Even if you have it, you may have never have felt the quivering atria at the heart of atrial fibrillation (AFib). When the heart’s upper chambers (atria) quiver irregularly instead of beating strongly and consistently, it can lead to trouble in the form of blood clots, stroke, heart failure or other heart-related complications.
At first, episodes of AFib may be very short and symptoms may not be felt, or if they are, the symptoms may be so mild and transient that people often do not recognize them as requiring medical attention. Over time the AFib episodes may get longer and the symptoms (palpitations, lightheadedness, shortness of breath, chest discomfort) become more noticeable, longer in duration, and more frequent. “Then people seem to realize they need to be evaluated,” said Pamela McCabe, Ph.D., R.N., assistant professor of nursing at the Mayo Clinic and a member of the Advisory Panel for Atrial Fibrillation Patient Education for the American Heart Association. “However, as we found in our research, this process often takes months.” In one study that examined rhythm data stored in the pacemakers and ICDs of patients 65 and older with a history of high blood pressure, researchers found that for every symptomatic episode of AFib, there were eight episodes where the patient did not experience symptoms.
So it is not unusual for AFib to be found on a routine clinic exam or when someone is evaluated prior to surgery or a procedure. “We do not understand why some people have symptoms and others don’t,” McCabe said.
Dr. Pamela McCabe
“Unfortunately, many patients believe that they’re going to have symptoms — like palpitations, dizziness or something like that — to trigger their seeking evaluation,” said McCabe. “That said, I have seen patients with a fast heartbeat for a prolonged period come to the ER with symptoms of acute heart failure such as extreme difficulty breathing and swelling.” A persistently high heart rate due to AFib can damage the main pumping function of the heart. “With that excess workload of the fast heart rate, over time some patients develop heart failure. We also know that AFib that is not treated can be more resistant to treatment, so it’s harder to return the person to normal rhythm. We also know the longer AFib is present, the more changes occur in the electrical functions and structure of the atrial heart muscle itself.”
Given that knowledge, for some patients with AFib, it may be important to be returned to normal rhythm as soon as possible before some of these things happen. But how do you motivate people who show no symptoms to get checked out for a condition that quite likely may only occur intermittently and not while they are being tested?
First, some facts
AFib is the most common heart arrhythmia, affecting more than 2.7 million Americans. “Paroxysmal AFib” is the intermittent kind, where the fibrillation comes and goes. This intermittent AFib can transition to “persistent AFib”, when the patient is in AFib for longer than seven days. If that goes on for longer than 12 months, it is considered “long-standing persistent AFib”; and “permanent AFib” is when “there has been a joint decision by the patient and clinician to cease further attempts to restore and/ or maintain sinus rhythm.”
In some people, the ventricular heart muscle (lower chamber heart muscle) gets damaged by a prolonged period of pumping at such rapid rates. That impairs the ventricles’ ability to do their job. “This does not happen to all people with rapid heart rates, but it is enough of a concern that a pillar of AFib treatment is to control fast heart rates even if people have no symptoms,” McCabe said.
Age is the prime risk factor — about 10 percent of people over 80 have AFib. It is more common in men and more common in Caucasian Americans.
Other medical conditions can contribute to AFib: “High blood pressure contributes to more cases of AFib than any other risk factor,” McCabe said. “But conditions such as coronary artery disease or heart failure are strong risks for developing AFib. We also know that some medical conditions that are on the rise such as diabetes and medically-serious obesity are also significant risk factors, and that’s why we believe that we are going to see more AFib in the future. Obstructive sleep apnea, associated with obesity, is a strong risk factor for AFib. So it’s not surprising that so many people have AFib because there are so many common medical conditions that affect many people that actually contribute to it.”
Other conditions like hyperthyroidism and asthma also increase risk. Stacey Powers is an AFib patient living in Texas. Her AFib started after a period when her thyroid “was off the charts,” she said. “I realized I was in trouble when I was at a local festival here in Austin and I couldn’t catch my breath walking back to the car.” The next day, she went to her acupuncturist, who looked up her symptoms and told her to get to a cardiologist ASAP. The morning after seeing the cardiologist, she ended up in the ER and “spent the next week being tested, lots of testing, tried different meds, got a stent and more,” she said. She was 60.
Definitive diagnosis of AFib can be tricky because in its early stages AFib may come and go. As an example, a patient comes into the ER because of a stroke. If no cause is identified, the ER doctors may run an electrocardiogram to check for AFib, since AFib is associated with a five-fold risk of stroke. If the heart is not fibrillating at that moment, the electrocardiogram will not reveal AFib, so it will go undiagnosed. Of course, if the AFib has become persistent, the electrocardiogram will show it.
Today there are monitors that can track rhythm for up to 30 days, and implantable cardiac monitors that can watch the heart for months. These newer devices have been helpful in detecting intermittent AFib.
