by David Hebestreit
When I wake, the room is mostly dark, excepting the soft arc of amber light above and the blinking red, yellow, and green lights on the block of machines to my left. The air is sharp against my skin. A cold white sheet, wrapped around my hips, threaded between my legs, is all I have to pull over my nakedness. I try sitting—sternum tight, muscles hinging against one another—but fail to fold my chest. There’s emptiness, though not silence, as pumps whir and compress, the room breathing for me.
I wait: for diagnoses and medicine, for pressures inside my heart to calm, for regurgitation of blood to diminish, for the heart to work like it did nine years ago—orderly pumping blood through valves and ventricles, slickened arteries and vessels carrying the thin, dark liquid to the rest of the body. I wait: for time to pass, for darkness to come, for a single night of rest.
A blood pressure cuff gurgles to life. A door wall slides open. A slice of hallway light cascades over the monitors, the room suddenly halved of its darkness. A nurse enters, checks my wristband. I’ve been here before, each time wishing someone else’s name is printed on the band around my wrist. “Can you tell me your name?” she asks.
“And your birthdate?”
“Three, nine, seventy-one.”
The nurse takes vital signs, checks IV sites, pokes and pulls here and there. She steadies a silvered-stethescope head between her index and middle finger, her thumb resting on my chest, and listens. After I give a couple of deep breaths, satisfied with what she hears, she asks, “Is there anything I can get for you? Are you hungry?”
After three years of waiting in the heart failure and transplant program at the University of Michigan, I left during the summer of 2005. I had grown tired of hearing that I was a perfect candidate for transplant, though my condition worsened, heart function continuing to decline. I’d been on a rollercoaster ride of health since July 1996, when I’d had life-saving brain surgery to repair an aneurysm. In the wake of the emergency surgery, a bacterial infection found its way to a heart murmur that I’d had my whole life, but had skillfully ignored.
At Aquinas College in 1992, for instance, when an athletic trainer who performed the men’s soccer team’s preseason physicals heard the murmur, but saw no notation of it in my health history, red flags flapped in her eyes. “I am sure it’ll turn out to be nothing, but you’ll have to be seen by a cardiologist before I’ll clear you to play,” she said, as I stood in my underwear in the basement of the Aquinas College Fieldhouse in early August.
The next morning, I borrowed my roommate Tammy’s truck and drove the two hours from Grand Rapids, Mich., to Livonia to see my family doctor who hadn’t seen me in about seven years. As a child, he had never said anything about the murmur—at least not that I knew—so I figured I’d start with him. If he wasn’t in, or couldn’t see me immediately, I’d go to a clinic in town and hope that the tiny murmur went unnoticed.
When I got to the office in Livonia, I sat in the waiting room and thought about the story I’d need to concoct to make sure the physical was performed today, so I did not miss my first game of the college season. Before I came to any conclusion about what I’d say, the thin wooden door opened and I was taken back by a nurse. She led me to a room, took some initial vital signs, filled in some boxes, slipped my chart in a plastic holder on the door, and shut the door. I sat a few minutes, nervously shuffling the thin, white paper under me that covered the yellow, padded table. The room was sparsely decorated. But that décor was from another era, resembling my home town of Livonia, Michigan, a city that no one ever seemed to leave, a town that had been largely the same since its inception in the 50s, a town from another era.
Livonia was, in the early 90s, due to its public schools and services, ranked in the top-five places in which to raise a family. As teens we joked that it was because there was nothing to do in town. When people’s kids grew up and moved out, the parents stayed around, refusing to leave their now-too-many-roomed home, the town filling with more and more elderly. The houses and people were a lot like the room I sat in that day waiting for Dr. Tac Tac—from another era, unadorned, sparse. My friends and I, after high school, had literally nothing better to do than sit behind buildings in industrial sections that stretched across the city from east to west along the I-96 corridor. It had been that way for my brother and sister, it was that way for me, and it is that way today, some twenty-five years later.
When the doctor entered, he immediately began talking to me about my father, whom he’d known initially as a coin dealer. “How’s your dad these days, David?” he asked.
