Open Heart
A Patient’s Story of Life-Saving Medicine and Life-Giving Friendship
Jay Neugeboren
For Arthur, Jerry, Phil, and Rich
Two are better than one; because they have a good reward for their labor.
For if they fall, the one will lift up his fellow; but woe to him that is alone when he falleth; for he hath not another to help him up.
Again, if two lie together, then they have heat: but how can one be warm alone? And if one prevail against him, two shall withstand him; and a threefold cord is not quickly broken.
—ECCLESIASTES IV:9–12
Contents
1 How Little We Know
2 All the Time in the World
3 The Consolation of Diagnosis
4 It’s Not Viral, Goddamnit!
5 Coronary Artery Bypass Graft Times Five
6 The Ponce de León Thing
7 Listen to the Patient
8 They Saved My Life But…
9 One Year Later
10 In Friends We Trust
11 So Why Did I Become a Doctor?
12 A Safe Place
13 It’s Not the Disease
14 The Patient’s Story
15 Natural Selection
16 The Prepared Heart
ACKNOWLEDGMENTS
NOTES
BIBLIOGRAPHY
INDEX
1
How Little We Know
ON AN UNSEASONABLY MILD, sunny afternoon in early February 1999, I drive down from my home in Northampton, Massachusetts, to Guilford, Connecticut, 120 miles away, to spend an evening with my friend Jerry Friedland and his wife, Gail. Jerry is director of the AIDS programs at Yale-New Haven Hospital and the Yale School of Medicine, and he and I have known each other for nearly fifty years—since the fall of 1952, when we were both sophomores at Erasmus Hall High School in Brooklyn.
Early the next morning I leave my car at Jerry’s house and we head in to Yale-New Haven Hospital together. As I have also been doing for the past dozen or so years with another high school friend, Phil Yarnell, a neurologist living in Denver, Colorado, I take a break once or twice a year from my own work—my writing and teaching—to spend a day with Jerry at his work.
This time, however, I am traveling with Jerry to New Haven not to spend a day with him at the hospital and in his AIDS clinic, but because he has helped arrange an appointment for me with Dr. Henry Cabin, chief of cardiology at the hospital, to see what’s going on in my heart. Dr. Cabin, who will take an angiogram of my coronary arteries (injecting radio-opaque dye that makes blockages visible when x-ray pictures are taken), has told me that this is ordinarily an outpatient procedure. Even if he finds significant blockages and decides to perform angioplasty (threading balloons into one or more of my coronary arteries through a catheter to open the arteries), I should be able to drive back to Massachusetts following the procedure. Still, Jerry has insisted that I return home with him afterward and stay another night so I can rest up, and so we can have more time together.
Being with Jerry while he works with patients, staff, and medical students and talking with him about his work have given me great pleasure through the years—have inspired me, really. Jerry is one of my oldest and dearest friends; he is also a doctor whose work with AIDS patients and AIDS research has been literally life-changing and life-saving for thousands of people.
When we spend time together between my visits to Yale-New Haven, we continue the dialogues begun there—discussing patients I’ve met and how they’re doing, talking about his AIDS research and his public health projects, and—as in my ongoing talks with Phil—moving from the particular to the abstract and back again while speculating on the causes, prevention, diagnosis, and treatment of disease in general—about where, in things medical, we’ve been, about where we are, and about where we might be going.
Also, a true joy, knowing each other as we do across most of our lives, our talks have meandered—inevitably, always—along more personal paths as, without needing to impress or dissemble, we’ve tried, in matters having to do with things more private—family and friends, above all—to understand just who we’ve been, who we are, and where we might, in the years ahead, be going. When we are together, the time between visits—whether days, months, or years—disappears. Our conversations, at sixty, are as warm and stimulating—as rich, delightful, and filled with laughter—as were our conversations nearly a half century ago when we were teenagers taking walks together along Flatbush Avenue in Brooklyn.
