The author's father had four heart attacks and died at 55. She was 47 with bad cholesterol numbers. Modern medicine, she discovered, had an antidote.
BY CECILIA CAPUZZI SIMON, Washingtonian magazine, February 01, 2005
It is a brilliant day in late summer, and I am lying on my back inside a glossy-white CAT-scan machine in a dimmed room, electronic beams shooting at my heart. In a few minutes, this test, known as a "heart scan," will provide my cardiologist with vivid pictures of my ticker, coronary arteries, and any calcium deposits within--a measure of my risk for heart attack.
I would seem an odd candidate for such a procedure. I do not smoke, I am not overweight, I've never had high blood pressure, I do not have diabetes, I exercise pretty regularly, and I watch my diet.
On the other hand, I am a 47-year-old woman, part of the demographic group that most overlooks its heart-disease risk and that has been most overlooked by the cardiology community. I have a terrible family history of heart disease--the number-one risk factor. My father, who suffered his first heart attack at 42, died of his fourth at 55. He is on my mind as I lie in the doughnut--him and a high cholesterol reading I received six weeks before.
I had done the cholesterol screening as part of a story I was writing to advise readers about how to gauge their heart health. I had started the assignment with journalistic detachment, but what I learned combined with my cholesterol numbers and family history to make me feel vulnerable. I was at risk. Indeed, all of us are.
One in four Americans has heart disease, the nation's number-one killer. This year, some 930,000 will die from heart attack, stroke, or other circulatory-system problems. That's about as many as the next five causes of death combined.
While the heart-related mortality rate for men has dropped over the years, it's rising for women. More than 53 percent of those who die from cardiovascular disease are women. Breast cancer, the greatest health concern of many women, kills 42,000 a year--about a tenth the number of women who die from heart problems.
The American Heart Association says most women don't know these facts. We are ignorant about our risks and how to reduce them. That means a disproportionate number of us will die of heart ailments.
Heart disease is at such epidemic proportions that cardiologists assume everyone is on a track--or "continuum," as the AHA says--toward the disease, which develops over time. Instead of waiting for symptoms to show, doctors are increasingly focused on prevention--screening and evaluating individuals who are seemingly symptom-free but who have risk factors.
"The whole idea behind cardiac treatment now," says Paula Faria of Washington Hospital Center, "is not to wait until the heart is irrevocably damaged but to recognize mild dysfunction and tackle it early on. That's revolutionary thinking in the last ten years."
The public, and some doctors, have not caught up with the revolution. The new challenge in treating heart disease is to get seemingly healthy people to pay attention to their hearts--then work to stop, or at least stall, any progression of the disease.
"What we're trying to do now," says Dominique Ashen, nurse practitioner at the Johns Hopkins Ciccarone Preventive Cardiology Center, "is to reduce in people every risk factor for heart disease so that if you've already had a heart attack, it never happens again. And if you have not, it never happens, period."
Heart disease is a "silent killer," says Dr. Edward Bodourian, chief of cardiology at Suburban Hospital in Bethesda: "It is a very gradual, subtle process that occurs over decades."
About 88 percent of those who have heart attacks would have been labeled low to moderate risk if they had visited their doctor the previous day, according to a study in the Journal of the American College of Cardiology. For a quarter of people with heart disease, their first sign is a full-blown heart attack.
The symptoms--shortness of breath, fatigue, weakness, anxiety, indigestion, palpitations, chest and shoulder pain--are common signs of less-severe ailments, stress, and even weariness after a long day. About 20 percent of heart-attack victims don't even know they've had one.
Like most people, I had read the AHA "warning signs" for heart attack so many times that they became almost meaningless--more white noise in a busy life, like the big red "Heart Healthy" heart on my kids' Honey Nut Cheerios box. I knew I should be paying attention, but it just didn't register--until I got my scary cholesterol report.
When I was assigned to write about heart health, one of the first calls I made was to the Women's Heart Program, an 18-month-old clinic affiliated with the Cardiovascular Center at George Washington University Hospital. It's designed to raise awareness among women about their risk for heart disease.
Anyone can make an appointment--no doctor's referral is necessary--and for $50 and about one hour of time walk away with a personal risk profile. This includes a "finger prick" blood test done after a dietary fast that yields a quick measure of cholesterol; a triglycerides score for fat in the blood; and a glucose test for diabetes. Blood pressure, weight, and body-mass index--the relationship between your height and weight--are evaluated, as are lifestyle factors including smoking, exercise, and diet.
