Providence Heart Beat - Winter/Spring 2018 - 9

"Through
advancements in
diagnosis, surgical
techniques and longterm management,
people born with
heart disease are
now surviving well
into adulthood."

specialized medical care has taken
a toll, and he might need a heart
transplant in five to 10 years.
His cardiologist, Jeremy
Nicolarsen, MD, FACC, says that
if Cortes Reyes had been getting
regular care for CHD throughout
his adult life, it is possible he would
have had a shorter, less-complicated
hospital stay last summer and
perhaps even avoided his current
declining health.

-Jeremy Nicolarsen, MD, FACC

Special Care for
Special Needs

At 16 years of age-the last time
Cortes Reyes saw a cardiologist
until last summer-he was told he
no longer needed to see a specialist
and could live a normal life, so long
as he avoided contact sports that
might put sudden pressure on his
chest, such as football.
What Cortes Reyes, like
thousands of people living with
CHD, didn't know is that ongoing
follow-up care with a team of
specialists dramatically improves
chances of survival.

"Through advancements in
diagnosis, surgical techniques
and long-term management,
people born with heart disease
are now surviving well into
adulthood," Dr. Nicolarsen says.
"In fact, there are now more adults
than children living with CHD."
The key, according to the
American College of Cardiology,
is that treatment for adults with
CHD should be delivered by, or
in collaboration with, clinicians
trained in treating adult congenital
heart disease, or ACHD.
Cortes Reyes now knows how
important it is to describe his
congenital heart disease to health
care providers and to get regular
care with his ACHD cardiologist.
"You don't know what you
don't know," Cortes Reyes says.
He wants others who were born
with heart disease to know the
importance of ongoing care from
specially trained providers and
to benefit from recent medical
advancements.
By Dr. Nicolarsen's estimations,
there are roughly 3,000 adults
in Spokane and surrounding
communities living with CHD, only
half of whom are receiving regular
care by ACHD-trained specialists.
More people getting proper care
for congenital heart disease means
more life stories to be shared.

Childhood Heart
Issues Return
When Cortes Reyes became ill last
summer, neither he nor his doctors
knew the details of his CHD, and
a cardiologist was not consulted.
After all, he'd felt healthy most of
his adult life. Following a monthlong
hospitalization and several invasive
procedures, Cortes Reyes returned
home, only to fall sick again.
A second hospitalization, this
time at Providence Sacred Heart
Medical Center in Spokane, connected him with cardiac specialists
trained in the care of adults with
CHD. Soon, he was able to go home
with a greater understanding of his
heart disease and the complexities
of living with CHD.
And while that is good news,
Cortes Reyes' long stretch without

Adult
Congenital
Heart Disease:
Developments
in a New Field
of Medicine
2008
American College of Cardiology/
American Heart Association task
force releases first guidelines on
adult congenital heart disease
(ACHD).

2012
American Board of Medical
Specialties approves physician
certification for ACHD subspecialty.

2017
Providence Adult and Teen
Congenital Heart Program (PATCH)
at Sacred Heart Medical Center
& Children's Hospital is among
the first centers in the country
to be accredited by the Adult
Congenital Heart Association as
an ACHA ACHD Comprehensive
Care Center. Accreditation requires
comprehensive services provided by
specially trained pediatric and adult
cardiologists, in coordination with
multiple subspecialists, technology
and wrap-around services.

THE RIGHT CARE FOR
YOUR HEART
If you have congenital heart
disease (CHD), it's important
that you advocate for yourself
and establish regular visits with
providers who have dedicated
training for adults with CHD.
For more information, call the
Providence Adult and Teen
Congenital Heart Program at
509-474-6707.

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9
http://www.phc.org/heartbeat
Table of Contents for the Digital Edition of Providence Heart Beat - Winter/Spring 2018
