Alyssa well a decade after transplant

By Dan Linehan
The Free Press

MANKATO July 05, 2008 12:47 am

— Alyssa Sandeen believes herself to be a normal 18-year-old, only with a different heart than the one she was born with.
She still takes anti-rejection medication, “but other people have medications, too, so I’m pretty normal.”
Actually, she considers herself healthier than her friends because she sees her doctor more often.
“Every little thing, they’ll fix,” she says.
Her mother, Lisa, says her goal is to write a book about the experience.
Alyssa has a more short-term goal.
“My goal is to get a job.”
While the 1998 transplant that saved her life didn’t make Alyssa a different person, it did not leave her unchanged.
The recent West High School graduate can credit the ordeal with her career aspirations and a second birthday on the anniversary of her transplant. And though it doesn’t overshadow her individuality, Alyssa also lives every day with the implications of her transplanted heart.
The transplant was national news and the family still gets stopped occasionally and asked how they’re doing.
Despite the fact that 10 years have passed, people sometimes mistake Alyssa for her 10-year-old sister, Racheal, who looks like Alyssa did in 1998.
A day from death
The Sandeens’ memory often drifts to those terrifying weeks during the late summer of 1998.
Alyssa came down with flu-like symptoms in early August, and by Aug. 16 she was in Children’s Hospital in Minneapolis, confounding doctors. Only later would Alyssa be diagnosed with cardiomyopathy, a weakening of the heart muscle that is believed to be hereditary.
Her heart had enlarged to four times its normal size and her prognosis was grim. Doctors at the time emphasized she had a less than 5 percent chance at survival, father Chris Sandeen said.
When news of the available heart came on Sept. 4, she probably had only a day or so left to live. She had already had her last rites read to her.
And when the doctors told the family a heart was coming, Alyssa’s mother, Lisa, leapt up and bumped heads with her own mother. The family still celebrates Sept. 4 as Alyssa’s second birthday.
Less happy, though, was the story about where the heart came from — a 5-year-old Virginia boy who died in a car accident. That was hard to think on, Lisa Sandeen said.
Another troubling concept: “How do you tell an 8-year-old she’s got a different heart?”
Cardiac introspection
About a month ago, Alyssa got a chance to hold her previous, still-swollen heart inside a bag. It felt like “a piece of meat,” she said. She wanted to take it home from the Rochester hospital, but doctors told her they’d like to keep it to study.
That hands-on reminiscencing is rare; it’s more common for Alyssa just to feel her heartbeat and remember. She plans to have her chest tattooed with “MJC”: the initials of the boy who donated her heart.
The list of things she can’t do because of her transplant is small.
Contact sports are out, and immune system worries keep her from being around some kinds of animals, including cats and birds. She can, however, still cuddle with her mutt puppy, CJ.
She’d like to go skydiving, but her parents are clearly wary.
And in an odd quirk, the transplant removed the nerves around her heart. So if she had a heart attack — which isn’t a particular concern — she wouldn’t even know it.
Donor awareness
Now that it’s all over, the Sandeens are focusing on donor awareness.
They’ve bound countless packages of Lifesavers candy with a card with brochures for donors. The pun is that donors save lives, Chris Sandeen says.
They knew nothing about organ donation before Alyssa’s crisis, but now they want everyone to know the benefits of being donors.
While Alyssa isn’t sure if she can have her heart donated again, there’s no question about whether or not she’ll be a donor.
“Of course.”
She plans to begin her studies at South Central College this fall to become a paramedic, or, as she puts it, a “hero.”

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