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I met Lorraine Flood on a rainy evening in the faculty dining room at NYU Medical Center, where about twenty patients with implantable cardiac defibrillators had assembled for a support-group meeting. In June 1998, eight years after her first heart attack on the eve of her son’s wedding, Flood underwent an hour-long operation to implant a pager-sized defibrillator under the skin of her left chest. Like most patients, she was told that the device would monitor her heartbeat and apply a shock if the rhythm degenerated into something dangerous. “I was so relieved,” Flood told me that night. “I used to worry, ‘If something happens, I may not survive it.’ ” But then her defibrillator started working.
Flood was sitting with her husband, Al, with whom she had driven out from Colonia, New Jersey, where he was a bank executive and she owned a travel agency. She was a tall seventy-one-year-old woman with a regal bearing and salon-done blondish hair. I asked her why she had come to the meeting. “I’ve had a horrible time,” she replied. “I still wake up every morning and pray to God and say, ‘Lord, please, no shocks today. Please, no shocks today.’”
They started a few weeks after her implant, when she began to have arrhythmias that caused her defibrillator to fire. “I used to see this bluish-white light, and that was my warning I was going to get shocked,” she said. She would quickly sit down and then feel the device discharge into her chest. “Nobody told me what it would be like. Oh, they said you’d feel a little something, but they never told me it was like a donkey rearing his hind legs and just with all the power he has hitting you right in the chest with full force—bang!”
Once, she was shocked sixteen times in nine days. “I was sitting on the couch when I started to get the shocks. I screamed like a banshee. My poor housekeeper didn’t know what to do. She ran upstairs and got me a bathrobe and slippers to go to the hospital. I said, ‘Catherine, I can wear clothes!’”
On the phone with her doctor, she was jolted by another intense shock. “I have always had a high threshold for pain—I never take Novocain at the dentist’s—but I just couldn’t handle it.”
One afternoon, she was at her grandson’s preschool when she saw the bluish-white light. “I felt it was warning me that I better get out of the room so I don’t frighten the children,” she recalled. She went into a bathroom, where she got what she described as a “mild shock.” Later, when her doctors checked, they said the defibrillator hadn’t fired. “They said it was a phantom shock,” Flood said.* “But no one can tell me it wasn’t related to the defibrillator. I’ve been shocked enough times to know what it was.” Flood’s defibrillator was adjusted to make it less sensitive to arrhythmias, but she continued to feel nervous, increasing the likelihood of future shocks.
She stopped going to work and hired a full-time driver. She stopped going out with friends or singing in the church choir and eventually resigned from the school board. She had tickets to The Lion King on Broadway but didn’t use them because she was afraid of getting shocked during the performance. “Dr. Shapiro said to me, ‘So what if you scream in the middle of the play? You’ll scream, and then you’ll watch the rest of the play.’ But I couldn’t do it.”
Flood soon developed a Pavlovian fear of places where she had been shocked. One was her shower stall. “It once threw me against the wall of the shower,” she said. “Well, you never saw anyone leave that shower so fast. I had shampoo in my hair, suds all over my body, and I ran into my bedroom screaming, and Al came running in. It was terrible.” She started using her husband’s bathtub. “I couldn’t even look at the shower; that’s how frightened I was,” she said. “Then I decided, ‘Lorraine, this is ridiculous.’ One day I opened the shower door and put the water on. But I couldn’t go in. I just watched the water.”
Her constant fretfulness put a strain on her family. “I think my husband considered me a little cuckoo,” Flood said. I asked her husband, a tall man with white hair and a patrician face, about this. He chose his words carefully. “It is a little hard for me to understand how paranoid she is with it,” he admitted.
At a neighboring table, Mohammed Siddiqui, a well-dressed man in his late fifties, was sitting quietly with his wife, Anjali, waiting for the meeting to get started. Siddiqui said he had joined the support group three years prior, after his defibrillator was implanted, but it wasn’t until the previous March that he had gotten shocked for the first time, in the passenger seat of his Nissan while his wife was driving. “It lifted up his whole body,” his wife said. “He jumped in front of me. He was looking at me so strange I thought I must be going the wrong way.”