“Oh you know, he’s good—still teaching and coaching and playing as much softball as he can,” I replied.
“That’s good. Tell ‘em I said hello and to keep me in the loop if any good coin deals come along. You still playing soccer?”
“I’m trying to. I start at a four-year school this fall,” I said. I handed him the physical information card, identical to the one the trainer at school had been filling out, but blank, and said to him, “In fact, I missed the appointments up at school for free physicals, and I’m hoping you can do this for me today because I have to have it done and turned in this week if I want to be eligible to play on the weekend.”
Dr. TacTac looked over the form for a moment, signed in the appropriate space, and then performed the physical without a hint of skepticism. When he perfunctorily listened to my heart, and asked me to take a deep breath or two, I inhaled as deeply as I could, tried to create as much noise inside my lungs and chest as possible, moved atop the table, anything to cover the extra da-dum that my heart produced as a result of the murmur.
Upon leaving his office, I drove directly to Grand Rapids without stopping to see friends or family. When I got back to Aquinas, I turned in the physical information card to the secretary in the athletics office, bypassing the trainer, the only one who knew about the murmur anyway. I figured she had too much on her plate to remember the heart murmur she’d heard the day before. Likely her findings hadn’t even made it out of the basement of the fieldhouse anyway. That partially-completed physical form was probably sitting in a wire basket on a desk and by the time it made its way upstairs, through a secretary’s paperwork, and on to anyone else who could pull the string on my participation, it would have to be weighed against a now-completed physical.
I made it through preseason conditioning and started in the first game of the season against Grand Rapids Baptist College. In that game, I had a goal and an assist and we won 3-1. No one ever asked me about the murmur, nor the physical. In fact, I never thought about the murmur again until the endocarditis attacked the valves in July of 1996, after waking up from a coma-like state and being told that the infection attacked the “weakest” part of my body: the heart murmur. Had the murmur been properly diagnosed, the brain aneurysm wouldn’t have been prevented, but the endocarditis, which was far more destructive to the heart, may have been.
The infection destroyed my mitral and aortic valves, and weakened the lining and muscle of my heart. On July second of 1996, I played sixty minutes of a semi-professional soccer match. On July third, I lay in a hospital bed in a coma-like state.
Nine years later, in the midday-yellow light of August 2005 in Michigan, while driving north from Livonia to spend a weekend with friends, I heard an advertisement—including an 800-number—for The Cleveland Clinic, “…leaders in cardiac care and transplantation.” I reached for my phone, punched the numbers, let it ring twice, and hung up. An hour or so later, again I called the number. This time I spoke with an operator, who passed me on to a cardiac receptionist, next to a cardiac nurse, and finally to a transplant coordinator. As I was passed to each, I explained the unique circumstances I’d told to countless healthcare personnel for many years. Karen, the coordinator, didn’t want stories, though. She quickly asked about my heart function, about numbers and percentages: “What’s your ejection fraction? Are you active? Still working? Can you sleep flat through the night without waking up?”
The phone call carried me the last forty-five minutes to Spider Lake, near Traverse City, MI. At Spider Lake, a large group of friends would hear nothing about the call to get a second opinion, yet would visit me in the hospital months later, offering both support and distraction. During that phone call, I’d booked an appointment, a second opinion. Later that month, after an overnight stay and a battery of tests, a doctor from The Clinic Transplant Team, sitting in a chair next to my bed, explained, “It’s a shame you haven’t been taken care of…” and “Come here the next time you get sick. We’ll take care of you.”
Pausing, refocusing on her work, the nurse pulls back the gown covering my chest and looks at the dressing nearest the pain.
“This looks like a good dressing. Are you sure you don’t want something to eat?”
I’m in a catheter lab, recovering. A central line, pushed through my breast plate the night before, delivers life-prolonging IV medicines Milrinone and Dobutamine during my wait—a wait that, though in its fourth year, is only beginning.
When she leaves, I notice for the first time a thin, clear tube running from one of the machines, falling across the brushed silver rails of the bed, disappearing into folds of white, worming its way into my body somewhere. An attached drip line slithers over the edge of the bed. I feel for the familiar raised button at its end, give a soft push, hoping to drift, forget, cut my wait, if only a few minutes.
