The Free Press, Mankato, MN

March 23, 2013

For Alyssa Sandeen, waiting is the heart of the matter

By Robb Murray
Free Press Staff Writer

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, 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. Sandeen is a status 1A on the transplant list. This means a team of doctors could rush into her hospital room today and tell her a new heart is here, and it’s go time.

Or, she could be waiting several weeks. Or months.

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.

She says that jokingly, but Sandeen is a young woman whose life has given her plenty of reason to weep.

When she was just 8 years old, she was diagnosed with cardiomyopathy, a weakening of the heart muscle that caused her heart to grow four times its normal size. Doctors at the time said she had less than a 5 percent chance of survival. She likely had 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 where everyone knows you’re the girl who almost died when she was 8 and had a heart transplant.

More recently health troubles have turned that somewhat normal life into a not-so-normal life. In 2010 she underwent a kidney transplant, courtesy of her mother. Prior to 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.

She considers herself lucky, of course.

“Two hours of CPR … At what point do you give up?” she said.

Added her mother, “She’s had so many miracles.”

That marathon CPR session saved her life, of course, but it wasn’t without a cost. The lack of blood circulation to her extremities resulted in compartment syndrome in her right leg. Today, she says, that leg is in a lot of pain as the tissues begin to come back to life. She’s also needed skin grafting on her chest from complications of a chest IV leak that seeped fluid under her skin, leaving a portion of her chest blackened.

After that, she made a few trips back to Mankato for visits, but for the most part, she’s been in Rochester ever since. Now, to be placed on status 1A on the transplant list, she needs to reside in the hospital. That way, when news comes that her new heart is ready, she’ll be ready.

Living in St. Marys Hospital, she says, is no picnic. She loves the nurses, whom she says have become like family. But Sandeen likes to have fun. And that’s tough to do when you’re limited by your ailing health; walking a short distance causes her to become breathless, and visitors must wear gowns to prevent the spread of infection.

She can leave the floor she’s on if accompanied by a nurse, such as on Sundays, when a nurse accompanies her to church services. (Sandeen says her faith means a lot to her, which is evidenced by the picture of Jesus on the wall behind her, close to her bed. It stays even when coloring book pictures given to her by well-wishing kids are taken down to make room for the flood of new pictures, cards and posters that come in regularly.)

Clearly, the living situation is frustrating. But she understands it all has a purpose.

“It was so tough at the beginning,” she said. “I think I’m starting to cope with it a little better. I have a lot of family and friends, and Facebook lets me get a little taste of reality. If I didn’t have any family support, I would definitely not be here. ”

It would seem logical that Sandeen is at least slightly miserable. But Sandeen is a puzzle, a ham, and a performer. She’s crafty, fun loving, unafraid to use obscene finger gestures to make sure photographers can’t publish a picture of her. She kills time by gazing out the window at the “hot construction guys” and entertaining friends on weekends. She giddily opens cards from people she’s never met. One recent day, she opened one from a woman in Brooklyn Park. The inspirational message printed on the card came with a hand-written note from the woman, encouraging Sandeen to keep her head up, keep hope alive, have faith that a new heart will arrive soon.

And sometimes, she just needs to be silly.

Late one recent weekday morning, she put on her slippers and headed down the hall with mom following, pushing her IV pole, the one she’d decorated with colorful tape. In one hand, she held a cane. In the other, a syringe filled with water.

Earlier in the day, she’d played a trick on one of her nurses and squirted her with water from a syringe. Now she was armed with a bigger syringe, and was taking the water fight to a new level.

Slowly she walked from her room to the nurse’s station, waiting to find the hospital medical staff that have become almost family to her. When she found them, she tried to pretend as if she had no mischief on her mind, but eventually the syringe came out and she unloaded it.

Not to be outdone, a pair of nurses found their syringes and fought back. For a few minutes, the nurse’s station looked more like a backyard pool party — and like the nurses understood a young woman cooped up in a hospital room might need a little silly time.

Sandeen says she’s curious about the next person who will ultimately have to die to allow her to live. What kind of person will it be, she wonders, will it be a guy or a girl, will they be like her, will they understand how important their gift is?

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, just 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. I know that sounds so bad. And I know I can’t,” she said. “But at least he’ll get his heart back.”

When a 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.”