Atrial fibrillation (AFib), or arrhythmia, is a common heart rhythm problem. It makes your heart beat too fast, too slow, or unevenly. Without treatment, it can raise your chances for problems like heart failure and stroke. Here’s what some people with AFib want you to know about life with an irregular heartbeat.
You can get atrial fibrillation when you’re young.
Most people with AFib are over 65, but it’s possible to get it earlier in life.
Kelly Sharp, a 38-year-old pursuing her master’s degree in social work in Indiana, began getting symptoms in her mid-20s. She was a runner, but she always felt her arrhythmia while at rest. Her heart would race to over 200 beats per minute, “like a fish flapping around in your chest.”
Michael Terns, a 45-year-old police officer in Tennessee, started feeling symptoms in his 30s. They lasted about 4 to 5 seconds, usually while doing strength training or running long distances. “It feels like a bird trapped in your hands — in your chest. It’s just fluttering really fast,” says the former Marine.
You may need to speak up for yourself to get diagnosed.
Sharp had to repeatedly mention her symptoms to her doctor before getting a referral to a cardiologist, or heart doctor. The cardiologist then told her she was too young to have a heart condition and joked that she just needed to “lay off the cocaine and diet pills.” Sharp didn’t see him again. She eventually got diagnosed with AFib after an episode landed her in the hospital.
Not everyone with AFib feels it.
Wilson Lee, a 37-year-old who directs the Malaysian office of a U.S. construction company, wasn’t feeling any AFib symptoms when he got diagnosed. “At the time, I was still very active in triathlons, living a very normal life.” His doctor spotted the condition during a routine yearly checkup in 2018.
You won’t always see the toll it takes on people.
Mellanie True Hills, 69, founder and CEO of the American Foundation for Women’s Health and StopAfib.org, used to feel symptoms like a racing, pounding heart and lightheadedness.
“The impact that AFib has on us is something that nobody can really understand unless they’ve experienced it,” Hills says. “And it just drives many members of our community bonkers that people will say, ‘You don’t look sick. You should be fine. You’re just overreacting. There’s nothing really wrong with you. You’re just being a hypochondriac.’”
Atrial fibrillation can take a financial toll, too. “We tend to be the frequent fliers of the emergency room at the hospital, with huge medical bills and copays,” Hills says. “People can lose their jobs, their cars and houses, and some of them even their families over the impact of their AFib.”
Treatment isn’t the same for everyone.
It may take you and your doctor some time to find the right treatment for you.
Sharp, the social work graduate student in Indiana, says her AFib symptoms are less frequent and intense now that she’s on high blood pressure medication. She tried taking medication to control her heart’s rhythm, called an antiarrhythmic, but it didn’t help.
Hills, the founder of StopAfib.org, had Maze heart surgery in 2005. During this operation, a surgeon makes small cuts in the atria, then stitches the cuts up. The scar tissue stops the electrical misfires that lead to atrial fibrillation. Hills hasn’t had an AFib episode since the surgery. She also takes an anticoagulant to lower her stroke risk.
Terns, the police officer in Tennessee, is doing well after his second ablation procedure, which he got in 2020. During ablation, the doctor guides a thin, flexible tube through your blood vessels and uses it to deliver cold, heat, or radiofrequency energy to scar areas of your heart affected by atrial fibrillation. When it’s successful, the scarred areas stop sending the faulty electrical signals that cause AFib. Due to a complication of surgery, Terns still has a high heart rate, but his doctor thinks it could return to normal (between about 60 to 100 beats per minute) within 12 to 18 months. For now, he’ll stay on a couple of medications, with the prospect of gradually tapering off of them.
Lee, the construction office director in Malaysia, also got ablation in early 2020. He wanted to lower his odds of getting complications like a stroke later in life. Since the procedure, his heart rhythm has stayed normal (between 60 to 100 beats per minute) for several months at a time. He gets sporadic AFib episodes that go away on their own, usually within the same day. Infrequently he feels heart palpitations and a bit short of breath.
Lifestyle changes are important, too.
For years, Terns had high blood pressure, which can make you more likely to get AFib. To keep his blood pressure down, he now avoids all caffeine and alcohol, limits how much salty food he eats, and manages his stress. He still gets regular exercise, but he doesn’t do prolonged, intense cardio anymore.
Lee also gave up coffee and alcohol, along with triathlon-related sports. “Psychologically, it is tough to deal with having one of my passions, triathlons, taken away from me at such a young age,” he says. These days he lifts weights, resting between sets to let his heart rate slow down.
Communication and support are key.
Terns clearly recalls his first major episode of AFib. He was working on his then-teenage son’s truck in the garage at home. The day was hot, he’d had too much coffee, not enough food, and he felt stressed. Then his symptoms started, and this time they didn’t relent quickly.
“I couldn’t walk. I ended up lying down in the driveway on my back,” he says. “I could see the fear in my wife’s eyes and my son’s eyes. And I never want to cause anybody fear like that.”
Terns said people with AFib need to educate themselves and their family, so no one is left in the dark. Terns also found support through a Facebook group called the Atrial Fibrillation Support Forum. It helped him learn more about AFib, and eventually he began sharing his tips with others. Lee and Sharp are also in the group.
“I think I would sum up my experience as we can’t be afraid to be vulnerable and have difficult conversations about our struggles and things that make us different,” Sharp says. “It’s what allows us to learn, makes us human, and helps us connect with one another.”