Massachusetts heart transplant recipient's foundation offers underserved communities improved access to health care
Standing 6'8" it is impossible to miss Bouba Dieme as he weaves through the tables at the East Boston Senior Center. His Heart of a Giant Foundation has been providing health care screenings and heart health information at the facility for more than two years. In that time, members' blood pressure readings have been dropping.
"It means a lot to be able to help other people," he said, before asking a group of women whether they are eating well and exercising. "What we've noticed when we get into communities is that we have people who are more curious about their health. They start with blood pressure. But then, after a conversation, they will have more questions with the nurses."
One of those nurses, Patricia Nunn, is in another room greeting a woman who has arrived for her regular blood pressure screening. Patricia explains the process and reminds the woman that drinking coffee before the screening can affect the results. "If you have early intervention, you have better positive outcomes. So screening is very important," Patricia explained, adding that heart disease is still the deadliest killer in the U.S.
Working with Heart of a Giant fulfills her need to provide care to people in underserved communities. "The access is not equal across the board, and neither is health care," she said, reflecting on years of nursing experience.
That inequity, and his own journey as a chronically ill patient, motivated Bouba to create Heart of a Giant. It's been almost four years since his transplant at Brigham and Women's Hospital. Clearly, he is still thankful for the factors that influenced his successful outcome: access to good health care, resources (including mental health care), information, and support from family and friends.
He remembers, vividly, the shock of learning that he had heart disease as a very young man. Bouba was 25 years old when he came down with flu-like symptoms and chest pain. He was otherwise active, healthy, and living a full life. He had met Desiree who would, later, become his wife. The future he imagined was suddenly in question. He was diagnosed with left ventricular non-compaction cardiomyopathy, a rare, congenital heart defect. His doctor explained that his heart was too big. It was dilated, trying to pump more blood and in the process getting bigger. The condition would only get worse. "It was traumatic in hindsight. It was really depressing," he explains. He searched the internet for information but there wasn't much to find and even fewer relatable patient stories.
Medication helped for a while. But after he moved to Boston in 2016, now married with a little boy, his symptoms returned. Doctors determined he would need a surgically implanted mechanical heart pump. He relied on the LVAD 24 hours a day, seven days a week, plugging it into the wall to charge it at night. The LVAD kept Bouba alive for six years until he finally received the transplant in 2022. Among the most touching photographs taken post-transplant shows one of his sons listening to his new heart through a stethoscope. "I think our journey to the transplant is really what defined our next step," he said.
That next step was Heart of a Giant. In an effort to provide answers to other patients, Bouba had been writing a blog. He volunteered with the American Heart Association. Although he had moments of despair, he tried to process the negative emotions by taking an active role in his own health. Growing up, Bouba saw how his mother, a doctor, treated patients and how often their outcomes depended on their willingness to follow advice and make healthy changes. As a patient, he set an example for people around him. "I tried to be the emotional leader when I could be, a physical leader when I can be," he said. "I just try to lead in certain areas and that's kind of how I've been pushing it."
His Heart of a Giant foundation now serves 19 Greater Boston communities right now with plans to grow in 2026. It has received grants from the American Heart Association and CVS and works with community groups, municipalities, and research institutions. The event at the East Boston Senior Center also showcased a partnership with the City of Boston's Age Strong Commission.
Bouba says, in addition to screenings and education, one key to healthier communities is human connection; the camaraderie that develops when people encourage one another. The trust that grows between Bouba's team and the communities they serve also makes it possible for the foundation to connect people with doctors and additional care when necessary.
Bouba leads a full life. In addition to serving as the "Chief Inspiration Officer" at Heart of a Giant, he's a busy dad to his three sons, and leads public affairs, engagement, communications, and sustainability on energy infrastructure projects. He leads with gratitude for his health, his family, and the community he's helped create through Heart of a Giant. Looking around at the crowd at the senior center, he explains how the foundation's name also focuses his commitment to the people his foundation serves and the supporters whose donations make the work possible. "The people are all the goodwill, all the support, all the love we're getting," he said. "It must come from people that have a big heart—the heart of a giant."