Atrial Fibrillation is a Lonely Disease

Patient Expert

Author Carson McCullers told us that the heart is a Lonely Hunter.  But, I had forgotten that atrial fibrillation is a lonely disease.  Lonely because it doesn't show.  Lonely because it is often underdiagnosed, undertreated, and not really understood by doctors or  laypeople.

I've been writing about atrial fibrillation, the most common of the heart arrhythmias, affecting perhaps 3 million Americans with numbers projected  to rise. My editor and I had agreed that the topic of afib was an important one and a timely one. This coming week, I was going to explore what is  often the first step in treatment of afib, the effort to nudge the heart out of its arrhythmia and into a normal sinus rhythm (NSR) by cardioverting  it, using either the electric current of paddles, or  the use of antiarrythmic meds.

My last cardioversion was in August of 2005. After three months of persistent afib, I was cardioverted with one try and went into NSR,  where I remained, without the help of anti-arrhythmic medications, for nine years. I thought I was pretty much done with afib.

That is, until last week, when, out of nowhere and for no particular reason that I can identify, I woke up and knew that my heart rhythm wasn't right.  My unwanted guest was back. To say I was upset would not quite convey my feelings. I immediately blamed myself - who else? I must  have done something wrong.

What did I do?

What did I eat? Drink?

Did I not control my GERD (indigestion) properly? Did I eat some exotic food? Jump up and down in my sleep? Maybe.

I had a nightmare. All silly theories, but too often those of us in afib are reduced to playing some sort of cardiac guessing game - what did I  do this time? What can I avoid next time? Staying up too late. Getting up too early. Having too much fun. Getting too stressed, becoming upsetover something.  Drinking a beer. (Alcohol) Eating Chinese food. (MSG!)  You name it, you can blame  afib on it.

My experience underscores the unpredictability and frustration of dealing with this condition, and reminds me of how lonely it feels  to have it. How disappointing, discouraging and upsetting it is to have arguably the most crucial organ of your body forgetting how to operate  properly and to start tossing out  fairly ineffective heartbeats  that do not support your blood flow, which can speed up to 300 bpm (an emergency requiring immediate  cardioversion), that can make you feel  nauseous, dizzy, breathless, anxious and worried about your health and your future.

So, here I have been writing about afib, but I had forgotten what it's like to HAVE afib. Well, I'm back in the sisterhood (and brotherhood) now, and am finding support with others who have this condition.

It's a very difficult disease to understand. Your friends think, well, you have a few palpitations, but you're taking a pill for it, so what's your problem? Your doctor even thinks he'll cardiovert you after he makes sure your blood is thin enough, and that'll be it! Well, it's no so easy as all that.

People think it's not dangerous, like a heart attack. It isn't exotic, like the "broken heart" syndrome. And, it isn't even devastating, like heart failure.  Of course, they're wrong. Afib is too often portrayed as a minor inconvenience rather than a serious condition.

Afib steals that spontenaity from us that we all enjoy; from a workout at the gym to a quick ride on the bike. "Did I do too much?" is a constant thought.  So, we're told to calm down and relax. Only that you have an irregular heart rhythm and you aren't really sure if you are going to get rid of it, if it is going to come back, if it  is going to be a permanent guest, or if it is going to cause a blood clot.

So this blog was going to be about the typical first step in treating atrial fibrillation, but my body had other plans. Stay tuned...