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First, with a grateful nod to all of you who’ve been sending me good wishes: I’ve had no recurrence of what I call the grand mal, the racing heart and irregular pulse, for well over a month.
I’ve been steadily stepping up the exercise and the cardiac workload, cycling whenever possible up and down Burlington’s hilly streets, even (though only last week) running up a steep flight of stairs.
Yesterday I played soccer in my usual goalie position and realized that when the play was at the other end of the field, my pulse actually returned to a calm tempo, alert but, so to speak, taking a breather. Today I actually broke into a run (well, at least a brisk trot) on several occasions and scored a couple of goals. Every so often I might skip a single beat, but there was no sign of that arrhythmic chaos, that fundamental and disturbing loss of control over my most core function.
So is this a sign of the medication (which I’m still taking at pretty much a minimum dosage) working, or of my general fitness improving, or simply the healing qualities of time? My cardiologist wisely avoided the question, adopting an “if it ain’t broke any more, don’t try to keep fixing it” approach.
All the same, I can’t help feeling that the situation is like being in the trenches in World War I: just because the artillery barrage has stopped doesn’t mean the Armistice has been signed. We are just as much in the dark about whether everything is better as we were about what caused things to go wrong in the first place.
So here, in no particular order, are some of the questions I find accompanying me like notes saying “Kick me” that some prankster has taped, without my knowledge, to the back of my jacket.
If the issue is strictly one of arrhythmia, why does it also feel like an issue of congestion? According to the tests (see preceding chapters in this saga, notably “A Beautiful Heart”), I don’t suffer from congestive heart disease and, in fact, my cholesterol is lower than it has been in more than a decade. Yet when I first started trying a modest amount of exercise after the major events of late July, my heart felt as though it had to work ten times as hard as usual just to move me from A to B. Walking uphill felt like walking uphill carrying a hundredweight of potatoes. Nothing to do with rhythm–it was much more about efficiency: simply to ingest and distribute the oxygen I needed was a major, major effort.
And speaking of oxygen, I keep wondering about the relationship, perhaps more metaphorical than mechanical, between this cardiac stuff and my asthma. My asthma has been noticeably worse this year–not to any deadly extent, but I’m using my albuterol inhaler four or fives times a day instead of once. If I’m getting less oxygen, don’t you think that’d trigger the heart to work harder, to labor more to make up for the reduced intake?
And that leads to another question, one that I’ve been politely told is seriously off the rails, but maybe someone could explain to me exactly where I jumped the track and started heading across the open countryside. It goes like this. My researches in cardiology haven’t yet got to the place that tells me how the heart knows how fast to beat.
If (in evolutionary terms) the four-chambered mammalian heart developed as creatures needed to be able to take in and distribute more oxygen more quickly (a factor so important that apparently the monitor lizard of the Komodo dragon–I forget which–developed a five-chambered heart, so vital was the quick change from stillness to rapid movement), then the lungs and the heart developed together, with an intimate and entwined sense of purpose. Somewhere in that mechanical combination there must be some kind of sensor that measures how much oxygen is being absorbed into the bloodstream, and if it’s insufficient to meet the needs of the moment, it must trigger an instinct to breathe more rapidly and for our hearts to beat more quickly.
So this suggests a different way of looking at A Fib. What if it’s not a heart problem but an oxygen sensor problem? What if the sensor is faulty and starts telling the heart Beat like crazy! This is an emergency, dammit! And in fact tells the heart to beat more urgently than it can reasonably do in a controlled and regular manner?
This suspicion (and I must stress it’s no more than a suspicion, and I don’t know what the hell I’m really talking about) is reinforced by the fact that the chaotic signals that set the heart into atrial fibrillation originate at or around the pulmonary vein and/or artery. It seems to this ignorant layman that there’s more to this heart-lung connection than meets the eye.
Meanwhile, the most counter-intuitive issue of all heads off in a completely different direction: why would arrhythmia strike when the heart is not under pressure at all but is actually slowing down? After all, not only were both of my major attacks late in the evening, but a friend with serious arrhythmia tells me his attacks always start at night, when he’s asleep.
Answers, as they say, on a postcard, please. Because knowing more about one’s condition is a vital part of feeling better. You know where to reach me.
Tim

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Finally, I’m attacking this issue in the 21st century manner—by downloading apps onto my iPhone.

