Andrew Jones is rebuilding his body after his heart almost killed him.

“I couldn’t breathe well,” Jones recalls about a run in 2012. “It was just shortness of breath.”

Shortness of breath is normal for most of us, but this wasn’t normal for Jones, a high school football and track star from Farmington, CT, where he started at running back, sprinted the 100m, 200m, 400m, and anchored the relay team. Plus, he was deep into bodybuilding by the time he went to college. But on that fateful run, Jones, then 22, knew something wasn’t right with his body. He continued to work out intensely for two more years, and then his symptoms worsened.

“I felt really ill one night,” Jones says. “I had a fever, chills, shortness of breath—all intense flu symptoms.”

After a call to his doctor, Jones was put on a heart monitor for 24 hours. He was subsequently diagnosed with myocarditis, an inflammation of the middle layer of the heart wall. He was still hitting the weights though, to the point of becoming a competitive bodybuilder, all while his heart was slowly failing.

“But then I gained about seven pounds in two days,” he recalls. “My heart was in end-stage failure.”

After four months awaiting a heart transplant, Jones’ condition deteriorated. The doctors decided to implant a ventricular assist device (VAD), a mechanical pump that helps the heart move blood for his left ventricle.

On Aug. 21, 2015, Jones went under the knife. He woke up feeling stronger, but with a defibrillator/pacemaker sitting under the skin over his left pec, and a pump attached directly to his heart, all connected by a wire through his abdomen to a control computer and a battery—a five-pound, life-saving burden he must carry around 24/7, and which has a battery life of only six to seven hours.

“I carry around two emergency batteries and an extra computer,” he says. “I don’t know how much time I would have before my heart would begin to fail if the unit stopped working, and I’m not willing to find out.”

Jones recovered for two weeks at the hospital, walking and reconditioning his body for basic exercise and to get back to the gym, but constantly having to carry around the bulky bag made working out a challenge.

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“It does limit me in any moves that require being on my back, like bench. I need to put the bag on a stool,” he says.

Core training is out since it could disturb the site where the line goes into his body, and cardio is limited to a couple of sprints a few times a week. But to be fully healed and back to his old level of strength, Jones will need a heart transplant.

Jones’ diet was also affected. His doctors advise him to stay away from foods high in sodium and vitamin K because they can cause blood clotting.

When Jones was lying in the hospital contemplating death, he became aware of the need for a better way to get heart transplant candidates what they need, so he founded Hearts at Large, a nonprofit that increases awareness of organ donations.

A year after the surgery, Jones is still without a donor heart. He’s just one of more than 120,000 people in the U.S. waiting for a life-saving organ transplant. For him, finding a heart to match is tough because doctors have to take into account blood type, antibodies, size, age, and many other conditions to make it viable.

But he’s still in the gym five to six days a week, grinding out reps and getting stronger. He also continues to compete in bodybuilding.

Jones’ heart may have been taken from him, but he’s not letting that stop him from showing how much he truly has.