Listen to Your Heart

Heart disease is the leading cause of death in women—a statistic many people don’t know. This knowledge gap is making the problem far worse. 

After her sixth consecutive year of raising concerns over her symptoms, Hope Nagy’s doctor handed her a referral to a psychiatrist and told her she may need to seek treatment for her “poor self body image.” 

Since 2010, the personal trainer and spin class instructor had been complaining to her doctor about shortness of breath during her annual physicals. At first, her doctor said her symptoms could be attributed to stress after a recent divorce. But year after year, Nagy arrived with the same complaints. She felt fatigued after routine chores. She was still teaching her exercise classes, but everyday life left her exhausted. Her hair was falling out, and she wasn’t sleeping well. Even so, her doctors maintained that, as a spin class instructor, she was too healthy for a heart problem. 

“[I’m] saying ‘Do you think there’s something wrong with me? Can you test my thyroid?’” Nagy says. “I would get this response: ‘You look good; you look fine.’” 

By the time she was told to see a psychiatrist, Nagy was livid. Her father had a heart attack at 43, and she had gotten into fitness to avoid the same fate. She was the age at which his issues began and was being told to ignore symptoms. 

Finally, a personal training client recommended Nagy try her doctor, Dr. Hannah Chung at Main Line Health, for a second opinion. During a first visit, Chung asked to listen to Nagy’s heart. 

Chung was concerned. Nagy had a clear heart murmur, indicative of a congenital heart defect. But after six years of being told she was healthy, Nagy was in disbelief. She explained that in past appointments, any sign of a heart murmur had been written off as mild dehydration from her spin classes. But Chung was sure: This was not a normal murmur. An EKG and echocardiogram later revealed the worst—Nagy had an enlarged aorta and needed open heart surgery. 

“I was just a mess because I’m a single mom, and I’m about to pick health insurance for the following year,” Nagy says. “And I said that to the cardiologist. I said, ‘I don’t have disability. I pay for my own health insurance. I don’t have workman’s compensation. I’m not prepared for this. I literally have the paperwork filled out for the cheapest health insurance you possibly can imagine.’ And she says, ‘Well, you’re gonna go home and change that.’” 

A Bad Beat

Prior to her diagnosis, Nagy, like many young women, was unaware she may be at risk of heart disease. Heart disease has been the number-one killer of women for decades, but awareness of this fact has been steadily declining. In 2009, 65 percent of women surveyed knew the statistic, but in 2019, that number decreased to just 44 percent, according to a report by the American Heart Association. Accordingly, women are also less proactive about their heart health than before. And the consequences are grave. Once considered too young to be at risk for heart disease, women between the ages of 35 and 55 are now one of the only groups whose mortality rate from heart disease has increased in recent years. 

Dr. Maribel Hernández, a cardiologist and the medical director of Main Line Health Lankenau Heart Institute, attributes that increase to a few key factors. For one, a decrease in awareness of heart disease can result in high risk behaviors, such as smoking or unhealthy eating. Supporting this theory, there have been parallel increases in diabetes and hypertension in younger women. 

Additionally, not only are women getting pregnant at older ages which can create complications, women who develop complications during pregnancy, such as preeclampsia or hypertension, are at higher risk for heart disease at younger ages. This is especially an issue for women of color, who have much higher pregnancy mortality rates in the U.S. Hernández is also concerned that lower awareness has led to women attributing their symptoms to mere anxiety. 

It’s not just patients’ behavior, however. Women who do seek help may not get the treatment they need. According to Hernández, many physicians do not check women for heart issues when they report symptoms like palpitations. One study in the Journal of the American Heart Association showed that women and people of color with chest pains were made to wait longer before being seen by physicians and that women were less likely to be admitted when presenting with chest pains. Another study in the Journal of Women’s Health indicated that women were twice as likely to be diagnosed with a mental illness when complaining of heart disease symptoms than men with identical symptoms. 

“Our medical community, unfortunately, is biased, and they still see a woman coming into the emergency room with palpitations or chest pain symptoms, and they do not necessarily immediately check the heart,” Hernández says. “We have an issue of how we train our physicians, our medical community and health care providers to know that these younger women may be having a heart problem. Heart disease is not a problem with just older postmenopausal women or men.”

