And then another whopper: You know you have HCM if you die unexpectedly. That's often the first symptom. About 15 people in this country drop dead from the condition each day. It's the most common heart-related killer of men younger than 30.
"It steals people away in the prime of life who have no outward signs of illness," says Salberg. "They often just collapse without warning." At least 600,000 Americans, in other words, are walking around with a potentially deadly condition they're probably unaware of. Their chances of dying from HCM in any given year is about 1 percent, but the risk rises as they age. If you suffer from HCM, chances are it'll eventually kill you.
Salberg has HCM, as do her father and daughter. She formed the Hypertrophic Cardiomyopathy Association after her sister died of the disease in 1995. But without that kind of tragedy in a family, the disease can be hard to pinpoint. It sometimes produces heart palpitations, but these are often misdiagnosed as anxiety or panic attacks.
Salberg points me to medical journals like the Journal of the American College of Cardiology and the European Heart Journal. I stay up late reading research papers, and at around 3 a.m. it hits me. All the answers are here, hidden in plain view beneath such phrases as "morphologic protocol" and "phenotypic profile." Many athletes who died on the court or field--Hank Gathers, the Loyola Marymount basketball star; Thomas Herrion of the San Francisco 49ers; Reggie Lewis of the Boston Celtics--had HCM and probably didn't know it. That list now includes my friend Bill.
I can't help but wonder, Could these deaths have been prevented?
On February 18, 1982, the Italian Ministry of Health issued a decree. Henceforth, every athlete wishing to participate in a competitive sport would have to undergo cardiac screening. The testing would begin with a simple electrocardiogram, known as an ECG (or EKG), which would measure the electrical activity of the heart. If this test found abnormalities, doctors would order an echocardiogram, an ultrasound of the heart.
The athletes would pay for the annual test, but the government subsidized prices. The decree spawned a new industry for doctors, who pored over millions of cardiograms searching for HCM-afflicted hearts. If they found one, the athlete was prohibited from participating in vigorous competitive sports. His or her athletic options were abruptly reduced to golf and bocce.
Over the next 22 years, researchers scrutinized the data streaming in from the Italian screenings. The most comprehensive study focused on the region surrounding Venice, where sudden cardiovascular deaths in athletes between the ages of 12 and 35 plummeted by nearly 90 percent. Extrapolating those results, the researchers estimate that over the past 25 years, thousands of lives have been saved across Italy.
The Veneto report, published in 2006, has triggered a debate in the Western world. On one side are Italian cardiologists, who say that because comprehensive testing works in Italy, it could work elsewhere. On the other are American and British specialists, who are mostly dismissive.
"It would be impossible to accurately screen tens of thousands of runners for one of the big British or American marathons," says cardiologist Dan Tunstall Pedoe, FRCP, who was the medical director of the London Marathon for 26 years. "We don't have enough cardiologists to read all those ECGs and echocardiograms." Three times as many athletes compete in the New York and London marathons than in the Rome marathon, and though not every athlete would necessarily need to be screened before each race, many would likely schedule their yearly screening around such an event.
Equally challenging would be annual checkups for the millions of Americans who play locally just for kicks, including the 7.2 million young adults competing on high- school teams. Italy, by contrast, has only 2.9 million young adults of high-school age. "We just don't have the manpower to create a national program," says Barry Maron, M.D., director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation.
Pedoe points out another issue: ECGs often indicate a problem when there isn't one. Euan Ashley, MRCP, director of Stanford's Hypertrophic Cardiomyopathy Center, estimates that, because of their intense training, more than half of all athletes have abnormal ECGs. The result: A large number of athletes without HCM would be sent for an expensive echocardiogram. Italy's national health-care system helps defray costs there, but athletes in the United States would have to pony up thousands of dollars. Some kids wouldn't be able to afford to pay--or play.
The AHA, while acknowledging that exercise can kill, issued two statements in the spring reiterating its decade-old recommendation that U.S. health-care professionals screen for HCM using a good old stethoscope, along with a questionnaire that asks athletes to report any family history of heart trouble. But a stethoscope can identify only certain forms of HCM, the types in which the heart muscle is so thick that it produces an audible murmur. More often than not, there is no murmur. And the questionnaire is only as effective as the respondent wants it to be. Kids trying to make a team are unlikely to disqualify themselves.
"Medical history and physical-exam screening in the United States can certainly be improved," admits Dr. Maron, who served as chairman of the AHA scientific committee that issued the recommendation.
Pedoe worries that because testing would add cost and hassle, people might be dissuaded altogether from participating in sports. "For the vast majority of people, running a marathon is beneficial," he says. "For every person who dies, thousands of others are postponing or preventing their heart disease by exercising. Labeling a generally safe activity as more dangerous than it really is could do more harm than good."
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