Patients are screened for metabolic syndrome, which is a combination of several of these risk factors with obesity. Individuals diagnosed with metabolic syndrome are at increased risk of heart disease.
If further evaluation is needed, patients are advised to follow up with a staff cardiologist or with their primary-care physician. Some are referred to the staff nutritionist or the exercise physiologist who runs an on-site clinic.
More than 1,200 women found their way to the clinic during its first year. "Many who have come to us have their own physicians but feel they have not been listened to or their concerns were dismissed," says nurse Vernell DeWitty, until recently the clinic's administrator. "Doctors tend to disregard women's complaints and symptoms, but women's symptoms can be different than men's. They are underdiagnosed and undertreated. We connect the dots for them."
DeWitty suggested I come in for a screening: "Wouldn't that be fun?" I wasn't so sure. I had no reason to suspect anything was wrong; a physical and lipid evaluation two years earlier had turned up nothing. Still, my exercise routine had slowed in the past year, and I had mindlessly eaten too many McDonald's French fries from my kids' Happy Meals. I also had put on a couple of pounds that I couldn't seem to shake, probably because an increased workload had made me more sedentary and stressed. I took DeWitty up on her offer.
I was 15 minutes late for my appointment, stuck in downtown traffic, and sure that my blood pressure was through the roof. But at the clinic, I was greeted with a sense of organization and calm.
"This may not be the best morning to measure my blood pressure," I said.
"The thing about stress," DeWitty said, "is not the stress. It's how you handle it. We all have stress." She smiled and got on with business, handing me a questionnaire about my diet, lifestyle, and emotional well-being: Do you smoke? How much do you exercise? What is your family heart history? How well do you cope with stress? (Obviously not well.) How often are you happy?
Next I was weighed and had waist and body measurements taken, blood pressure checked, and blood drawn. DeWitty had difficulty getting blood from the needle prick in my finger, and she had to do it twice. I could see air bubbles in the tiny tube that collected the blood.
DeWitty took my blood pressure on both arms--typical practice at the center--with the higher reading recorded. Rush hour surprisingly had done little to raise it. My right arm read 99/69, my left 104/58--the higher reading.
A computer evaluated my blood and ticked out a grocery-store-like receipt of scores: Triglyceride level was low at 45--less than 150 is desirable. Fasting glucose, which if high can indicate a glucose-tolerance problem and increased risk for diabetes, was low at 85--less than 100 is desirable. My body mass index was at the midpoint of the recommended range of 18 to 25--above 25 indicates obesity and a risk factor.
Then I saw my cholesterol results. 221 overall. Elevated. The American Heart Association likes readings below 200. The so-called "bad cholesterol" level--the tally of low-density lipoprotein particles, or LDLs, which truck cholesterol into the blood stream--was 177. Ideally it should have been under 100.
My score for "good cholesterol"--the high-density lipoprotein particles, or HDLs, that transport cholesterol out of the blood and to the liver to be disposed of--was 35. It should have been 55 or above.
My total cholesterol-to-HDL ratio, another assessment of heart-disease risk, was high at 6.3. It should have been below 4. Ouch.
My quick-screen lipid scores, together with my family history, put me in a high-risk category. DeWitty had a doctor look at the calculations; apparently there was a problem with computing my LDL score. I suspected (or hoped) that the numbers weren't right. Those air bubbles as the blood was drawn--they had looked suspicious. Plus, the finger-prick blood is a rapid-results test--I know from experience with my kids' strep cultures that fast doesn't always mean reliable.
But DeWitty said it was unlikely that the results were inaccurate. She said: "For a patient such as you, we'd encourage her to do a full blood panel and to visit a cardiologist."
I got to my car, phoned my husband in disbelief, and scribbled some notes--and a shopping list: "Ohmygod!" I wrote. "I am on a hunt for low-cholesterol, HDL-boosting food." I thought: What should a patient such as me do?
My father came from a Philadelphia family of eight children. Each of the five boys developed heart disease as an adult. My grandmother probably passed on the gene for it. An Italian immigrant, she was a tough matriarch with "a bad heart," as they used to say. She died at 70 of heart failure. I am her namesake.
Her oldest son died of a heart attack while on a trip to France. He was 57 and apparently had no previous symptoms.
My father, the second oldest son, was another story. In his early forties, he suffered angina pectoris--chest pains that result from clogged arteries constricting blood flow to the heart. He was not overweight, he did not smoke, he did not have high blood pressure or diabetes. He did have high cholesterol. At 42, he suffered his first heart attack. His second was five years later. A third two years after that. And his fourth and final heart attack three years later in 1972, at the age of 55. I was then three days shy of my 15th birthday.
