The Open Heart Club

by Gabriel Brownstein

  A few months after I came back from Orlando, I had brunch in Brooklyn with five old friends. In a sunny row house backyard, we gossiped, recommended movies, and bitched about politics. Two little boys bounced balls. Two girls played with electronic devices. One of my friends, in town from California, had just been through breast cancer treatments. After chemo and a double mastectomy, she’d had silicone implants put in, and her hair had grown back glossy and brown. She looked fantastic. She was working again, producing films and traveling. A second friend, a financial editor, was living with multiple sclerosis, and he had to take a shot of Avonex each week, but he was still studying martial arts and going to the gym daily and was planning a backpacking trip for the fall. A third, a lawyer, had just gone through complex surgery on her sinuses, while her husband, an architect, had recently realized why he was a foot shorter than his brothers and why he’d spent his life farting. An endoscopy revealed the state of his duodenum, and he’d been diagnosed with celiac disease. After a change of diet, his energy levels were up, and his skin had never looked better. The fifth friend, whose medical history I knew least, was an actor and had recently auditioned for a Cialis ad in which he had to chop a log and bring it to his ladylove by the fire.

  “You don’t have to do much with this one,” the director told him. “It kind of sells itself.”

  None of us mentioned our health or medications except in the most vague and conventional ways: “How you doing?” and “You look great!” Our conditions were invisible and unmentionable, as was our children’s dependence on medicine.

  My daughter, strong and suntanned after spending her summer vacation as a volunteer clearing hiking trails on mountains, told us all the silly jokes that she had learned in the woods. She was beautiful and brilliant, and I was bursting with pride. But Lucy was born prematurely and spent the first days of her life in a neonatal intensive care unit. (The birth was traumatic; I made the mistake of peeking into a room and seeing an orderly mopping up my wife’s blood.) In her early years, Lucy was plagued with severe ear infections. As a toddler, she had to have an operation to take the pressure off her eardrums so she wouldn’t lose her hearing. Before she went to grade school, she had a second outpatient surgery to repair a hernia in her thigh. In elementary school she got strep throat seven times and once, in the countryside, contracted a MRSA infection. Summer was ending, we had made sure her vaccinations were up to date, and she was getting ready to go back to school, an A student, a competitive debater studying robotics. If you’d asked me, was she healthy, I’d say absolutely. I’d say that she had never contracted a serious illness in her life.

  Maybe what Ali Zaidi said of congenital heart patients is true of all of us. We no longer know what “healthy” means—we no longer know health as a state separate from medicine. If the folks in that Brooklyn backyard party had lived their lives in the arcadia imagined at the end of Logan, a place in the mountains away from all doctors and their interfering ways, we wouldn’t have done very well.

  No one wants to be a patient. Historically speaking, people began denying the value of scientific medicine at about the same moment that scientific medicine began saving lives. When Joseph Lister came to the United States, he faced tremendous resistance among physicians who did not want to believe his ideas about germ theory, antiseptics, and sepsis. His patients, too, liked to believe they didn’t depend on him, even after he cured them. Perhaps Lister’s most famous patient, William Earnest Hemley, wrote the poem “Invictus” right after Lister saved his life in a series of grueling and daring surgeries. After the operations were over, Hemley burst forth with his famous work, words quoted variously by Nelson Mandela and Timothy McVeigh: “I am the master of my fate / I am the captain of my soul.”

  We like to think we’re in control. We like to believe that we are independent. That’s how we tell stories of medicine, how John McCain “lost his battle” against cancer or how Jonas Salk “triumphed over” polio, as if our fates were captained by our own capable hands. But that’s not true. We don’t go it alone. We depend on each other, we depend on doctors, and this interdependence makes our lives possible and good. At the ACHA conference and elsewhere, I’ve heard heart patients described as “heart heroes” and “heart warriors,” but my informal conversations indicate that most adult congenital heart patients dislike those terms. Experience has taught us. We are ordinary people with extraordinary luck, beneficiaries of splendid technology.

