Since 1988, just over 1,000 people have undergone heart-lung transplants in the US
Spencer Kolman needed the surgery due to pulmonary fibrosis caused by cancer treatment
“I want to do more stuff,” Spencer Kolman said. His voice was a whisper, a painful-to-hear rasp across the telephone line.
“I’m a Boy Scout, so I want to go back and get my Eagle Scout and do … the more physical activities that I had to basically stop doing because I couldn’t keep up,” the 15-year-old said.
“I want to join the school band. I want to get back into playing the trumpet. … I did trumpet for four years, and then in eighth grade, it got tough keeping up,” he said.
“Keeping up” is Spencer’s constant refrain. Despite his best efforts, keeping up had become impossible.
“One of my friends from school and I did a radio show. Eventually, we started having to do more of just playing music because I would get out of breath,” he said.
His father’s words echo Spencer’s memories: “He needed a mobility scooter to go around school. He could only go to school for half a day because of how exhausted he was. He had to live in his room, because even getting up and going to the bathroom took so much energy out of him.”
Meanwhile, Spencer continues his litany of activities: He wants to return to his theater group. He wants to go camping. He wants to hike.
Why are his deferred dreams suddenly possible?
On November 29, Spencer received a heart-lung transplant at St. Louis Children’s Hospital’s Heart Center – the only pediatric heart-lung transplant surgery performed in the United States that year.
“He’s like a brand-new kid,” Ken Kolman said. “It’s totally amazing.”
Some patients make their way through a diagnostic odyssey in which they are treated for the wrong disease until their real problems are detected. Other patients make their way through a specialist odyssey: They know what’s wrong, but they cannot find a doctor who will treat them.
The Kolman family journeyed down both paths.
Their diagnostic odyssey began more than four years ago, in January 2013.
“I was playing ice hockey, and I collapsed on the ice because I was getting short of breath,” Spencer said. “Then, I basically collapsed out of exhaustion.”
The family pediatrician thought Spencer had asthma.
“So they gave me an inhaler to try, and I tried that, and it didn’t make much of a difference at all,” Spencer said. “So then we went to the University of Chicago to see what they thought.”
The verdict was walking pneumonia. This time, he was given antibiotics.
“That didn’t really do anything either,” Spencer said. At this point, more tests were done. “Eventually, they came to the conclusion that it was pulmonary fibrosis.”