Open Heart (5 page)

This, for example, from a
Time
magazine preface to a Special Issue,
The Frontiers of Medicine
(Fall 1996): “Throughout history, bursts of knowledge—the Renaissance, the Age of Exploration, the Industrial Revolution—have created a succession of new plateaus for human achievement. Medicine is now experiencing just such a surge of enlightenment and advance, producing a parade of breakthroughs so flabbergasting that they are routinely described as ‘revolutionary' or even…by the decidedly unscientific encomium of ‘miracle.'” Or this announcement, in large type on the front cover of
New York
magazine (February 7,2000): “We are going to see a
global conquering of cancer
in five to ten years.” Or this, in a full-page ad in the
New York Times
(October 3, 2000): “At Pfizer we're determined to find the cures of the future. A cure for your father's Alzheimer's, your sister's heart disease, your best friend's diabetes. A cure for the ailments that touch all our families. To help create this better world, we've decided to create an even better company…”

Or consider, too, that the success rate for cardiac resuscitations dramatized on television shows such as
ER
is 75 percent, while the figure in real hospitals is 15 percent.
^*

Although people are moved when I tell the story of how several lifelong friends were instrumental in shepherding me through my crisis—what saved my life as much as the angiogram and surgery, I suggest, was the fact that Rich and Jerry
knew
me and
listened
to me—most conversations invariably return to the “miracle of bypass surgery.”

And who can argue with this? Surely it is wonderful that this procedure exists, and yes, I wouldn't be alive if it didn't. What seems at least as significant as the fact that we could fix what was wrong with me, however, is the fact that we have little understanding of what went wrong, and why.

Although in telling my story I often quote Dr. Cabin saying that I was “totally anomalous,” my initial research suggests that I was not, in fact, all that anomalous, and that what mattered most in my case, as in the majority of cases of heart disease, was not the existence of the disease or the surgery that fixed it, but the
judgment about the
disease
that led to the decision concerning surgery, and the clinical experience from which that judgment derived.

According to the American Heart Association, for example, nearly two-thirds of all sudden deaths from heart attacks in women occur in women who have no history whatsoever of chest pain. And though nearly 40 percent of women will die from heart disease, only 4 percent fear it as their leading cause of death.
^*
(Compare this to the fact that, according to the National Center for Health Statistics, 40 percent of women fear dying from breast cancer, though only 4 percent actually will.)

When I talk about such findings with Rich, who has published a book on heart disease in women, he is hardly surprised. Despite our sophisticated testing and screening technologies, the diagnosis of heart disease, he insists, is tricky and problematic.
^*
And when I talk not only of having been anomalous, but of having been
asymptomatic
, he corrects me.

“You weren't asymptomatic,” he says. “The problem was that the doctors didn't diagnose your symptoms, or their cause, accurately.”

Later on, Rich will walk me through my experience again and explain how and why, from our phone conversations, he became convinced, despite my seeming good health, that my heart was severely diseased and my life in grave danger. Before he does this, however, my research reinforces much of what he has already told me: that except in rare and unusually straightforward cases (a patient presenting to a doctor while in the midst of a massive heart attack, for example), for both diagnosis
and
treatment, it is the judgment of the cardiologist that is critical.

My story, then, may
seem
anomalous, unlikely, and unpredictable, but what I learn is that
many
people, like me, have severe and progressive heart disease without having the risk factors and symptoms we so often hear about. (The high percentage of women who die from heart disease without having chest pain, for example, Rich suggests, is due largely to the fact that in many such instances a woman's heart disease is complicated by the coexistence of diabetes.) The American Heart Association reports that 50 percent of men and 63 percent of women who die suddenly of coronary heart
disease have no previous symptoms of disease, and other studies, as Rich confirms, suggest that up to 50 percent of
all
people experiencing severe coronary disease and/or heart attacks have no traditional presenting symptoms or risk factors.
^*
Moreover, Rich believes that most so-called silent heart attacks are not really silent, but present with symptoms that are either missed or, more frequently, misdiagnosed by the patient's physician.

Until quite recently, most researchers believed that heart attacks were usually caused by the buildup of plaque (a combination of lipids, smooth muscle cells, inflammatory cells, and extracellular matrix) in the arterial walls. When this ruptures, it causes clots that create the blockages that lead to heart attacks. But we now learn that ruptured plaque is found in only two-thirds of people who have had heart attacks.
^*
What, then, causes the clots that cause the heart attacks in the other third?

And what about cholesterol, invariably the first subject that comes up when people talk with me about my experience? “More than a third of individuals who have heart attacks have normal cholesterol levels,” Rich says. “This despite biannual meetings of the ‘experts' who decide that ‘normal' cholesterol is really lower than they said it was at their last meeting, and who say so with no credible data to back them up.”

The number one and number three best-selling prescription drugs in the United States in 2001, Lipitor and Zocor, are anticho-lesterol medications that have been proven effective in lowering cholesterol levels, and doing so while lowering the “bad” (LDL) cholesterol and raising the “good” (HDL). Lowering cholesterol, studies indicate, reduces heart disease and seems especially helpful to those who have already experienced a heart attack or have had heart surgery. In addition, studies indicate that giving the cholesterol-lowering drugs known as statins (Lipitor, Zocor, Lescol, Mevacor, Pravachol) to heart attack patients in the hospital before and after surgery can substantially improve their chances of survival.
^*

But the paradoxical finding, across
all
studies, is that lowering cholesterol does
not
prolong life.
^*
Among people whose cholesterol is reduced there is a consistent, mysterious, and unexplained increase
in deaths from other causes. In addition, most studies indicate that the risk of death
increases
when blood cholesterol levels go below 180 mg/dl. And we don't understand why.

