The Open Heart Club

by Gabriel Brownstein

  “The pregnancy did something to the heart,” she told me. “It strained it.”

  One morning in 1993, when she was at work as a fifth-grade teacher, her heart went into an extreme and new kind of palpitation, a powerful thumping in her chest that began at the start of the school day. It was 8:30 a.m. Her heart was running a race, even when she was standing still. She was alone in a classroom with twenty-five students. She told the students to get to their lessons.

  She’s a good, experienced teacher. “A strong teacher,” she told me. With her life in the balance, a single mother with a three-year-old daughter at home, Bridgette set the children at a task at their desks, doing math worksheets. For hours, her heart continued its panicked thumping. When the kids got noisy, she said, “I don’t want to hear a sound!”

  At 11 a.m., it was time for lunch. She lined the children up by size and marched them to the cafeteria, her heart firing BANG BANG BANG all the while. She left the kids with the lunchroom monitors and climbed the stairs back up to her classroom, her heart pounding bloody murder.

  “What was wrong with me?” she asked, as she told me her story. “With a three-year-old daughter at home! How could I do that to my students? From childhood, I was always like that. Very stubborn. I was born with this heart condition, so I wasn’t afraid of it. I had no fear because it had been with me all my life. I kept saying to myself, it’s going to be fine. It’s going to stop.”

  But it didn’t stop. Alone in her quiet classroom, Bridgette sat down at her desk. She tried to stand. She almost fainted. Finally, when she was slipping off the edge of consciousness, Bridgette called the principal’s office. The principal came up to the classroom and saw ashen, blue-lipped Bridgette exhausted at her desk. He offered to call an ambulance.

  “No,” Bridgette said. “Let someone drive me.”

  In the emergency room, she collapsed. When the doctors revived her, she told them the story of how she had gone to work and stayed at work, while her heart beat murderously in her chest.

  “Two and a half hours?” they said. “You could have died!”

  In 1999, Bridgette and her daughter and mother went back to North Carolina. For a year, Bridgette took a job as an elementary school teacher. That spring, she took her students on a class trip to the James K. Polk historic sight in Pineville, in the suburbs of Charlotte. She was leading the children off the buses toward the cabin in which the former president was born, when her heart finally let her down. She could not breathe. She could not walk. Her lips were so blue as to be black. But Bridgette, as was her habit, refused to admit that she was in danger.

  “Somebody else would probably have gone to the hospital right away,” she told me. “I just didn’t. It’s weird. I thought I had a summer cold.”

  When she finally did get to a clinic, she told me, her oxygen level tested at an impossible 67 percent. Normal blood-oxygen saturation is 95 to 100 percent; 90 percent is considered low and 80 percent dangerous. The doctor panicked.

  “Oh my God!” she screamed. “You’re blue!”

  Bridgette, so insistent, so capable, and so seemingly strong, convinced the doctor that she was okay. She left the clinic with some antibiotics.

  That was a Friday. Come Sunday, Bridgette was unable to get off the couch. She couldn’t stand. She couldn’t go to church. She told her mother that she was fine, but her mother insisted and called an ambulance. Bridgette was admitted for emergency heart surgery, and she left the hospital with a new heart valve.

  At this point, the reader who is not an ACHD patient will assume that Bridgette must have reconciled herself to her condition and, back in New York City, must have found an appropriate doctor and submitted herself to appropriate care. The reader would be wrong. After a lifetime of terrifying crises with her heart and a recent heart surgery, Bridgette went back to her old habit: pretending everything was just fine. I can only say in her defense that she is my twin—that her story is my story. You will see, in the coming pages, that in crisis I have always behaved in much the same way that she did. We are typical of our kind—we deny weakness, defy it, and try to imagine it away. Bridgette continued to ignore her symptoms even when they were acute and crippling. Dr. Ali Zaidi was the first adult congenital cardiologist she had met in her life, and it was nearly her fiftieth birthday. There he was, offering to help her, and Bridgette did what she had done all her life. She refused his attentions.

