The importance of 'assuming' - and how important it is to persist
when you KNOW something is very wrong. LKW
"I Was Exhausted All The Time"
By Catherine Winters
Fatigued and out of breath, Karen McGinnis nonetheless kept passing medical tests with flying colors.
What's Wrong With Me?
On New Year's Eve 2005, Karen McGinnis headed for the movies with a friend.
McGinnis, a 47-year-old resident of West Deptford, New Jersey, was
looking forward to 2006. She was six months into a new job in advertising sales for
a local newspaper, active in her church and enjoyed the company of a circle
After the movie McGinnis was suddenly too tired to go out to dinner and
opted for Chinese takeout at her pal's house. During the meal McGinnis
could barely stay awake and wondered if she'd caught some kind of respiratory
infection. Over the next six weeks she developed flu-like symptoms in
addition to the exhaustion. She felt headachy and stuffed up. Her chest
felt as though a weight were resting on it, and she had trouble breathing even
when she was inactive, including sitting or lying down. One day in late
February her supervisor at the newspaper took one look at her pale skin and
glassy eyes and sent her home. She didn't know it then, but she would not
return to work for five months.
Before leaving the office McGinnis called her primary-care physician and
described her symptoms. Suspecting an infection of some kind, he told her
he'd order her a prescription for antibiotics at the local pharmacy. That
night McGinnis climbed into bed, assuming the medicine would soon kick in.
"Two days later I could still barely breathe," she recalls. She again
called her doctor, who advised her to head to the emergency room.
The Search For Help
At the ER, doctors put McGinnis on oxygen to help her breathe. Meanwhile,
they examined her but could find no connection between her current symptoms
and her medical history, which over the past decade had included a bout
with Lyme disease, chronic fatigue syndrome, four back surgeries following a car
accident and the diagnosis of a mild heart murmur.
Baffled -- and concerned -- they admitted her to the hospital for further
evaluation. Over the course of a week, McGinnishad a battery of tests. To
examine her heart, doctors performed an echocardiogram, which uses sound
waves to produce images of the heart in motion, its chambers squeezing and
relaxing, its valves opening and closing. She had a chest X-ray and a
pulmonary ventilation scan to assess her lungs. All the scans appeared to
show that McGinnis's heart and lungs were functioning just as before.
The doctors did notice, however, that her voice was raspy, and she was
responding to the oxygen. On the basis of these signs, they guessed that
McGinnis had a viral infection in her lungs that wasn't showing up on the
X-ray; alternately, they conjectured, she was experiencing adult-onset
asthma or allergies. She was discharged with prescriptions for medications
to open her airways and reduce any inflammation in them.
Back home, McGinnis went to bed with the worst fatigue she'd ever
experienced. Going to work was out of the question.
At the end of March 2006 her symptoms suddenly worsened, and she returned
to the ER. Again, she was admitted to the hospital, where she passed a stress
test that involved walking on a treadmill while an electrocardiogram (ECG)
gauged the response of her heart to the activity. After five days she was
discharged without a definitive diagnosis. "When you go to the hospital,
you expect to find out what's wrong with you," says McGinnis. "If you don't,
you start to think you're imagining it all." A woman who prides herself on
being strong, McGinnis decided to tough it out.
By April, though, she could no longer ignore her wheezing and shortness of
breath. McGinnis recalls meeting with a pulmonologist and undergoing a
three-hour test to find out whether the ER doctors' theory that she had
adult-onset asthma was correct. She says she was startled by the conclusion
that her lungs were fine.
That was it. McGinnis concluded that her symptoms had to be psychosomatic.
"I decided my body had given out from all the stress I'd experienced in my
life," she says. "I wasn't 20, I had a demanding job, I was entering
menopause." She'd wait out her symptoms, hoping they would eventually
She returned to work in mid-June. Later that month, while she was driving
to work, her wheezing and difficulties breathing -- though already bad -- took
a turn for the worse. When she got to the office she was gasping for air,
and concerned colleagues phoned 911.
McGinnis recalls rushing to the ER, calling a friend and pleading, "I can't
do this anymore. Somebody has to find out what's wrong with me." Her friend
knew of a health center that focused on both heart and lung diseases. To
McGinnis, a place with those two specialties under one roof sounded just
right. Her primary-care doctor called the center and arranged to have her
transported there right away.
At this facility, McGinnis underwent another ECG. This time, the scan
indicated the presence of a leak in her heart's aortic valve, through which
blood travels on its way to the rest of the body. Doctors also performed a
heart catheterization, a test that gives them a look inside the heart and
measures its efficiency.
A thin plastic tube, or catheter, was inserted into McGinnis's leg artery
and advanced to her heart. A dye to highlight the organ was injected
through the tube, and X-ray images were taken.
In a normal heart, oxygen-rich blood arrives from the lungs, passes through
the heart's chambers and travels out to the body via the aorta. In
McGinnis's case, her aortic valve wasn't closing completely and blood was
leaking back into her heart, causing it to work harder, depriving her blood
of the oxygen it needed and making her feel breathless.
After six months of suffering and anxiety, McGinnis finally had her
diagnosis: severe aortic-valve insufficiency. She was immediately scheduled
for open-heart surgery to replace the damaged valve with an artificial one.
The operation took place on July 3, 2006 -- a little more than six months
after McGinnis's health problems had begun -- and appeared to be successful.
A Second Opinion
McGinnis understood that the typical recovery time for valve replacement
was six to eight weeks. But she didn't improve; in fact, her presurgical
symptoms persisted. Back home now and in the care of a local cardiologist,
McGinnis had a follow-up ECG in August. The specialist didn't like what he
saw. The artificial valve wasn't working properly, and a subsequent
catheterization showed it was too small. This patient prosthetic mismatch,
or PPM, had occurred because the size of McGinnis's valve opening was
relatively small, causing her surgeon to think she needed a small valve.
The result? Not enough blood was getting through.
Then McGinnis learned that alleviating her problem required more-complex
surgery than the operation to replace the faulty valve in the first place.
Desperate to find a surgeon who could handle the procedure, McGinnis began
an Internet search. Typing in the words "patient prosthetic mismatch"
yielded the name of the Cleveland Clinic. For every question McGinnis had
about PPM, she found an answer on the Ohio hospital's Web site. Her own
doctor confirmed that the facility is highly rated, so McGinnis called the
clinic, spoke with a staff member and shipped her medical records there.
Several months later she got the good news: Her surgery was a go. "I had a
second chance at life," she says.
On October 15, 2007, cardiac surgeon Nicholas Smedira performed a
painstaking six-hour operation, during which he replaced the mismatched
aortic valve with a larger one. "I knew the new valve would make Karen
better," says Dr. Smedira.
The replacement surgery was a success. But Mc- Ginnis's medical odyssey
wasn't quite over. A follow-up echocardiogram indicated a leak in her
mitral valve, which funnels blood into the heart's left ventricle, in preparation
for it to be pumped out to the body. This was likely due to demands being
placed on it by the new aortic valve. Ten days later Dr. Smedira repaired
the mitral valve. "We understood how much Karen had suffered," he says. "We
wanted to give her back her life."
Home in New Jersey, McGinnis is recovering from her ordeal and considering a
new career as a patient advocate. Though attention is finally being paid to
women's hearts nowadays, she has learned firsthand that many female cardiac
problems are still elusive and hard to diagnose. Where heart health is
concerned, McGinnis says, women need to persist:
"Nobody knows your body like you do."
Originally published in Ladies' Home Journal, February 2008.
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