At the hospital, Jerry walks me through admissions, and, although he regularly puts in seventy-to-eighty-hour workweeks (Gail maintains this is a very low estimate), he seems to have nothing else to do but to be with me, and he stays with me until I am in the room where the angiography is to be performed. Later on he will recall how astonished he was to find that when I undressed to ready myself for the procedure, I had to roll up my clothes and place them on the floor in a corner of the room. If I hadn’t been his friend, he said, he might not have noticed, and this was a reminder to him of how different things often seem, and are, from a patient’s perspective.
When I wake from anesthesia a few hours later, I’m lying on a gurney, and Dr. Cabin is smiling down at me. Although Dr. Cabin is a decade or so younger than we are, he too grew up in Brooklyn, where both his parents were high school teachers, and this, along with his warm, direct manner, puts me at ease. He has straight dark brown hair, is about five-foot-nine—two inches taller than me—and is fit and athletic-looking. I look up at him, my head a bit woozy, and he looks familiar suddenly, like one of the guys I played schoolyard ball with in Brooklyn.
“Let me show you what we found,” he says.
He points to a monitor hanging above me and explains that what I am seeing is film from the x-rays taken of my heart. The lines of colored fluid moving downward and outlining my coronary arteries—bourbon-colored squiggles, in my memory—come from the dye injected through a catheter he had inserted into the femoral artery in my groin.
On the screen I watch blood begin to flow into each of my three major coronary arteries, then stop. Dr. Cabin points to the spot where only a small amount of fluid continues to leak downward and says the angiogram tells us that only one of my three major coronary arteries is working and that no more than 10 percent of that artery is functional. Two of my three major coronary arteries (the right coronary artery and the circumflex artery) are 100 percent blocked, the third (the left anterior descending artery) 90 percent.
Dr. Cabin estimates my ejection fraction, which measures the heart’s ability to pump blood and which is the best general indicator of the heart’s overall functioning, at 30 to 35 percent; in a healthy heart, it would be between 50 and 70 percent.
“You’ve been going on nothing,” Dr. Cabin says to me, and then: “We’re going to try to get you into surgery tomorrow morning.”
“Great,” I say without missing a beat, and it is only later that Jerry makes me aware that my reaction—Hey, this is good news, so let’s go for it and do whatever we have to—is not typical. At the same time, I am, if optimistically, in a daze. I hear everything Dr. Cabin says to me but still seem to believe that in an hour or so I’ll walk out of the hospital with Jerry, get into his car, and drive back to Guilford. Instead of spending an evening with Jerry, however, I may instead—the possibility seems an ordinary piece of information—get to spend my last evening on earth alone in a hospital room in New Haven.
Dr. Cabin tells me that because the arterial occlusions are so massive, I am going to need a quadruple coronary bypass. (Like a bypass that reroutes cars and trucks around an avenue clogged with traffic, a coronary bypass graft, stitched in above and below an obstructed artery, reroutes blood through an unclog
ged artery and around the obstructed artery.) He tells me that he is putting me on several medications to minimize the possibility of a heart attack, that he has already conferred with Jerry about surgery, and that he has put a call in to Dr. Sabet Hashim, the man he and Jerry consider the best cardiovascular surgeon at Yale.* If Dr. Hashim cannot arrange to operate the following morning, a Friday, I will stay in the hospital over the weekend so that Dr. Cabin and his staff can keep an eye on me. The slightest exertion—or no exertion at all—might cause some arterial plaque to flake off, or to rupture, and block the narrow portion of my one coronary artery that is still working.