That shock was followed by two others over the next ten days, including one while he was sleeping. When doctors checked, they said his defibrillator was responding appropriately to irregularities in his heartbeat and that he shouldn’t worry. But instead of feeling reassured, he found himself constantly worrying about the next shock. Once an executive at a land-development company, he stopped driving because he was afraid of getting shocked on the road and having an accident. He avoided leaving his home and indefinitely postponed a visit to his family abroad. He lost ten pounds and started to feel chronically weak. He had what appeared to be classic posttraumatic stress disorder, with nightmares and recurrent thoughts about the event. His palpitations, his wife said, had only increased since the 9/11 attacks.
I walked over to the buffet table, where Dr. Shapiro, who had invited me to the meeting, was chewing on a chicken skewer. He had just gotten out of a procedure and was still wearing blue scrubs. “I see you’ve met Mr. Siddiqui,” he said with a smirk. I told him what Siddiqui had said. Shapiro shrugged, seemingly at a loss for words. “I can’t explain it,” he said. “How can a shock make you weak for nine months?”
The meeting, Shapiro explained, was intended for people to open up about their defibrillators. Since the 9/11 attacks, he said, patients were reporting more defibrillator shocks than ever, probably because of increased psychological stress. The rate of ventricular arrhythmias in patients with implantable defibrillators had more than doubled. One patient of his, he said, was so disturbed after getting repeatedly shocked that she held a séance at her home to rid it of “evil spirits.” Another had actually made Shapiro turn off his defibrillator. “He said he’d rather allow his life to end than deal with the pain and frequency of those shocks.” Shapiro mentioned the young woman who was rescued at Ground Zero. No treatment for her arrhythmias had worked. The next step was probably a complex radio-frequency ablative procedure in her right ventricle.
Shapiro told me that his own father had gotten a defibrillator after a series of heart attacks. After the implant, his father’s heart inexplicably went into incessant arrhythmias, an “electrical storm,” and he was shocked eighty-five times in three hours. Traumatized, he couldn’t sleep for weeks. “But I kept telling him the defibrillator was a good thing, that it was doing what it was supposed to,” Shapiro said. “It was allowing him to see his grandchildren.”
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In the annals of dying, sudden arrhythmic death is something of a paradox: it is at once the most desirable way to die and the most feared. Sudden fatal arrhythmias are the leading cause of cardiovascular mortality across the world. Millions die of them every year, and most victims, like both my grandfathers, never even make it to the hospital. Most sudden cardiac deaths will leave loved ones bereft. But some will leave only gratitude for a merciful end.
Even as recently as thirty years ago, sudden arrhythmic death used to be greeted with almost total helplessness. Remember old movies in which a businessman slumps at his desk and a co-worker puts two fingers on his carotids and then pronounces him dead? The camera treated these deaths with an almost comical dispassion, as if they were fated, and this reflected society’s powerlessness in the face of this killer. But things have changed since Michel Mirowski invented the implantable defibrillator. In 2016, about 160,000 defibrillators were implanted in the United States, more than double from a decade ago. The population of
eligible patients has expanded, too—from actual survivors of cardiac arrest to patients like Jack, my magnetic patient, who are only at an increased risk of it.
Today Mirowski’s invention is tiny (nine defibrillators would fit on this page), nearly foolproof, and highly effective. The batteries last almost a decade and can be surgically replaced. Though it costs approximately $40,000 to implant one, considering that defibrillators often extend patients’ lives by three years or more, the procedure in many cases is a bargain.
But all medical technology carries a different price. Artificial hearts cause blood clots and disabling strokes. Dialysis saves lives but often results in painful, even life-threatening, infections. For implantable defibrillators, designed to deliver peace of mind, one of the biggest downsides, paradoxically, is fear.