Ventricular Tachycardia (V-Tach) began rummaging through my heart after that brain surgery in 1996. V-Tach was brought on by endocarditis, the infection that was discovered in blood cultures after the brain surgery I’d had to repair a ruptured blood vessel. The endocarditis—a bacterial strain of the infection—likely in my blood since a root canal performed by a dentist two weeks prior to the aneurysm, ate through my heart’s mitral and aortic valves, as well as portions of the lining of my heart, leagthening and weakening the muscle. The valves became sieves, allowing blood to return to the heart, filling it like a boat sinking—water filling the hull, then the wheelhouse, electrical systems the first to fail—the heart growing larger, less efficient. Those valves could have been protected from the endocarditis. Had the dentist known that I had a heart murmur, likely I’d have been prescribed antibiotics, a typical prophylactic against such infections that damage the lining and valves of the heart. But my murmur had gone undiagnosed due to my diligence in covering it up.
In May of ‘97, in an effort to repair the damage done by the infection in July of ‘96, mechanical mitral and aortic valves were inserted into my heart via open heart surgery at Beaumont Hospital in Royal Oak, MI. After open heart surgery of about four hours, mechanical aortic and mitral valves, made of titanium, left me with a ticking that was noticeable in a quiet room, or a car stopped at a red light, the ticking similar to the blinker of a car. The valves worked well, well enough to permit me to return to playing and coaching soccer, as well as begin teaching English that fall at the high school I attended as a teenager. Because the valves were titanium, though, I had to take coumadin, an anti-coagulant that limited my ability to do what I wanted. No longer was I supposed to play soccer, downhill ski, ride a motorcycle.
Over time, however, the damage done to the heart—not just the valves—could not be reversed nor medicated in a fashion that returned me to the quality of life I once had. My heart grew so large, due to blood regurgitating, and so weak, due repeated bouts of V-Tach, that it was unable to efficiently move blood throughout its interior, much less push that blood out to the organs that needed it.
V-Tach is fickle but ruthless. Its hop-scotch starts deep in a ventricle, and rises, cold, tightening the chest, the lungs and throat thickening. It’s an electrical misfiring in the heart, an information overload, like a computer freezing up. Somewhere between the sinoatrial node in the right atrium, where heart contractions are triggered, and the lower chambers of the heart, where the process reverses, electrical impulses collide, confused. An enlarged heart—one weakened by endocarditis, for instance—may experience arrhythmias crude enough to stop its rhythm for good. Short of that, these kind of arrhythmias often send the heart into a “hyper drive,” elevating heart rate above 200 beats per minutes. In my case, doctors and nurses were sometimes unsure if its powerful grip would ever relax.
A compliant heart follows routine. Waves of electrical impulse run calmly down and across the muscle, patterns starting at the top and draping down, pushing and coaxing blood into chambers, through important valves and ventricles. V-Tach turns hearts non-compliant. A diseased heart is often noncompliant, confused, and absent of synergy. V-Tach shortened my ability to breathe, woke me, forced me upright in bed at night, gulping at sharp, black air. Even after a defibrillator was implanted below my collar-bone in 2005, the black disc a little smaller than a Ho-Ho, V-Tach tossed my heart like clothing tumbling in a commercial dryer.
The vast majority of the population finds waiting irritating, unnecessary, even destructive. Some go as far as to say this or that wouldn’t have happened—a car accident, for instance—if it weren’t for having to wait for a train, or perhaps a friend who’s not ready at a designated time. When having to wait in lines outside of sporting events or at the airport, I get impatient with disorganization as others pass without pause, carrying on with their evening, their trip, outmaneuvering me like a knight in a game of chess. I was guilty of this and allowed idle thoughts to crowd one another, giving rise to conspiracy theories during the years between the aneurysm and going to Cleveland Clinic. If only this, if only that, why me, what did I do? But waiting is something I’d perfected; patience, not part of my nature, was pressed into the fabric of my being like a thumbprintmin dark, wet sand—sand made compliant over time, water pushing and reshaping it.
