MADAWASKA, Maine — Just six months ago Alyssa Thibodeau was on the national donor list and waiting for a heart transplant.
Today the 16-year-old Madawaska High School junior is healthy, loving life and is the star attraction in a classmate’s school project on the disease that had affected her old heart.
“I’m sort of the show and tell,” Thibodeau said with a laugh from her father’s home Monday afternoon. “It’s kind of cool.”
Thibodeau was diagnosed with cardiomyopathy — a deterioration of the heart muscle — more than two years ago and earlier this year placed at the top of the transplant list.
A suitable heart was located in early May, followed by the successful transplant at Boston Children ’ s Hospital, where Thibodeau had been staying since March waiting for a donor organ.
“She’s been doing pretty well overall,” said John Thibodeau, her father. “She’s pretty much back to her normal activity level and doing well in school.”
On the medical front, the news is just as good.
“With every checkup there is good news and everything is looking the way it should with no signs of rejection,” John Thibodeau said. “The pressure on all of her chambers of the heart [is] good and there are no adverse reactions.”
“I really feel pretty good,” Alyssa Thibodeau said. “But I’ve also been going back and forth to Boston a lot since May.”
On those trips, doctors at Children’s Hospital check the new heart for any signs of rejection and tweak the teen’s medication.
“The last appointment was at the end of October,” her father said. “We were at the hospital when [Hurricane Sandy] was about to make landfall, so they rushed us through so we could get back to my sister’s place where we were staying.”
At that most recent appointment doctors took a biopsy of the heart — literally a microscopic sample of the organ — to examine at the cellular level under a microscope.
It’s a somewhat invasive procedure during which the heart is accessed through Alyssa’s neck.
The next scheduled biopsy is in six months, and those appointments will eventually become an annual event.
“Yeah, this will be once a year for the rest of my life until they can find a better way to do it,” Alyssa Thibodeau said.
“She never complains about that or any of it,” said Jessica Thibodeau, her mother. “Even when she is feeling sick or nauseous.”
Alyssa remains on a variety of medications to help her new heart and body adjust to each other. Some of those affect her stomach and she is on additional medications to help deal with that.
“I think I’m taking more medications for my stomach than for my heart,” she said with a laugh.
Before the transplant Alyssa would tire easily and was unable to participate in all but the most gentle of physical activities.
“Since the transplant things have turned pretty quick for her,” John Thibodeau said. “We noticed an immediate difference in her overall energy level and saw a lot more color in her cheeks.”
“I’m really not as tired or get out of breath as fast as I did before the operation,” Alyssa Thibodeau said. “But I still get out of breath faster than all of my friends.”
Her level of stamina will continue to rise, however, her father said.
Now that the surgery is behind them and the family has had time to reflect on its impact, there is a lot of gratitude and emotion floating around the Thibodeaus.
“It’s almost like disbelief now that it’s over,” Jessica Thibodeau said. “When [the transplant] happened, it was really fast and no one really had time to think about it [and] now we look back and it’s like, ‘Oh my God, we’ve been through this amazing thing.’”
At the same time, the family knows the miracle that saved their daughter did not come without some very human cost.
“When you are waiting for the organ, of course, every parent prays their son or daughter gets a heart, but then you have to look at the flip side,” Jessica Thibodeau said. “I am so grateful to the parents who made this possible and if they could see Alyssa today they would know their child lives on with every beat of Alyssa’s heart.”
Should she desire, a year after the transplant Alyssa Thibodeau can write a letter to the donor family that will be delivered via the donor agency. That family, in turn, can decide if they want to reply or even meet the girl whom they had a direct hand in saving.
In the meantime, Alyssa and her new heart are getting to know each other.
“Right after the operation I started craving chocolate,” she said. “And before that I never liked it. Now when I see it, all I want is to eat it.”
Such newfound cravings are not unusual, Jessica Thibodeau said, adding that there is anecdotal evidence heart transplant recipients develop likes or dislikes similar to those of the donor.
Her parents have no doubts their daughter will make a full recovery, something her father said is helped greatly by her lifestyle.
“She follows a vegetarian diet and was always one to watch what she ate,” he said. “And her attitude is really good [and] she acts as if nothing unusual ever happened to her.”
If Alyssa has any regrets, it’s what the surgeons forgot to do during the four-hour transplant procedure.
“They were supposed to take a picture of the old heart for me,” she said.
“Things were probably pretty busy in that operating room at the time,” her father pointed out.
“All they had to do was push a button on a camera,” she shot back with a laugh.
Her community continues to rally around the teenager, and Jessica Thibodeau said it’s hard to go anywhere without being asked about her daughter’s progress.
Thinking on it, Alyssa Thibodeau said, “All I really would want to tell people is, ‘Thank you.’”
That got two big thumbs-up from the teen.
“Oh yeah, that too,” she said. “All you have to do is make a little check on a box to be a donor. It’s so simple.”