It turns out, moreover, that if
all
commonly known risk factors are combined—smoking, high-fat diets, high iron levels, high blood pressure, markers for inflammation, implicated genes, diabetes,
and
high cholesterol levels—they still account for no more than half the risk of acquiring atherosclerosis. Approximately 50 percent of people with atherosclerosis, that is, acquire it even though they do not have
any
elevated risk factors for the disease. Furthermore, these risk factors represent only statistical associations, not proven causes, and the exact mechanisms by which they may contribute to the development of atherosclerosis are unknown.

In addition, some researchers believe that heart disease is influenced most significantly not by the usual set of biological, genetic, and environmental factors, but by our fetal environments.
^*
The English epidemiologist David Barker has carried out surveys suggesting a relation between nutrition in fetal life and the likelihood of developing heart disease in middle age. In several large studies, he found that death rates from cardiovascular disease fell progressively with increasing weight, head circumference, and other measures of increased development at birth. Among individuals who weighed eighteen pounds or less at one year, death rates from coronary artery disease were almost three times higher than among those who weighed twenty-seven pounds or more. Barker and his colleagues hypothesize, further, that low growth rates up to the age of one year are associated with an increased prevalence both of several risk factors for heart disease and of death rates from heart disease.

And a recent Stanford University and Veterans Affairs Health Care study of more than six thousand men, more than half of whom had an abnormal exercise-test result or a history of cardiovascular disease, concluded that “in both healthy subjects and those with cardiovascular disease peak exercise capacity achieved was a stronger predictor of an increased risk of death than clinical variables or established risk factors such as hypertension, smoking, and diabetes, as well as other exercise-test variables.”

It is not surprising, then, that despite my having coronary arteries
that were almost totally blocked, two doctors, after examining me, after listening to my report of symptoms, and with data in hand—cholesterol screenings, family history, blood pressure, and echocardiogram and electrocardiogram results—while not excluding heart disease, did not diagnose it accurately.

If diagnosis is difficult, the choice of treatment for coronary disease is equally problematic, and here again, it is the judgment of the physician, and not the data from laboratory testing, that is crucial.

When diagnostic tests are competently administered and interpreted, they can, as in my case, identify the existence of coronary disease, its extent, and its physiological effects. But they are, as Rich says and others confirm, notoriously unreliable, or even useless, as guides when it comes to selecting the best form of treatment.
^*

Emergencies and life-threatening situations aside, the better I
know
the person I am treating, my friends tell me, the more effective I can be as a doctor. This may sound unscientific, they allow, but then the practice of medicine is not quite as scientific as people like to think.

“Put a patient with even the simplest set of maladies in front of five doctors,” Rich says, “and you might get five different diagnoses, five different prognoses,
and
five different recommendations for treatment.”
^*
For that matter, he adds, give any five doctors the same set of lab tests and you will probably get a similar range of diagnoses, prognoses, and treatment plans.

“In fact,” Rich advises when, a year or so after surgery, my cholesterol levels are slightly elevated and my doctors recommend that I take a cholesterol-lowering medication, “the first thing I would do would be to take the test again.
^*
If you send the same blood sample to two different labs, there's a strong likelihood that you'll get two different results.” (In January 2001, Rich persuades his own physician to have his cholesterol test redone—to have the same lab run the same blood sample back through its machines. The result? A 17 percent rise in his score, from 152 to 176. “If I had had a 17 percent rise, from 200 to 234, say—34 points above what's supposed to be ‘normal'—and I'd been seeing all the ads about cholesterol and heart disease, I might have gone on a cholesterol medication for the rest of my life, and who knows what the side effects would be for me down
the road, since we have no long-term studies of what these medications will do to us.”)

P. W. Medawar, Nobel Prize-winning doctor for his contribution to organ transplantation, observes that when people speak about the “art and science” of medicine, they invariably get them the wrong way around, assuming that the art involves merely being sympathetic to and talking with a patient, while the science involves the more difficult task of interpreting the results of sophisticated tests, which interpretations will lead to the correct diagnosis. But Medawar contends that the reverse is true—that the real “science” in medicine is, in fact, that thorough understanding of the nature of a medical problem that comes from talking at length with a patient and performing a physical examination that elicits the relevant signs of disease. From such an old-fashioned way of practicing medicine, he says, it is possible to infer precisely what is wrong in 90 percent of cases.

By contrast, Medawar points out, technological tests and procedures can frequently be misleading, and he points to the paradox that the more tests a doctor performs, the less scientific—in the sense of generating reliable knowledge—medicine becomes.
^*

Sherwin Nuland, a Yale physician, surgeon, and author (
How We Die
and
Doctors: A Biography of Medicine
), in considering the idea of medicine as “an imperfect science,” says that he “would go further even than that.
^*
It is not a science at all. It remains what it has always been and will ever be—an art that uses science as well as it can, and too often incorrectly and inconsistently.”

Thus, for example, even when a test does lead to effective treatment, as with Pap smears, the troubling finding is that when the test is performed more often, the result is both fewer missed cases of disease
and
more false-positive results.
^*
Reducing one kind of mistake, that is, increases others. Over the course of her lifetime, a woman's chance of having more false positives, in fact, becomes considerably higher than her chance of developing cervical cancer itself. (In addition, such false positives typically lead to more tests, often inaccurate, and to treatment, and these tests and treatments, while often
conferring little or no benefit—compare the situation with prostate cancer—are themselves anxiety-producing, painful, and risky.)