what it feels like: learning to listen to your heart with atrial fibrillation (afib)
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coming out the other side of living with atrial fibrillation, jim kaveney, now 50 and living in amherst, new hampshire, has written a memoir unlimited heart: how to transform your pain into purpose.
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jim kaveney was watching a movie with his kids when his heart started racing out of control and he felt his world turning black. he screamed to his wife, “i’m going down. i’m passing out,” he says, remembering the trauma. “my heartbeat at this point was 240 beats per minute. the paramedics are here, my kids are watching from above and my wife is pouring a bottle of aspirin down my throat telling me to swallow. i thought ‘this is it i’m dying.’”
but jim survived and was in the hospital for additional drugs and treatment for his atrial fibrillation (afib), which is an irregular and often rapid heart rhythm that can lead to blood clots in the heart. the condition also increases the risk of stroke, heart failure and other heart-related complications. afib can cause a fast, pounding heartbeat, shortness of breath or light-headedness—symptoms jim was very familiar with.
also frightening, for many people, afib has no symptoms. so, you can have afib with a regular heartbeat. (during afib, the heart’s upper chambers called the atria beat chaotically and irregularly. they beat out of sync with the lower heart chambers, which are called the ventricles. when you take your pulse, you’re counting the beats of your ventricles, not your atria.)
as jim explains it, because of the erratic behaviour of the atria, the blood is not able to get down into the ventricles as cleanly as it should. so, one of the largest risk factors for atrial fibrillation is stroke. in fact, you have almost a 500-fold increase of having a stroke with afib than just the normal population.
recognizing the signs of atrial fibrillation
a dangerous heart rate for afib is above 120 beats per minute with possible chest pain, shortness of breath, dizziness or confusion. this is when you need to go to hospital. episodes can come and go, or they may be persistent. bottom line, afib is a serious medical condition that needs proper treatment and lifestyle management to prevent stroke.
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“when you hear about someone who is fit as a fiddle and runs down the street one day and the next thing you hear is that they died. people think it’s a heart attack, but really it’s an electrical misfiring and the heart just can’t recover,” he says. “you get to a certain point with your heart that it doesn’t want to stop because it’s a muscle, and you push it, you push it, and it eventually it just gets to the point where it’s like, all right, i’m done.”
coming out the other side of this, jim, now 50 and living in amherst, new hampshire, has written a memoir unlimited heart: how to transform your pain into purpose. he and his wife lisa have also launched a business, unlimited heart, born out of their experience and the recognized need for support for patients and their families coping with afib. the platform links people virtually with afib healthcare providers to develop lifestyle strategies like regular exercise and healthy eating plans that can modify risk factors. his own life reboot from near-death to “free and clear with a pacemaker just for monitoring” has also opened doors for him as a motivational speaker for health and business leadership.
“we like the phraseology, ‘build better people, build better patients,” says jim of his platform’s approach to helping empower people with education and tailored wellness plans for their own health and the health of their family caregivers.
intense exercise comes with risk of atrial fibrillation
jim’s heart issues go back to his college days as a competitive rower. tall rowers (he’s 6’6” while his wife is 5’2”) have an increased likelihood of getting atrial fibrillation. he says a study coming out of australia followed more than 200 rowers for 15 years to see the health outcomes over time. rowing, like extreme marathons, is an intense sport where you push your heart for so many hours in the day, it can set you up for problems.
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“and what happened to me? of course, i ignored it, because i was 20-years-old,” he admits, now determined to reach others to take notice and see a doctor.
“i would be rowing and i’d have to maintain a standard rate threshold as part of my long-term strategy. but i would be rowing and then nothing would change physically on my part, my exertion, nothing. and then i would jump up to 185 beats per minute just like that. the alarms would go off on my monitors and my coaches would come over but nothing’s changed. and then boom, within a couple more seconds, i go right back down to 135.” this happened multiple times throughout college and he brushed it off.
“i would be rowing and i’d have to maintain a standard rate threshold as part of my long-term strategy. but i would be rowing and then nothing would change physically on my part, my exertion, nothing. and then i would jump up to 185 beats per minute just like that. the alarms would go off on my monitors and my coaches would come over but nothing’s changed. and then boom, within a couple more seconds, i go right back down to 135.” this happened multiple times throughout college and he brushed it off.
