
TO ASK
" I love it when patients come
to an appointment with
questions-even if they
think they are silly questions.
There really are no silly
questions, " says nephrologist
Michael Lioudis, M.D.
Whether your questions
revolve around lab results
or your fears and concerns,
write them down and prioritize
them so you can get the
most from your visit. Some
good questions include:
Q What is my kidney function
now? What is the trend?
How does it compare
with before?
Q Do we know what caused
this change?
Q If it is getting worse, when
is dialysis or transplant likely
to be necessary?
Q What can I do to slow
this trend?
Q Is there anything that I'm
doing that may be keeping
me from being as successful
as I can be?
Q I'd like to ask you about
the following symptoms.
(These can be anything from
trembling hands to itchy
skin. Even if they seem unrelated,
your questions may
uncover something important
about your health.)
Dr. Garimella agrees those challenges
can be difficult but thinks that one
answer to them lies in telemedicine,
which exploded during the COVID-19
pandemic. " A lot of nephrology can be
done remotely, " he says. " If we meet virtually,
patients don't have to drive to my
office, find parking, wait in the waiting
room. That can take hours. With telemedicine,
one can do a visit in 20 minutes.
This has changed how often and
easily patients can see their doctors. "
Kim Holekamp, 52, of Edmond, Oklahoma,
who's had a kidney transplant,
says she has found remote visits very
helpful, especially during the COVID-19
lockdown. " I could tell them my symptoms
and they had a good understanding
of what was going on, " she says.
In general, Holekamp says, the relationship
boils down to paying attention:
" The biggest thing I want my doctor to
do is to be fully present and to not be in
a hurry. " She says she knew she'd found
the right doctor after her transplant.
Many people told her that she would
never come off steroids, which are prescribed
to many transplant patients.
" I talked to my nephrologist about
it and told him I wanted to come off
the medicine, which was making my
weight and glucose go up, " she says.
" 'Give it three months,' " he told me,
" 'and if all goes well, you'll come off
the steroids.'
" By being open about it, I was able
to come off of them, " she says. " I've
learned to speak up-because if you
don't, the doctor can't know what
you're thinking. "
*
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PKD Life - Fall 2022

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