We, too, often want every desire fulfilled immediately and fail to consider that the universe may be providing what is needed precisely when all parties are ready. Certainly the wait at a traffic jam, for instance, is much different than the wait of dealing with the uncertainty of illness. The wait at a traffic light is familiar, predictable; the wait in an uncertain situation, one that may provide an unknown change in our lives, is ambiguous, elusive. While waiting in traffic, we can see progress, even if slow, can gauge how much distance we’ve traveled, which buildings we’ve passed, or how much closer to the next intersection we are. My time at The Cleveland Clinic was pure wait: I had no knowledge of how long I’d be there. I told myself I’d get it taken care of in two weeks, be back to teach high school English again after Christmas break. Some stroke of luck would get me the heart I needed—a motorcycle accident on the slick, helmetless December streets of Ohio, or perhaps, a robbery in the rust belt city of Cleveland itself leaving some unfortunate brain dead, yet still alive, giving me a heart that matched.
As the wait continued, however, my attitude changed. No longer did I think I would change the transplant protocol, slip through some clerical crack, as I had so many times in other walks of life. No, I was privy to nothing special, merely a number in an ever-recalculating list. The wait for a new heart was imposed on me and, once in the middle, I saw no progress toward a positive outcome. Days were meaningless, weeks became months. I became sand—shaped by what runs against it—all day, all night—motionless.
Thoreau got glimpses of waiting when he took two years off to spend time watching the forest turn from summer to fall, from winter to spring, when the ice on the surface of a pond finally gave way to warmth and pressure, softening into a honeycomb. And although he appears in Walden to be the ultimate patient, I’d bet even he had moments when he thought, Come on, Ice. Melt already, would ya?
Hospital rooms were cold clichés of loneliness and isolation. Shades of color washed into grays, turned gunmetal. Even in the morning, when sun eased through the window, it provided no warmth. Before too long, I didn’t need light. I’d go entire days without turning on any light in my room. Even during blood culture collection, which occurred sometimes in the middle of the night, the beam from a nurse’s penlight was too much: turning my head, nurses’ uniforms were swirls of white soaked up in the darkened night pane of the window. Three times daily, blood vessels were poked at the crook of my arm, blood drawn, examined. I waited for the results to be different, for heart function to improve, for medicines to be reduced. I waited for something new, something different. Something that would make me feel whole again, and allow me to return to an active life.
To get through what became eighty-eight days waiting for a heart on the eleventh floor at The Cleveland Clinic, I played games with my mind. And with time. I’d stroll down to the main entrance, through the double sliding doors, to the lonely bench out front, to watch people come and go. I’d walk the hospital campus, its labyrinth of secret corridors becoming familiar over the time I spent there. I stayed away from my room, from the eleventh floor, as much as possible—though I was not supposed to be off the floor longer than thirty minutes at a time. I knew those in charge of my care were also busy with other patients, people sicker than me, who kept nurses and doctors too occupied to worry about how long I was gone. Because my heart could stop beating at any moment due to V-Tach, I wore a monitor twenty-four hours a day, a monitor that did not report data while I was away from the floor.
Sometimes I’d slink out the front door, across the street to Rite-Aid, for a box of Cheez-Its, perhaps a Country Time lemonade—anything to alter the ultra-bland, cardiac diet of the eleventh floor. The food was absent of flavor, and I often left large portions on the tray. A cardiac diet reduces the average American’s daily intake of salt by about half. This is why I ordered pizzas, had them delivered to an employee entrance, and sat and ate the whole thing in the lobby, nurses and doctors passing oblivious, I thought, to what I was doing. When I’d fall asleep without eating food from my tray, sometimes I’d wake to my father sitting in the chair next to the bed eating from the tray, not wanting the food to go to waste.
A few times during my wait, I was coaxed into beginning a puzzle by Norma, the daughter of a woman waiting for a second lung transplant, who assured me it’d be calming. I never finished one, as I am lousy at fooling myself into believing that putting back together the pieces of a predetermined picture holds some value.
