The Tarbabys Blog

The Washington Post

For decades, she endured brief blackouts. Then a scary one hit her.

Sandra G. Boodman, The Washington Post – January 31, 2023

Lying on her back in Seattle’s Lake Union Park, Maureen E. Ryan drifted in and out of consciousness, oddly comforted by a trio of rabbits nibbling on wet grass as they watched her from 20 feet away. The area where Ryan collapsed during a solo Sunday night run was devoid of people and the bunnies made her feel less alone.

For 30 years Ryan had experienced periodic fainting episodes while exercising, but she had always recovered quickly. “This time I felt like I was going to die,” she recalled, terrified by how vulnerable she must look and by her inability to move or even speak. “I thought, ‘Someone’s going to find my body. How sad for my family.'”

Twenty minutes later after several failed attempts, Ryan managed to stand. She telephoned a friend, declined his offer to pick her up because of the distance involved, then stayed on the phone with him as she walked slowly through a chilly drizzle to her houseboat a mile away.

For the 49-year-old conservation biologist, that January 2022 incident was the catalyst for a contentious months-long process that would upend a diagnosis made more than 20 years earlier, uncovering the potentially deadly reason for blackouts Ryan had long believed were no big deal. Correcting the problem required major surgery from which she continues to recover.

Her memory of that night and the “what ifs” it triggered remain unusually vivid. “It just felt like I was really close to the edge of something,” she said.

A one-off event?

Ryan has always been an avid athlete. During high school in Pittsburgh she ran, rowed crew, and played lacrosse and field hockey. Her first fainting episode occurred in 1991 during her freshman year at Georgetown University in D.C. A few minutes after finishing a treadmill run in the gym that left her feeling oddly nauseated, Ryan passed out and suffered a brief seizure while drinking from a water fountain.

“The last thing I remember was my vision tunnel down around the water coming out of the spout,” she said. She awoke seconds later, surrounded by basketball players who had seen her crumple to the floor. Unhurt but embarrassed, Ryan walked back to her dorm to take a nap. “I saw this as a weird, one-off thing,” she said and didn’t mention it to anyone.

Five years would elapse before she fainted again. But the nausea and dizziness recurred sporadically, usually when the 5-foot-1 Ryan was trying to keep up with her much taller friends during six-mile runs, on long hikes or climbing mountains. The sensations typically began 10 minutes in and passed if she rested.

“I didn’t realize it was unusual,” said Ryan, who thought she was pushing herself too hard or moving too fast.

After college she headed to Wyoming and then to Utah to work as a wilderness and rock-climbing instructor, a job that often involved lugging a 60-pound pack. In October 2000, while running on Cape Cod where she was living temporarily, Ryan had three episodes in a single week; she passed out once and nearly fainted twice. She emailed her aunt, a pathologist with expertise in heart problems, and was alarmed by the response.

“She told me it could be a dangerous arrhythmia,” Ryan recalled. Her aunt advised her to go to an emergency room if it happened again and to stop running until she saw a cardiologist.

Several days later she saw a heart specialist on the Cape who initially dismissed her symptoms as psychological – before an EKG, a noninvasive test that assesses the heart, showed she had Wolff-Parkinson-White syndrome (WPW), a disorder that causes an overly fast heartbeat.

Weeks later Ryan underwent a catheter ablation, a minimally invasive treatment for an elevated heart rate. Before the ablation, which was performed in Pittsburgh where her parents live, Ryan was given a tilt table test. She was strapped to an exam table that measures changes in blood pressure and heart rate as it is repositioned. The test is used to help determine the cause of unexplained fainting, also known as syncope.

Twenty-five minutes in, Ryan experienced the telltale nausea and dizziness, then passed out.

Her fainting, she was told, was caused by vasovagal syncope. This common condition can be triggered by intense emotion (in some people it is triggered by the sight of a needle or blood), prolonged exercise or dehydration. It usually does not signal an underlying problem. Because the ablation had been a success – subsequent EKGs did not show the WPW arrhythmia – Ryan said she was told that her dizziness and episodic fainting were essentially harmless.

She was advised to see a cardiologist periodically, but “otherwise it was ‘You’re fixed,'” Ryan recalled.

She did not know – nor did a doctor tell her – that physical exertion should not have been the sole trigger of her episodes. That red flag was missed for the next two decades.

Infrequent dizziness, nausea, fainting

After she moved to the West Coast to attend graduate school and then launch her career, Ryan incorporated the episodes, which remained relatively infrequent, into her passion for skiing, mountain biking, masters swimming and running.

“It was just part of my exercise physiology,” said Ryan, who told her friends “I have this weird thing that if I start too fast I tend to faint.” When she experienced the dizziness or nausea that signaled an episode she would quickly sit or lie down, which often prevented fainting or injury.

Over the years Ryan informed her doctors, who included five cardiologists in various cities, about the cardiac ablation and vasovagal syncope. None suggested anything might be amiss, she said.

By early 2020, Ryan was living in Seattle when she noticed new symptoms. Sometimes she awoke in the morning feeling inexplicably awful. Her chest sometimes felt tight when she ran and she was more easily winded. She had planned to see a cardiologist, but the pandemic, combined with a serious knee injury that prevented her from running for months, derailed that plan. During her hiatus from running Ryan noticed that her queasiness, dizzy spells and fainting disappeared.

