Young Man With Autism Perseveres Through Failing Heart

Nothing prevents James Papenfuss from taking his medication five times each day. The 28-year-old, who is a high-functioning individual with autism spectrum disorder, will even interrupt playing his favorite sports when the alarm goes off on his phone. That means a brief pause from whatever athletic endeavor he’s competing in that day. The list can be quite long, from indoor adaptive soccer, flag football and baseball, to bowling, golf and basketball.

“James is diligent about his medicines,” says Jim Papenfuss, who with his wife, Becky, adopted James and his older brother, Brandon, when the boys were toddlers. “When he was diagnosed with heart failure, it could have been life-ending. Medication has worked phenomenally well in giving James back his life.”

In June 2021, at the age of 26, James suddenly experienced severe swelling in his feet. Seeing his son unable to get his shoes on for his daily work shift at a local brewery, Jim immediately drove him to the emergency department at Cleveland Clinic Avon Hospital. Shortly after, his care team transferred him to cardiac specialists at Cleveland Clinic Fairview Hospital.

James’ heart was double its normal size, and his ejection fraction was just 9%. A healthy percentage is 50 to 70%.

Genetic testing later confirmed James has a predisposition for developing heart failure. However, a diagnosis doesn’t necessarily mean a heart transplant, as James and Jim discovered when they met with Randall C. Starling, MD, a Cleveland Clinic cardiologist with expertise in advanced heart failure.

“I think it’s a very common misconception that patients with severe heart failure will need a heart transplant,” states Dr. Starling. “That may have been true 30 years ago, but it’s not true today.”

He added for between 20 and 40% of patients, the heart’s condition will vastly improve by using the right combination and dosage of heart medications that have become a standard form of treatment. In about 10% of patients treated with the drugs, the heart will return to its normal function.

Fortunately, that’s exactly what happened to James. Over the ensuing two-and-a-half years, with the right combination of medications and cardiac rehabilitation, James has seen his ejection fraction soar upwards to 54%. Besides dutifully taking his medicine, James also watches his diet and pays regular visits to Dr. Starling as well as his family medicine physician, Daniel Allan, MD.

By showing steady progress, James has been able to return to work and sports. Says Jim, “Sports are such an important part of James’ life. He’s either watching them or playing them, and to be able to do all of this again is just terrific for him.”

“I’d definitely have to go with basketball as my all-time favorite,” says James, with a wide grin as he lists his favorite players, including a few from the Cleveland Cavaliers.

Dr. Starling says, “When you talk to James, it just makes you feel good because he's such an upbeat guy. There's always a smile on his face, even when he was so sick initially and was told he might need a new heart. He never gave up."

Jim adds his son’s life has been touched by Cleveland Clinic on several occasions. When James was a child, neurosurgeons performed a procedure on his brain that stopped the persistent occurrence of debilitating intractable seizures. He underwent physical and occupational therapy at Cleveland Clinic Children’s Hospital for Rehabilitation. Later, Cleveland Clinic Children’s orthopedic surgeon, Ryan Goodwin, MD, corrected a congenital defect in his feet and ankles. James was able to shed leg braces so he could run.

“I even kicked a field goal!” James exudes –an accomplishment Jim notes likely would never have happened if not for the restorative surgery.

Dr. Starling is delighted how James and his father have meticulously managed his heart condition with very careful attention to detail. He also lauds the devotion Jim has constantly shown his son. “Anytime you get to see James with his father, you will end up smiling. They are electrifying people in an unassuming way. Their enthusiasm and mutual admiration are quite special.”

Similarly, Jim and James are grateful for the lifelong support of James’ family, friends and care teams. Notes Jim, “James is a phenomenal young man and has a love for life. We’re so fortunate he gets to live it to the fullest again.”