The Open Heart Club

by Gabriel Brownstein

  “What have they done to my son?” Doron cries. At the very end, when all the mistakes have been made, when all attempts have failed and the doctors have given up their struggle, Doron rushes to Damon’s bedside in the ICU.

  “D-man, listen to me!” I lift my voice and appeal to him as if we’re fellow soldiers fighting in the trenches and we could still win this war. “I want you to forget all these goddamn machines and this whole ridiculous setup here! Forget this silly hospital and these silly doctors. Just go deep inside. I know you have the strength—it’s time to use it. Okay?” I pump my fists, as I have so often for him, and urge Damon on with every fiber of my fraught being. “Come on, D-man, let’s bust out of this joint and just go home!”

  Does love obscure Doron’s vision or enchant it? In the cardiac ICU and the neonatal ICU, he sees so much more than what’s actually there.

  The essential prayer of the long-term heart patient is silent and unspoken, and always it is implicit in the prayer Doron recited as Damon died, the desire to flee from the world of medicine. Let’s bust out of this joint and go home.

  40.

  TIMOFEY PNIN, RUSSIAN émigré, sits in a park in a small town in upstate New York and feels a shift inside him, an alteration in the substance of his body. “He felt porous and pregnable,” Pnin’s author, Vladimir Nabokov, writes. “He was sweating. He was terrified.” Pnin was written in 1957, before the advent of electrocardiology, so Nabokov—who has a word for everything—has no language to describe precisely what is happening to his hero’s heart. “Was his seizure a heart attack?” Nabokov asks. “I doubt it.”

  When doctors examine Pnin closely, “the cardiograph outlined fabulous mountain ranges.” Pnin gets no diagnosis for his condition. He regards his heart “with a nervous repulsion, a sick hate, as if it were some strong slimy untouchable monster that one had to be parasite with, alas.” In the moment when he is sitting on the park bench, he feels that monster has betrayed him, as if “the repulsive automaton he lodged had developed a consciousness of its own and not only was grossly alive, but was causing him pain and panic.”

  Arrhythmia makes the self other and the other out of the self. One’s heart is not one’s own. An implanted cardioverter defibrillator compounds this unnerving experience. In the patient’s chest there are now two competing alien intelligences, not only the arrhythmic heart but also the ICD, with its chilly robot brain, ready and willing to blow the crap out of the body.

  An ICD battery lasts about five years, and when the battery runs out, the whole thing has to be excised from the chest, and a new one has to be attached to the electric leads that screw into the heart, and the skin has to be sutured up above the device. On a chilly first day after it’s been implanted, a new ICD can get cold before the rest of the body, like a bunch of icy coins in your pants pocket, but in this case the pocket is your skin.

  The first time my ICD gave me a shock, I was on an elliptical trainer at the local YMCA, listening to Talking Heads, feeling strong and recovered and going as fast as I could. “We are vain and we are blind,” said David Byrne. And then—David Byrne went silent. Everything went dark. Something tore through my chest, like a brick was ripping through my thorax, and my first thought was that a bomb had gone off behind me. But then the lights went back on. “I hate people when they’re not polite,” said David Byrne. Everyone else was exercising, as if nothing at all had happened. My heart was no longer thumping with exercise. It was steady and quiet. I stepped off the machine. I put a towel to my face.

  One of the weirdest things about a defibrillator shock is that when it hits, the pain is total and self-obliterating, but when it’s gone, it’s gone. There’s no residual tenderness or swelling or mark. I walked home. I called a doctor.

  The second time, I was teaching my daughter how to ride a bike. I ran hard, pushed Eliza up a gentle slope, and then—I was doubled over, and she was pedaling. The third time I was running through deep snow, trying to catch a bus. You learn, somehow, to integrate these things into your life, though they are traumatic.