I started self-diagnosing the need for three milligrams of Morphine, and then twenty-five milligrams of Phenergan, two narcotic meds, one after the other—one for pain, one for nausea, respectively—promising the haze of medicated sleep. After two months a doctor explained, “A dependence on narcotic meds doesn’t help us see you as a good candidate for transplant.” My chest pain and nausea disappeared as quickly and mysteriously as they had arrived.
Always at my side was an IV pump on wheels. A central line delivered the Milrinone and Dobutamine twenty-four hours a day. Given enough time, the meds would damage my heart with worsening arrhythmias and hypotension—low blood pressure—other organs beginning to suffer as a result of the high doses, nutrition declining. I covered the thin tubing when I felt like showering, layered my chest with plastic wrap and tape to protect the site from infection; when I tossed and turned at night, the tubing twisted around my arms and legs, tugged at the point where it snuck into my body through flesh bruised purple, green, yellow.
While in this limbo, I tested the semantics of rules that had been established long before I arrived. To kill time, I’d wander into Rite Aid or the four-star hotel bar and restaurant connected to the hospital. People stole looks at the IV pole, the pump, at the thin tubing slinking out from the bottom of my t-shirt. On New Year’s Day, when I ordered a glass of Pinot Grigio in the hotel restaurant, my skin the color of ash, I thought I’d have to meet with a social worker, sign another contract promising not to drink alcohol while waiting for transplant, comply with more rules. I’d signed two such contracts inside of the first month. The first was when a nurse in charge of my diet came in to tell me that I could no longer order pizza to the employee entrance, that I had to eat only what the hospital provided me. She stood eyeing my room, saw a box of Cheez-Its on the windowsill, lazily waved with her hand and said, “Those will have to go.” The DVDs, the edible arrangement, that Slinky? I thought, and then realized … Oh, those. The second meeting and signature were needed when my then-girlfriend and I decided sex was an appropriate activity in the room, separated by just a curtain from my roommate, a man nearing death. My heart rate climbed above 180 beats per minute like it did during spells of V-Tach, my heart monitor recording this sudden rise, alarms in the hallway screaming. Nurses came racing into the room expecting to find me writhing in bed in the grip of V-Tach—instead, they found my girlfriend on the bed; I was in the recliner next to the bed, heart racing along, though I was sitting, managing only a shoulder-shrug of uncertainty. I never again ordered pizza to the employee entrance at the Clinic and never again performed an act of sex while wearing a heart monitor on the eleventh floor.
In early February, I contemplated leaving the hospital because the wait was too much for me to bear. I had already left U of M in the summer of 2005 and had I left the Cleveland Clinic, I would have found it difficult to find another center willing to risk accepting me into its program. A transplant center is a business, like any other. Projected outcomes and life expectancies are arrived at scientifically. Compliance with pre-transplant routine is a transplant center’s largest indicator of the success that a transplant patient will have post transplant. The routine, the twice-daily, some times three-times-daily, medicine doses are extravagant in the early months and years after a transplant. Patients who exhibit even slight non-compliance are usually deemed less desirable.
During the second week in February a fellow teacher visited me at the Cleveland Clinic. She brought some candy, the movie “Mallrats,” and a mix of music on a CD. She stayed most of the afternoon and into the evening and, as she left, while walking her down to the main entrance to say good-bye, she hesitated and pulled a joint out of her jacket pocket and said, “You’ve sounded so down the last few weeks, I thought I would cheer you up with a J.” I didn’t think twice about smoking it with her, on the bench right outside the front entrance, the smoke curling up the side of the building, some of it wafting in through the main entrance sliding doors. When we finished only a third of it, and she asked if I wanted the rest, I didn’t consider an answer other than yes. After she walked away, as I walked back up to the eleventh floor, past all the pumps and machines in the now-crowded hallways, I felt trapped and confined unlike any other day in the previous fifty-five. When I passed the nurses’ station and headed to my room, with two-thirds of a joint in my pocket, smelling to high heaven, I am sure, the walls closed in on me and, for the first time I thought, This isn’t right. I can’t continue this routine.