AFib Educator is made by one of the world’s largest drug companies, Sanofi-Aventis. It must have seemed a good idea to spend the time and money developing an app; after all, as the app says, AFib (the Sanofi-Aventis abbreviation) is the most common cardiac arrhythmia seen by physicians, affecting about 2.5 million Americans.

It offered an animated display that would show the difference between what the heart is doing in normal rhythm and what it’s doing during a. fib., but for some reason it would only play the “normal” animation. Not very impressive.

Its brief FAQ page starts unpromisingly with “What are the symptoms of AFib?” and confesses its own inadequacies right away: “You may not have any AFib symptoms.” I’m discovering this is, in fact, true–but it doesn’t offer any suggestions as to what someone should do if they suspect they have a. fib. but don’t know, and don’t have symptoms.

The “Who is at risk for developing AFib?” is as unhelpful as ever. It lists possible risk factors as Increasing age (duuuh: everyone’s age is constantly increasing); family history (not in my case); high blood pressure (just the opposite); coronary artery disease (nope); obesity (nope); diabetes (nope); and heart failure (only when I saw the ER and cardiologist’s bills that came in yesterday).

Another button offers to send this very limited assemblage of facts to someone else, and that’s about the extent of this app. Neither helpful nor reassuring. One and a half stars, I guess, or maybe one and a half heartbeats.

AF Guide, created by QxMD Medical Software (a thoroughly ill-chosen name, as Qx could well be pronounced “quacks”) is intended for the healthcare worker rather than the patient.

The Introduction told me a few things I didn’t know. “[T]he total number of patients hospitalized for AF is more than for all other arrhythmias combined….[T]he incidence and prevalence increases significantly with age, with 1 in 25 over the age of 60 years and nearly 1 in 10 over the age of 80 years having a diagnosis of AF.” And, not especially encouragingly, “patients with AF are at higher risk of overall mortality when compared to non-AF patients.” Okay, but is that cause or effect? Is AF a sign of increasingly deterioration of other systems?

It offers a sample ECG, which was nifty but rather limited, and a link to a much more extensive library of heartbeat patterns–but this turns out to be something of a sales gimmick, as that link takes you to a sales pitch for another, much more comprehensive $0.99 app by the same company called ECG Guide.

The Management section is a major disappointment, suggesting goals and factors to be taken into consideration, but saying nothing at all about ablation or pacemakers, about anti-arrhythmia meds, blood-thinners and beta-blockers, about cardioversion.

Continuing down the extensive menu, the Presentation section, it strikes me, could potentially provide useful fodder for the underachieving AFib Educator app. Though some of the language is maybe a bit on the techy side ”The most common symptoms are palpitations, dyspnea, fatigue, syncope and pre-syncope,” it wouldn’t take much to rewrite those in Joe A. Fib language, and the final two pieces of advice would actually be very sensible to pass on to the patient: “Define the duration and frequency of episodes,” and “Note precipitating factors and modes of termination.” Medical personnel may well not be present when all those things are going on; raise the patient’s awareness, say I, and let him or her gather good observations. And then listen to his or her report.

The Causes section is clearly moving into the realm of the medical professional, bandying about terms such as “amyloidosis” and “subarachnoid hemorrhage.” (Doesn’t that mean “bleeding under the spider”?) All in all, the causes seemed to be a lot broader, richer, and secondary to some other condition than the AFib Educator implied. In fact, it left me wondering whether the simple term “wear and tear” would apply—and if so, why. What is it that all these causes have in common, and what do those common elements do to the wiring of the heart? And for what it’s worth, I don’t think I have a single one of this encyclopedia panorama of conditions except one or both of those listed under “Idiopathic”—a term that doesn’t mean, by the way, that I’m a moron, but simply that these are causes that may not be understood and don’t fall into the other categories.

Under “Idiopathic” the app listed “Lone AF” and “Familial AF.” And these hints connect with the somewhat overlapping section “”Classification,” where I finally get my answer as to how my AF might be classified.