By mid-2021, her knee had healed and Ryan resumed running. Her symptoms soon returned, capped by her frightening collapse in the park.

‘It’s not your heart’

Shortly after she got home that night Ryan contacted her health plan’s after-hours line. The doctor she spoke to scheduled an EKG and blood tests for the following day.

Although her EKG was read as normal, Ryan, who had been furiously researching her symptoms, thought one of the heartbeat measurements – the QT interval – seemed prolonged. She sent her records to her aunt, who agreed and expressed concern about possible Long QT syndrome, a heart rhythm disorder that can cause sudden death.

She also told her niece that vasovagal syncope is usually triggered by a strong emotional reaction and is considered worrisome when linked to physical exertion.

Ryan’s internist was also concerned and arranged an expedited appointment with an electrophysiologist, a cardiologist who specializes in heart rhythm disorders.

In the interim Ryan contacted Samir Saba, chief of cardiology at the University of Pittsburgh Medical Center and co-director of its Heart and Vascular Institute, who is a neighbor of her parents. During a video appointment in late January 2022, the electrophysiologist quizzed Ryan in detail about her history and symptoms. He advised that she wear a heart monitor, stop all vigorous exercise and undergo genetic testing for Long QT syndrome.

Saba also recommended a stress MRI heart scan that can mimic exercise, replicating the conditions that led to her fainting. The scan can reveal blockages and structural abnormalities that might otherwise elude detection.

“Blackouts are very challenging,” Saba observed. The cause “can be very benign or very sinister.”

One possible cause of her symptoms, Saba said, was an anomalous coronary artery, which affects about 1 percent of the population. Such malformations occur early in fetal development and result in a coronary artery being in the wrong place. These defects are typically not dangerous, but in some people they can reduce the flow of blood to the heart, causing fainting, a heart attack or sudden death, particularly during exercise.

Saba said Ryan’s description of her blackouts made him suspect that something more than a vasovagal response was occurring. “At the peak of exercise the vagal response does not kick in,” he noted.

An electrophysiologist she saw a few days later in Seattle had a different view. He did not think she needed a stress MRI for reasons that were unclear. He recommended a stress echocardiogram instead, which was performed in early February. During the test Ryan experienced chest tightness and then passed out while running on a treadmill; her blood pressure and heart rate both plummeted. Nurses called a resuscitation team and moved in to start CPR, but Ryan recovered quickly without intervention.

The cardiologist diagnosed her with post-exercise vasovagal syncope, prescribed 10 grams of salt per day to prevent a drop in blood pressure that can cause fainting and told Ryan she could resume running.

“It’s not your heart,” she said he told her when she pressed him for the MRI and an explanation of her symptoms. During slow runs Ryan’s chest continued to feel tight, while the salt left her bloated, short of breath and anxious.

Ryan decided she needed the MRI and flew to Pittsburgh in early March. She hoped she could ultimately convince her insurer to pay for out-of-network care.

That proved to be a smart decision. The MRI and a subsequent CT angiogram confirmed Saba’s suspicion. Imaging showed that Ryan had been born with an anomalous right coronary artery that originated from the wrong location. There was evidence of “severe compression” between the aorta and pulmonary artery, which limited blood flow at the peak of exertion, as did a misshapen orifice to the artery.

These anatomical factors – not vasovagal syncope – led to blackouts, which could trigger a dangerously irregular heartbeat that could prove fatal. Ryan did not have Long QT syndrome; it was unclear if she had WPW. Her collapse in the park, she was later told, was most likely aborted sudden cardiac death.

The recommended treatment was an “unroofing” operation – open heart surgery that involves repositioning the opening of the artery to improve blood flow and prevent compression. The operation is followed by months of cardiac rehab; recovery can take a year or more.

“I was super bummed out,” Ryan recalled. “I thought, ‘Whoa, how am I even still here?’ I was headed into something very different than I had thought.”

Life after surgery

In August, after months of battles with her health insurer, which ultimately agreed to pay for the MRI scan and out-of-network care, Ryan underwent unroofing surgery at the University of Washington Medical Center in Seattle. The three-hour operation was performed by two cardiothoracic surgeons with expertise in treating congenital heart disease. (Ryan no longer sees the cardiologist who told her the problem “wasn’t her heart.”)

Although her condition has improved – she is able to exercise under controlled conditions, the fainting has not recurred, and the risk of sudden cardiac death appears to have been eliminated – Ryan’s recovery has been marked by episodes of chest tightness and she remains fatigued. She said she has been told that it can take up to three years to establish a “new normal.”

Saba said that it isn’t clear why Ryan’s heart problem wasn’t detected earlier but suspects it may reflect a failure to consider an underlying heart defect. “This is something cardiologists know about,” he said. “The critical thing is the level of suspicion.”

Ryan said she is deeply grateful to Saba for his diagnostic acumen and to her Seattle doctors for their surgical skills and advocacy on her behalf.

Only after her diagnosis did she learn that some of her friends had been skeptical of her assurances that her fainting was normal.

“I wish I’d taken my experience more seriously,” Ryan said. “It just seems insane now.”

Sandra G. Boodman, who was a Washington Post staff writer for more than 30 years, created the Medical Mysteries column.