When Camille Frede, 28, saw Antonio Coppolino III, MD, MSc, then a fellow in the Division of Thoracic Surgery, enter her patient room at the Shapiro Cardiovascular Center earlier this year, her heart skipped a beat as she recalled their last conversation several weeks prior.
“The next time I see you will be when we get ‘the call,’” Coppolino, now an associate surgeon in the division, had told Frede and her family at the time. “The call” would be the care team’s notification that a matched donor heart and lungs were available for transplantation. Frede received her transplant in March following two months of hospitalization at the Brigham. The 10-hour surgery was completed by a multidisciplinary team comprising nearly 60 staff members.
The rare, complex surgery – which requires the donor heart and lungs to be transplanted simultaneously – was the first performed at the Brigham in more than two decades.
For Frede, the transplant cured pulmonary hypertension, a life-threatening condition she had lived with since age 4. It causes high blood pressure in the arteries of the lungs and severe breathing problems. The condition worsens over time, progressively restricting the flow of oxygenated blood and potentially leading to heart failure. After trying numerous therapies over the years, Frede and her family grew worried as her health continued to decline.
“We would go on family bike rides, and I would be blue,” Frede said. “We were always waiting for another tragedy to happen.”
In February, she began receiving inpatient care at BWH. Within a month, she was treated with high-flow oxygen and extracorporeal membrane oxygenation (ECMO), a machine that pumps blood and oxygen for a patient when their own heart and lungs can no longer do so adequately. The therapy sustained Frede while she waited for suitable donor organs to become available.
Patients whose pulmonary hypertension worsens to the point of requiring organ transplant normally undergo a lung transplant only, explained Hari Mallidi, MD, FRCSC, section chief of Transplant and Advanced Lung Diseases in the Division of Thoracic Surgery.
But Frede also was born with an atrial septal defect, often referred to as “a hole in the heart,” which drove the need for both a donor heart and lungs, Mallidi said.
“Even though her heart function was OK, we couldn’t technically make all the connections in the right places without changing everything,” he said.
‘A Whole New Chapter’
Now six months post-transplant, Frede says every day she feels stronger and that a world of possibilities has opened up. She is hiking, biking, doing yoga and, for the first time in her life, running.
“Every time I’m doing one of those things, I pray and think of my donor and their family. Without them, none of this would have been possible,” Frede said. “It’s been an amazing gift.”
Aaron Waxman, MD, PhD, director of the Brigham’s Pulmonary Vascular Disease Program, who has treated Frede for the past 10 years, is thrilled to see her progress.
“It’s a whole new chapter of her life,” Waxman said. “My expectation is she’s going to have a completely new, healthy life.”
Frede, who recently obtained her bachelor’s in nursing, is now evaluating advanced training programs to fulfill her dream of becoming a nurse practitioner to help others – a goal inspired by her mother, Nancy, who is also a nurse. In addition, Frede hopes to dedicate her time to raising awareness about pulmonary hypertension and the importance of organ donation.
While the past year was challenging for Frede and her family, they said the remarkable, compassionate care they received at BWH helped them weather the stress and uncertainty. In ways big and small, their Brigham care team lifted their spirits and provided a supportive environment for healing.
Throughout her life, including during her hospitalization, Frede sought to remain as active as possible. While she was on ECMO, care team members helped her obtain a stationary bike for her hospital room and played YouTube videos of scenic routes while she pedaled. In the months following discharge, Frede completed several bike rides around New England with Waxman and her exercise physiologist, Julie Tracy, of the Division of Pulmonary and Critical Care Medicine.
Nancy recalled the moment she and several Shapiro nurses shed tears of joy as they watched Frede listen to her own heartbeat with a stethoscope for the first time post-transplant. She said the experience marked the first of many wonderful moments to come.