  No one person, no one group bequeathed us this technology. If you consider all the women and men who made modern cardiology possible, the doctors and patients, the nurses and technicians, the people who volunteered and donated to charitable causes, the ones who paid taxes, the politicians and government bureaucrats who allocated funds, the device and pharmaceutical manufacturers, and the brave families of the kids who underwent early heart surgeries, you get a mass movement that includes the widest range of citizens. Pediatric cardiology is something that our parents’ and grandparents’ generation bestowed on us and something that their parents and grandparents could not have imagined. We should accept this and be grateful for it.

  When my mother was a kid, she got scarlet fever. It was the 1940s. Antibiotics were not available. The strep infection in my mom’s throat spread to her chest. Her parents were terrified that she would grow up crippled or worse. This kind of terror was ordinary life, but then the US government teamed with the Bradley Polytechnic Institute in Peoria to mass-produce penicillin, and now ordinary life is antibiotics. Each year in elementary school, my kids got strep. They got their throats swabbed, they went to the doctor, and they got better. The rest of the kids in school got the same treatment, and no one thought about it much—that they were all being treated, prophylactically, for pediatric heart disease.

  We’re all in the Open Heart Club now. We all depend on our doctors. My dependence on medicine may seem extreme, but really it’s exemplary. When my dad was in med school in the early 1960s, congenital heart disease was one of the top ten causes of death in this country. Now 85 percent of children with heart defects survive. We thrive. We’re all over the place. Whether or not you choose to believe it, you are the beneficiary of the same technology that saved us. Every time a pregnant woman gets a sonogram, the doctors check for signs of possible heart defects. In every hospital in every industrialized country, there are protocols in place for every birth, operating rooms set aside, ambulance drivers at the ready, and surgeons waiting to be paged. Were you or your child born in a hospital in the industrialized world in the last half century? Well, then, all of this was there, waiting for you. Welcome to the club.

  I know. If invitations were sent out, very few people would RSVP. No one likes to see your children being stuck by needles. People freak out at the thought of pills and vaccines, let alone scalpels and heart-lung machines. I understand. I have lived my life in a similar state of denial. It’s how most of the people around me live. Well-insured, lucky, and cushioned from sickness, we do our jobs and dance at weddings and make love to our spouses and yell at our children as if the next trip to the hospital isn’t just around the corner. But we’re kidding ourselves, and our state of denial is evident in the way we talk.

  “Health care” is a fudge word. The combo of “health” and “care” seems designed by marketers so that we never have to say the words “sickness” or “medicine.” “Health care” blurs the distinction between the care we give ourselves—like exercise and diet—and the necessary care we get from doctors. The phrase “health insurance,” too, is self-deceiving. The only thing we can be sure of regarding our health is that it won’t last. Our political language is a language of denial, constructed so we never have to speak the words that scare us.

  For my parents’ and grandparents’ generations, the battle against disease was a national cause. When, on April 12, 1955, Jonas Salk’s polio vaccine was proven to be successful, the whole country celebrated: “More than a scientific achievement, the vaccine was a folk victory,” wrot
e Salk’s biographer, Richard Carter. “People observed moments of silence, rang bells, honked horns, blew factory whistles, fired salutes, kept their traffic lights red in brief periods of tribute, took the rest of the day off, closed their schools or convoked fervid assemblies therein, drank toasts, hugged children, attended church, smiled at strangers, forgave enemies.” We have lost that sense of urgency.

