DeAnthonis Kelly’s world started to unravel when he came down with pneumonia in 2019 and got worse when he caught COVID-19 in 2020. Even after he recovered, Kelly found himself out of breath when he walked from the parking lot to his workstation at a steel plant.
So, in October 2020, his doctor referred him to a pulmonologist. This lung specialist prescribed an asthma inhaler and told him to return in two weeks.
“I kept telling her I couldn’t breathe,” Kelly recalled. When he went back, a different doctor had him do the 6-minute walk test to measure lung impairment. “My blood oxygen levels were so low that they put me on three liters of oxygen,” he said. “Even that didn’t help.” When he went back a third time, the pulmonologist referred Kelly to UAB Medicine.
The Talladega, Ala., resident initially had the UAB Medicine doctors perplexed. “They ran tests and thought it might be stress,” said Kelly, 38. “But after two days off, I went back to work, and the problem was still there.” When he called UAB, a nurse told him that she would reserve a hospital room for him.
A gene gone awry
The UAB team discovered that Kelly had a defective TTR gene. The TTR gene instructs the body to make a special protein that transports thyroid hormone and a form of vitamin A through the blood. The defective TTR gene causes abnormal proteins to be produced and build up in different parts of the body, including the heart. “I was told that they don’t see this amount of damage until someone is 60,” Kelly said. “My heart was so weak that it wouldn’t pump enough blood to my lungs, so my lungs were shot.”
According to Charles Hoopes, M.D., a surgeon with the UAB Comprehensive Transplant Institute (CTI), Kelly had heart failure from hereditary pulmonary hypertension. “He had a close relative who had had a heart transplant, so there was certainly a cardiac component as well,” Dr. Hoopes said.
Hospital pingpong
Kelly spent the next year in and out of UAB Hospital. He was approved for the transplant list in November 2021 and was in the hospital over Thanksgiving that year. “They wanted me to stay, but my grandad had died, so they let me leave on December 20,” he said. “They put me on intravenous milrinone with an infusion pump, along with 10 liters of oxygen.”
While Kelly was overjoyed to spend Christmas with his girlfriend, LaShonda, and his four children, he took a turn for the worse before New Year’s and was back at UAB. Torn between wanting to take care of his health and wanting to spend time with his family, Kelly left UAB right after the New Year.
He was back at UAB in late February 2022. “I’ll never forget Dr. Hoopes coming into my room,” Kelly said. “He told me that it was time, that I couldn’t go home anymore.” After a few days, Kelly had to go on extracorporeal membrane oxygenation (ECMO), a heart-lung machine that removes carbon dioxide from the blood.
“Mr. Kelly was in cardiogenic shock, and his heart couldn’t pump enough blood to his organs,” Dr. Hoopes said. “ECMO took over his cardiopulmonary support.”
Kelly took seriously his team’s instructions to keep moving. With the ECMO line near his left shoulder, Kelly brought his ECMO machine with him as he walked the UAB corridors, accompanied by a nurse. “Walking kept the fluid off of my heart and legs,” he said. “I wasn’t ready to quit, and having the nurses talk about how much I walked motivated me.”
A difficult road
During one of his walks, Kelly’s ECMO line came out of his chest. His medical team had to perform emergency surgery and reattached the line to his groin area, making it impossible for Kelly to walk. Thus began his nearly impossible wait. “It hurt so bad, and I got very emotional,” he said. “I’d look for Dr. Hoopes every day, and every day he’d tell me they didn’t have my heart and lungs.”
At one point, Kelly was ready to let go. “I told Dr. Hoopes that if I didn’t get a donor by Monday, they should take the ECMO port out of me,” he said. “I was ready to throw in the towel.”
Thankfully, Kelly received his donor match that weekend and had his surgery on April 16, 2022. After 12 hours of surgery and two days of sedation, though, Kelly found that he couldn’t walk or talk. “I couldn’t move my left side or feel my legs,” he said.
Dr. Hoopes says that Kelly likely had a mini stroke, called a transient ischemic attack, or TIA. “A micro-embolism isn’t common, but it’s not rare,” he said. “Most resolve relatively quickly over a few hours.”
Bouncing back
Kelly did bounce back and was up and walking on his own in less than a week. In fact, walking was his lifeline. Every day in the hospital, he walked at least four laps around UAB Hospital’s West Pavilion. Since he’s been home, Kelly walks a mile each day. “What you can do and what you can’t do is a mind thing,” he said.
Today, Kelly is dedicated to easing the way for others who are considering or awaiting transplant. Connecting with other patients has become his calling. “If someone had come to talk to me and walk me through this process, it would have been easier,” he said. “I want to be that person for others.”
Kelly recently spoke to three patients and has given permission to the UAB CTI transplant coordinator to give other patients his phone number. “I share my story and tell them not to be nervous,” he said. “Talking to them is a blessing.”
Kelly expresses profound gratitude to the UAB CTI team, including the inpatient nursing staff, physicians, physical therapists, and everyone who played a role in his recovery. But he is especially thankful for one man. “Dr. Hoopes is a very good doctor who wants the best for you,” Kelly said. “He tells you what’s wrong and tells you what’s right. I thank God that He put Dr. Hoopes in my life.”