On Christmas Eve 2011, Porter Lyons was spending a quiet holiday playing board games with his family in Garrettsville, Ohio. He had been fighting what he thought was a bad cold or pneumonia. When it got so bad he couldn’t breathe anymore, he knew it was something worse.
He told his father, Doug, that he wanted to talk to his girlfriend, Abby, right away. Doug could sense just how wrong things were as he watched his son try to steady himself on a chair and reach up to his throat, trying to open an air passage that seemed shut. Porter’s heart was beating alarmingly fast.
The symptoms were too much to ignore. Christmas would have to wait.
The family took Porter — a senior at James A. Garfield High School and a straight-A student— to the local EMS facility, where the emergency team quickly decided to transport him to Robinson Memorial Hospital in Ravenna, Ohio. There, ER specialist Brian Adams, MD, stabilized his condition and performed an ultrasound that showed that Porter’s heart was dangerously enlarged. It was about twice the size of a normal heart for someone his age, and his lungs had filled with fluid.
Time was short. Before long, Porter was on the first helicopter ride of his life — a medical transport flight to Cleveland Clinic.
Cardiomyopathy and a malfunctioning heart
Porter was suffering cardiomyopathy; his heart was overcompensating and had begun to malfunction. There are several different types of cardiomyopathy, but heart transplant surgeon Nicholas Smedira, MD describes Porter’s case as dilated cardiomyopathy, a form that is sometimes mysterious but likely inherited.
The scene was all too familiar to Doug and his wife, Karen. In 1987, Doug was diagnosed with cardiomyopathy and received a heart transplant at Cleveland Clinic. Back then, the disease was diagnosed as viral. Genetic testing was not nearly as advanced then, and Doug’s doctors had no reason to believe the cardiomyopathy was genetic.
Now, 25 years later, he found himself watching his son being carried off in a helicopter, and a strange thought occurred to him.
“There he goes; he’s going on his adventure,” Doug thought.
Adventures were nothing new for Porter, an active Eagle Scout who had led his peers through the wilderness on strenuous treks. This one would be different, but no less strenuous.