ROCHESTER, MINNESOTA. As all afibbers well know, atrial fibrillation (AF) is far more than a nuisance. It is a frightening, debilitating disorder that has wrecked careers and relationships, and left many of its victims with a quality of life that is worse than that experienced by heart attack survivors and patients with heart failure. Yet many physicians and cardiologists dismiss AF, especially lone AF (no underlying heart disease), as merely a nuisance that "is not going to kill you". This lack of understanding may lead to delay in diagnosis, wrong diagnosis, and inappropriate care. A team of researchers from the Mayo Clinic and the University of Nebraska Medical Center has just completed a study aimed at finding out how it is to live with AF in the hope that its publication may lead to better understanding and management of the disorder.

The study included 7 women and 8 men ranging in age from 33 years to 85 years (median of 61 years) who underwent hour-long interviews. The participants had been diagnosed 8 years ago on average, 7 had paroxysmal AF, 8 had the persistent variety, and 80% had lone AF (no coronary artery disease). Following are the highlights of the interviews (italics indicate a verbatim quote from a participant):

• Although patients described their symptoms (palpitations, shortness of breath, loss of energy, etc) in detail, they were often told that there was no objective explanation for them and that they were probably under to much stress, working too hard, having a panic attack, or needed more rest. I had these symptoms for a year and a half, and I kept going to my local physician and he'd say – "Oh, I think you're stressed out – I think you need to cut down on some things – you know, lack of sleep."
• Some participants felt that their doctor was neither informative nor supportive once a diagnosis was made. They didn't tell me much of anything. They really didn't know what it was. Our regular doctor said, "They'll take you down, cardiovert you, and that will be the end of it."
• Several patients experienced a "turning point" when they realized the seriousness of their condition and that they had to take an active hand in dealing with it. I had never experienced such a rapid and fast heart rate. I said to myself – I really don't want to die here. I thought I was going to have a heart attack. That was the point at which I decided I need to find out exactly what this is. That's the day I realized I was not bullet proof anymore.
• After receiving the diagnosis, patients tried to find ways to avoid further episodes and their lifestyle became increasingly limited. Not knowing is the worst – not knowing what the trigger point is. You were always second-guessing what you were doing – what might happen – so you avoided certain things. I don't dare exercise very much or I know I'll be in a spell and then that ruins the whole day. I don't think you can manage it – it more manages you. Unfortunately, no matter how much you try to manage it, it ends up creeping into your life and forcing you to have workarounds and compromises that you wouldn't normally have. It has complete control – you cannot be in control of an out-of-control situation.
• Study participants reported trying, often in vain, to curtail their episodes. To break it – other things I did was cold water, ice cubes on my face, coughing real hard, deep breaths and coughing, but it seems in this calendar year, none of those things have worked.
• The loss of energy, persistent tiredness and shortness of breath associated with AF episodes dramatically influenced the ability to work, exercise, and participate in social functions. I'm not worth anything – couldn't do my work – I was just tired all the time.
• Medical treatments were often ineffective and accompanied by emotional distress. Patients reported feeling like they were on an emotional roller coaster – high hopes that a treatment would work to deep disappointment when it did not. Another source of distress was anxiety and a feeling of loss of control due to not knowing when or where an AF episode would occur, how long it would last, and what would be its aftermath. It doesn't go away – it subsides – it's like it hides until one day – here I am again! It's just mind boggling to the point you don't know what to do. It limits you as to what kind of plans you make or what you decide to do. The unpredictable part is if you had something coming up that you knew you really had to be at or couldn't miss – some function you devoted time to – I hope I have a good day, or I hope I'm not going to have a bad day. When that goes on you kind of stress out – get anxiety about it. I've withdrawn from things.
• Eventually participants began to redefine their expectations and goals so as to accommodate the fact that they had a disorder that was not going to disappear on its own, although at the same time, maintaining hope that someday a cure would be found. You know you get so used to a certain way of life you think it's normal. It becomes your new normal. It is a setback in your life, and you just have to deal with it.

The authors conclude that the experience of living with AF is, in some ways, similar to living with heart disease or heart failure. However, some aspects of the AF "experience" are unique, notably delayed diagnosis, lack of support, lack of advice on how to manage the condition, and the distress associated with not knowing when the next episode will occur.

McCabe, PJ, Barnason, SA, et al. Living with atrial fibrillation: A qualitative study. Journal of Cardiovascular Nursing, January 21, 2011 [Epub ahead of print]

Editor's comment: The findings of this study will resonate with most afibbers and, if read by physicians, will hopefully give them a better understanding of what it is like to live with AF.