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