When I was about 11, I taught myself to play chess. One day, while rifling through the stack of board games in my childhood home, having bored myself with staging elaborate games of football between teams made-up of Star Wars figures, tired of Boba-Fett making some clutch grab at the corner of the end zone in the dying moments of the game, I discovered the collection of black and white pieces. Rooks, knights, bishops, queen, king, pawns—a cast of strangely intriguing characters, each intricate with detail—a prop or weapon perhaps—the Queen a rosary, the bishop a cross, the pawn a necessary shield—their faces like the raised portion of the coins I had tinkered with helping my father sort, stack, and wrap Buffalo Nickels, Morgan Silver Dollars, and Franklin Halves in his coin room in the basement as a child. Each chess piece rested upon a green felt disc at its base, allowing it to slide softly across the white and black squares. Chess intrigued me because it was a quiet, thoughtful game of improvisation, a game in which each piece had complexities that changed with each move, each piece always on the attack yet defending at the same time.
While killing time roaming the antiseptic hallways of the eleventh floor of the Cleveland Clinic another patient I’d had brief encounters with asked, “ Hey … you play chess?”
“For sure. I love it,” I shot back.
Brian was about my age, I thought, about my height and weight, and was waiting for an organ of some sort, or he wouldn’t be on this floor. Those were details I could see, could know without asking, without prying. As we played he told me he was from the Toledo area. Toledo was a lot like some of Metro Detroit in my mind—industrial, failing, cold. It was a place we often had to drive through, but a place we rarely found a need to stop in. And what better way for two dudes who had failing organs to spend time together than to play chess?
Brian’s mother was always around the floor. Often she stayed overnight in an end lounge, a couch or two pushed together her makeshift bed. She’d knit or read in her son’s room, perhaps at the end of the hallway. She was pleasant, quiet. And I never saw him with other visitors. Often I would pass his mom in the hallway, or see her when I used the community computer at the end of the hall. But she and I never spoke, in fact, hardly acknowledged one another. While the hospital had required Brian and me to go to transplant meetings—to help us understand how our bodies would react while we waited for transplant, how the different meds would affect us, even what to expect after transplant—no transplant personnel ever broached the topic of what happens in a patient’s mind before, during, and after transplant. They never prepared me for the long, lonely periods, the repetition that plagued me that though most of the day.
Rarely did I respond to anyone that did not ask a direct question; even then, sometimes, it took a lot to move me to respond, wasting away days watching the TV series “Lost” or simply lying in bed staring at the dry erase board on the wall at the foot of my bed, the one listing the shift nurse, technical assistant, and doctor in charge of my care. I tried to sleep as much as I could. But I’d wake at night and stare at the red numbers on the digital clock, learning that only 4, 5, and 6 are made up of the same number of lines as their values: 4 had four lines, 5 had 5 lines…. I stayed in a cocoon-like world until someone disturbed me from it. It was a method that had served me well in other aspects of my life—when I traveled in Europe, or when I moved to, and lived alone in, San Francisco.
I moved easily through lonely and quiet months outside of the hospital. I thought I would skate through the month I’d thought I’d wait in the hospital. When one month became two, and two became three, I started to wobble. One night in February, my mom visiting me late into the evening, I could no longer take the wait and told her that I was considering leaving the Cleveland Clinic to go back to Michigan so that I wouldn’t be so lonely all the time. After crawling into my bed to comfort me like I remembered when I was young, she told me, “David, I know you’re going to make the right decision for you. You always do.”
The entire eleventh floor was for patients waiting for, or recovering from, transplant surgery. Brian and I had seen one another in the hallways of the hospital, or in transplant education classes prior to ever playing chess, but we had not spoken beyond simple, forced introductions. On the eleventh floor all sorts of people were waiting for organs, and none of us knew who was waiting for which unless we asked. The only time we ever found out was if the patient was a roommate. I experienced a merry-go-round of roommates during my three months, but never shared a room with another patient waiting for a heart. I have held onto the notion that there is too much competition in that bargain, donor hearts hard to come by when compared to the living donors—kidney and lungs, for instance—that hospitals may actually fear foul play among roommates waiting for the same organ.