Before bypass surgery, angioplasty, and other modern miracles of medicine, there was little to do for patients like my father but to caution that they not "exert" themselves. He took nitroglycerin tablets, blood-thinning medication, and a drug to regulate his sometimes-irregular heartbeat.
Unlike now, when bypass patients check out of the hospital in less than a week, the protocol for heart-attack victims in the late '60s and early '70s was eight weeks in the hospital and three months at home "resting" the heart. Another three months were spent as half-days at the office.
For my father, who ran his own engineering-manufacturing firm, recuperation was a strain. We turned the back of our living room into a home office. I can still picture him, every afternoon when I bounded in the door from school, sitting at his desk on the phone--slightly pale, his black-framed glasses on--doing business in front of the picture window at the end of the room.
He was a terrible patient. Not because he griped about his illness or bemoaned his fate, but it was hard to tell if he was feeling bad or when he was in trouble. I think he knew there was little to be done for him, so until the big ones hit he tried to deal with the worry privately. He tried to minimize the seriousness of his condition, maybe for his own mental health but also, I believe, for the benefit of his family.
Growing up waiting for your father's ticker to go off was no fun. And he knew that. Like Don Corleone in his final scene of The Godfather, stumbling around in the garden with his grandson, my father sometimes joked with me by lying on the couch and pretending that he was dying. (We share a fondness for dark humor in my family.)
My mother reminded me of an episode in the days leading up to his third heart attack. It was February, and he had gone out in the morning before work to clear the car of snow. He was soon back in the house, winded and probably in pain. He sat on the couch, not taking his coat off. My mother wanted to call the doctor.
"Don't you dare," he told her. "I'm fine. I'll be okay tomorrow." The next day he was in the hospital.
"Should I have called the doctor right away?" my mother says. "Would it have made any difference? There were no clot busters back then. No angioplasty. I think he thought--or hoped--it would go away."
After my father's second heart attack, my twin brothers, who were then 16 years old, were in an automobile accident. One of them was killed, and the grief and stress probably accelerated my father's fate. He died brokenhearted. In retrospect, it is a testament to his will and love of life that he saw his way through 13 years of the illness and lived to have a fourth heart attack.
"There are only so many insults the heart can take," the emergency-room nurse said just minutes after my father had passed away.
Today, of course, heart disease can be treated and prevented. The fear factor--heart disease as a certain death sentence--is a thing of the past, or should be. Even for people, like my father, whose disease is genetic, much can be done to manage it.
In the late 1970s, my father's three younger brothers benefited from bypass surgery and lived into their seventies; the youngest, now 80, is still alive. Statins--drugs like Lipitor and Zocor that lower cholesterol--have helped reduce the rate of death among those with heart disease.
When cardiologists first interview patients to gauge their heart health, explains Dr. Richard Rubin, chief of cardiology at DC's Sibley Memorial Hospital, they use a probability model. The model is based on the Framingham Heart Study--an epidemiological study started in 1948 that followed thousands of residents of Framingham, Massachusetts, and their descendants to isolate risk factors for cardiovascular disease. From that study, scientists established much of what we take for granted about the causes of heart disease: the role of age, cholesterol, blood pressure, diabetes, and smoking. From the study's ongoing stream of data, a checklist was created to help compute a patient's ten-year risk of heart attack. You can calculate your Framingham score at www.americanheart.org; click on "healthy lifestyle," then "health tools" and choose the Cardiovascular Disease Risk Assessment Tool.
If you go to a primary-care physician or cardiologist to check your heart health, your doctor's first step should be to establish where you fall on the continuum of heart disease based on the Framingham data. Cardiologists recommend that patients in their twenties get baseline blood pressure, cholesterol, and glucose readings and rule out hypertension and diabetes. Such early testing is important for those with an immediate-family relative with heart disease.
People need to take personal health inventories, says Sibley's Rubin. "Do you ever experience shortness of breath, palpitations, or chest pain?" he asks. "We all have bellwether activities--maybe it's going up the flight of stairs at the office or pushing your child in a stroller. If these activities don't feel comfortable for you, you should wonder what that might mean about your heart."
Doctors typically run tests similar to those that DeWitty uses at GW. They should do a blood draw (full-tube, not finger prick) for a cholesterol count and glucose and triglyceride reading; calculate a cholesterol-to-HDL ratio; and determine your body-mass index.