  I live a charmed life, as do my friends with their Brooklyn row houses and my tenured colleagues at work, but just outside this circle live my neighbors less fortunate than I, slipping from the borderlands into the kingdom of the sick. There’s an absence in my book, a blank spot. Though Danny Spandau and Bridgette Ratliff and Belen Altuve Blanton and Alan Sabal all fell out of care for years or decades, they were all brought back under the umbrella of medicine. For every patient whose story I’ve told, there are nine others out there who are not under the care of the appropriate doctor, people who don’t have insurance or money, people who live too far from an adult congenital heart center, and people who don’t believe they’re sick. Some of them are doing fine. Others have leaky valves and swelling ventricles. Some ignore their terrifying arrhythmias. Others are in heart failure, just wishing it away. I spoke to an Israeli cardiologist who said that the divide in New York City wasn’t that different from the divide in her home country. There are people with full citizenship in the medical world, well-insured people like me, with healthy heart muscle, and then there are people whose citizenship in the world of health is less secure, whose hearts are falling apart.

  “Our patients are the underdog,” said Mark Roeder, president of the ACHA. “American medicine is complicated. The average citizen is really challenged to negotiate the process on their own. There are a lot of well-intentioned and very smart people trying to work to change the machine that’s in place—but,” he held his breath for a bit—“it’s a long, long process.”

  The moral problem isn’t complicated. We have inherited the magic medicine that gives us the power to rescue children from death, and we have inherited the wealth to pay for it, greater wealth and more effective medicine than ever known in the history of the world. If we choose not to share our magic medicine with our neighbors, if we leave them on their own and make them mortgage their homes to pay for their children’s surgeries (as many parents in the United States are forced to do), then we are doing evil. We might begin to repair this evil by being honest with ourselves, by accepting the fact of our good fortune.

  In Logan, physicians and government officials are portrayed as dark figures engaged in a frightening conspiracy to strip us of our humanity, and I’ve seen a lot of movies and TV shows that run with that same idea, evil doctors in scary, faceless conspiracies to experiment mercilessly on innocent human lives, stripping people of their individuality. Doctors are spooky, doctors are powerful, and—maybe because we’re so dependent on them—we continue to view them with suspicion. But if doctors and government officials have been engaged in any faceless conspiracy, it’s been one in which, over decades, they have worked together ceaselessly, and with tremendous effect, to make our lives longer, healthier, and more productive. Abbott, Taussig, Thomas, Blalock, Malm, Swift, Griffiths, Freed, Rosenbaum, Zaidi, Zhee, and Farhat: all of them are a small part of a massive, complex universe of healers who have made all our lives possible.

  The enemies of these healers are many. There are terrible diseases and craven greedy supervillains yearning to make money off our suffering. But one important adversary that doctors face is simple denial, the desire to pretend that it is because of our own intrinsic good qualities that we are healthy, to pretend that we do not depend on medicine, that our neighbors are not vulnerable, and that we cannot help our fellow citizens.

  Medicine, like climate change, is a difficult subject narratively and politically for Americans because the solutions lie less in individual struggles and rights and more in collective obligations and responsibilities. When it comes to medicine, we cannot rely on our gut feelings, our good habits, our individual strength, and our hopes and prayers. We need to rely on what the experts tell us—experts, in this case, being our doctors. We are not alone. We must love one another or die.

  44.

  JULY CAME, AND so did my valve replacement. I woke up early and anxious. The bedroom was dark. I crept out of bed as quietly as I could, but I woke Marcia before I reached the bedroom door.

  “Big day,” she said, from under the sheets.

  “Excited for it?” I asked her.

  “Oh, yeah.”

  I showered while she was up in the kitchen, having breakfast. I put on a new linen shirt and a pair of cotton pants. Some people show up for their surgeries in fanny packs, sweatpants, and flip-flops, but not me. Hospitals are not resorts; the patient is not a guest. If you don’t assert yourself in the hospital, you can get treated like a piece of meat. So I dressed for success, and I lay on the bed until Marcia knocked on the bedroom door.

  “Come on, buddy,” she said. “Time to go.”

  It was ninety degrees out. Check-in was at 8 a.m. The app on her phone predicted a thirty-seven-minute drive to the hospital. I gathered my stuff: noise-cancelling headphones, phone for music, and a novel by Elmore Leonard. I took the necessary cards from my wallet, and then I scribbled my prescribed doses of medicine on an index card. I folded the index card around my health insurance ID, my Amex card, and the ID for my implanted defibrillator. I wrapped the whole thing in a rubber band.