A few weeks before the support-group meeting, a senior cardiology fellow and I were called to the bedside of a twenty-four-year-old man, a professional basketball player in Europe, who had just been shocked for the first time by a defibrillator implanted earlier that day. He had been admitted to Bellevue a few days prior after passing out in practice; his doctors had identified a genetic heart abnormality. He was a muscular, intimidating man who was whimpering in pain when we arrived. His girlfriend wanted to know why the defibrillator had fired. My colleague and I “interrogated” the device with a special computer and found that it had delivered an “inappropriate” shock—meaning that it thought his heart was fibrillating when it was not. We made some adjustments. “Try not to worry,” I said to the patient, who looked shell-shocked, as we were getting ready to leave. “If you get shocked in the future, you will have needed it.” His girlfriend wanted to know if he could still play basketball. Would the defibrillator fire if a pass hit him in the chest or if his heart rate sped up during a game? It was unlikely, the senior fellow replied, but he conceded that it wasn’t impossible. The patient thanked us, and we left. Somehow I knew he was never going to step on the court again.
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A few months after her implant, Lorraine Flood went to her first support-group meeting. “I thought perhaps the stories I would hear from other people would help me,” she said. She was surprised at how well the other patients were coping: going to their jobs, going on vacations, getting on with their lives. It was inspirational but a bit dispiriting, too, because she thought some people at the meeting were in denial. “Sometimes I had the impression that people weren’t opening up,” Flood told me, “that they weren’t 100 percent honest about how painful a shock can be. One lady I befriended got shocked for the first time in a bank. She said, ‘It was nothing.’ Well, it’s not nothing.”
While the support group made Flood determined to get on with her life, her anxiety continued. Pretty soon, she was having full-blown panic attacks, which only worsened her arrhythmias. One evening when she was home alone, she suddenly experienced an overwhelming fear that her defibrillator was about to go off. She started sweating. She went to her neighbor’s house; in his driveway there was a motion sensor wired to a lamp. When it went off, so did Flood. “I was screaming, crying uncontrollably, pounding on the door, tearing at my hair,” she said. “I’m the type who needs everything to be in place, and I looked like something the cat dragged in.”
Like many patients with post-traumatic stress disorder, she started taking Ativan, which helped. But one night, lying in bed, she saw a man in a black suit and a hat standing at the foot of her bed. Hallucinations are an uncommon side effect, but that was it for the Ativan.
Psychologists have come up with two theories to explain the post-traumatic stress disorder after implantable defibrillator shocks. The first, classical conditioning, refers to the psychological pairing of a previously neutral stimulus (such as taking a shower) with a noxious one (painful shock) so that they elicit the same fearful response. As in Flood’s case, as well as for other patients at the support-group meeting—and, presumably, the young woman who survived at Ground Zero—fear can heighten arousal and result in even more arrhythmias and shocks. The fear subserves itself.
The second theory derives from experiments in which dogs were repeatedly subjected to electrical shocks. Compared with controls, animals that are powerless to regulate their shocks become physically exhausted and quickly cease to struggle, despite being given opportunities to avoid the shocks. Researchers have concluded that animals acquire a state of “learned helplessness,” like the wild rats trapped in water-filled jars in Curt Richter’s experiments described in chapter 1. Humans who experience frequent shocks develop a similar response.
The key to avoiding such a hopeless state is to take away the element of surprise. Rats repeatedly shocked without warning develop stomach ulcers, a sign of intense arousal. However, rats that can predict when they will be shocked because of a warning buzzer develop significantly fewer ulcers. Moreover, rats that can prevent some shocks by pressing a lever develop fewer ulcers than those that receive the same number of shocks but have no control over them. Ulcers are further reduced when the rats, after pressing the lever, are given a signal that the shock has been successfully prevented. In other words, predictability, control, and feedback about the effectiveness of coping all reduce shock-induced stress.
Piggybacking on such research, researchers at Wake Forest University investigated how to mitigate the startle response of humans to sudden defibrillator shocks. They delivered 150-volt shocks to the arms of twenty volunteers and asked them to rate the pain. Some shocks were delivered alone; others following a tiny, painless “pre-pulse” so subjects were prepared. The prepulsed shocks were rated less painful than the ones applied without warning. The analgesic effect was greatest in the subjects who felt the most pain to begin with.
