continued...
In other words, Bill was collateral damage in society's effort to become healthier. I can't accept that my friend was sacrificed so the rest of us would stay motivated to exercise. And I'm sure the hundreds of thousands of Americans who have HCM would have a problem with their doctors viewing them as sacrificial lambs. If the Italians have found a way to prevent HCM deaths, why can't we?
I call the University of Padua, in Italy, and track down Gaetano Thiene, one of the doctors who conducted the Veneto study. I tell him Bill's story. "In the United States, the burden is on the athlete, and this is totally wrong," he tells me. "Life comes first."
"If your friend had lived in Italy," he says, "he would most likely still be alive today."
So the question is, how many people like Bill will we lose before we decide we've lost too many?
When I was 21, I ran the Napa Valley Marathon. At mile 20, I hit the wall and could barely move my legs for the last few miles. Afterward, I felt nauseated and couldn't stand. For the next week, I could barely climb stairs.
I hadn't thought of that experience for years--until Bill died. Nor had I ever worried about the mild chest pains I occasionally felt, until Salberg told me they're a common warning sign of HCM.
If the Napa Marathon had prescreened me, would they have found an abnormal heart? I schedule an ECG with my doctor and, a few days later, go in for the 10-minute test. A nurse tapes 12 sensors to my arms, legs, and chest. The wires running from the sensors snake into a small box, which spits out a heart-rate graph. To my alarm, the top of the graph is labeled with these words: Abnormal ECG.
ECGs sense suspicious electrical activity, but they don't provide a definitive picture. To really gauge my risk, I need an echocardiogram. So, 5 days later, I visit the Mayo Clinic in Minnesota, home to one of the country's oldest HCM centers. Since 1989, an entire team has been devoted to detecting and treating the illness. They see hundreds of patients a year.
After a nurse jams a small black probe into my ribs, the monitor to my right flutters and, suddenly, a curious image appears out of the static. An assembly line gone mad. Clouds of red hurtle across the screen, controlled by doors that frantically open and shut. The doors look overworked, as if they're constantly behind schedule. This bleak picture is my heart.
An hour later, I review the images with Steve Ommen, M.D., the fresh-faced head of the HCM Clinic. "Your right ventricle looks pretty large," he says. He uses a mouse to measure the chamber, to confirm his suspicion. "Yes, it's big."
Diagnosing athletes with HCM is complicated by the fact that hearts can grow naturally as a result of exercise. One of Dr. Ommen's patients is a basketball player whose heart is enlarged, its chamber walls thick. It's a result of either HCM or vigorous exercise--Dr. Ommen can't tell which. He asked the man to stop all forms of exercise for 3 months. If the enlargement is natural, the heart will shrink. Otherwise it's HCM, and the jock will have to give up hoops or risk dying every time he steps on a court.
Dr. Ommen's story makes me wonder what Bill would have done. Being a runner was part of who he was. If someone had advised him not to run, I think he might have said, "I'll take the risk."
"It's a difficult balance," Dr. Ommen tells me. "On the one hand, there are health risks associated with sitting around. On the other, exercising too hard can kill you. It's a tough question to answer."
It's also a controversial one. After the 2000 Olympics, the Italian swimmer and two-time gold medalist Domenico Fioravanti was diagnosed with HCM. In keeping with Italian regulations, Fioravanti was barred from further competitions. Fioravanti argued that competing should be his choice.
Dr. Ommen leans toward the monitor displaying my heart. If he tells me I have HCM, how will my life change? Will I stop running, and start thinking twice about rushing to catch a bus? Or will I choose, as some HCM patients do, to have a defibrillator installed in my chest, and then go about my daily life until, one day, my heart spasms and the defibrillator engages? "They say it feels like being struck by lightning and punched in the chest at the same time," Dr. Ommen says. When you recover your wits, you realize you should have died just then.
There are other treatment options as well. Drugs can improve bloodflow within the heart, but studies show they're effective in only two-thirds of patients. Surgeons can also try to cut out the thickened sections of heart muscle. It's a major surgery, fraught with risk, and it doesn't always work. But in one study, 70 percent of patients reported major improvements in their quality of life afterward.
Still, the best defense is knowledge. Athletes are the most-visible victims, but many more nonathletes die of HCM each year. Every member of a family that has experienced a perplexing heart-related death should be tested. For those who have HCM, altering their lifestyles is critical. Will that be me?
Dr. Ommen pulls up a different image of my heart and measures the thickness of the walls separating my left and right ventricles. "You're fine," he says.
At Bill's unofficial wake a few days after he died, I got drunk on Fernet, his favorite drink. I ended up in a parking garage in downtown San Francisco, hurling traffic cones off the third level. "He shouldn't have died," I shouted.
Now, a year later, I know I was right.
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