ROCHESTER – Of course she wants a new heart. She needs a new heart. To continue living the extraordinary life of Alyssa Sandeen, a new heart is a requirement.
Still ... the one she has now is special. The one she has now came to her at a time when many people in her community assumed she’d die. To get the heart she has now — the heart that has seen her through high school, first kisses, proms — a little boy named Matthew had to die. He was 5 when he was hit by a truck and suffered fatal injuries. Luckily for Sandeen, Matthew’s family decided to donate his organs.
And she’s never forgotten that.
“It’s going to be hard to give up Matthew’s heart,” she said. “I asked them a couple of days ago, ‘I wonder if I could hold it.’ ”
Sandeen, 23, of Mankato, has a lot of time to think these days. She’s stuck in a hospital room at St. Marys Hospital in Rochester. And it is there that she’ll stay until the time comes when she must cash in Matthew’s heart for a new one. She’s crossing her fingers in the hopes that she gets a heart for her birthday on April 16.
“If I don’t get one, I’m going to seriously cry,” she said.
When Sandeen was just 8 years old, she was diagnosed with cardiomyopathy, a weakening of the heart muscle that caused her heart to grow to four times its normal size. Doctors at the time said she had less than a 5 percent chance of survival. She likely had only a day or so to live when a little boy in Virginia was hit by a truck and died.
Since then, Sandeen has led a somewhat normal life. Or, at least as normal as a life can be in a town like Mankato where everyone knows you’re the girl who almost died at age 8, had a heart transplant and endures recurring health troubles.
In 2010, she received a kidney transplant from her mother. Before that, she’d been undergoing dialysis treatments three times a week. And then last November, her heart stopped twice in one morning, including once when doctors and nurses spent two hours performing CPR on her.
Now, Sandeen says she’s curious about where her next heart will come from.
In 2004, Sandeen and her family appeared on “The John Walsh Show” and she got a chance to meet the woman who made the decision to donate her son’s organs so others could live. (It’s still available via YouTube; search for “Sandeen.”)
“I had six days beside him at the hospital,” the boy’s mother said on the show. “I had thought about donating his organs, and then I said no. And then the day before they pronounced him brain dead, they moved him over in the bed and I laid beside him, and I put my hand on his chest, and his little heart was beating so good. And I thought to myself, ‘What if he needed an organ, and no one would give him one?’ So I decided to go ahead and donate his organs. ... When I found out a child has got his heart, that just touched me.”
It touched Sandeen and her family, too.
Today, she understands how dire her situation is. Still, she wishes she didn’t have to give up Matthew’s heart.
“I almost want to keep the heart,” she said. “I know that sounds so bad. And I know I can’t.”
When a new heart becomes available for Sandeen, she’ll likely spend three weeks after the transplant in the hospital. Then she’ll have to live someplace close to the hospital for several months for the intensive post-transplant care.
“I want to do so much more when I get out,” she said. “I want to do a lot of stuff for myself, a lot of stuff for other people. There’s so many things I want to do.”