When a Mayo Clinic surgeon showed a short film featuring the drummer of the heavy metal band Extractus at the Minneapolis Convention Center last week, he probably wasn’t hitting the band’s target audience.
They were suit-clad doctors, in town for the annual convention of the American Association for Thoracic Surgery. They seemed pretty button-down for the drummer’s exuberant style, but they were impressed nonetheless.
That’s because the drummer, 22-year-old Justin Vigile, had been bedridden and dying with end-stage heart disease, hypertrophic cardiomyopathy, or thickening of the heart muscle, just months before the video was shot.
The Mayo surgeon, Dr. Hartzell Schaff, played the video as part of his swan song as president of the association. But he didn’t do it to show off his pioneering surgery. Schaff was trying to highlight the importance of the unforeseen benefits of research, sometimes realized decades later.
It’s exactly the kind of research in National Institutes of Health labs around the country that is in jeopardy because our representatives in Washington don’t have the courage to come to consensus on the national budget, and thus have relied on sequestration that slashes money across the board. That includes $20 million in research at Mayo Clinic alone.
If you are one of the people who thinks sequestration isn’t having an impact on anyone, listen to Vigile:
“Everybody likes to say I’m a miracle,” said Vigile. “But I tell them it’s science, man. I’m alive because of science, years and years of hard science, and somebody’s got to pay for that.”
Schaff was working as an intern in Baltimore on “something completely unrelated to HCM” with another patient’s case. Doctors had thought the patient’s heart was stiffening. Instead, the problem was his ventricle was too small.
“It’s too bad we don’t have a surgery for this guy,” someone said.
Years later, Schaff developed a process called apical myectomy. This surgery has been done only about 50 to 60 times in the United States, almost exclusively by Schaff. The surgery involves cutting out some of the thickened muscle to reshape the heart and improve function.
Vigile, who lives in Philadelphia, was diagnosed with HCM at age 15. Despite excellent care of specialists, including doctors at Tufts, his condition deteriorated over several years.The former football player could no longer play sports. He eventually got a defibrillator in case his heart went down.
His music career, meanwhile, took off. But during one set he got ill and vomited. Later, during another show, his defibrillator activated.
Unable to walk or drive
Because most heart transplants last only about 15 years, Vigile had decided he didn’t want to go through this twice in his life, and ruled it out.
By the time his mother found Schaff on the Internet, Vigile was unable to walk or drive.
Though Schaff warned there were no guarantees with the surgery, “I had no other options,” Vigile said. “I just wanted to be able to walk again.”
The result has been amazing. Within a few months of the surgery, Vigile and his band played at the Trocadero in Philadelphia. He now goes to the gym six days a week and has put on 30 pounds of muscle.
“Whatever [Schaff] did in there, I’m better now than at any point of my life.”
Vigile’s dramatic story is particularly important now, when there is a distrust of science and some are looking for ways to cut medical research. Earlier this month, one Texas congressman even wrote a draft of a bill that would mandate congressional approval for all federally funded scientific research.
‘Huge advocate of science’
Schaff said that “you don’t even know what’s going on inside NIH labs now” that will save lives years from now. “This [apical myectomy] is exactly the kind of thing that would be financed by the NIH.”
Vigile is so thankful for Schaff’s skills that he plans to donate proceeds from an upcoming recording to help other kids with the condition.
“I’m a huge advocate of science,” said Vigile. “What I went through was so crazy. You see kids die from this every day. I was very lucky.”