  Siddhartha Mukherjee has written eloquently about how hard it is to help a patient confront her own death. “It is a task almost impossibly difficult to describe,” he writes, “an operation far more delicate and complex than the administration of a medicine or the performance of a surgery.” This is what Ali Zaidi faced as he looked at Bridgette.

  “I could tell she was leaning out the door,” Zaidi told me. “I just very gently said to her, ‘Listen. I think you have Ebstein’s anomaly. I think a valve is leaking tremendously. I really think you need to come back. We need to sit and talk. I need to explain to you what is going on with your heart.’ It took me at least two clinic visits to really walk her through the process. Eventually, when we did the MRI and sat her down, we said, ‘Bridgette, we can really help you, and if you don’t do it at this stage, we might get to a point where we can’t reverse things.’”

  She was facing a heart transplant, but Bridgette insisted on finishing out the school year, going to work all through March, April, May, and June. Like so many patients, she could reconcile herself to living with heart disease but not to any intervention. The very strength of character that allowed her to overcome so much in her life had become a weakness that almost killed her. Colleagues remember how frightening it was—how they worried she would fall down the stairs as she was climbing them, how she worried they would have to take the defibrillators from the wall and shock her to life again. For Bridgette, heart transplant surgery was strangely less stressful than the valve replacement she had had in the 1990s.

  The day after the operation, a doctor put a stethoscope to her back and asked her to exhale. She took in a breath. All her life Bridgette had had trouble blowing out birthday candles. Now, as she blew out, the empty Styrofoam cup at her bedside fell over. Nothing like that had ever happened before.

  “The only way I can describe it,” she told me, “is if I were an athlete, I would have been Serena Williams.”

  13.

  IT HAD BEEN five years since I’d finished an MFA degree in writing at Columbia University. I watched my friends and classmates publish their books. I attended their publishing parties and their weddings. I sublet a cheap apartment in downtown Brooklyn. I supported myself with part-time teaching jobs. Every day, first thing, I sat down at my desk with a cup of coffee. I used the belt of my bathrobe to tie myself to my desk chair so I wouldn’t wander off.

  The novel I was writing had a decent premise. After college Arno Fein moved with his girlfriend, Naomi, into an East Village apartment and became fascinated by the crack house next door. She went to work. He read the newspaper, scanned the classifieds, and drank coffee with his friend Jack Gottlieb.

  But I could not move my novel to action. Arno Fein didn’t get a job. He didn’t have an affair. While Naomi was out of the apartment, he sat at the window and watched the scene on the street. He didn’t buy crack. He didn’t smoke crack. He didn’t sell crack. He didn’t sleep with whores or work with undercover agents. I could not manage his leap into the dangerous world. When I met strangers at parties and they asked me what I did, I said, “I write.” I was not yet a writer. A writer was the thing I would become, I hoped, when I published my novel, won the National Book Award, and in my acceptance speech noted that awards were no true measure of any writer’s art.

  Of course I was incapable of dealing with Marlon Rosenbaum’s news: that I needed to have a test on my heart, that maybe my heart was failing, that maybe I needed to have heart surgery again. Heart surgery! Again! My parents were aghast. For five long years, from 1966 to 1971, almost the length of the entire
Vietnam War, it had haunted them, and they had shielded their little child from the knowledge of the lurking danger. Now the thing we had all buried had crawled up from underground.

  Some ancient deep response was triggered, and we went into formation, fingers into a fist. My mom was in a panic. My old dad rose up onto his hind legs roaring. He was Poppa Bear, and he was going to rip Marlon Rosenbaum’s head off. My dad called up an old acquaintance, let’s call him George Lloyd, a retired heart surgeon who had once worked at Columbia Presbyterian. All the things that had baffled me about Marlon Rosenbaum baffled George Lloyd. If I was asymptomatic, why were they talking about heart surgery? If my cardiologist didn’t want to do heart surgery, why send me overnight for a catheterization? What on earth could Marlon Rosenbaum mean by “prophylactic” heart surgery?

  “It’s bullshit,” said my dad. “Catheterization is low risk, sure, but you don’t let people stick things in your heart just because. You could get an infection, you could have bleeding, you could die. Don’t do it.”

