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Cardiology |
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| 05 Aug 2008 | Viewed: 63 | |
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Hand a napkin to Jim Wong, and he can quickly diagram the four things that are wrong with his heart.
Between sips of coffee, he chats casually about how surgeons implanted
one artificial valve, repaired a second valve, sewed up a small hole
between the two upper heart chambers and did a maze procedure to stop
the arrhythmia that hindered his heartbeat.
But Wong considers himself lucky. He found out before it was too late
that the heart problems he was born with hadn't ended, even after he
had childhood surgery to fix them, and now he lives near the Adult
Congenital Cardiology Clinic at Stanford Hospital & Clinics.
Unlike Wong, most of the one million U.S. adults who have
life-threatening heart disease from their congenital heart conditions
are "lost," doctors say, because they still think the surgery they had
as children was all they needed.
"Some were told they were 'fixed,'" says Andrea Frederick, RN, MSN,
coordinator of Stanford's adult congenital cardiology clinic. Now
doctors realize their congenital defects weren't cured. As doctors have
recognized that these adults have lifelong problems, they've started
programs to help. Stanford has one of some 60 centers nationwide
dedicated to giving medical care to adults born with heart problems.
Wong, a 53-year-old Hitachi product strategist, already has had two
open-heart surgeries, and he'll need another operation when his
replacement pulmonary valve wears out. Fashioned from the pericardium
of a cow and a wire frame, it could last 10 years. Or maybe 15. Wong
has had his valve for six years now, "with no degradation." Pause. "But
you never know."
That's what it's like to live with adult congenital heart disease.
You're born with one or more defects that can be repaired-but never
permanently cured.
Decades ago, infants with holes in their hearts, or with missing
valves, vessels and chambers "basically used to die," said Daniel
Murphy, MD, professor of pediatric cardiology at Lucile Packard
Children's Hospital who also directs the adult congenital cardiology
clinic at Stanford Hospital & Clinics. "They either didn't get
surgery, or they didn't survive surgery."
Today, thanks to technological advances and an evolving understanding
of the body's critical pump, there is a new and growing population of
patients worldwide-survivors like Wong, who are living into their 50s,
60s, even 70s.
Wong wears a medical alert medallion around his neck and carries a
health "passport" in his backpack that details his history as someone
who was born with Tetralogy of Fallot, one of more than 30 different
congenital heart conditions. In an emergency, Wong's passport tells
responders to take him not to the nearest emergency room but, if
possible, to Stanford's emergency room.
There, specially trained cardiologists, electrophysiologists, imagers
and interventionalists can quickly diagnose and treat adult congenital
heart disease patients-by checking on a pacemaker, or by doing an
arterial switch procedure. Physicians at the clinic see some 300
patients annually, and perform about 50 surgeries per year.
Some adults born with heart problems have stopped seeing a doctor
because they got discouraged when they saw physicians not familiar with
their conditions. "It was difficult to find someone who understood
their anatomy, and they just stopped going," said Frederick, the nurse
at the Stanford clinic.
Another high-risk subgroup of the "lost" are "young adults and
adolescents who think they're bullet-proof and don't need health care,"
Murphy added. "And more than half of patients between 20 and 30 have no
health insurance."
Wong had his first open-heart surgery in 1960, at age five, and said he
was pronounced "fixed." He played sports in high school and stopped
seeing a cardiologist once he turned 16. In 2002, on a business trip in
Southeast Asia, Wong had to be hospitalized for seven days with
frightening atrial fibrillation and atrial flutter. "My heart would
start racing, and wouldn't stop," he recalls. "It was just horrible."
In Wong's case, the fibrillations, or rapid flutterings, were caused by
an irregular hole in the wall (septum) between the lower two chambers
of his heart. Because of the way his heart formed, he said that the
hole, or ventricle septal defect, "really messes up" his circulation.
When the rate of the flutterings, or arrhythmias, are particularly
fast, some heartbeats expel little or no blood into the aorta, the
body's biggest blood vessel.
He flew back to the Bay Area with a medical escort and contacted
Murphy, who'd been recommended by a U.S.-trained electrophysiologist in
Singapore. Tests indicated that he needed surgery, and Wong returned to
the Mayo Clinic where he'd had his first open-heart procedure.
Today, he sees Murphy for regular checkups-"And I've been
arrhythmia-free ever since." Thanks to the Internet, Wong had been able
to use the time when he was hospitalized in Singapore to search the
Internet for information about adult congenital heart disease. "I found
the Adult Congenital Heart Association when I returned to the United
States, and the members on the message board made the whole traumatic
event so much easier to deal with." His work on behalf of the
organization has been a continual "giving back."
A past board chair of the association, Wong said that organization is
continually trying to identify the "lost," and encourage them to get
systematic, qualified care. "There are all those people out there, and
if they wait too long, they're going to die an early death, or
degenerate to the point where they may need heart transplants."
Murphy serves as a member of the medical advisory board of the
association, and he frequently is invited to talk with physicians'
groups about how hospitals and clinics can best care for adult patients
with congenital heart disease. At Stanford, ACHD patients are
transitioned from the children's program to the adult hospital at about
age 18, and Murphy argues that, "in the long run, adult medicine needs
to be the home for these folks."
In some ways, Wong and the emerging generations of congenital heart
patients are like survivors of childhood cancer. "They didn't exist
before, and their problems are unique and their diagnoses are unique,"
Murphy said.
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| News Source: Medical News Today |
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