NEW YORK (Women’s eNews) — Coral Robinson, 72, had a heart attack in 2002. As a registered nurse, she realized she had to act fast to get help; and she did. She also knew that her family history was against her.
In 1976, Robinson lost her mother to heart disease.
“My mother died of a heart attack in Barbados,” Robinson told Women’s eNews in a phone interview. “She had cardiac death in the post office. The undertaker got there before the ambulance did.”
Robinson retired recently from Montefiore Medical Center in the Bronx after a long career there as a nurse manager and a critical-care nurse.
She shares a bond — and a new vocation as a volunteer — with Roxanne Watson, 61, of Nanuet, N.Y., who had a heart attack in 2006. Watson received a heart transplant at Montefiore in 2010.
“We call ourselves heart sisters,” Robinson said, describing her relationship with Watson.
These two women — both African American — are talking to other women about their heart disease in connection with their volunteer work as the peer-support coordinators of a new support group at Montefiore. The group, which will start on March 5, will focus on African American women, Latinas and other underserved women living with heart disease. The group is sponsored by WomenHeart: The National Coalition for Women with Heart Disease, a nonprofit based in Washington, D.C.
WomenHeart is the first and still the only patient-centered national entity to focus on female survivors of heart disease. WomenHeart support groups can be found nationwide.
In Robinson’s case, “I had a heart attack in my house,” she said, recalling that painful moment in 2002. “I was in my bed. I was kind of dozing. Something felt different. I jumped up and got my husband to call 911. The EMS came pretty quickly.”
At Montefiore’s Moses Campus, Dr. Mark Menegus placed a stent in one of Robinson’s blocked coronary arteries the day after her heart attack. Within a week, she had to have another stent.
A stent is a tiny mesh tube that helps keep a coronary artery open to reduce the chance of another blockage and helps lower the risk of a heart attack. A stent can also be placed in an artery elsewhere in the body–in the carotid artery in the neck, for example–to prop the artery open and decrease the risk of a blockage that could cause a stroke.
Beware the ‘Silent’ Heart Attack
Watson’s heart attack was a silent one, she recalled. Her symptoms were not at all like the severe chest pain that most men — and some women — experience when a heart attack strikes.
At the time, Watson was managing an A.J. Wright Store, which sold inexpensive clothing and shoes, in New York. She loved to pitch in to help her young employees — in their teens and early ’20s — get the work done.
“I was at work, unloading a truck, helping the kids,” Watson said in a phone interview. “I felt a pain in my back, like I had pulled a muscle. That was in May 2006. I didn’t go to the hospital until several weeks later — in June.”
That’s when doctors determined she had suffered a heart attack, not a muscle strain.
The heart attack in 2006 left Watson so weak she could not work, ending her long career as a retail store manager. By April 2010, her heart was failing. Her cardiologist, Dr. Jooyoung (Julia) Shin, told her she would need a heart transplant and had Watson admitted as a patient at Montefiore, where she spent 104 days; “78 days waiting for a heart.”
In July 2010, Watson received the heart of a young man, U.S. Coast Guard Fireman Michael Bovill, who had died of injuries suffered in an off-duty motorcycle accident. She honors his memory — and his gift of life — by carrying his portrait with her whenever she speaks at events to sign up organ donors for LiveOnNY, which is the second-largest federally recognized organ procurement organization in the United States.
Training At the Mayo Clinic
Robinson and Watson met last October at the Mayo Clinic in Rochester, Minnesota, where they participated in a WomenHeart training program for about 60 volunteers — all women with heart disease – from around the country. The program, led by cardiologists, covered the latest medical information about heart disease, nutrition, exercise and weight management, as well as how to reduce stress and anxiety. After the training symposium, all 60 women went back to their communities to lead peer-support groups.
Learning how to manage anxiety, which will be part of the Montefiore support group’s curriculum, is crucial for women living with heart disease, Robinson said. “It takes about two years after a heart attack to get that comfort that not every little thing that happens in my chest is a heart attack,” she said.
Watson said she and the other participants in the training program were impressed by the fact that “most of the doctors at the Mayo training were women. There’s a big difference in men doctors and women doctors. Men don’t listen like women do.”
Dr. Sharonne Hayes, founder of the Women’s Heart Clinic at the Mayo Clinic, started the practice of asking participants in the training program to share their stories.
Robinson, an R.N. with a master’s degree, said she learned a lot from the heart stories of the other WomenHeart volunteers. “I was a critical-care bedside nurse before going into management,” she said. “Even though I’m an educated nurse, I’m surprised that women are misdiagnosed; everything from depression to gallbladder and other problems” when it’s actually heart disease. “Some (doctors) misdiagnose this as anxiety.”
During the Mayo Clinic classes, Watson said she, too, was surprised by what she heard from the other women. “Everybody ignored the signs — the shortness of breath, the hot sweats — many thought it was menopause,” she said. “More than half of us should have gone to the hospital. But we didn’t. That’s a mistake that can cost you your life.”