According to Hernández, when women get the treatment they need, they tend to do very well in recovery; they just need to get care in a timely manner. Nagy, for example, was told by her heart surgeon that, had she waited any longer, she could have dropped dead from an aortic aneurysm. But because she received treatment, she has completely recovered and continues with her exercise regimen to this day. Her self-advocacy saved her life. 

Finding Your Voice

This is a lesson that social worker Geremi James has had to learn from her own daughter much later in life. Four-year-old Keiko Riot James lives up to her middle name. Her mother describes her as assertive and sassy—always the first to speak up, whether she is helping a younger kid in preschool or teasing her mom for her singing.

For James, Keiko’s first weeks were a mix of joy and terror. When she was about 20 weeks pregnant, James found out that Keiko had a significant hole in her heart that would require treatment after birth, and she brought newborn Keiko to her pediatrician’s appointments with this knowledge. But she was surprised to find out the physicians were less than prepared. They had never seen Keiko’s heart condition before. The appointments lasted up to three hours, and she felt her daughter was being treated as a teaching subject for medical residents, who would come in only to listen to her heart.

“[They should have said], ‘Oh, I’m not specialized in this. Let me refer you somewhere else,’” James says. “But they were just like, ‘This is an interesting case.’ It really felt like Keiko was an experiment.” 

James was also concerned over the fact that Keiko would not latch and was not gaining the weight needed for a life-saving heart surgery. Her doctor just referred her to a lactation specialist and class, but James felt there must have been something wrong with her, blaming herself for her inability to feed her daughter. The fact that the methods recommended by the lactation specialists were completely ineffective only compounded her guilt. 

By the time Keiko was a month old, she was severely underweight. James brought her to the hospital. There, she learned Keiko’s inability to eat was common for her condition—and she should have been told this long ago. After explaining how to use a feeding tube, hospital staff said she should find a pediatrician specializing in heart conditions. 

“When we switched doctors, our doctor’s visits immediately got shorter—from three hours to 30 minutes,” James says. “The doctor told me exactly what the next two months would look like…so that I knew we were on track for the surgery.” 

Keiko’s surgery was successful: She’s gotten better every day. James thinks about what would have happened if she had not asked for a second opinion, but she’s thankful for the doctors who pushed her to advocate for herself and Keiko. 

Treating the Root Cause

When it comes to a systemic issue, however, self advocacy is a Band-aid. The goal of physicians like Hernández is to ensure all women have the same outcome without having to fight for treatment. That comes from within the medical community, she says. Heart disease in women needs more research. For decades, treatments for heart conditions and heart attacks have been based on clinical trials conducted with men, says Dr. Monika Sanghavi, associate professor of clinical medicine at University of Pennsylvania and director of the women’s cardiovascular health program at Pennsylvania Hospital. 

“When we didn’t have data specific to women, we weren’t looking at heart disease in women as a different process,” she says. “We saw what men had, and then we tried to do the same cookie-cutter approach to heart disease in women—the same treatment, the same presentation, assuming that they have all the same diagnoses.” 

This attitude has begun to shift, but there’s a ways to go, she says. For example, a type of heart attack called a spontaneous coronary artery dissection (SCAD) accounts for 25 to 33 percent of heart attacks in women under 50. But 90 percent of all SCADs occur in women, so it’s underdiagnosed, Sanghavi says. She recalls a patient who was in her 30s and was clearly having a heart attack, but was sent home twice from the ER because she didn’t fit the picture of someone having a heart attack. New research also shows heart attacks and SCADs in women are often triggered by an emotional stressor, while men tend to present symptoms after physical stress. 

To treat heart disease in women, it’s important that more women get involved in research and clinical trials. Cardiovascular health in women needs to be its own part of the curriculum in medical school, Sanghavi says. “It has to be ingrained,” she says. “Unless we put resources into better understanding how to [treat] women specifically, we’re not going to make progress.” 

Based on her experiences with medical residents, Sanghavi remains hopeful about the next generation of physicians. A few years ago, when she brought up terms like SCAD, she was met with blank stares. Now, residents come in knowing their importance. 

For now, the burden is often on the patient. Nagy is proactive about her two daughters’ health. Her heart condition was genetic, so she got them tested. There are no signs that she passed anything on, but she teaches them never to take their voices for granted.