  After her childhood heart surgery, Meg Balke had been an athlete, a competitive swimmer in high school and a professional trainer as an adult. But the birth of her second child taxed her heart, and Meg developed life-threatening arrhythmias. After an ICD was implanted in her chest, she continued to operate her business—a Strollercize franchise in Florida. One day in the park, with her baby in its jogging stroller and several new moms in exercise clothing pushing strollers behind her, Meg (tall, thin, redheaded, and fit) jogged up a hill, and her ICD fired. She didn’t fall. She didn’t falter. She just slowed down and had her troop walk the last fifty yards of the routine.

  I met a patient named Jenny who was working as an events coordinator when one day, in a stairway in her office complex, her ICD shocked her ninety-eight times in the course of thirty minutes. Jenny is a youthful, attractive woman with long, blond hair and a wide-open midwestern face, and her harrowing decline in health led to a heart transplant. She showed me the scar on her chest where the defibrillator had been—with a new heart, she didn’t need the device anymore. But still, the trauma lingered. She could not enter a stairway anymore. She always took the elevator. And she still suffered phantom shocks from her missing ICD, moments when she tensed and seized, imagining that her defibrillator was blowing her away. I get these too, these imaginary shocks. They hit me often when I’m on the cusp of sleep.

  I have learned to be careful, to always take my medicine, and to wear a heart monitor when I ride a bike or climb a mountain. I have also learned to be grateful. For each badly timed explosion, there have been a dozen times when my ICD has saved my life, usually without my knowing it. My heart runs whacky for just a few seconds. The defibrillator sends out its gentle antitachycardia pacing, and the ATP beats dissolve the arrhythmia before I know it’s even happened. I might be commuting home, cooking dinner, or having a cocktail with a friend—these ATP-cured arrhythmias are nothing to me. I only learn about them in the doctor’s office, when the device is interrogated and reveals its history.

  “Remember where you were on November 19 at 5:10?” the nurse will ask. And I’ll have no idea, and no memory of the episode of V-tach.

  Soon after my ICD was implanted, Marcia got pregnant again. We moved into our new house. My daughter Lucy was born, and my ICD was there in my chest, counting beats in the delivery room. Just a month after Lucy’s birth, I was on the Long Island Rail Road, and the conductor announced, “If you look out your window, you’ll see the World Trade Center just got hit by a plane.”

  My first book came out. My ICD was with me as I crossed the stage and won an award. I got a tenure-track job, published a second book, and then spent years writing an experimental novel about black-face comedy—one that was never published. My ICD was in my chest as I read the rejection letters.

  The device didn’t cure my arrhythmia; it just made sure my V-tach didn’t kill me. I published some stories. I got tenure. I started a new book, about three marriages in one family. It wasn’t clear how much longer the pig valve in my heart would last—the lifespan of those things can go from one year to twenty, so every six months I’d get an echocardiogram to see how well it was holding up.

  As I got older, the pace of my arrhythmias slowed. I started experiencing attacks at rates below the threshold at which my device was set—my heart would be pounding at 140 beats per minute, and there was nothing to do but to wait for those attacks to pass.

  I was riding my bike around town, I was teaching and writing and raising my kids, but soon the attacks became more frequent, and I no longer had the ability, or the will, to pretend I was healthy. The ICD was there under my skin. The pig valve was in my heart, wearing out, a little bit, every day. I left Steve Fishberger’s practice and was treated by Deborah Gersony (thank you, Deborah!), an adult congenital heart disease doctor and the daughter of Welton Gersony. She was the first trained adult congenital heart disease doctor in New York City. (Marlon Rosenbaum beca
me a doctor before such training existed.) But Deborah Gersony left medicine, and eventually I had to go back, tail between my legs, to Marlon Rosenbaum, who was the doctor in New York best qualified to treat me.

  Like so many long-anticipated meetings, my reunion with Marlon was anticlimactic. I was anxious in the waiting room, but Marlon could not have been more professional and decent. There he was, a soft-spoken, unprepossessing man, hurried and distracted, rumpled even though his shirt was clean and pressed.

  “This is Gabriel,” he said to Nada Farhat, the brilliant and kind RN who works closely with Marlon. “Gabriel, whom I’ve known for a long, long time.” There he was—an actual man, uncoupled from the black hole of my imagination.