In women, the signs of a heart attack can include chronic fatigue, depression, dizziness and vomiting as well as pain in the back, the arms, the lower chest, the upper abdomen or the jaw, according to the American Heart Association.
“What we need,” Robinson said, “is to do research on women and not use the research findings from men. We have to train our doctors differently.”
To many, it might seem that medical services are more important than peer counseling and educational sessions when it comes to the organ that pumps blood throughout your body. But for women and heart disease, a stubborn blockage in public awareness is considered a huge and deadly risk factor.
Heart disease kills 1-in-3 women, more than all cancers combined, the American Heart Association says. About 8 million women are living with heart disease in the United States. A total of about 43.8 million are either at risk for heart disease or living with a cardiovascular illness, according to WomenHeart.
The major risk factors for heart disease and stroke include high blood pressure, diabetes, high cholesterol levels, obesity, smoking and a family history of heart disease. These risk factors show up in a series of very sobering health statistics for African American women as well as Latinas.
About 46 percent of African American adult women (age 20 and up) have high blood pressure, according to the American Heart Association’s 2016 Heart Disease and Stroke Statistics Update. In comparison, about 30 percent of non-Hispanic white women (age 20 and up) have high blood pressure, while 29.9 percent of adult Latinas have been diagnosed with hypertension, the association says.
About 49 percent of African American women age 20 and older have heart disease. In contrast, about 32 percent of non-Hispanic white women age 20 and older have heart disease, while about 32.5 percent of adult Latinas are living with heart disease, according to the American Heart Association.
Despite the higher risk, a study by the American Heart Association finds that women of color trail behind women overall by about 20 years when it comes to understanding the risks of heart disease. Only 36 percent of African American women and only 34 percent of Latinas surveyed in 2012 were aware that cardiovascular disease is their leading cause of death. That is close to the 33 percent awareness rate for white women in 1997. In contrast, the awareness rate was 56 percent for all women in 2012, nearly double the 30 percent rate for all women in 1997, the American Heart Association study showed.
Heart disease, which includes atrial fibrillation and other heart arrhythmias, congenital heart defects, heart attacks, sudden cardiac arrest and congestive heart failure, killed 161,698 women in 2013, according to the American Heart Association’s 2016 statistics update. Heart attacks alone kill 50,742 women a year.
Strokes, high blood pressure and other cardiovascular disease caused the deaths of 398,086 women in 2013.
Making the Connection
For any efforts to fight these statistics, Montefiore is a good target.
The hospital’s patient population is predominantly African American and Hispanic. Fifty percent of patients are obese, which is linked to high blood pressure, heart attacks and strokes. Thirty percent live at the poverty level, which restricts their access to medical care and a healthy diet.
Dr. Julie Ramos, Montefiore’s medical director of outreach cardiology, said in a phone interview that “many women are not aware of the symptoms of heart disease.”
Robinson said she didn’t make the connection between her doctors’ advice and her own health until after she had a heart attack. “When the doctors told me years ago, ‘Oh, Coral, you need to lose 25 pounds,’ and here I was, a nurse! But I thought, ‘Lose 25 pounds? I would look skinny!’ After I got sick, I lost it. I should have lost it before.”
So an important message of the Montefiore support group will be: “Change how you’re eating,” Robinson said. “It’s a lifestyle change. Don’t eat sweets. Don’t drink soda. We have to get them to understand. It’s an adjustment in the diet. Be more active.”
In 2015, WomenHeart’s National Hospital Alliance received a $260,000 grant from the Edwards Lifesciences Foundation of Irvine, California –up from $200,000 in 2014–to expand its peer-support groups to communities with large populations of underserved women, according to Amanda Fowler, executive director of global corporate giving for the foundation and Edwards Lifesciences Corp., which is one of the world’s leading manufacturers of heart valves, catheters and other medical devices.
Montefiore is one of eight U.S. hospitals in WomenHeart’s National Hospital Alliance that received funding from the Edwards Lifesciences grant to start peer-support groups for underserved women, including African Americans, Latinas, Native Americans and veterans.
WomenHeart, a nonprofit advocacy group, was founded in 1999 by three women who had heart attacks in their 40s. At the time, most doctors thought heart disease afflicted only men. So these women, who suffered from misdiagnosis, inadequate treatment, social isolation and a lack of practical information, decided to create a national patient support network run by and for female heart patients. Today, WomenHeart’s annual budget is about $4 million.
Kathy Webster, 62, the chair of WomenHeart’s board since last year, said the nonprofit now operates support groups in 39 states. The goal is to expand the support-group network to all 50 states in the next year or so.
Webster, who retired as an officer from the Federal Reserve Bank of Kansas City, said in an interview that she was diagnosed with a heart murmur at age 4. She had her first heart surgery at 17. Later in life, she was diagnosed with atrial fibrillation, a heart arrhythmia linked to a higher risk of stroke. She had her second heart surgery in 2005.
“There’s still much that needs to be done,” Webster said in a phone interview. “We still hear stories of women turned away in the E.R. They’re told they’re having a panic attack. We need more training of doctors, more outreach.”