Open-heart surgery (or, more accurately, open-chest surgery) is, I know, a major event, a procedure that seems as astonishingly primitive as it is technically remarkable: They will crack open my chest then slice open an arm and a leg to harvest a vein and an artery that, after they shut down my heart for several hours while recycling my blood through a heart-lung machine, they will stitch into my heart before reattaching major incoming and outgoing arteries, jump-starting my heart with electricity, and stapling and sewing my chest closed. Even though I will be virtually dead for several hours—my body temperature lowered to 80 degrees (as with hibernating animals, cooling reduces the body’s need for oxygen, thereby giving the surgeon extra time for suturing) while a team of doctors and technicians retrofit me with new interior plumbing made up of spare parts taken from within my own body—the procedure itself, for all the drama and miracle of the fact that one can perform it on living human beings, has become commonplace. Hundreds of thousands of bypasses are performed each year (more than a half million in the United States), and—given my state of health—the possibility of failure, error, or distressing side effects seems minimal.*
Dr. Cabin talks with me about the surgery, and I ask if he was surprised to discover that my arteries are nearly 100 percent blocked.
“No. Little in my line of work surprises me,” he says, and he adds—something he will repeat when I see him for a six-week checkup following surgery—“But you are totally anomalous.”
True enough, I think, for despite the extent of the blockage, I have had few of the symptoms that usually accompany severe coronary disease: no chest pain or discomfort (no heaviness, pressure, tightness, or squeezing sensation), and no arm pain, dizziness, nausea, palpitations, faintness, or unusual fatigue. Luckier still, especially given the magnitude of the blockage, I do not seem, on the evidence of an echocardiogram, to have had a heart attack.
Nor do I seem to have had any of the classic risk factors for coronary disease. Until a week or so before surgery, I was swimming a mile a day, and at a good pace, as I had been doing for the previous twenty-five years, while also regularly playing tennis and half- and full-court basketball (sometimes with teenagers). I had never been a smoker, my cholesterol was normal, and so was my blood pressure. My resting pulse was fifty-eight. By all accounts I was in excellent physical shape and, at five-foot-seven and 150 pounds, I weighed perhaps 5 pounds more than I had forty-four years before when I was a senior in high school.
Genetics and family history? My mother was still alive at the age of eighty-seven, most of my thirteen aunts and uncles had lived well into their eighties, and some had survived into their nineties. My father, who died of emphysema at the age of seventy-two, had had a heart attack when he was fifty-nine, but he never exercised, had been overweight, and had smoked three packs of Chesterfields a day throughout his adult life.
About an hour after my talk with Dr. Cabin, when I’ve been moved to a hospital room and am lying in bed—the first time I’ve been hospitalized since I was operated on for Hodgkin’s disease at the age of eighteen, forty-two years earlier—Jerry comes by to visit.
“Hey Neugie,” he says, using the nickname all my old friends use. “How’re you feeling?”
I tell him I’m feeling a little groggy, and very lucky—lucky they found what they found and that, as I’ve just learned, they can get me into surgery in the morning. (Later, Jerry and Gail tell me they felt lucky too, since Dr. Cabin had suggested that if Dr. Hashim was unable to perform the surgery on Friday they might take me home for the weekend. “Oh my God—what do I remember about CPR?” Gail, a registered nurse, asked Jerry when he told her of this possibility.)
Jerry tells me that after Dr. Cabin saw the results of the angiography, he had paged Jerry and they had discussed what to do next. Jerry says that he was surprised—very much so—at what the angiogram revealed, but that he is pleased to learn that Dr. Hashim will be performing the surgery in the morning. The sooner the better, he says, and he tells me that my swimming and being in such good shape have probably saved my life.
“It seems you’ve been living on your collaterals,” Jerry says, and he explains that the collateral blood vessels I’d probably developed by swimming a mile a day for the past twenty-five years—hundreds of small steady-state blood vessels that lie between and connect the coronary arteries and that cannot expand and contract the way coronary arteries can—had been supplying the blood and oxygen to my heart and lungs that my coronary arteries were no longer providing.
Jerry then describes what he saw on the monitor. “A second or two after the blood stopped flowing into your heart, the entire bottom of the TV screen—the lower part of your heart—lit up, just blossomed with the glow of all those collateral blood vessels,” he says. “It was an amazing sight.”