  I tried to make up for past confusions. I apologized for running away from him. I went on about it, but he stopped me. He tilted his head to one side. He squinted slightly. He remembered the exchange with Dr. Freed. He admired Mike Freed. He said they were friends, really. He said that a lot of people hadn’t believed him in 1995 when he was arguing for replacement of pulmonary valves in patients like me. He didn’t seem surprised that I had chosen the path of nonintervention.

  I told him that I had been really, really afraid of heart surgery. He raised his palms slightly, as if to say, Who isn’t? I told him that he had been right and that I should have listened to him.

  “Sure,” he said. And he put a stethoscope to my chest and then to my back. “Breathe,” he said. I have put myself in his hands ever since.

  Often, when I see Dr. Rosenbaum, there’s a fellow in his office training to work in adult congenital cardiology, and often he’ll tell his fellows the story of my case and of the different ways that he and Dr. Freed saw it.

  “It just goes to show,” I’ve heard him say.

  “You have to go with the data?” I’ve asked.

  But that’s not the moral of the story. There wasn’t any data. There’s still no real data, he’s explained to me. All the doctors know is what they see. “If you replace the valve in an adult tetralogy patient,” Dr. Rosenbaum told me, “you’ll see that a year later the right ventricle has shrunk 30 percent.” But that doesn’t address outcomes. Doctors have only an eighteen-year follow-up on a handful of patients and no control group, so there’s no real proof that with intervention there’s less tachycardia, heart failure, and death.

  The moral, it seems, is the difficulty in imagining new ways of treating patients and the difficulty of getting the medical establishment to change its practice as new ways emerge. Marlon Rosenbaum, trained as an adult cardiologist, came to congenital heart disease with fresh eyes, and what he saw seemed obvious to him: people in general do better with pulmonary valves. A leak in an enlarged heart could not be tolerated indefinitely. But since Jim Malm’s time, this had been how pediatric cardiologists had cured people like me. It was part of the algorithm Malm and his peers developed—the heart was repaired without a pulmonary valve. This practice, over thirty years, had been incredibly successful. A whole generation was living long, happy, healthy lives. We were doing great. I was doing great. In the 1990s, the risks of surgery and heart valve implantation were real, while the benefits were entirely hypothetical.

  I’ve often wondered, What if I’d had my valve replaced in 1995? Would I have an ICD in my chest now? Would I be plagued by the arrhythmias? When I ask these questions of Marlon, he winces as if he’s been pinched. He does not want me to blame myself for my condition.

  “Any time you cut into the heart,” he’s explained, “you run the risk of disturbing the conduction system.” And the V-tach doesn’t necessarily correspond to the enlargement of the ventricle. “It’s multifactorial,” he has said to me.

  Besides, it’s not clear anyone would have replaced my heart valve in 1995. The difference between Dr. Freed and Dr. Rosenbaum wasn’t nearly so large as I had imagined. Marlon Rosenbaum did not have a patient undergo valve replacement until 1999, the same year I had my surgery in Boston. He presented that case to his colleagues, and the night before the operation was scheduled, an eminent visiting doctor from London argued vehemently against intervention.

  “He thought I was crazy,” Marlon said.

  In 1995, adult congenital cardiology was not an established field. Kids whose hearts had been repaired in the 1970s and 1980s were mostly seeing their pediatric cardiologists, if they were seeing cardiologists at all. Diagnostic technology changed too. It was the MRI of my heart, a test unavailable when I left Marlon’s practice, that presented the hard data about my ventricle. And even in 1999, when I had my surgery, adult congenital cardiology was in its infancy. It wasn’t until 2010 that doctors could train in established adult congenital cardiology fellowships. There was no board-certifying exam in adult congenital cardiology until 2015.

  “When I started,” Marlon Rosenbaum told me, “people would say, Why do you want to do that?”

  As recently as the 1990s, he was the only doctor in New York City devoting himself to adult congenital cardiology patients. There are now four other congenital heart disease (CHD) centers in the city. Dr. Rosenbaum has a practice with thousands of adult patients and two CHD doctors working under him.

