Heart in Darkness
By Russell Cobb

At 39, Russell Cobb may have a time bomb ticking away in his chest. For two generations, all the men in his family have developed heart disease in the prime of life -- his father and grandfather both died before the age of 50. In his Star Dispatches ebook, Heart in Darkness: The Genetic Defect that Could Kill Me, Cobb chronicles his journey to understand the family “curse” and discover whether he, too, is at risk of developing familial dilated cardiomyopathy. Along the way, he conjures up larger-than-life family members who lived and drank hard, or sought help in Pentecostal religion and faith healing, or both. Funny and poignant, Heart in Darkness is a revealing description of what it’s like to live with uncertainty.

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Heart in Darkness

There may be a time bomb ticking away in my chest. Perhaps some day while I’m shovelling snow a genetic protein will trigger a message to my heart to start dilating, sending the muscle into overdrive. I might notice some slightly irregular palpitations, dizziness or a fever. At 39, I might have a full-blown heart attack and crumple to the snow-packed sidewalk. For two generations, all the men in my family have had these symptoms, leading them to the brink of heart failure before the age of 50. “The Cobb curse,” some acquaintances of the family have called it.

I booked my first appointment with a cardiologist when I turned 30. I walked into Dr. Jason Zagrodsky’s office in the summer of 2004, feeling that a reckoning with a flawed heart was at hand. It was my first meeting with a mysterious family history.

There was something comforting, however, about my fellow patients at the Texas Cardiac Arrhythmia Institute in Austin. One was an old cowboy with a trucker hat and an oxygen tank. He looked like a cadaver, with sunken eyes and ashen skin. There were two obese ladies whose bodies spilled over onto the adjacent chairs. Me? I was a 30-year-old who played YMCA-league basketball and hit the gym for boot camp or spin class at least three times a week.

Only strikes against me: moderate drinking and the occasional cigarette at parties. Next to my companions, I was going to live forever.

Dr. Zagrodsky, a cardiologist with the looks and bedside manner of a young George Clooney on ER, leaned against the examination table. “Call me Dr. Z,” he said. He seemed a little perplexed
by my presence.

I told him I had no symptoms of any sort, except that when I thought about my male relatives, I could feel my heart racing.

Dr.Z got interested when I started to tick off the cases of heart disease in my family. My father and his father had both died young. My dad’s three brothers all had the same disease, and two of the four brothers were now dead. Their father had died from heart failure at age 44.

Dr. Z raised an eyebrow. He sat down, ready to take notes. “Let’s start with your dad,” he said. “What was his particular diagnosis?”
“Some form of cardiomyopathy,” I said. Cardiomyopathy is a disease in which the heart muscle wears itself out from too much stress. The heart becomes enlarged, like a worn-out spring that won’t snap back into place. Some forms of it are environmental — brought on by drug use, exposure to toxic chemicals or high blood pressure — while others are purely genetic. In hypertrophic cardiomyopathy, a healthy young person can drop dead from exertion. Dilated cardiomyopathy, on the other hand, usually means a long, slow decline of heart function ending with heart failure.

When I admitted I had no idea what kind of cardiomyopathy it was, Dr. Z looked at me disapprovingly. He pressed me for details, and I remembered a word. “Idiopathic,” I said. “His doctors said it was idiopathic cardiomyopathy.”

“That means they don’t know what caused it,” Dr. Z said, tapping his pen on his clipboard.

I wanted to know what I could do to prevent an early demise. Dr. Z shrugged his shoulders. “Stop smoking now,” he said. “That’s about it.” He did give me some homework, though. It would start with a call to Stanford University Medical Center.

My father, Candler Cobb, was the 75th person to receive a successful heart transplant at Stanford, the only hospital that carried out the procedure at the time. He was 32 years old. His doctor was Norman Shumway, the first doctor in North America to perform a successful heart transplant, in 1968. The word “successful,” however, is a relative term, medically speaking: the recipient, a 54-year-old steelworker named Mike Kasperak, lived for 14 days and then died from, in the doctor’s words, “a fantastic galaxy of complications.”