We talk about telling my three children about the surgery, and this gives me pause—unsettles me for the first time since I arrived at the hospital. For a full half minute or more I cannot speak. Jerry smiles down at me. He is a strikingly handsome man, five-foot-eleven and about two hundred pounds, with a trim silver beard, a full and wavy shock of silver hair, and penetrating gray eyes that remind me of Jewish actors such as John Garfield and Paul Newman who have had the same captivating mix, in their looks, of toughness, intelligence, savvy, and tenderness. When, seeing my reaction, Jerry puts his hand on top of mine, I melt. Is this it? I wonder. Is the big basketball in the sky really about to fall on me?
Although Jerry’s presence comforts, it is also sobering, since he does not hide the seriousness of his concern, and when he asks if I would like him to call my children, I shake my head sideways and see myself, a small boy again, sitting on the floor of my office at home, sorting through my baseball cards and glancing up now and then toward my desk, where the light is on but nobody is working.
For more than a dozen years, I have been a single parent to my three children. By this time, however, the last of my children having left home the previous spring, I am, for the first time in three decades, no longer an on-site single parent. All three have graduated from college and are living on their own: Miriam, at twenty-nine, in the Washington, D.C., area; Aaron, at twenty-six, in Northampton; and Eli, at twenty-four, in Brooklyn, not far from where I was born and from where Jerry and I grew up.
I had told each of my children about driving down to New Haven for the angiogram but, not wanting to alarm or burden them, had minimized its importance: everything seemed fine, I’d said, and I was still swimming a mile a day, but some anomalies had shown up on an electrocardiogram, and we thought it best to check things out further, so I’d decided to have an angiogram performed at Yale-New Haven. That way, I explained, I could also spend some time with Jerry.
When I find my voice, I tell Jerry that I’ll telephone my children. Jerry says that he’ll call them also and that they can stay at his house (into which he and Gail moved two weeks before) for as long as they want.
Jerry also tells me he’s spoken with Rich Helfant and that Rich agrees about the need for emergency bypass surgery. Rich, too, is an old high school friend, and I’ve known him even longer than I’ve known Jerry, since, starting from a time when we were seven or eight years old, Rich and I went to the same Hebrew School (we later played together on our synagogue’s basketball team). Rich is a cardiologist now living in California—most recently he served as chief of cardiolo
gy at Cedars-Sinai Medical Center in Los Angeles; before that he was director of the Philadelphia Heart Institute and chief of medicine and cardiology at Presbyterian-University of Pennsylvania Medical Center—and these past few weeks he and I have been talking nearly every day. In the week to ten days preceding the angiogram, a fact I found both welcome and disquieting, he had been calling me several times each day.
Later that afternoon Rich calls and says he is not at all surprised at what the angiogram revealed and that, based on his talks with Jerry, he has every confidence in Dr. Hashim and the people at Yale. He reminds me that he had been urging me into the hospital—gently, gently, so as not to scare me—for several weeks.
When my family practitioner, while not excluding the possibility of coronary disease, thought the symptoms that had made me call for an appointment—some occasional shortness of breath while swimming—were due to adult-onset or exercise-induced asthma, and when a local cardiologist, finding some anomalies in an electrocardiogram and an echocardiogram, while also not excluding coronary disease, thought the problem was probably viral, Rich had exploded. “It’s not viral, goddamnit!” he had exclaimed, in the first burst of exasperation I’d heard from him since I’d begun talking with him about my concerns. “I want you in the hospital as soon as possible.”
The local cardiologist had recommended that I have an angiogram done at Bay State Hospital in Springfield, but when I called his office to make an appointment, the colleague who performed the angiograms was booked for several weeks. I was persistent and secured a “brief office visit” a week later, not for the angiogram, but to confer about setting up an appointment for the angiogram. Then I had telephoned Rich, Jerry, and Phil.
“Listen,” I’d said to Rich, as I had to Jerry the day after I’d received the results of the EKG and the echocardiogram, “why don’t you guys all talk with one another and then just tell me what to do?”
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