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| Maryellen
O’Leary, RN, patient care coordinator at the
Alta Bates Adult Hemophilia-Hemostasis Program in
Berkeley, Calif., is among an estimated 150 to 300
nurses who specialize in treating the nation’s
20,000 hemophiliacs, such as Stanley Horyza, one
of an increasing number of hemophilia patients who
enjoy a full life, in relatively good health. |
When Stanley Horyza had an internal bleeding episode
in his kidney recently, his first reaction was to pick
up the phone and call his nurse.
Horyza, 28, has hemophilia, but is adept at managing
his disease: In high school, he was a member of the
varsity swim team; he works full time as an office manager
at H&R Block; he’s married with a 4-year-old
daughter. But living with a serious blood disorder means
things can easily go wrong, and when he has a question,
Maryellen O’Leary, RN, is on the other end of
the line.
O’Leary is patient care coordinator at the Alta
Bates Adult Hemophilia-Hemostasis Program in Berkeley,
Calif., and is one of an estimated 150 to 300 nurses
who specialize in treating the nation’s 20,000
hemophiliacs. Hemophilia is a rare blood disorder caused
by a deficiency in one of the blood clotting factors,
resulting in excessive bleeding. Although small wounds
and punctures usually are not a problem, uncontrolled
internal bleeding can result in pain and swelling, as
well as permanent damage to joints and muscles.
O’Leary describes herself as the go-between,
a bridge between her clinic’s 170 patients and
the lone on-site physician. She spends about half her
time working directly with patients, doing assessments
and evaluating bleeding episodes, and the other half
coordinating treatment with physicians, surgeons and
dentists, doling out advice over the phone and facilitating
insurance coverage.
Horyza visited O’Leary at the clinic in May for
a preop knee replacement surgery consultation. Although
the San Jose, Calif., resident is a “severe”
hemophiliac—someone who has less than 1 percent
clotting factor—he is one of “our success
stories,” O’Leary said.
“When you look at [a hemophilia patient’s]
joints, even at age 28, there’s a spectrum of
damage. He’s got good muscle tone, flexible joints,”
O’Leary said.
After Brad Lewis, MD, examined Horyza, O’Leary
came in, and the two had a quick discussion about Horyza’s
postsurgery rehabilitation. O’Leary advised him
to take a high blood-clotting factor dose before any
physical therapy on his knee to avoid any bleeding episodes,
and warned him that he would have to endure some “pain
and aggravation” in order to develop good flexion
in the joint.
Horyza said he is eager to move ahead with the surgery
and to get rid of the brass-tipped cane he has relied
on.
O’Leary’s clinic treats only adults—in
California, hemophilia patients younger than 18 are
seen in pediatric centers—and most of her patients
are not as healthy as Horyza.
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