  Though he worked all his life as a psychotherapist, my dad is an MD, good with his hands, generally conservative in his medical judgments, and a strong diagnostician. He can get jumpy about the small details of life, packing a car or wrapping a package, but in a crisis he is focused, cool, and determined. He’s well-read, and his experience is wide. When my dad was in his prime, friends, neighbors, and family stopped by the apartment all the time for advice. Even now that he’s old and in decline, former patients call him when they’re in trouble. By the time I’d gone off to college, I’d stopped consulting him, but now, in crisis, I turned to him again.

  “No,” he said over the phone. “Not unless you know why he really wants to do this. Don’t let him do it just for research of his own.”

  I went to Marlon Rosenbaum’s office in the spring, and I read him the questions I had in my notebook. Each of his answers seemed to make his position more obscure.

  Say that I took the catheter exam, I said, and it showed that my right ventricle was weakening. Did that mean that I would get sick anytime soon?

  Not necessarily, said Dr. Rosenbaum, uncomfortable in his chair.

  If I underwent the proposed surgery, would that guarantee that I would stay healthy?

  He shook his head. There were no guarantees. His desk was cluttered with files.

  I asked, had he ever seen a patient like me go into heart failure?

  No. But patients had come to him after their hearts had fallen apart.

  What did that look like? I asked, departing from my script. Marlon winced and gave me a quick précis of heart failure: immobility, swollen limbs, decline.

  Okay, I said, changing the subject, but what about the surgery: How many patients of his had undergone it?

  None, yet.

  None?

  But there were some good results, he said, in Europe.

  I mentioned my dad’s old friend George Lloyd, who had said that there was no reason, as far as he could see, for me to undergo a cardiac catheterization.

  “George Lloyd? But he’s a heart surgeon.” Marlon pronounced this as if George Lloyd was an air-conditioning repairman.

  Okay, I said, confused. So not George Lloyd—but weren’t we talking about heart surgery? And wasn’t there someone else I could talk to about this, someone who might give me a second opinion?

  Marlon shrugged. He raised his palms slightly. He said, “Not really.”

  I told him I wasn’t going to consider undergoing a cardiac catheter exam unless I could see someone for a second opinion.

  “There’s one guy,” Marlon relented. “Michael Freed. But he’s in Boston.”

  “Fine,” I snapped. “So I’ll go to Boston.”

  “Okay,” he tried to calm things down. “Why don’t we do this? We’ll schedule the catheter exam for the fall, and you go to Boston before then. If Dr. Freed says to cancel the catheter exam, we’ll cancel.”

  Boxed into a corner, I scheduled the test, but privately I suspected that he was on a fishing expedition, looking for data for a paper, like my dad said.

  The truth is, my father was not entirely wrong: Marlon Rosenbaum did want data on me and on people like me. But there was nothing remotely dishonest in his research. There were no data. There was no conventional course of treatment. He couldn’t give me statistical likelihoods on surgical success, because there were not enough people like me, tetralogy patients in their late twenties with big leaks and big right ventricles. He’d seen failed hearts, and he’d heard about successes in Europe, and he thought I was a good candidate for a new kind of surgery. He was the only person within hundreds of miles who dealt regularly with adult congenital heart patients. There was no second opinion in the New York area. I could go to Boston, I could go to LA, I could go to Mayo, or I could talk to Marlon.

  Now it’s become standard operating procedure. Almost all the adult tetralogy patients I’ve met have had their pulmonary valves replaced in a second surgery when they were in their twenties or thirties. For some patients a couple of decades younger than me, the surgeries were expected, part of the long-term plan, but in 1994 Marlon Rosenbaum was going out on a limb. He was going against consensus. His textbook on adult congenital cardiology, published in 2002, has a chapter on the subject, and whenever Marlon talks about it with me, he gets slightly chagrined: he had to temper his language about pulmonary valve replacement in tet patients.

  For him, catheterization was a no-brainer. It was the only way to get a good sense of the pressures in my heart, and it was relatively safe: 99 percent of people who undergo cardiac catheter exams suffer no ill consequences whatsoever. On the train home from the hospital, with the echocardiologist’s jelly still sticky under my shirt, I rehearsed those odds. If there was a 1 percent chance, on every subway ride, that I’d end up bleeding, infected, or dead, I would never go underground. I would always ride the bus. I made the appointment with Dr. Freed for a second opinion.

