Heart puts teen's future on hold
By Lorna Collier
It's mid-August and most teenagers are thinking about returning to
school, about getting on with their lives after summer vacation.
Most teenagers, maybe, but not Suzzanne "Suzzie" Luther. Instead, for
the 14-year-old Boylan Central Catholic High School student from
southeast Rockford, Ill., the future is on hold. She's spending these
last days of summer waiting -- not for school to begin, but for someone
to die, so she can have a chance to live.
Last Friday, Suzzie, after a two-and-a-half year battle with heart
disease, was placed on Loyola Medical Center's list of patients who
urgently need hearts. She shares the list with seven other people.
"In a way, it adds a little more stress," says Suzzie's doctor,
pediatric cardiologist Alfred HuYoung of Rockford Clinic. "Put yourself
in her place: all of a sudden, you've got something to work for, and
you're wondering, 'Uh oh, is my heart going to stop tomorrow?' So now
they are in a countdown. Maybe it'll be a month, maybe it'll be two
months."
Suzzie's mother, Kathy, agrees. "Waiting is going to be the hardest
part." On Monday, Loyola gave Kathy a pager so the hospital can contact
her as soon as the heart is found. Kathy says she'll sleep with it
under her pillow.
That's fine with Suzzie, who doesn't want to carry the pager herself.
"I'm not gonna be with my friends and hear some beeper beeping and go,
'Sorry guys, gotta leave, gotta go get my heart,'" she says, laughing.
Laughing is something Suzzie, a pretty blonde with lively blue eyes,
does often -- despite suffering from an illness called cardiomyopathy,
a weakening of the heart muscle which has caused her heart to triple in
size and occupy two-thirds of her thin chest.
"I really don't have pain very often," Suzzie says. "I don't feel
anything they say I'm supposed to feel."
In fact, with Suzzie, nothing has gone much the way doctors expected.
"It has been essentially been a miracle that she's still functioning as
she is," HuYoung says. "That she's doing what she's doing has amazed
everybody."
Kathy adds that when she first took Suzzie to Mayo Clinic
two-and-a-half years ago, "they said she would probably not go back to
school -- and she went to seventh grade, eighth grade, and struggled
through ninth. So, they really think that she is kind of a miracle,
walking around with what little heart she has. It's only this year
she's had a little wearing-down.
"But I just think she's determined to go on and I also think because
she's felt so bad for so long it's the only way you know and you're
just used to it."
John and Kathy Luther have let their daughter keep up her normal
activities, despite her disease.
"We kind of put the rules down every once in awhile, but we pretty much
let her do what she feels she can do," Kathy says. "Otherwise,
two-and-a-half years ago, we'd probably have been paranoid and had her
in bed -- yet she's been back in school and been able to share a lot of
things."
But not quite everything. Says Suzzie: "I tried out for pompon and I
ended up in the hospital afterward. I made it, too -- that's what was
real hard."
Suzzie has been hospitalized "six or seven times" since her illness was
discovered. Friday, she was released from Rockford Memorial Hospital,
where she spent two weeks having what she calls "a tune-up": a
combination of medications aimed at helping her heart contract. When
she entered the hospital, the five-foot-two-inch girl's weight had
dropped to 77 pounds; now it's back up to 81.
During the past two-and-half-years, the "tune-ups" have become more
frequent, which HuYoung says is why Loyola -- the state center for
heart transplants for children her age -- decided to add her to its
active list. The center in Chicago now will begin looking through its
computer network for a heart that will match Suzzie's blood type and
size. When a heart is found, Suzzie will be whisked to Loyola for the
operation.
"With the way my heart is, I can take an adult's heart or a child's
heart, so that's the good part," Suzzie says.
HuYoung confirms it, adding: "She's in a very optimal range ... I am
very hopeful."
Suzzie says she is "a little scared" about the surgery, which would
make her Rockford's youngest heart transplant patient. "I just want
everything to be over," she says.
"I'm coming home in a limousine," she adds, grinning at her mother.
Kathy shakes her head, smiling. "That's her dream -- to come home in a
white limousine. We've been looking at brochures, but right now it's a
little over our budget."
Indeed, worries over bills have been the hardest thing so far about
Suzzie's illness, says Kathy. Most aggravating have been the struggles
with Suzzie's insurance carrier, Blue Cross/Blue Shield of New York.
"Bills come back wrong. They reject you... It's a day-to-day process.
You could hire a secretary full-time to handle it, and that takes away
from the time you could do other things," says Kathy.
When Suzzie first became sick, the company Kathy was working for
closed, and the individual Blue Cross policy she was offered did not
include major medical coverage. No other insurance company would take
Suzzie, so Kathy flew to New York and found a part-time consulting job
with a company that also had Blue Cross of New York. That way, Kathy
was able to keep the coverage she had. Kathy also went back to school
and got an insurance license to help her understand the business.
But even that hasn't helped clear up year-old bills the insurance
company has yet to pay, much less deal with the future expense of
Suzzie's surgery, which is estimated to cost about $250,000. Blue
Cross hasn't said whether it will cover the surgery. "They don't want
to be pinned down," Kathy says.
After the surgery, Suzzie's expenses won't end: transplant patients
typically spend $20,000 a year for the rest of their lives for
medication and tests.
If Suzzie loses insurance coverage, she won't be eligible for state
aid, Kathy says, because she's under 18 and both parents work.
Kathy has restarted a local group called "Parents With Hearts" to help
educate and provide support for families with children who have heart
problems. She also would like the group to lobby for changes in
insurance laws so that otherwise-uninsurable children can be coverd,
and is thinking about setting up a heart fund "not just for Suzzanne
but for other children with heart problems."
And, Kathy would like the public to become more informed about organ
donation. "I'm not sure I could have done it myself, before, but now I
understand the need," she says.
While she waits for her new heart, suzzie is spending her days at home,
keeping busy by drawing and painting and coloring. "I want to be a
designer," she says, "interior or fashion."
She also worked last fall as a volunter at SwedishAmerican Hospital
helping patients in the heart ward. Medical terms roll off her tongue,
and she displays her heart readings on pink paper stuck to the
refrigerator, pointing out what a normal heart would show and what hers
shows.
But this doesn't mean she wants a career in medicine. "I think once I
get out of this and get done being sick, I dont think I ever want to
look at another nurse again, let alone turn into one," she says. "But
who knows?'
What Suzzie is sure of is that she will have a future. "I just know I'm
going to be OK," she says.
Adds Kathy: "When I try to get her ready for church on Sundays, she
says to me, 'Aw mom, I'm already praying every day.'"
Author's Note: Suzzie went on to get
her heart shortly after this article was published. She returned to
Rockford in her white limousine, as promised. Several weeks later, her
body rejected the heart, and Suzzie died.
© Rockford (Il) Register
Star, 1989