Your doctor also should ask about diet, smoking, and exercise habits as well as stress. Gender and age are other major risk factors. Women tend to develop cardiovascular disease after menopause when their levels of estrogen, which keeps cholesterol down, drop. Men are more likely to develop heart disease at a younger age--on average ten years younger than women--and to die of it at a younger age. (See "A Woman's Heartache" on page 150.)
The Framingham calculation has drawbacks. It does not factor in family history. According to Dr. Roger Blumenthal, head of the Ciccarone Center at Johns Hopkins, if one of your parents developed heart disease at an early age, you have twice the risk of heart trouble than someone without the family connection. If a sibling has heart disease, your risk is three times greater.
Because of the study's statistical and design limitations, the Framingham calculation doesn't always flag women who may be at risk for heart attack. Only 10 percent of nondiabetic women with heart disease register at even an intermediate risk until they are into their seventies. In addition, the data draw from a primarily white population. Cardiovascular disease can manifest differently in ethnic groups.
"It is a good starting point," Blumenthal says of the Framingham calculation, "but, undoubtedly, it is not enough."
Good doctors will use Framingham and consider other factors to come up with what Rubin and Bodourian call the "index of suspicion." Says Bodourian: "You have to pick out the individuals at risk and treat them accordingly. Partly that depends on a person's family history; partly it depends on factors like diabetes and cholesterol; and partly it depends on the patient's own level of concern."
Those with a "low suspicion index" should retest cholesterol, triglyceride, and glucose levels every five years, advises Rubin; those at the intermediate level should aim for every three years. If the suspicion index is rising, says Rubin, "you better start ordering some additional tests."
There was no doubt about my suspicion index: It was high, thanks to my family history and cholesterol scores. I decided to take nurse DeWitty's advice and follow up with a cardiologist.
I saw Dr. Blumenthal at the Hopkins Ciccarone Center for heart-disease prevention. He has a special interest in detection and management of cardiovascular disease in asymptomatic individuals and those with a family history of the disease.
When I contacted his office before my visit to GW to collect research for this article, he and nurse practitioner Dominique Ashen inundated me with studies on heart disease and prevention, most of which Blumenthal and his team had led or taken part in. I liked their enthusiasm and sense of mission. Blumenthal established the center in 1989 and named it after his close friend Henry Ciccarone, a legendary Hopkins lacrosse coach who died of his third heart attack at 50. Ciccarone had been slated to be the spokesperson for the family heart-disease-prevention program at Hopkins but never got the chance.
In the six weeks before I met with Blumenthal, I took a crash course in healthy living. I exercised at least 30 minutes five to six days each week. Gone from my diet were ice cream, butter, cheese, red meat (most meat, for that matter), fried foods, shrimp and shellfish, eggs, white breads, and anything with cholesterol registering more than 2 percent on the nutrition label. In were fat-free milk, whole-grain breads, oatmeal-and-soymilk breakfasts, soy products like tofu, olive oil, almonds, peanut butter, salmon (which--like nuts, soy, and exercise--boosts HDLs), fruits, vegetables, salads, and red wine with dinner.
The changes were not hard. Foods that I thought I wouldn't appreciate, like soymilk, I liked. I treated myself several times to a little ice cream or dessert to celebrate birthdays or when invited to friends' for dinner. I allowed myself a bite of chocolate in the evenings. I got used to the nightly glass of wine.
On the day of my appointment, I drove to Blumenthal's office, which is outside Baltimore in Timonium. Blumenthal, 44, is tall and lanky, with a quiet and warm manner. He took a health history and inventory of my diet, exercise, and lifestyle habits. I had told him about the bad numbers from my finger-prick test, my family history, and my fear that I was developing heartdisease.
The GWU test results worried him, but he said that they seemed odd, especially given my numbers from two years before. He said finger-prick tests aren't always accurate, and he would recheck them with a full blood draw.
When I described my dietary changes and exercise routine, he laughed: "Maybe it was a good thing that you got thosenumbers."
My family history troubled him most. Diabetes runs in my mother's family, her sister has had bypass surgery, and her brother, who had diabetes and high blood pressure, died of a heart attack and stroke in his early sixties. Blumenthal was curious about the progression of my father's disease and what that might mean for my propensity to develop dyslipidemia--or cholesterol problems.
He talked to me about a new generation of blood tests that measure "nontraditional risk factors." While some of these tests are controversial, they are fast becoming standard indicators and predictors for heart disease.