  I had decent health insurance through my part-time work. After rent, health insurance was my biggest expense. But otherwise, socially, spiritually, and psychologically, I was totally unprepared. I had friends with whom I watched basketball and drank beer and friends with whom I traded drafts of my chapters. But I didn’t feel comfortable talking about my heart, not even with my brothers.

  “You can’t do this alone,” my old friend Anne warned me.

  But doing it alone was my way of doing things. I could not afford a psychotherapist, and I didn’t want a support group. “What I want people to see,” Bridgette Ratliff told me about her own story, “is that there is a God, there is a purpose in life.” But I don’t believe in God the way that she does, and I had no access to her kind of faith. I was engaged in a willful struggle not to see the truth of my condition. My heart was an unspeakable thing dwelling inside my chest. My heart was my mortality, and I didn’t want to look at it.

  April came and with it my visit to Boston to see Dr. Freed. I was late, running underground from the 34th Street subway to the Amtrak hub at Penn Station, down that long nightmare arcade of beggars and commuters, fluorescent lights, and TGI Fridays. That way was New Jersey Transit. The other was the Long Island Railroad. I checked my watch. My backpack jerked on my shoulder. Past the stinking men’s room, I found myself in the big sunless Amtrak ticketing hall. It was almost 10 a.m. My train to Boston left at 10:03. If there wasn’t a long line at the ticket counter, I might make it.

  I pulled out my credit card. I got to the sales counter. Would I make my train, I asked the guy behind the bulletproof glass. He shrugged. He moved his microphone to his left, away from his mouth.

  I bought my ticket. I looked up at the big departures sign, with its clattering placards.

  Fast as I could, I hustled across the hall, past the rolling suitcases and young Euro tourists with hiking packs and businessmen in suits. There was the gate, and the stairs down to the platform, and the last few passengers like me rushing to make it. At the landing halfway down stood a
trembling woman in sunglasses. She held a ticket in one hand and a long white cane in the other.

  “I am in need of assistance!” She held out her white cane with its soft rubber tip. “Please!” She wore a stodgy schoolmarm plaid suit. She was frightened. Her hair looked like a wig. All the New Yorkers rushed past her.

  “All aboard!” called the train conductor. A woman in heels shoved me, galloping for the train, black skirt vanishing into its doors.

  “I am in need of assistance,” the blind woman cried.

  I stopped. The conductor said it again: “All aboard.”

  I took her ticket from her hand. I told her she was on the wrong track if she wanted to go to Baltimore. I gave her back the ticket and took the last flight of stairs in a leap, and made it through the doors as they shut. The train floor started rolling under my feet. I found an empty seat and collapsed into it, breathing hard. My heart was pounding, like I’d just won a race. I raised my face to the ceiling and shut my eyes. Please God, I prayed, for the good deed with the blind woman, save me from heart surgery. Please God, let the doctor tell me everything is fine.

  Funny thing is, in retrospect, if my prayer had been granted, if Michael Freed had told me what I wanted to hear—that my heart was as strong as I hoped it was—I’d be dead now.

  14.

  THE FIRST PERSON to describe my particular birth defect was Nicolaus Steno, the great Danish polymath. He made that description early in the history of cardiology, roughly forty years after William Harvey published De motu cordis. In 1665, in a Paris salon, Steno dissected a stillborn baby and anatomized what would come to be known as the tetralogy of Fallot.

  Steno’s contributions to human knowledge are extraordinary and wide-ranging. He wrote impressively on the glands, demonstrating that the tongue was a muscle and not a gland and that tears came from the lachrymal glands and were not (as was widely believed) watery secretions of the brain. He proved that the heart was made of muscle and showed that bones, after centuries, became fossils. Steno invented geology: he was the first person to see that the earth developed in stratified layers and that the strata indicated different epochs in time. The observations he made on the female reproductive glands were crucial in the development of the so-called ovist school of thought—the notion that women’s gonads produce eggs.