“but secretly, in the back of my mind, i was like, ‘yeah, it’s a little weird like that. that’s strange.’”
these episodes went away when jim stopped rowing after graduation. but when he was 38, he started having odd heart palpitations. he attributed it to the stress of launching a new business amidst life changes, like moving from connecticut to new hampshire to be closer to his wife’s family, and his wife leaving her job because of the cost of having their two boys, now 14 and 16, in daycare. “i remember vividly, i was in miami while i was travelling. i woke up that one morning and i couldn’t get out of bed. the minute i stood up, i was starting to pass out, so then i literally sat in bed for probably three hours.” to help him cope with stress, he started to do deep breathing exercises which he found calming. he even included them in the corporate training sessions he was running.
then he began to notice his heart racing when he was in bed at night. he was drinking more water during the day to boost his health and getting up to use the bathroom during the night as a result. the problem was, he felt unsteady and was clinging to the dresser or the wall trying to get to the bathroom, almost as if he was going to pass out. still, he just shrugged it off.
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one morning at home when he was getting up at 5 a.m. as usual to go to the gym for a workout, he walked around the bed and then fell to the floor. his wife immediately told him that it was time to see his doctor. sure enough, when he mentioned possible heart issues, his doctor ordered an electrocardiogram (ekg) test. while it showed his rhythm was normal at the time, he was given a heart monitor to wear for a week. shortly after, he was diagnosed with paroxysmal atrial fibrillation, which can last for seven days and then go back to normal rhythm. ultimately, the diagnosis became persistent afib that requires ongoing treatment and monitoring.
cardiac ablation and other atrial fibrillation treatment options
still, jim thought he could handle it mostly on his own. “i was like, ‘ok, i’ve got an issue.’ i’ve always felt historically that i was invincible. i don’t know what put me in that mindset. i just felt like,’ i’m good.’” he was referred to a cardiologist who suggested a cardiac ablation, a standard treatment for irregular heartbeats or arrhythmias. it uses heat or cold energy to create tiny scars in the heart that block faulty heart signals and restore a typical heartbeat. jim wanted to start with medications instead of jumping to surgery, but found his afib became increasingly more persistent. he experienced random weakness and brain fog.
“i was feeling pretty good, i was getting stronger, but then there were just moments where i couldn’t get out of a chair again,” he says, adding that he learned about triggers for afib, like alcohol, diet and stress. by 2014, he stopped drinking and was referred to another doctor, an electrophysiologist cardiologist, who put jim in a clinical trial. he also performed his own form of cardiac ablation that would produce less scar tissue. the outcome, as the specialist predicted, was controlling jim’s afib with an atrial flutter that happens post-treatment. further cardiac treatment finally got his heart in normal rhythm.
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“i felt amazing. i was starting to do some great things and my activity with my kids was increased,” he says, feeling good for months. but eventually, it came back with a vengeance. he was six years into his afib, and carried a much greater understanding of his triggers, but by august 2018 he started noticing other things to the point of passing out. then came another related diagnosis: tachy-brady syndrome (tbs), where you have periods where the heart beats faster than 100 beats per minute and then slower than 60 beats per minute.
“the tachy part of it is an elevated heart rate, which is what i’d been experiencing for six to nine months. but the brady part was when the heart pauses. that’s when i was passing out. so my heart was just so tired that it’s like, ‘i can’t beat anymore.’ those were six-second pauses when i felt like i was passing out.”
living with atrial fibrillation: ‘… it can come back”
his doctor said at any one of those moments, jim could have gone into congestive heart failure and died, which pushed him into emotional turmoil. “i called my wife and i’m in tears, i am telling her i need to get a pacemaker put in the next morning.”
the procedure didn’t solve everything. he had that traumatic blackout while watching a movie with his kids which he survived. in march 2019, he went in for a final ablation procedure and he’s been free and clear since.
“i didn’t go through all that for no reason,” he says. “once you’re diagnosed with it, you’re always an afib patient because it can come back. i’m in remission.”
what he’s learned is perseverance, the importance of showing his family how much he loves them, and embracing mortality.
“our days are numbered, and we don’t know what those days are. seize it and enjoy it now.”
february is heart month in canada. for more information on atrial fibrillation, visit the heart and stroke foundation.
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