"Old cardiology," as some physicians refer to it, often relies on lipid measures, exercise stress tests, and electrocardiograms (or EKGs). But such tests are of limited use in prevention; they typically pick up signs of disease only after the heart is damaged or blood circulation is compromised. While they provide valuable data and are widely used, they can't by themselves identify the early signs of cardiovascular disease.
For years, the angiogram--an x-ray of the heart's blood vessels--has been one of the best evaluation tools in the doctor's bag. Surgeons thread a small tube through a blood vessel in the groin or arm and wind it through to the heart. Dye is injected into the arteries, revealing blockages on x-rays.
The new tests that Blumenthal talked to me about aren't invasive and detect heart problems earlier than EKGs or other "old cardiology" tests. They screen blood for proteins and components that are a byproduct of cardiovascular disease. One of these proteins, C-reactive protein, or CRP, is produced when the body tries to heal itself of injury or inflammation. High levels in blood can indicate that the arteries and veins are inflamed and that the patient suffers atherosclerosis.
Other blood components that doctors test for as markers for heart disease include: lipoprotein (Lp(a)), a genetic variation of LDL that contributes to the buildup of plaque in the arteries; apoliprotein B (ApoB), thought to be an important contributor to genetic causes of dyslipidemia; and homocysteine, an amino acid that when present in high levels can damage the inner lining of the arteries and promote blood clots.
Doctors can order even more sophisticated tests, depending on the blood screens or a patient's symptoms or risk factors. In nuclear-imaging stress tests (sometimes called thallium or technetium scans), a radioactive tracer is injected into the bloodstream and circulates to the heart. From such a scan, doctors can tell how well the heart circulates and pumps blood.
Other techniques are poised for widespread use. Cardiac CAT scans use x-rays and a computer to generate cross-sectional three-dimensional images of the heart. When an iodine-based dye is injected into the bloodstream, the interior of the arteries can be seen.
Cardiac MRIs use magnetic resonance imaging to take pictures of the beating heart. At Suburban Hospital, the technology is being tested with emergency-room patients to detect heart attacks in progress.
Given my family history and cholesterol scores, Blumenthal said he wanted to do a full blood draw for a new cholesterol screen as well as the new-generation tests for the C-reactive protein and other markers for heart disease. Blumenthal suggested that I also have a heart scan.
"What do you think of that?" he asked.
I had done a lot of research on the scan and had hoped he would recommend it. It's a kind of CAT scan that typically uses low-radiation electronic beams to picture and measure calcium deposits in the arteries. The scan--also called coronary calcium scoring--can pick up heart disease before arteries are obstructed--and before a person experiences symptoms of disease. It yields a good measure of how advanced the disease is, which can prompt a cardiologist to order lifestyle changes or medication.
Though their use is growing, heart scans are not yet covered by health insurers. Right now, patients must pay for them.
I was willing to pay. I felt that if I did have heart disease, it would be a "silent killer," as Suburban's Bodourian put it. I left Blumenthal's office and went downstairs to a Hopkins-affiliated clinic called HeartSavers, which also does lung, colon, and body scans. I paid $435, and found myself in the CAT-scan doughnut, alone in the darkened room. I thought about the distance that heart-disease treatment had come since the days when my father was ill. What, I wondered, would his life have been like--would my life have been like--if he, like I, had had access to sophisticated blood tests, heart scans, statins, angiograms, bypass surgery? How would my life have been different if he were still alive?
In the waiting room as Blumenthal read the test results, I wrote to myself: "Is family history, the genetic drive, inevitable? If not for this story assignment, I wouldn't be thinking about my heart right now, yet I am a prime candidate for heart disease." I thought it all ironic and a little funny.
Blumenthal came out and called me back to his office. On the computer screen in front of him was an amazingly graphic, if surreal, picture of my heart--and my rib cage and lungs. I couldn't tell what it revealed about my arteries until Blumenthal pointed to them.
"Good news," he said. "Your calcium score is zero."
Three days later I got the results of my blood screen. Total cholesterol: 168. LDLs: 80. HDLs: 77. HDL risk ratio: 2.2. Homocysteine, ApoB, CRP, and lipoprotein(a): all in the low or normal range. "These numbers are superb," Blumenthal said.
He speculated that the GWU numbers could have been wrong. Or my diet and exercise changes had dramatically improved my lipid levels. He couldn't be sure. Because of my family history, he recommended that I recheck my numbers in a year.
"That will also give you the motivation to see that your lifestyle changes and benefits are maintained," he said. He added that I was at low risk for heart disease for the next five years, probably the next ten years.
I breathed a sigh of relief.
Break out the soy.