Rachel Freedman was 26 but had the stamina of someone far older.
She took breaks while walking up a flight of stairs. After a shower, she had to sit and rest. Laundry, groceries, navigating the subway—it all felt impossibly hard.
“My friends liked to go on hikes, and I dreaded it because I couldn’t keep up,” says Freedman. “I had terrible pain in my chest, like a gorilla was sitting on it, and sometimes the pain was so severe that I thought, ‘Am I having some kind of heart issue?’ But I told myself, ‘Rachel, you’re in your 20s. Relax.’”
The real culprit, she was sure, was her weight. If only she exercised more and lost the pounds, she would have more energy. The gorilla would go away. Freedman blamed herself and her lack of willpower.
Freedman was wrong. A visit to an emergency department in May 2019 for something completely unrelated would finally prove it and lead to an entirely unexpected explanation. When doctors detected an abnormal electrocardiogram, she was advised to follow up with her primary care doctor. “The doctor said it was probably not a big deal, but my mother insisted. She said, ‘Listen, it’s your heart. You need to get it checked out.’”
Freedman, heeding her mother’s concern, agreed. The primary care doctor referred Freedman to cardiologist Lawrence Phillips, MD, medical director of outpatient clinical cardiology at NYU Langone Health. He detected a heart murmur, indicating abnormal blood flow. That led to an ultrasound—an echocardiogram—confirming that her heart was indeed pumping abnormally.
Next came a life-altering diagnosis: obstructive hypertrophic cardiomyopathy (HCM), an uncommon heart condition in which the walls of the heart slowly thicken and block blood flow through the heart. “When Dr. Phillips called to tell me that I had hypertrophic cardiomyopathy, my response was, ‘What?’ I had to Google it. I had no idea what it was. How could I have this and not know?” Freedman recalls.
“Rachel wanted to avoid surgery at all costs, but if you faint and have a diagnosis of hypertrophic cardiomyopathy, that’s a very high-risk situation.”—Daniele Massera, MD, Associate Director of NYU Langone’s Hypertrophic Cardiomyopathy Program
An estimated 1 in 500 people have HCM. The condition often goes undetected, especially in youth, making it the leading cause of disease-related sudden death among young people. Some people experience no symptoms, while others, like Freedman, feel the telltale chest pain, shortness of breath, and fatigue during exertion.
Freedman’s condition was surprisingly advanced. “An MRI showed that Rachel’s heart muscle measured more than 30 millimeters thick,” says cardiologist Daniele Massera, MD, associate director of NYU Langone’s Hypertrophic Cardiomyopathy Program, the largest and most experienced HCM center on the East Coast.
To put that in context, average healthy heart muscle is about 10 millimeters thick, a little less than half an inch. “So her heart was really, really thickened,” explains Dr. Massera.
This thickening most often happens in the septum, the wall dividing the two bottom chambers of the heart. A bulky septum can crowd the heart’s main pumping chamber, making it work harder. It can also trigger erratic heartbeats that increase the risk of sudden cardiac arrest.
Freedman began a medication regimen to relax the heart, often the first line of treatment for HCM. Three months later, Larry A. Chinitz, MD, director of NYU Langone’s Heart Rhythm Center, implanted a defibrillator, a small battery-powered device that sits in the chest below the armpit and jolts the heart back to its normal rhythms if it detects disordered heartbeats.
On Dr. Massera’s advice, Freedman lost weight, dropping 60 pounds in a year. Obesity can force the heart to work harder and even cause changes in the size and shape of the organ. But to Freedman’s surprise, her symptoms did not improve. In fact, they worsened. When new medication regimens failed, too, Dr. Massera advised a surgical intervention called a septal myectomy, an open heart procedure to thin the septal wall so blood can flow unimpeded from the heart.
“She was really limited,” says Dr. Massera. “She could only walk six minutes on the treadmill. At 26, you’d expect much more. She was having fainting spells despite medical therapy. Rachel wanted to avoid surgery at all costs, but if you faint and have a diagnosis of HCM, that’s a very high-risk situation.”
In August 2020, 15 months after her initial diagnosis, Daniel G. Swistel, MD, surgical director of the Hypertrophic Cardiomyopathy Program, performed Freedman’s much-needed surgery. Dr. Swistel quickly gained her trust. “When I met Dr. Swistel, he said, ‘Listen, this is easy. I do it all the time,’” says Freedman.
Dr. Swistel, in fact, has performed more than 700 septal myectomies, among the most of any surgeon in the world, with about 95 percent of his patients showing improvement. “A lot of people think that if you get surgery too young, the obstruction will continue to grow, and you’ll need surgery again. That’s simply not true,” says Dr. Swistel. “Once you have septal myectomy performed in a high-volume center like NYU Langone, in the vast majority of people the obstruction is gone. Septal myectomy is absolutely a new lease on life.”
After the surgery, Freedman completed four months of cardiac rehabilitation at NYU Langone’s Joan and Joel Smilow Cardiac Prevention and Rehabilitation Center, part of Rusk Rehabilitation. By March 2021, after one of her last rehabilitation sessions, Freedman found herself outside on an early spring day, mulling over options to get home. “I said to myself, ‘You know what? Don’t take the subway. See if you can walk home,’” Freedman recalls. “If I could handle the walk, maybe I could do other things.”
On the Brooklyn Bridge, Freedman paused, not because she was out of breath or exhausted, but to appreciate the view—and her health. She had no chest pain, no gorilla on her chest. The moment marked a turning point. Today, she’s still symptom-free, newly married, and pursuing a master’s degree to become a high school guidance counselor.
“To my doctors I’d say, ‘Not only did you save my life, you changed my life,’” Freedman notes.
Dr. Massera calls Freedman a quintessential success story. “It’s amazing how everything improved over time,” he says. “Rachel’s physical health, her weight, her HCM with treatment—everything really came together. It’s an amazing story.”