Wait for a new heart continues for Madawaska’s Alyssa Thibodeau

By Julia Bayly, BDN Staff
Posted April 14, 2012, at 5:36 p.m.

MADAWASKA, Maine — When Alyssa Thibodeau learned earlier this year she was a candidate for a heart transplant, she and her family were warned that not only could the wait for a new heart stretch out for months, there also could be a false alarm or two along the way.

The 15-year-old was diagnosed with cardiomyopathy — a deterioration of the heart muscle — two years ago and earlier this year was placed at the top of the transplant list.

A month ago she checked into Children’s Hospital in Boston to begin the wait for a new heart, and within a week the family got their first taste of one of those false alarms.

“We got a call at 11:45 at night on a Monday telling us they had found a heart and the tests from that heart meant it looked really good,” Jessica Thibodeau, Alyssa’s mother, said. “They started prepping Alyssa for surgery that morning.”

Boston is a nine-hour drive or 1½-hour flight south from Madawaska, so Jessica and Alyssa’s father, John Thibodeau, knew they had to leave immediately to be there for their daughter’s surgery.

“I took off to fly out of Presque Isle that morning and her dad drove down by car,” Jessica Thibodeau said. “We knew we would not be there before she was asleep for the surgery.”

It was only when Jessica Thibodeau landed in Boston that she got word from the doctors the heart meant for her daughter was unfit for the transplant.

“They saw the heart was discolored,” Jessica Thibodeau said. “They did not want to take a chance using a bruised heart.”

Because they live so far from Boston, John Thibodeau said, he and Jessica are notified the moment a potential heart is located so they can begin the process of traveling the 350 miles to be at their daughter’s side.

Alyssa, meanwhile, had been put under anesthesia and had the breathing tube installed for what she expected was to be four hours of transplant surgery.

“She was really groggy when she woke up,” Jessica Thibodeau said. “We had to tell her three times she did not have the new heart.”

Alyssa says she has little memory of waking up but recalls later that night being upset the surgery did not go as planned.

“But I understand why it was done,” she said. “I’d rather have that happen five times than to have a heart put into me that isn’t completely right for me.”

Talking with her daughter that next day, Jessica Thibodeau said, she could see the disappointment.

“She kept telling me she was OK with what happened,” Jessica Thibodeau said. “But as a mother, I saw the disappointment.”

John Thibodeau shared that disappointment, but, like his daughter, wants only the best organ for the transplant.

“Where she is responding quite well to the medications they can be a little more choosy and go for a heart that is 100 percent,” he said.

One thing Alyssa definitely remembers about learning a new heart was on the way was asking her medical team for one last serving of a favorite food.

“I was begging my doctors to [let] me eat some grapefruit,” she said. “It would be my last opportunity to have some [because] it would interact with one of my post-transplant medications.”

Now the waiting game continues for the family.

“When I found there was a heart coming, I had mixed emotions,” Jessica Thibodeau said. “My daughter was going to get a heart but there was a family out there somewhere grieving, so I told Alyssa to say a prayer thanking God for what he is giving you.”

Once the perfect heart is found and the transplant complete, John Thibodeau said, he would be more than willing to meet the donor’s family.

“If they want to know Alyssa, we would like to meet them and express our gratitude,” he said. “I would like to learn more about who the donor was as a way to honor [his or her] life and acknowledge what they have done to help save my daughter.”

Though back on her feet and doing well, according to Jessica Thibodeau, Alyssa does have to remain in Children’s Hospital so her medical team can monitor her reactions to the presurgical drugs she is receiving.

“One of the medications can cause an irregular heartbeat,” Jessica Thibodeau said. “She does have her pacemaker and that can snap it back to where it should be [and] they are tinkering around with the medications.”

To help break up the monotony of hospital life, her parents try to visit twice a month on alternate weekends and, when practical, bring along one of Alyssa’s friends from Madawaska.

“She’s also doing physical therapy, academic tutoring and learning some relaxation techniques,” Jessica Thibodeau said.

“She’s doing quite well and responding to the medications quite well,” John Thibodeau said. “In fact, overall her physical condition is better now than when she first went down.”

Alyssa also remains on a highly regimented, low-sodium diet, but several weeks ago when her weight dropped lower than doctors considered optimal, she was told she could eat whatever she wanted, regardless of salt content.

“They gave her a $25 gift certificate and she went out and got Doritos and ramen noodles,” Jessica Thibodeau said, adding her daughter did add a salad to that menu later that night.

“Those were the saltiest things I could think of, and I love Doritos and noodles,” Alyssa said. “I’m not able to eat them often, but I jump at the opportunity to eat anything salty that I love.”

Her parents agree that spending as much time as possible with their daughter while she is in Boston is crucial.

John Thibodeau, who works full time with the Army National Guard in Caribou, is using accumulated vacation time and holidays for his visits and plans on being in Boston for the four to five weeks of Alyssa’s post-surgical recovery.

“My own unit and the higher command have been very supportive,” John Thibodeau said. “They understand and guys at the armory and from units downstate have all chipped in to help out.”

Jessica Thibodeau long ago used up any of her vacation time traveling back and forth to Boston, but is not letting that stop her from being there for her daughter.

“I call her every day and tell her I love her,” Jessica Thibodeau said. “Of course, she is a teenager and we are dealing that.”

The family has received tremendous support from the community with fundraisers and offers of help, and the Thibodeaus say they are overwhelmed with gratitude.

At the same time, they are impressed with the level of maturity displayed by their daughter.

“She never plays the sympathy card and just has her own perseverance,” John Thibodeau

said. “With both children I tried to reinforce positive things and to be open-minded.”

Despite the somewhat typical and — at times — bumpy mother-teenager dynamics, Jessica Thibodeau remains impressed by her daughter’s optimism and is looking to the future.

“I know I can’t fast forward her life,” Jessica Thibodeau said. “But I can’t wait to see how she will turn out because I know she will want to be someone who will help people.”

http://bangordailynews.com/2012/04/14/news/aroostook/wait-for-a-new-heart-continues-for-madawaskas-alyssa-thibodeau/ printed on December 26, 2014