Veteran looks to the future after receiving heart transplant
Tokoyo Carlton uses his second chance at life to build a legacy for his kids
"As a male, we don’t run to the hospital right away. We like to see if it will go away," Tokoyo said.
But it didn’t go away. In fact, his condition worsened.
Then living in Austin, Texas, Tokoyo went to the emergency room on New Year’s Eve. There he learned that fluid had collected in his lungs. The ER staff stabilized him, and ran tests. Then the doctor shared the news: Tokoyo had congestive heart failure.
"I was just dumbfounded. I didn't really know what that meant," Tokoyo said. "I’m a strong person, and I tough everything out. But that night I cried. All I thought about was that I wouldn’t see my kids grow up, and that I didn’t have anything to leave for them."
What is congestive heart failure?
In congestive heart failure, your heart doesn’t work at full capacity. With your blood flow reduced, you experience fatigue, swelling and shortness of breath. Other medical conditions may worsen.
Ejection fraction (EF) is the clinical measurement of how much blood your heart pumps as the left ventricle contracts. A normal EF is approximately 60 percent, which means 60 percent of the blood in the healthy left ventricular cavity is pushed out by the heart. When Tokoyo was diagnosed, his EF was 25 percent. Within three months, it was 15 percent — which meant his body was getting only one-quarter of the blood needed to keep him alive and healthy.
In August 2017, doctors implanted a left ventricular assist device (LVAD) into Tokoyo’s chest. The mechanism pumps blood from the left chamber of Tokoyo’s heart to the aorta and on to the rest of his body. Patients with an LVAD carry an external bag that holds a control unit and battery.
"I had to change the battery every 12-15 hours," Tokoyo said. "I was literally living off a battery." Despite the inconveniences of the LVAD, Tokoyo’s quality of life was reasonable, and he was no longer suffering from symptoms of heart failure.
It wasn’t enough though. In January 2018, Tokoyo joined 3,500 others on the U.S. heart transplant waiting list.
Multiple factors influence your time on the transplant waiting list, including disease progression. Toyoko thought he had at least a seven-year wait ahead of him. But three years later, he got the call.
It was 6 a.m. on Memorial Day 2021. Tokoyo’s phone rang. Still in bed, he let it go to voicemail. Then his dad, listed as a backup contact, called and told him it was the VA. They had a heart for him.
Within hours, Tokoyo was on a plane from Fayetteville, N.C., to Richmond. Just as quickly, he was in the OR.
"The coordination from Virginia to the VA in Fayetteville to the airport was seamless," Tokoyo said.
Tokoyo’s heart transplant team overcame several challenges associated with the complex coordination and surgery. Led by Dr. Dipesh Shah, chief of cardiothoracic surgery and surgical director of cardiac transplantation at the Central VA Health Care System (CVHCS), the surgery was performed at 349-bed McGuire VA Medical Center in Richmond. VCU Health has a longstanding academic and medical partnership with CVHCS.
For more than 60 years, CVHCS and VCU Medical Center have had a formal affiliation with VCU Health to provide veterans with the best available cardiovascular services. "As a result of our academic affiliation, the VA offers state-of-the-art referral care," said Dr. Edward Lesnefsky, chief of cardiology at CVHCS in Richmond since 2008 and interim associate chief of staff for research.
Unlike all other VA hospitals in the country, the McGuire VA Medical Center, located in Richmond, is the only VA that performs heart transplants and ventricular assist devices on-site.
Up and at ‘em right away
After a heart transplant, patients are expected to get up and start moving soon after their surgery.
"It was really tough on me. There were days I didn’t want to do it. But these guys pushed me to that next level, to really get things done and recover faster," Tokoyo says. "The nurses got me up. They don’t take ‘no’s.’"
"Mr. Carlton is a strong-willed person who likes to face his challenges head-on," said Shah, one of the many VCU faculty, medical students, and fellows who regularly visit CVHCS to treat veterans. "He never complained of anything …He had a very strong resolve to get better and provide a living example to other fellow veterans on how to deal with end-stage heart failure."
Shah remembers the surgery well. That morning, he’d done a well-known Memorial Day CrossFit workout called the "Murph," an intense routine honoring the late Navy Lt. Michael Murphy, United States Navy SEAL. "It was such a happy moment for me personally when Mr. Carlton, a veteran himself, received a gift of life on Memorial Day," Shah said. "It’s so rewarding caring for these patients who’ve done do much for our country."
Tokoyo spent one month at CVHCS’ main hospital at the McGuire VA before going home. These days, he has follow-up appointments every three months. While he could go the Fayetteville VA, he chooses to make the three-hour drive to CVHCS because he knows the nurses and doctors. Those trips often mean a myocardial biopsy to ensure his heart is functioning normally.
"I trusted in the system," Tokoyo said. "I trusted my doctors, and clearly they knew what they were doing."
Tokoyo’s second act: Leaving a legacy
Though still recovering, Tokoyo feels well. It’s his blended family, with six kids ages 7 to 18, that keeps him pushing. "Kids are why we do what we do," he said.
That includes a sales and marketing business. Tokoyo wants to grow his new business to the point that he can travel the world and work from anywhere. It’s an attainable dream, he said, stemming from his 2017 heart-failure diagnosis worry that, had he died right then, he would have left his kids with nothing.
"My mind is different, and in this second act in my life, I want to really get serious about business," he says. "I'm positioning myself to take my kids to see the world. I’m building a family business that my kids can take on. That’s my importance in life- those kids. And everything I do is to set them up to be in a better position."