  Outside it was Brooklyn on a summer morning, people heading to work, carrying iced coffees and sweating, others heading back home from the park with their dogs and babies. Marcia pulled up in front with the car. Here is one of the many small sticking points in our marriage: she likes to use the Waze app and avoid traffic, while I would rather risk a traffic jam than listen to that computerized voice. The rule is, the driver gets to choose, but I was hungry and hadn’t had coffee, and I was very, very, very grouchy. I complained. I didn’t want to hear that fucking Waze lady voice. Marcia futzed with her phone and ignored me.

  “Just drive,” I said.

  “Just wait,” said Marcia. She programmed in the hospital address.

  The night before we had gone out to dinner, to a new place we’d discovered, Dawa, in Woodside, Queens. It was clean and pretty, a forty-minute drive from our house. The owners were father and daughter. He made Mongolian food; she made contemporary farm-to-table. The restaurant felt like some dream of New York City that managed to gentrify without violating a neighborhood, and the meat pies were amazing, and so was the squash stew with buckwheat pancakes. We were going to head back, we told each other, and in the car we talked about which friends we’d bring.

  The robot lady told Marcia to turn left on 9th Street and routed us through the Battery Tunnel and around the south end of Manhattan up toward the FDR Drive. We turned on the radio expecting headlines about Trump, the Charlottesville Nazi march, and congressional dysfunction, but that morning’s news was a transit breakdown at Penn Station. Reporters described crowds packed into the subways. As we cruised the highway, I thought how happy I was not to be in those tunnels underground. Then I remembered where I was headed. We pulled up to the hospital. Marcia wanted to drop me off in the little roundabout they have for patients. I insisted on getting off in the street.

  “Whatever,” she sighed.

  I hopped into the middle of traffic—a New Yorker never feels healthier than when stepping in front of an on-coming van—and marched to the hospital’s front door. The guard at the desk asked if I knew my way. I nodded. The only wrong turn you can make is labeled in big letters: HEART TRANSPLANT.

  In 1999, to put in a new pulmonary valve, they had to crack my chest and carve into my heart. In 2017, the new valve would slide in via catheter, without any cutting into my thorax or myocardium. The valve would travel in through my thigh, through a puncture wound wide as a ballpoint pen. The catheter would travel up through my abdominal pulmonary vein, right into my heart.

  In The
Heart Healers, published in 2015, James Forrester of Cedars-Sinai calls watching a valve replacement via catheter “the single most jaw-dropping, mind-boggling event in my career in cardiology.” The first ever was performed on the aortic valve in London in 2000. The first aortic valve replacement in the United States had happened in 2007. Pulmonary valve replacement via catheter was more complicated, not experimental but not commonplace. At the ACHA conference, a month before the procedure, I went to a physicians’ panel in which experts explained the operation to cardiologists and surgeons unfamiliar with the job. “This is a hard thing,” said Dr. C. Huie Lin, director of the Houston Methodist Adult Congenital Heart Program. “Probably everyone shouldn’t jump into it right away.” Dr. Jamil Aboulhosn of UCLA warned attendees that “taking it to the pulmonary position is really demanding.” He described pushing and pulling the catheter through the passages of the heart, with the heart resisting and going into arrhythmia.

  Again, I had been lucky. My pig valve had lasted longer than expected, which turned out to be just long enough that now doctors could save me without open-heart surgery.

  Marlon Rosenbaum had told me that my heart valve was failing in the fall, after I had gone hiking in the White Mountains, wondering as I climbed if my lethargy was a result of aging or something more serious. I had met my new surgeon, Dr. Alejandro Torres, in October, in his office in the old Babies Hospital building, the same building where my parents had met Jim Malm in 1966. Dr. Torres was about my age, very thin and very friendly, wearing an orange pullover. He had a charming Argentine accent and sunken eyes, and he smiled often as he described the valves and catheter delivery systems that were available.