When Roberto DeJesus Perales visited his cardiologist, he was rundown, out of breath and had swollen feet – a feeling he’d known before in his young life.
“I would get weak. I would get fatigued. I would get short of breath,” he said, recalling the time a few years earlier when he experienced heart failure at age 23. Roberto became so ill then that he needed a heart transplant. He had one in 2016, and he returned to an active life.
Before long, his mother, Maricela Garcia, in her 40s experienced chest pain and was hospitalized. Genetic tests revealed both mother and son have a rare inherited condition known as Danon disease, which can cause heart failure. About two years after her son’s transplant, she, too, underwent a heart transplant at Baylor St. Luke’s Medical Center in Houston.
Fast forward to 2023: Roberto’s heart was again struggling to work. It became clear to doctors that the 30-year-old needed a second heart transplant.
“His heart wasn’t beating much – low functioning, low blood supply,” said Gabriel Loor, M.D., surgical director of lung transplantation and a cardiac surgeon at Baylor St. Luke’s.
Loor had performed Maricela’s heart transplant. The family was so pleased with his medical skill and his ability to communicate in Spanish – Maricela only speaks Spanish and understands limited English – that when Roberto needed his second heart transplant, they hoped Loor would be the surgeon.
“I already told my cardiologist that I wanted Dr. Loor to do mine,” Roberto said. “We could understand each other. He would be on top of everything.”
On Nov. 17, 2023, Loor performed Roberto’s transplant, assisted by Dr. Kenneth Liao, chief of cardiothoracic transplantation and mechanical circulatory support at Baylor St. Luke’s and associate professor of surgery at Baylor College of Medicine. It was an unusual scenario with the same surgeon conducting heart transplants on a parent and a child.
Ajith Nair, M.D., Roberto’s cardiologist, explained that Danon disease derives from a mutation of the X chromosome. The genetic disorder can show itself through skeletal muscle weakness, intellectual disability and cardiomyopathy, or a weakening of the heart muscle. With Roberto and his mother, heart disease was the symptom that appeared.
Loor, who is also an associate professor of surgery, cardiothoracic transplant and circulatory support at Baylor College of Medicine, worked along with other St. Luke’s physicians in performing Roberto’s transplant. Each member of the multidisciplinary surgery team brings a technical expertise to the operation so the transplant goes as smoothly as possible, he said.
After the transplant, Roberto felt better right away. Within two days he was sitting up, taking selfies and heading toward an anticipated complete recovery. His family members were there with him happy about his successful outcomes.
“They were very optimistic, and he was so excited to have another chance,” Loor said. “You have to persevere and you have to maintain hope. He was really an inspiration for everybody.”
About a month after the transplant, Roberto was recuperating at home and experiencing no complications.
“I’m doing great, just day by day,” he said. He planned to rebuild his strength through physical therapy and eventually return to his work in the oil field and his usual activities in his community of Sweeny – playing soccer and DJ’ing at friends’ gatherings.
Getting back to that point was a tough road. Four months before the second transplant, when Roberto was feeling ill and saw his cardiologist, Nair, the doctor had him immediately admitted to the hospital. Medical tests showed a deteriorating condition.
Doctors placed him on a balloon pump to help the blood flow in his heart while he awaited a donor heart.
Potential donor hearts were evaluated by the medical team, and doctors had to wait for exactly the right match for Roberto’s antibodies and body size. The concave structure of his chest, a condition known as pectus excavatum, added to the challenges both before and during the surgery, Loor explained.
A donor heart became available after a six-week wait. Roberto, who had cried before his first transplant when he was told a healthy heart was coming, said this time he remained calm, his mother and father at his side. He was able to relax and sleep the night before the surgery.
“I just said in my mind, just leave it to God,” he said. “I was already ready.”
Roberto said he thinks about the donor’s gift of life and how he intends to take care of his new heart. His thoughts often turn to his faith. “God is always with me,” he said.
He said he is also grateful for the medical care he received at St. Luke’s.
“They have good teamwork,” he said. “I want it to be known that I’m thankful for the staff, the nurses, doctors and surgeons at St. Luke’s, and, well, not only am I, but my mom and all my family.”