But these are mostly used when AFib is already suspected, like after a stroke. In order to prevent people from having strokes or other consequences, it is necessary to detect AFib earlier. McCabe has been studying how to screen those most at risk — people over 65. “A simple way to do that is by locating the pulse and making an assessment about whether the pulse is regular or not,” she said. If it’s irregular, the patient undergoes an electrocardiogram (EKG). Sounds easy enough, but in the typical clinic today, blood pressure and heart rate are taken by digital devices, and no one may ever actually feel the patient’s pulse. “In Europe, there is a movement that whenever patients go to a clinic that someone locates their pulse, and if an irregular pulse is found, an EKG is performed to identify AFib.” Other studies have used smartphone apps, that give mini-EKGs, or handheld ECG devices.
McCabe has just completed a study where they taught patients how to take their own pulse and recognize an irregular heartbeat and what to do when they found one.
“I’m hoping that we really are starting to actively look for AFib, rather than waiting for patients to come to us after they have been in it for weeks to months,” McCabe said.
There are a number of treatments for AFib. Treatment options depend on its severity and the patient’s other medical conditions. “We would treat a 40-year-old with no other medical condition differently than we would treat an 80-year-old with multiple heart problems and pulmonary conditions,” McCabe said.
Generally speaking, the goal of treatment is to prevent complications and improve the patient’s quality of life by controlling symptoms and improving function. The two major approaches to treatment are: 1) to control the heart rate; or 2) rhythm control, intended to return the patient to normal rhythm, and then try to maintain it. Whichever treatment is used, if the patient meets certain risk criteria, he or she will also be treated to prevent blood clots that increase the risk for stroke. “If the patient is not symptomatic, the choice may be just to control the heart rate and prevent stroke,” McCabe said. “However, if the patient has symptoms and AFib is not well-tolerated, then the strategy of trying to control and then maintain normal rhythm may be preferred. Either treatment strategy could include medication or procedures or a combination of medications and procedures.”
Because of the risk of stroke, most AFib patients take an anticoagulant to prevent the formation of blood clots. For many years, warfarin was used for that. Warfarin requires constant monitoring and some dietary restrictions. It must be monitored with blood tests and carries an increased risk of bleeding.
A new generation of blood thinners has been developed because of the problems with warfarin. They include dabigatran, rivaroxaban, edoxaban and apixaban. They are not as temperamental as warfarin, and studies indicate that they are at least as effective at preventing blood clots.
Patients early in their course of AFib may undergo cardioversion. This involves a temporary electrical stimulus applied to the heart. “With this procedure we’re trying to get the electrical properties of the heart all on one page, so to speak,” McCabe said. “When we’re successful with that, the sinus or regular rhythm takes over, and they actually have a normal rhythm for a time.”
This is how Stacey Powers’ AFib odyssey began. After she was admitted to the hospital, she received six cardioversion treatments, none of which succeeded in returning her to a normal sinus rhythm. “I hated getting my chest burned from cardioversion — it was like a 2nd degree burn,” she said. “Pretty much, the only other treatment was lots of meds.”
If AFib has been in place for months or years, it may be difficult to shock the heart into a normal rhythm. Then doctors will try medications like beta blockers, calcium channel blockers and digoxin to control the patient’s heart rate. Most people feel better if their heart rate is controlled. Doctors may also try medicines like sodium channel blockers and potassium channel blockers, which affect the heart’s electrical system, to impact its rhythm.
If cardioversion or medication don’t work, ablation is another option. First, an electrically sensitive catheter is used to map certain structures of the heart and locate the origins of the “extra” electrical activity. This map tells the physician (an electrophysiologist) which areas of the heart are creating problematic electric signals that interfere with proper rhythm. Using this map, the physician threads a different catheter to the problem areas and destroys malfunctioning tissue using the catheter to deliver energy (such as radiofrequency, laser or cryotherapy) to scar the problem areas. The scarred areas no longer send abnormal signals. If successful, the heart will return to normal rhythm.
Patients are generally placed on a short course of antiarrhythmic drugs while the procedure takes full effect.
McCabe says that ablation may also be used very early on in people with intermittent AFib who have fewer medical conditions. It is also gaining acceptance for patients who have a more persistent AFib as well. “We’re still looking at studies that should tell us whether medication or ablation is the better treatment,” McCabe said. “Ablation has actually not been around long enough to know all of the long-term effects of it. In some cases, AFib may return, so the ablation procedure may need to be tried multiple times.”
Stacey Powers underwent an ablation in May 2015 and was free of AFib for seven months. Then she had to have hernia surgery and got a staph infection, which required two more surgeries, six weeks in the hospital and a stay in a skilled nursing facility. Her AFib returned.
While we were developing this article, Stacey underwent her seventh cardioversion. “My new electrophysiologist (EP) felt I had very high chances of success because of the prior ablation being successful and I’ve been on all the right medicines for a while now,” she said. “My heart rate has been 135-140 beats/minute for several months now, my blood pressure has been sky high, my feet are grossly swollen, and I can’t keep going like this, so I agreed to the cardioversion, but I made the new EP promise no burning my chest! If cardioversion doesn’t work, then I’m looking at another ablation.”
