MADAWASKA, Maine — In a way, it’s a bit ironic that Alyssa Thibodeau finds herself at the top of the heart transplant list, given the Madawaska teenager displays more heart and grit than many adults in similar situations.
On Friday, Thibodeau, 15, was packing for the long drive south to Boston the next day, where she was slated to check in at Children’s Hospital for what could be a very extended stay.
“Once she’s down there, it could be four hours to 11 months before she gets a new heart,” her mother, Jessica Thibodeau, said. “After that, she will need to be in the Boston area for three to six months for follow-up.”
Two years ago, Alyssa went into heart failure and was immediately airlifted to Maine Medical Center in Portland, her mother said.
At the time she was diagnosed with cardiomyopathy, a deterioration of the heart muscle, and a leaking mitral valve within the heart and transported to Children’s Hospital in Boston for lifesaving surgery.
Doctors placed a special ring within the damaged valve and kept a close eye on the Madawaska girl over the next two years.
“We were in Boston for a month and after we came home [Alyssa] has been on medications and had to go to follow-up appointments in Boston ever since,” Jessica Thibodeau said.
It was on one of those visits last October doctors saw something they did not like — Alyssa’s heart function was decreasing and by January the Madawaska High School sophomore was a candidate for a heart transplant.
“As soon as she gets to Boston and is undergoing the necessary IV treatments to prepare her, she’s going to be at the top of the transplant list,” Jessica Thibodeau said.
Depending on how — if at all — she reacts to that treatment, Alyssa will be able to wait for a suitable donor heart at a relative’s home in the Boston area. Otherwise, she will be in the hospital the whole time.
Tests, extended hospital stays, four hours of surgery, more tests and treatments would seem an awful lot to pile on a 15-year-old’s plate.
But what is really bothering Alyssa?
“They won’t let me keep my old heart,” she said. “I mean, it’s been with me for 15½ years, I’m kind of attached to it.”
Federal laws prohibiting the transport of human organs across state lines ended her scheme to bring the old heart home and display it in a glass jar — perhaps with green mood lighting.
As for the specter of that surgery, Alyssa is dealing with that in a style that can best be described as equal parts pragmatism and irreverence.
“It’s just four hours of surgery,” she said. “It’s really less complicated than the valve surgery I had — they just hack out the old heart and put the new one in.”
She said the choice was already made for her.
“It’s what I’ve got to do if I don’t want to die,” she said matter of factly. “It was not a hard decision.”
Jessica Thibodeau said that during the operation her daughter will be on a heart and lung machine to keep the blood flowing throughout her young body.
It’s been a long haul for the family, beginning with that emergency transport to Portland two years ago.
“She was airlifted out at 2 in the morning,” Jessica Thibodeau said. “I was in a car riding down with a rosary in one hand and a rosary in the other hand praying the whole way down.”
Since then the family has experienced an outpouring of emotional and — more recently — monetary support from friends, family, medical staff and perfect strangers.
While insurance is covering the direct medical costs, things like constant trips to and from Boston and lodging while there are at the family’s personal expense.
“I’ve started to feel like I’ve spent half my life in a car,” Alyssa joked.
Friends have started an online donation site at http://www.gofundme.com/gcus0, where contributions already have exceeded $2,000, coming from around Maine and overseas.
Jessica Thibodeau wants to spend as much time as possible at her daughter’s side and be present during the surgery, as do her younger brother Christopher and their father, John Thibodeau.
As a medical technician, she said all of her vacation time has been long used up, so any time she now takes off to be with her daughter comes at the expense of a paycheck.
“I’m not even worrying about that now,” the elder Thibodeau said. “Money is just a material thing — I just want to make sure I can be there with her.”
Right now Alyssa — a straight A student — is taking an indefinite break from school and says she enjoys her time writing in a diary, reading and “chilling out with friends.”
An avid texter, she also hopes to break her own record of 1,000 texts in a single month while in Boston.
“Good thing you have that unlimited plan on your phone,” her mother said.
As hard as the situation is, Jessica Thibodeau said it is not a complete surprise, since heart disease does run in the family.
In 2009 she had open-heart surgery to replace a valve and her own mother had two open-heart surgeries.
“I am so proud of Alyssa and how she is dealing with all this,” her mother said, adding, “But we do have very different coping skills.”
“Yeah, I cope with humor,” her daughter said.
No parent, Jessica Thibodeau said, wants to see their child go through what Alyssa is facing.
“Don’t worry mom,” she said. “I have it under control.”
The family is not facing it alone, however.
“We are such a small community but the hearts are so big around here,” Jessica Thibodeau said. “We had no clue this ever would have come about [and] I have no words to describe it,” she said of the fundraising efforts on her daughter’s behalf.
Helping her pack on Friday were Alyssa’s longtime friends Riki Demoranville, 17, and Amber Ouellette, 15.
“She is probably one of the strongest people I know,” Demoranville said of Alyssa. “All of this really hasn’t hit me yet, but it probably will when I have to say goodbye.”
Friends since kindergarten, Ouellette said the whole situation is “kind of scary,” adding Alyssa is “so brave and, well, a little insane.”
“No, she’s completely insane,” Demoranville piped in as all three girls began to laugh. “She’s like on that line between genius and insanity.”
Technology will allow Alyssa to maintain contact with friends back home through social networking sites like Facebook and video chats via Skype.
“But I love to get letters,” she said. “It totally makes my day.”
Cards, letters and donations may be sent care of Jessica Thibodeau, 494 Riverview Street, Madawaska, Maine, 04756.