I became close with an elderly woman named Betsy who was waiting for a lung transplant, and with her daughter, Norma, the woman who had suggested I put a puzzle together and then when she knew I still hadn’t, bought one to tempt me. An elderly man named Dick had just received a liver and had shared a room with me in two stints of a week or ten days each, he and his wife playing Euchre with me, sometimes three-handed, sometimes another patient as my partner; and, there was Yocie, an ancient Croatian with bushy, white eyebrows, also waiting on a liver. He was a man who spoke no English beyond basic responses. “Yes. No. Coffee.” The only time he perked up was when a friend of mine, “Five Mile,” showed up, and they spoke for a few moments in native “Yugo” tongues. There were others who passed by on the their daily walks; all of them in varying states of dis-ease, remaining mostly empty vessels—tired, quiet, docile. Each patient had his or her own method for dealing with the wait, the discomfort and uncertainty of transplant.
I had several dry runs, when a heart was found and thought to be viable. On each occasion, for one reason or another—a smoker’s heart maybe, or the procurement team finding some dissatisfying element—it was determined not to be a good-enough match. One time, I got so close that I was partially sedated and taken to the operating room only to be carted back to my room after the heart wasn’t harvested. The staff heard me blurt more than once, “Just give me any heart. I don’t care if it’s a smoker’s. I’ve got to get out of here.”
Liver-transplant patients were the most entertaining of roommates. One night I shared a room with a guy who’d just come from the recovery room. I never learned his name—he went as quickly as he had come, his body not accepting the new liver. That night, I woke up when the white curtain which separated our halves of the room was ripped toward the wall between our beds. Unless medicated, I never slept well—the light from the hallway, the noise of pumps and machines, the constant collection of vital signs, all intrusions into sleep—so when he tore back the curtain, I snapped to face him, his left hand gripping the curtain, his right arm stretching toward me. He reached his arm across the gulf between our beds, offered, “Hey, man, wanna shot a whiskey?” The level of ammonia in his system had elevated so aggressively after receiving his organ that he was hallucinating. He went on to tell me, “Hurry! Before the old lady finds out you’re here.” The moment passed and he returned to his medicated slumber and I reached back and separated our dark halves of the room with the white curtain and sat and thought about the curtain until it stopped swaying.
Later in the night, I woke to the sound of rain. Looking around for the noise in the dark room, I realized it was my roommate standing in the corner of the room peeing into the trashcan near the window. Not long after, the man was moved and the room grew empty, quiet.
Brian and I played chess several times in that first month of my waiting. Usually we played in the end lounge by the computer near the elevator. Once in a while we would play a game down in the main lobby of the hospital, but Brian didn’t like to leave the floor for longer than the prescribed thirty minutes. One day we played in his room, though—me sitting on the cracked, green, leather recliner that was just like the one in my room. Brian sat on the edge of his bed, the thin, yellow blanket neatly tucked into the corner at the head, the white sheets peeking back over the top of the blanket, military style—clean lines, sharp creases. My bed was never made; hardly was I out of it when the techs came in to change sheets, clean the room, or weigh me in the morning. I stayed in bed long into the afternoon most days, through doctor and nurse visits, sometimes never getting out of bed, resisting showering and other expected hygienic duties.
The board sat atop his dining table, the narrow surface barely large enough to hold the board. It was mid-January and Brian had been there three months. And he wasn’t optimistic. His condition was worsening, but slowly. I had been there a little less than a month and was still certain that I would be out of there soon.
Brian found the chessboard at the end of the hallway in what was supposed to be a game room, a place for entertainment and escape. I never saw it that way, though, as it was just some tables, a few puzzles and board games, and all of the extra equipment and furniture piled up in any old manner. Still, the chess set represented something different than the routine of waking, urinating, weighing myself, eating, maybe showering, and then trying to figure out what to do with the next twenty-three hours of the day and night. While we’d played a few games by this time, we still hadn’t shared much, instead filling the time between moves with accounting for the massive number of possibilities each move carried, all thirty-two pieces having the ability to change the outcome of the game, a seemingly innocuous move leaving one or the other regretting, wanting a do-over, a reordering of the past.