  Current medical practice dictates that patients make the final choices about their health. In The Heart Healers, James S. Forrester, former chief of cardiology at Cedars-Sinai Medical Center, writes, “From our first days in medical school we are admonished never to order, only to advise.” “This has to be your choice,” Forrester tells his patients. But a choice made in ignorance isn’t a choice at all.

  I’ve been back in Marlon Rosenbaum’s practice for about a decade, and in that time I’ve had continuing troubles with my heart. The valve has weakened, and I’ve suffered new and difficult arrhythmias. But I’ve learned to listen to him and to be ruled by his recommendations. I ask him questions, and if I ever didn’t understand his advice, I wouldn’t hesitate to get a second opinion. But I’ve learned that to make good decisions I can’t be ruled by fear. Educated patients want to view their decisions critically, to hear their doctors’ recommendations with some skepticism, but skepticism without knowledge isn’t thinking. It’s just a reaction driven by vanity and fear.

  41.

  EVERYONE WHO IS born holds dual citizenship,” wrote Susan Sontag, famously, “in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

  For most of my life, I’ve behaved like a spy or a refugee, a citizen of the kingdom of the sick traveling under false papers in the kingdom of the well. But as I have grown older, the borderline between Sontag’s two kingdoms has gotten blurry, and so has my sense of citizenship. On a given day, I no longer know which territory I belong to—the kingdom of the healthy or the kingdom of the sick—and I no longer know which passport I’m supposed to carry. Sontag wrote those famous words in 1977, and maybe her geography is a little out-of-date. More and more of us live like me, in a territory unimaginable fifty years ago, a strange border country ruled by medicine.

  I’ve been teaching in the same English department, at St. John’s University, for more than twelve years, and by now I know which of my colleagues has survived a stroke and which an infection that crossed the blood-brain barrier. Some have confided in me about their antidepressants and their high-cholesterol and hypertension drugs and their cardiac arrhythmias. The estimate is that by 2025, 164 million people in the United States will be living with chronic illness, and that number doesn’t count the ones who were spared long-term disability because of pins in their ankles and their hips after skiing or football injuries, or the ones who don’t have rheumatically scarred heart valves because they took penicillin when they were kids with strep throat, or the ones who never got measles because they and their neighbors were vaccinated, or the ones who never got cholera because their drinking water was clean—in other words, we all should count ourselves amo
ng the saved, living in the kingdom of the well by the grace of doctors and public health measures. Medicine penetrates our lives so deeply that it’s invisible. We forget that we have been rescued. I am not the only one whose insides have been changed. Hemoglobin structures differ among those in the developed world and those in less prosperous countries, largely because the former have been shielded from diseases.

  Like everyone with great privilege, we take our privilege for granted. When I was a kid, even when I was thirty, I felt singled out by my heart. But now I feel less like an outlier and more like a trenchant example. We’re all in the Open Heart Club now.

  I was on my bicycle, going around the perimeter of Brooklyn to Queens, from my house to the Rockaways, sweaty but happy, and then heading home on a narrow path by the side of the Belt Parkway. My heart, which had been steady around 115 bpm, leapt on my wristwatch monitor, all the way to 148 bpm. I stopped biking, waiting for the shock, but nothing happened. The rapid heartbeat continued. I saw the monitor’s number go down to 144 and back up to 147. Again I tensed, gripping the handlebars, feeling the panic rise. The shock never came. The arrhythmia resolved itself on its own, down to one hundred, then to sixty. Hesitantly at first, but eventually with some confidence, I biked my way home.

  It started happening more often. The palpitations hit me at rest. I’d be eating out, and I’d hand the menu to the waitress and feel the V-tach begin in my chest. I went to Dr. Rosenbaum’s office. He raised his finger in the air and recommended a radio ablation. They would put me under some sedation, guide a catheter into my heart, and with the electric wire of that catheter attempt to burn the arrhythmia right out of the muscle of my heart. It seemed a frightening proposition, but this time I didn’t ask too many questions. I took Dr. Rosenbaum’s advice.