However, nothing has proved more effective for anxious patients than simply reducing the number of shocks they receive. Reprogramming a defibrillator to make it less sensitive to arrhythmias is the mainstay of treatment. Most patients are also put on an anti-arrhythmic drug, like amiodarone, which can have serious side effects like lung and thyroid problems but which most cardiologists find acceptable if it prevents the occasional errant shock and subsequent psychological cascade. Patients also often work with a clinical psychologist who specializes in shock-induced anxiety and provides cognitive-behavioral therapy. Many (like Flood) require antianxiety medications or antidepressants. For some, the best treatment is simply refraining from the activities that induce the shocks in the first place—for example, the patient who kept getting shocked during vigorous sex. (His partner claimed to feel it, too.)
But despite efforts to make them more user-friendly, defibrillators, like any medical technology, are always going to involve a compromise: What are you willing to give up to live a little longer? Ultimately, I think my maternal grandfather died the right way for him; he wasn’t a burden on his family, and he was walking and talking until the very end, listening to the BBC every morning. He wouldn’t have wanted to live with a donkey in his chest ready to kick him at any moment. A defibrillator might have given him another year or two. But what would he have traded for the extra time?
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Not long after our meeting, I went out to New Jersey to see how Lorraine Flood was doing. It was a cold, drizzly December evening. Her two-story home in Colonia was on an upscale, tree-lined cul-de-sac. We sat down in her living room, where she had laid out a generous spread of shrimp cocktail and fruit salad. Dressed in tan slacks and a cream-colored sweater, she looked calm, at peace. I could hear the sounds of soft jazz coming from upstairs. “I got shocked over there,” she said, pointing to a rocking chair. “I still can’t sit on it.”
Though her fear was not as incapacitating as it once was, she said, it was still a daily ritual. She still went “panicville” when a cell phone came near her. (The fear that a cell phone could make a defibrillator go haywire is common among patients, but unfounded.) “There are days the defibrillator is constantly on my mind,” she confided. “Sometimes I feel my heart thumping, turning, going
topsy-turvy. It frightens me because I’m not sure if it means I’m about to get shocked. At times like these, I forget I’m supposed to be a big girl and overcome it.” When the fear hit, she used simple techniques to divert her thoughts. She sang songs to herself that she learned when she was a girl. She chanted a Sanskrit mantra that she learned in her younger days as a yoga instructor. And she prayed.
Flood had started driving again, but she said she wouldn’t go more than four miles from her house, the radius encompassing her office, the shopping mall, and her church. (When she had to go longer distances, a driver took her.) She was, however, back to taking showers every day. “But even now, when I go in the shower, I say to myself, I better face this way in case I get a shock, so I won’t fall out the shower door.”
As hard as she tried to overcome it, the fear of being shocked still occasionally unnerved her. “If you knew me before, I was such a happy-go-lucky free spirit,” she said. “I’m very reserved now, very cautious. I’m afraid to do things.”
In the end, I wondered, was the defibrillator worth it? “Yes,” she said, “because I feel it could give me another six months or a year.” Then she paused and added, “Every once in a while, my mind runs rampant, thinking that this is going to be my last day. I say to the Lord, ‘If it’s my time, let me go in my sleep, please.’ ”
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A couple of years ago, I finally took my children to see the 9/11 Memorial in downtown Manhattan. For more than a decade, I’d avoided reading almost anything about the 9/11 attacks, so I had no idea what to expect. Approaching the main square, near where I had cataloged body parts at Brooks Brothers, I started to feel queasy. My armpits became moist, and my heart started to race. A crowd was packed at the viewing wall, surrounding the granite reflecting pool where the South Tower had once stood. I thought once again of the young woman with arrhythmias who was rescued the day after the attack. I never did find out what happened to her. Maybe her arrhythmias eventually responded to medications (or meditation). Maybe she underwent the radio-frequency procedure that Shapiro had mentioned, or even surgery to cut the sympathetic nerves that mediate the heart’s response to emotional stress. More likely, she was implanted with a defibrillator to protect her from her heart’s meandering vortices. Whatever the case, I wondered whether she was still alive to see the monument. We pushed our way through a gap in the mass of people. I pulled my children up to the stone wall. And then I saw it: the black stone, the bottomless pit, into which water swirled. It looked like a reentrant spiral wave, the signature of a heart’s death. I closed my eyes. My head was spinning.
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