This day, Brian and I did start to talk about our own experiences, and told one another why we were at the Clinic. I learned that Brian was my blood type, and was waiting for a heart—things I wasn’t able to see previously. There are countless items that make a good match for a donor heart: approximate height and weight are two for all candidates, because the heart is a muscle that must move blood the same distance, or through the same area, in the recipient’s body, as it did in the donor’s; for me and Brian, as O-positive blood types, an O-positive donor was necessary, shrinking tremendously the number of possible donors. For O-positive blood types (all O blood types, actually), the wait is longer than any other blood type, the number of possible donors about one fifth. This is true because patients with any other blood type can receive an O-positive heart as well as their own type. I didn’t understand this important element, an element that would force me to sit idle while fourteen patients came through the clinic between December and March and received their donor heart before me. While they may or may not have been sicker than I was on the day they had their transplant, none of the hearts were a good-enough match for me. During the thirty-one days I spent in the heart failure ICU, none of the hearts that came through The Cleveland Clinic were O-positive, or I would have received one of them, as for those thirty-one days I was at the top of the O-positive list in my region of the UNOS (United Network for Organ Sharing).
Within a few moves of learning this information about Brian, one of my knights put Brian’s king into check. A few moves later, that knight, my queen, and some pawns forced him into a cul-de-sac, into checkmate, and the game was done. It was the last time Brian and I played chess together, as my condition worsened quickly, and I spent weeks at a time in the heart failure ICU, due to my ejection fraction falling below five percent. When this happened, my room was packed up, my things moved into boxes and then into a storage closet somewhere, no one certain if I would ever return for them, the bed immediately receiving another patient.
I spent ten to eleven days in the heart failure ICU three different times, each time, a catheter fished into the artery in my neck, its thin angel-hair-like pasta of a probe pushing through the artery and into the heart, monitoring the exchanges of gasses in and around the heart; a blood pressure cuff sealed around the bicep of my left arm twenty-four hours a day. In the middle of the night it stirred me from my light sleep, its increasing grip familiar. Each time my heart function dipped and spiraled, it was V-Tach further weakening it, bringing me closer to transplant, closer to death, perhaps.
I lost track of Brian after I had back-to-back bouts of V-Tach in early February, when I was rushed off the floor and to the ICU for the final time. And then, after eighty-eight days of waiting, while recovering from my transplant, the strong heart of a woman calmly beating in my chest, as I walked through those eleventh floor hallways getting stronger, Brian’s mother stopped me. I had seen her coming from a bit of a distance and she made a point of making eye contact with me for the first time. As she drew closer to me, moving to my side of the hallway, she reached out her arm and touched my left shoulder. I was ready to accept her congratulations, as I had done so many times in recent days. But her eyes were heavy, watery, and, instead she said, “You stole my son’s heart. That was his heart.” Her son had been waiting longer, and he deserved to get a heart before me in her eyes. And maybe he did, but that was beyond my control, left to a computer and a procurement team of experts who, like Mother Nature, inform the world, decide fate.
Like Thoreau leaving the woods for as good a reason as he went, that he had other lives to live, I walked away from my long wait—eighty-eight days at The Cleveland Clinic, but four years total—knowing I had no more time for that life. And today, that wait seems nothing more than space between moves in a game of chess, or the moment between breaths, the rhythm now a simple one to find, to know, to keep, a necessary period of wait, allowing the universe to get to me at just the right time and with just the right stuff. And now when I think about the what-ifs, I know that a day sooner or later, I wouldn’t have this heart in my body, the heart of a woman who was a perfect match, the heart that would allow me to return to a fully active life. And who could have known that the heart would, in some future year, allow me to coach and play soccer again, hike a mile down into a valley along the ocean in Hawaii, a valley with no hospital, no electricity even, and to do so without worry of heart malfunction or of the ability to be present in the moments between experiences.
David Hebestreit is a high school English Language Arts instructor at Winston Churchill High School in Livonia, Mich., and the head soccer coach of Toledo United FC. He recently graduated from Pacific Lutheran University’s Rainier Writing Workshop MFA program. Hebestreit lives in Northville, Mich., with his fiancé (and soon-to-be-wife) Jennifer Imasnde.