Stacey’s particularly challenging journey with AFib may not be typical. As we went to press, Stacey had had the procedure, and the cardioversion was effective. Using a smartphone app called Kardia, she can get a 30-second EKG that she can then share with her medical team. Meanwhile, she is taking Sotolol™, a heart-rhythm drug, and Xarelto™, one of the new generation of blood thinners that is replacing the tricky-to-use warfarin.
Living with AFib can be uncomfortable and unpredictable. As we’ve said, it can also lead to stroke or heart failure. According to McCabe, there’s some evidence that suggests that AFib puts people at risk for cognitive impairment and dementia. “Also we know that when people have pre-existing conditions such as heart failure, people with AFib do worse, and have poorer outcomes than patients who don’t have AFib but do have heart failure,” she said. “We know that when people with AFib have a stroke, they have poorer outcomes than people who have strokes not related to AFib.”
Psychological and behavioral responses
Living with a chronic condition is challenging, and no two people respond the same. McCabe has investigated psychological and behavioral responses. “We found that how a person perceives AFib, and the type of AFib that they have, can affect their psychological response,” she said.
Through one-on-one interviews with patients with recurrent AFib, she identified a variety of responses. Some patients were distressed by their symptoms of fatigue and shortness of breath because it interfered with their ability to carry out their roles — parent, worker or a productive community member. Other patients stopped participating in social and recreational activities, afraid it might stress them and trigger an episode; or they feared being embarrassed if they had an episode in public. Some were reluctant to go on vacation away from their typical medical care. Others focused on finding out what triggered their AFib — was it certain activities or certain foods or drinks?
“There’s a lot of frustration that people can feel if they try multiple therapies, and they don’t work even though they’re doing everything they can,” McCabe said. “It’s very possible for a person to take their medications absolutely on time and still develop AFib anyway and go on to still another therapy.”
Stacey Powers’ story
Frustration is a familiar emotion for Stacey Powers, who can’t seem to get her body on an even keel trying to balance AFib, her thyroid and sleep apnea. Before her most recent cardioversion, her heart rate was running about 140 beats per minute and her activities were severely restricted.
The AFib has affected her social life, “and not in a good way. I can’t dance now,” she said. “I have to walk very slowly compared to my normal walking pace. Have to accommodate lots of symptoms and the repercussions of them. There are so many events, meetings, dates and social things that I haven’t gone to because I just don’t have any energy. I live in the country because I enjoy the outdoors, and I can’t even do much outdoors.
“Travel has become very difficult, as I now have to pack the ‘old lady pill box’ — you know, the one with 7 days and 4 times a day, full of pills, as well as my CPAP machine. Can’t go even one night without the CPAP, or I feel lousy the next day.” She only sees her family once or twice a year, less than half what it used to be.
“I can’t get out and be social like I’d like. It’s hard enough to date at my age, let alone with all these health issues. I had a great date with a widower — he just couldn’t handle my heart issues, so it was only one date.
“Safety is a big concern — things like falling, having a heart episode, cutting myself and bleeding out. Living by myself out in the country — all that can be an issue.”
The role of social support in AFib has not been investigated the way it has for other cardiovascular diseases like heart attack, heart failure and coronary artery disease. McCabe’s study of AFib patients indicates that they sometimes feel unsupported by their families, their spouses and their co-workers. In some way this may be because people with AFib look fine. “It’s hard for people who don’t know about AFib to understand how it can affect a person’s ability to function, and how it feels to have your heart beating 160 beats per minute,” she said. “When it’s like that, it is difficult to do your work and activities. There’s a lot more to do in terms of understanding how AFib affects not just patients, but the people who are important to them.”
A reliable place to find valuable support is My Afib Experience, developed by the American Heart Association and StopAfib.org to help people living with AFib find quality information so they can better manage their condition. My AFib Experience offers a wealth of free tools and resources as well as a community forum, where AFib patients and caregivers can connect with one another to give and receive support.
For Stacey, the MyAfibExperience community forum has been a venue to get practical advice and share what has worked for her. “With AFib, symptoms and triggers vary widely so having a variety of feedback is beneficial,” she said. “It’s a fabulous tool to connect with others.”
It’s easy to use, you just sign up and you can either post a question, respond to a post or simply read the responses of others. “The message board is valuable to me,” Powers said. Also of value to her have been the “Get in Rhythm and Stay in Rhythm” conferences put on by StopAFib.org.
McCabe emphasizes that there is work to do if we are to avoid the burden AFib will bring to our healthcare system as our populace ages. “There’s a real lack of knowledge about AFib even though it is a very common thing,” she said. “We just don’t talk about it like we talk about heart attack. We definitely have work to do in public education. And it’s coming because the scientific community has finally realized that AFib is becoming such a public health burden that we have to do more than just treat it with ablation and drugs. We need to look at how to prevent it and how to treat it early.”
AFib can happen to anyone. Visit the American Heart Association website to learn more.
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