The day was sweltering. The 61-year-old woman urged her donkey into a trot. She loved riding around the ring on the beautiful white beast — at a walk, then a trot, then a canter. Suddenly she noticed a tingling in her hands and feet spreading toward her torso. She recognized the sensation but willed herself to ignore it. It didn’t work. Her strength seemed to melt away, and before she could say or do anything, she felt herself slumping forward. As the world turned gray, the donkey stopped. Her arms, and then her body, slid down the animal’s sweaty neck and onto the ground. Then everything went black.
She woke up looking at her donkey’s snow-white belly. He leaned down and nickered softly, then brayed at the approaching instructor. Are you OK? The instructor called out in alarm. Should I call an ambulance? She was fine, the woman assured the instructor. It was just that hot weather could really get to her. She allowed herself to be helped over to the cool darkness of the barn. As she lay on the damp concrete floor, warm tears made their way down her face. I can’t keep going like this, she thought.
She first fainted maybe four years earlier. She was at the gym, finishing up a brisk walk on the treadmill, when she felt the odd tingling. Black dots swam in front of her eyes, and she heard the thump of her head hitting the wall of windows in front of her. Then the black took over. She awakened surrounded by worried faces. It was strange — she was an active person. Her job as a field geologist kept her hiking and climbing regularly.
She went to her primary care provider, a nurse practitioner. She had high blood pressure, the N.P. said, but was otherwise healthy. The woman was sent to a local cardiologist. Yes, she told that doctor, she did get out of breath more easily than she used to. And yes, sometimes she did get more tired than she expected. But no, she never had chest pain or pressure. Mostly she felt fine. And she didn’t faint often: a few times a year, mostly in the summer when she was exerting herself in the heat. She had an exercise stress test and, when that was normal, a scan in which a radioactive dye outlined how effectively her heart was beating. It was also normal. So was an echocardiogram.
So the woman’s N.P. focused on her blood pressure and improvements to her diet. But even when her blood pressure seemed to be perfect, every now and then she would find herself on the ground looking up at concerned faces.
A Hard Look at Her Heart
It was after the fall from the donkey that the woman decided she needed a new set of eyes on her problem. She made an appointment with Dr. David Ramos, a cardiologist at a Columbia New York-Presbyterian office in Monroe, N.Y., near her home in the village of Piermont. It took months to get in. But when she finally met Ramos, he listened thoughtfully as she described her worsening sense of being out of breath, her increasing fatigue during even mild exertion, the repeated blacking out. An exam was unremarkable. Ramos reviewed her records. Fainting, known medically as syncope, is a common enough problem caused by diminished blood flow to the brain. Forty percent of us will faint at least once in our lives. And for most of us, it will be only once, triggered by a sudden change in either blood pressure or heart rate, often in reaction to a medication or some type of emotional or physical stress.
Repeated episodes of syncope suggest a heart problem. The woman’s N.P. and cardiologist had looked hard at her heart and found nothing. There was no evidence of coronary-artery disease or heart failure. There was no sign of an abnormal rhythm that could interrupt blood flow. There was nothing wrong with the structure of her heart — at least there hadn’t been a couple of years earlier when she had her last echocardiogram. Ramos sent her for another.
This one showed that the walls of her left ventricle, the part of the heart that pumps the blood into circulation, were thicker than normal. This can happen in people with high blood pressure: The heart gets more muscular from the work of pumping blood into a system where pressures are higher. The thicker walls are stiffer, which in turn makes it hard for the heart to relax and enlarge to fully fill with blood. Could it be that the woman’s heart wasn’t able to pump enough blood to meet the demands of her body and brain when she exerted herself? Ramos prescribed medications that would help slow her heart, to give it more time to fill, and reduce her blood pressure.
Still, she continued to faint, now more frequently. During the summer, she might pass out once or twice a month. She fainted on the steps of the tower of Pisa. Hustling up the big stone stairs at Grand Central Terminal in New York, she felt the tingling that warned her that another episode was coming. She made it to the top of the stairs and lay flat on the stone floor. That felt ridiculous, but she didn’t faint. Ramos increased the doses of her medication, then added others. She continued to faint or nearly faint regularly.
Small Changes and a Clear Answer
After two years of tweaking the woman’s medications with no improvement, Ramos repeated the echocardiogram. The thickening had worsened, but only in the wall that separated the left and right ventricles. It was a small change, but enough for Ramos to recognize the problem. The woman had a disorder called hypertrophic obstructive cardiomyopathy (HOCM).
Ramos sat across from the patient with a model of the heart and a pad of paper to help him show how this small change in the structure of her heart could cause her episodes of syncope. The wall between the ventricles, known as the septum, plays a uniquely important role in blood flow through the heart. When more blood is delivered to the left side of the heart because of increased demand — say, while exercising in the heat — that wall needs to bulge outward, accommodating the larger volume. If it is thickened and stiff, it can’t do that. The thickening had also altered how the ventricle’s valves opened, so that the outward flow was now partially blocked with each beat.
The patient pointed out that she had been fainting for years; why wasn’t her echocardiogram abnormal before? Ramos explained that HOCM affects the way the heart pumps long before changes are visible. And the septal thickening becomes more exaggerated as time goes on.
HOCM is a family of genetic, mostly inherited disorders that affect up to one in every 500 people. While its most drastic presentation occurs in young athletes who die unexpectedly, in most people the disease process starts later and progresses more slowly. Eventually most of those who have this condition need surgery to thin the overgrown areas of the septum and repair the valves, Ramos told her. She wasn’t at that point but would probably get there.
This diagnosis changed the medications she should take. Some of those recommended for high blood pressure could make HOCM symptoms worse. And Ramos would need to monitor her heart with echocardiograms every year.
As Ramos described the disease, he referred to it by an acronym. He pronounced it HOE-come. On hearing this, the patient smiled. Ramos looked at her questioningly. “Where I come from,” she said with a laugh, “hokum means nonsense, baloney.”
The woman did well on the new medications, but just as Ramos predicted, the obstruction in her heart worsened. She finally had surgery in 2021. She hasn’t fainted since. She exercises regularly, though not as hard as she used to. She no longer gets winded on the stairs or when it’s hot. Since her diagnosis, she has investigated her family history. She had two uncles with heart problems; one died young, and the other lived into his 70s but was housebound for most of his life. More recently, a grand-nephew and a cousin were diagnosed with HOCM, and the patient continues to encourage others to get tested for the disease.
It turns out, she told me, that despite its name, HOCM isn’t nonsense after all.
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