He wears his heart on his… back?

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Last winter, Deyven Ferreras started to feel a bit weak. He was extra tired during the day and had trouble catching his breath before falling asleep. The 18-year-old from Providence, Rhode Island, attributed the weakness to the fact that he wasn’t exercising as much as he did in the warmer months, when he regularly played basketball with his friends. Over spring break, however, the situation grew dramatically worse. Deyven felt nauseous and assumed he had the flu — until a regularly scheduled doctor’s visit revealed he was actually in heart failure.

Deyven’s mother rushed him to the nearest hospital for a full cardiac evaluation. He was admitted and stayed for five days until he was well enough to be discharged home. Unfortunately, his symptoms worsened over the weekend, and the doctors wanted to see him first thing Monday morning. “I had an AP science exam that morning,” Deyven said. “They told me to miss it, but I really wanted to take that test…I went to the hospital right after.”

Despite his attempts to attend school every day, it became evident that Deyven needed the specialized care of the Boston Children’s Heart Failure/ Heart Transplant Program, one of the largest heart transplant programs in the country. The program’s transplant team is comprised of various specialists who have pioneered advances in heart failure treatment and surgery. Deyven’s cardiologist, Christina Vanderpluym, MD, director of the Mechanical Circulatory Support Program, told him that he would likely need a heart transplant.

The typical candidate for a heart transplant in Deyven’s age range can wait more than a year for a donor heart. This used to mean living life in a hospital room awaiting the procedure — and this is still the case for children under 33 lbs. (15 kgs.).

But newer types of ventricular assist devices (VADs), or mechanical pumps that support heart function, make it possible for kids with heart failure to be discharged home and to do virtually everything that kids with functioning hearts can do. Patients with VADs go to school, play sports and work summer jobs. “Really, the only thing they can’t do is swim, because the pack can’t be completely submerged in water,” explains Vanderpluym. She told Deyven that he was a good candidate for a VAD as a bridge to eventual heart 20141119_DeyvenHeart-23transplantation.

Within 24 hours of the device implant, Deyven was up and walking around the ward. Vanderpluym was blown away by his resilience. His high school graduation was three weeks away, and he was determined to walk across the stage to accept his diploma. He had plans to attend Bentley University in the fall, where he would study accounting and live on campus.

Deyven admits that living with the VAD wasn’t easy at first. His main frustration was the nosebleeds he would get while he was adjusting to the anticoagulation medications prescribed to prevent blood clots. On his high school graduation day, Deyven’s nose started bleeding just hours before the ceremony. With 45 minutes to spare, the Cardiology Anticoagulation Monitoring Program, also led by Vanderpluym, mobilized the local emergency department to apply a special clotting solution to Deyven’s nose. His family—aunt, cousins, sister, mother—pulled together and navigated through dense downtown traffic. “We barely got there on time,” says Deyven, but he was able to walk across the stage and receive his diploma.

“She [Vanderlpluym] kept telling me it would get better, and it did! I haven’t had a nosebleed since June. It’s really fine. I feel just as normal as I did before.”

Over the summer, Deyven and his mother had the opportunity to meet another VAD patient and his parents. Deyven even talked to someone who was a candidate for the device, to share his personal experience. “I would gladly talk to others about it and tell them how great it is,” he says.

Big man on campus

While Deyven is not the first person with a VAD to attend college, he is the first person ever to live on a college campus with the device. “As the first college to ever house a student with a VAD, Bentley was understandably concerned about Deyven’s safety,’” says Vanderpluym. “But the university’s administrators were so committed to him—they really came through with a strong and coordinated effort to make the appropriate accommodations.”

Before Deyven moved on campus, VAD coordinator Beth Hawkins took great lengths to ensure the university was 100 percent prepared to assist him in the event of an emergency. She not only met with the nurse and health services but also educated the residence director of Deyven’s dorm, the university’s legal team and even individual professors to make sure all the bases were covered.  Social worker Michelle Corf has also played a large role in supporting Deyven during his time at school.

Deyven says the university has been great at providing him with all of the resources he needs. He has been able to take charge of his condition—the dressing changes, the battery checks, the medications— and he says his roommate has been very supportive. Deyven also communicates regularly with Vanderpluym and the VAD team at Boston Children’s, who are there for him whenever he has questions. Vanderpluym welcomes phone calls, emails and text messages from her patients at all hours, and says she hopes patients view her as someone they can trust, not just someone who dictates lifestyle restrictions and rules.

20141119_DeyvenHeart-5“I don’t mind when questions arise at all hours of the day that interrupt my life,” she says, “I just want to make sure these kids and adolescents have the best quality of their life possible. That’s what this is all about.”

Thinking outside the box and internalizing the patient experience helped Vanderpluym and her team find solutions to issues that detracted from a patient’s quality of life.

For example, the traditional way to connect a patient with a VAD is a bulky over-the-shoulder bag with a pouch around the waist. Vanderpluym knew there must be a way to let patients move around more freely. With input from VAD patients and families, she hunted around Amazon.com and found a compact, body-fitting CamelBak that fit the bill. “Some boys wear shirts over the backpack, and you can’t even see it,” she says. “When Deyven plays basketball, he just wears the pack really tight.”

That’s right. Deyven still plays basketball.

“I try not to let what happened to me dictate how I live my life,” he pronounces. “I learned something about myself from this experience. I learned that I am responsible, and I can manage anything.”

 

Learn more about Boston Children’s Heart Failure/ Heart Transplant Program.