Interview

Excerpted from a pre-publication interview with Michael Downing. His new book, Life with Sudden Death: A Tale of Moral Hazard and Medical Misadventure, will be published in October 2009 by Counterpoint.

What does it mean to live with sudden death?
It’s like being a suicide bomber wired up with just enough TNT to kill yourself—but no one can tell you where the trigger is located or how to prevent an explosion.

Is that why you wrote the book—to try to figure out why this happened to you?
I’ve come to see that my story is a cautionary tale about the future of health care in America. More and more, our doctors will rely on genetic identification of nascent disease and potential problems. I mean, if you were told you could avoid a terrible illness or your premature death, wouldn’t you pursue preventive intervention?

I simply didn’t understand the unadvertised risks of standard operating procedures in hospitals. And I was in a better position than many people. I had a job with great health insurance, and I live in Boston. The Harvard teaching hospital where I was treated consistently turns up in lists of the Top Ten best medical centers in the country.

And I wasn’t sick. Until I submitted a sample of my DNA for genetic testing, I was healthy by every conventional measure. My problems began as preventive medicine. I had no apparent heart disease, but because of a genetic mutation, I was implanted with a defibrillator—just in case. Five years, four surgeries, and three implanted devices later, I find that famous ounce of prevention weighs pretty heavily on me.

And yet the book is often funny, starting with the early chapters, where you draw readers into your attempts to negotiate a safe place in a big, complicated family after your father’s death in 1961.
I grew up in the shadow of my father’s sudden death. I was happy as a kid, but by the age of six I knew that no lived moment would ever be as important or impressive as the moment my father died—which happened when I was too young to register the significance. In effect, I had no role in the family story. I’d missed the central event in the life of the family, and I never really knew the central character.

I had to invent a role for myself—and then pray I could pull it off.

Prayer was almost a full-time occupation for you as a young boy. Do you think that was typical of people who grew up at the end of the Baby Boom?
You know, there’s the Little League, and then there’s the Yankees and Red Sox.

We prayed so much that one of the older kids gave my mother a kneeling pad for her birthday to use during the nightly family Rosary, litanies, and devotions—which were just a small part of our daily dose of religion. By the time I was in high school, my mother and several of my elder siblings started having visions. They spoke in tongues. Prophecies sometimes popped into their heads, often involving useful advice for people like me, who obviously weren’t getting any gifts of their own from the Holy Spirit. Occasionally, they prayed so hard they passed out—though they lobbied hard for the rest of us to use the phrase “slain in the spirit.”

And then sudden death struck your family again in 2003, changing the course of your adult life.
One of my brothers died in December 2003—suddenly, without apparent cause. I’m not sure that what happened in the wake of his death changed my life. But my experience with doctors and medical-device manufacturers after 2003 almost ended my life—more than once.

Didn’t that change the way you think about yourself?
Well, suddenly, and repeatedly, I was a patient. But that was a weirdly familiar role. It was almost exactly the same as being the youngest of nine kids—and the only gay sibling—in a profoundly pious Catholic family.

Is that what inspired the structure of Life with Sudden Death?
Yes. I realized the lessons I was forced to learn as an adult patient were the lessons I’d been taught as a child. That’s why the chapter titles are the same for Part I: Elementary School and Part II: Medical School. My life story seems to be a two-act comedy of errors.

You see, that geneticist referred me to a cardiologist, who referred me to internists and more heart specialists, who referred me to an electrophysiologist—they were all colleagues in ongoing research and clinical trials—and before I knew it, I’d been adopted by a new family. I was an atheist by then, but I guess I had to put my faith somewhere. I didn’t see it at the time, but I put my faith in those doctors. Apparently, I was used to people diagnosing what was wrong with me and predicting my tragic end if I didn’t follow their advice.

Advance readers of Life with Sudden Death say your account of meetings with doctors, your use of your own medical record, and the fantastic notes you took are a kind of how-to manual for transforming the role of the patient.
If you want to know everything you don’t want to know about health care in the United States, pick up a staph infection at a major research or teaching hospital and start asking questions.

To prevent my sudden death, a defibrillator was implanted in my chest and hard-wired with electrical leads threaded through a vein and screwed into the wall of my heart. Unfortunately, along with that device, I was given a staph infection, which almost killed me. I had to have emergency surgery to remove the device and the wires. This was performed without general anesthesia, and then I was right back where I’d started—at risk of sudden death.

After six weeks with a central venous catheter and injecting myself three times a day with antibiotics, I had a third surgery. I was implanted with another life-saving defibrillator. I really believed I was safe until, one morning in the fall of 2007, I read a hair-raising story in New York Times. The electrical wire anchored to my heart, a highly touted new design, was failing at an alarming rate in thousands of implanted patients—several of whom had died.

My life-saving device was a threat to my life.

When did you decide to write a book about your experience?
I started to write this book when I realized my experience was not just a case of very bad luck.

Every day in this country, 250 people die of hospital-acquired infections—almost 100,000 people annually. More than 150,000 defibrillators are implanted every year. And every year, tens of thousands of those implanted devices are identified as faulty—fatally failing to deliver a therapeutic shock when needed; delivering repeated, unwarranted electrical shocks; leaking battery-fluid. The same model of failure-prone electrical wire that was anchored into my heart was implanted in almost 250,000 people.

I wasn’t alone, but I didn’t know who to trust.

When the Medtronic Corporation was compelled to issue a recall, I received a letter from the company, and one from the FDA. They both speculated that I was more likely die as a result of the surgery to extract the wire than as a result of that wire fraying and causing my device to malfunction. This didn’t really clarify my options. However, it did mean that my medical insurance would not cover the cost of a precautionary surgery to have that wire replaced.

If I got lucky—if I could somehow prove that the wire in my heart was fraying before I dropped dead— Medtronic would give me a new wire and $800 toward the replacement surgery, which typically costs between $30,000 and $60,000.

Medtronic’s device sales that year topped $12 billion.

Has writing the book helped you to see your future more clearly?
I’m not making any predictions.

A few years back, after my third surgery, I considered myself a pretty savvy patient. But it hadn’t occurred to me that I might be implanted with a faulty medical device—a device which the manufacturer, many doctors, and even the FDA considered a potential risk to my health and well-being.

All I can is, I’m not dead yet. In hospital terminology, this is known as patient making progress.