Reflections on Twenty Years with Atrial Fibrillation

Jon Darsee, Austin, Texas
Jon Darsee, Austin, Texas

Jon Darsee is the executive vice president of corporate sales and payer relations of iRhythm Technologies, Inc., a healthcare information services provider and creator of the ZIO Patch and the ZIO Service.

I was diagnosed with atrial fibrillation in the Autumn of 1993. I was 34 years old. Doctors told me that I had ‘Lone’ Afib, which meant that I had no structural disease or other risk factors. In other words, they couldn’t pinpoint why I had it. Neither could I — I didn’t drink or smoke at the time. I was a former professional basketball player. I also had pristine blood work and an otherworldly cholesterol level of 127. The thought that something was wrong was beyond my comprehension.  

My first episodes of Afib happened one Saturday morning while driving down the New Jersey Turnpike after drinking 3 double expressos. Fearing I’d be late to pick up my daughter for the weekend, I felt a thump in my chest followed by a rapid-fire series of beats that didn’t let up. Every few seconds I found myself breathing deliberately, sucking in as much oxygen as possible. I felt lightheaded. I pulled off the highway and took my pulse. It was irregular and 2 and a half times my normal heart rate. 

At the time I was a cardiology equipment salesman — specifically, I sold heart monitoring devices used to help diagnose the very symptoms I was suffering from. I grabbed a demo recorder from the trunk of my car and attached some sticky electrodes to my chest. I snapped on the lead wires and recorded my ECG while sitting in the front seat of my car. Then I transmitted the signal over the telephone to a customer of mine, and soon found out I was in Afib.

It was a surreal feeling to think that I was becoming a patient. Being in the business, I was very familiar with the Afib demographic and knew that I didn’t fit. I was embarrassed to talk about it and convinced that it was a fluke. I’d worn heart monitors several times in training or for demonstration, and I had never experienced an arrhythmia.

I quit coffee and caffeine cold turkey. I took more supplements, ate breakfast, and stepped up my workouts. I made every physical change that I could think of. I devoured anything I could find about Afib and queried my customers about their struggles to diagnose and manage the disease. The irony that my daytime hours were dominated by efforts to get cardiologists to buy monitoring equipment to detect and help their patients with the condition I was experiencing was never lost on me.

Alone with Afib  

After living free of Afib for two years, it happened again. My life at that time was complicated — I was in the midst of a divorce, I had two daughters, and was under a lot of stress. 

There was also a lingering unease that lifestyle choices had led to this weakness in my heart. That Afib turned up only when I was under intense emotional stress led me to wonder if it might just be a symptom of a larger issue.

I treated Afib like it was a character flaw. Although I worked in healthcare, I had an aversion to seeing doctors or taking medication. My ego could not take the thought of me being a patient. Here I was in the cardiology business embarrassed to talk to my friends! For the first ten years, I stayed in denial about having a ‘condition’. I perceived a relationship between stress, drama and Afib that convinced me if I balanced my behavior emotionally and physically this ailment might just go away. One day while sheepishly describing my story to a doctor, he cut me off mid-sentence, “This isn’t your fault!” I looked at him and thought how can he be so sure? 

I made an ardent effort to employ positive thinking, visualization and meditation to find that balance. I routinely self-monitored and became a master of taking my pulse and correlating it to the recorded ECG printout. I started a diary and kept a record of every time I went into Afib. I tried all sorts of alternative methods to cure the Afib. After reading a book about ancient healing techniques, I twice jumped into an ice cold bath to rid myself (it worked just like a cardioversion). I tried taking high doses of magnesium. I tried acupuncture. I was open to any form of alternative hope. I thought that I was going to heal myself and then teach the cardiology world how I did it. A friend labeled my attitude the “new age arrogance.” 

The wake-up call came in the early 2000s when, in short succession, both of my parents were diagnosed with Afib. My dad became fond of joking, “We caught this from you.” He helped me to accept the reality and I no longer felt so isolated. By then my Afib was occurring at least once a year, and I had begun to correlate triggers to physical causes such as alcohol use or a lack of sleep. I started taking aspirin daily and went to see two renowned cardiologists. I was relieved when upon examination, neither of them recommended a procedure. 

The Unwanted Cousin  

I began to approach Afib like it was an unwanted cousin. You know, the cousin who shows up unexpectedly and stays too long and whose behavior annoys you to no end? Like an unwanted cousin, Afib is a part of who I am. I let go of any sense of shame and stopped blaming myself, mostly. I realized that I’ve actually made mostly good choices and that in fact, my lifestyle is rather tame, largely organic and benign. A cardiac electrophysiologist recently asked, “Why not have an ablation and just end this?” Well, I admit I’m scared, and although I’m told I’m a great candidate for cardiac ablation, I’m not yet ready. 

Then recently that ‘cousin’ came knocking. There was no announcing its presence. As I turned to climb a flight of stairs, my heart started knocking hard from the inside out, stealing my breath and causing me to grasp for the railing. A brief wave of nausea overtook me when I realize I’m back in Afib. A sinking feeling descends that takes some mental fortitude to push through. In the first decade with Afib, I’d cancel everything and stay in bed waiting for it to subside. Now I push it out with medication and proactive perseverance. Each time it comes I wonder, will this be the time it doesn’t leave? Am I gambling with the risk of stroke? Is it time to consider a procedure? 

After two hours and 200 mg of antiarrhythmics, the afib was gone — my left fingers pressed to my right wrist counting for regularity, feeling for the rhythmic simplicity I’ve come to cherish. I once suffered Afib with embarrassment and shame. Now I accept it without taking it personally, and I’m grateful for at least one side effect — the humility that came with finally accepting this condition.  

My new normal is daily aspirin and antiarrhythmics. I know that I put myself at risk when I am dehydrated or when I don’t sleep, particularly when traveling long distances. I know that when I am in emotional distress, my risk increases. I know to take my meds on time and to take a higher dose of antiarrhythmic when needed. It has been demonstrated that Afib is a progressive disease and although I have managed to avoid surgery for 20 years, I am realistic about how long this approach might hold.

The antiarrhythmic that I now take daily has all but eliminated episodes of Afib and I seem to tolerate the drug well. But I’m wise to expect to hear that asynchronous, unexpected knock a couple of times a year. The cousin is less a reminder of fear today than of the uncomfortable reality. At all times I find solace, gratitude and even inspiration in the contrast between this chaotic beating cousin and the wonderful rhythm of normal life.

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On-Demand Webcast

New Convergent Ablation Options for Managing Persistent Atrial Fibrillation  

This activity is designed for electrophysiologists, cardiothoracic surgeons, physicians in related specialties, and allied health professionals involved in the care of electrophysiology and cardiothoracic surgical patients including nurses, physician assistants, and perfusionists.

Supported by an educational grant from nContact, Inc. There is no fee associated with this activity.