The three types, according to the app, are “Paroxysmal,” which affects 23% of sufferers and involves self-limiting episodes that last up to 7 days; “Persistent,” which covers 38%, lasts longer than 7 days and requires the sticky pads, the defibrillator and the electricity; and “Permanent,” which afflicts 39% of poor souls, consists of episodes that last more than a year and can’t be cardioverted. Yikes.

But then, down below these three (which conveniently total 100%), is the one that seems to be me, the outlaw, the “Lone” AF guy: “Atrial fibrillation in patients<60y without no structural heart disease or risk factors.” Yep, I’m the one without no heart disease. I’m the zero percent, the Lone A Fib. All in all, I prefer the AF Guide. Now all they need to do is write it out in lay terms and sell it to Sanofi-Aventis to use as AFibEducator Mark II. But if these were really smart apps, they’d come with those little finger-clamps they put on you to track your pulse, or maybe even use the touch-sensitive iPhone screen to read your pulse as you squash the iPhone against your carotid artery. The app would read your pulse and send it wirelessly to your cardiologist. That'd be something really useful, perhaps even life-saving. Still, these apps did have one immediate and positive effect on me. No sooner had I read that phrase "Familial AF," I heard from my sister Jennie in London: “Hello bro, just read your email below...is this the same as heart palpitations? My heart has an irregular rhythm about 3 times a day and sometimes it's so wierd that it I feel faint. It's usually over as quickly as it started but it leaves me feeling odd. I had it particularly badly during my pregnancy but it still comes back now and again. I had loads of tests which came back inconclusive. It is not in response to alcohol or coffee etc but can sometimes be triggered by quick burst of exercise (like running up stairs). 

Should I be worried? What should I do? Is this the same as yours?” Well, well. And my father suffered from angina pectoris—I wonder if there’s a genetic connection? I answered Jennie as best I could: “The answer is maybe, perhaps and quite possibly. You should definitely get it checked, and when you see your doctor, tell him what's happening to me. Good luck!”
 Midway through the afternoon—how is it that these huge, life-threatening things can happen and then completely slip our minds—I remembered that my sister Sally, too, had once had some trouble with her heart. I emailed her in England, and at once she read this blog and emailed back, saying we needed to talk. As it was, we Skyped for 35 minutes, and once again I got a refresher course in how an investigation of one’s own frailties—or most kinds of vulnerability—brings its own rewards. She and I hadn’t talked in probably a year, and we had never Skyped. My brother-in-law Colin stuttered around in the background; she showed me around the extension they’re building on their house, her laptop camera taking me unevenly from room to crazily-angled room. It was eerie and wonderful to see her moving in that strobe-step fashion; it was like a sonogram of the family’s heart. Which was, of course, the main topic of conversation. She reminded me that our father’s mother had died of a stroke, which might, after all, be the only evidence we would ever get that she might have suffered from AFib. Sally herself, like Jennie, had encountered palpitations when she was pregnant, and several times afterwards. Never had the grand mal, the insane racing heart. At the time, she sensibly recognized that the symptoms were like those of a high level of adrenaline, and was concerned not for herself but for her unborn baby, and for that reason alone went to the doctor. “And what did your doctor say?” I asked. “He basically patted me on the head,” she said. “This was 25 years ago, after all.” We wondered why pregnancy should have brought on AFib in both of them (hormones? The extra weight? The fact that the mother was essentially breathing for two and creating a greater oxygen need?) but there are just too many potential culprits, and we gave up. The good news was that she hadn’t had an attack (that she had noticed, at least) for years. “Maybe when I was walking quickly uphill,” she said, thoughtfully. “But now I work at home, so I don’t walk quickly uphill any more.” For whatever reason, I cleave to my use-it-or-lose-it mentality, and demand the ability to walk quickly uphill, even at 57. Or cycle. With a backpack. Or, one day, make a quick break out of goal and score, shocking everyone. As you can probably gather, this is by no means the end of the story. I hope you’ll follow as I add new chapters every few days and continue to explore both the narrow subject–atrial fibrillation–and the broader subjects, such as the heart itself, and what Whitman called “the body electric.”

I also hope you’ll forward this to anyone who has arrhythmia. This may possibly turn into a book, in which case I need all the help I can get from others, whether what they have to offer is answers or questions.

Back soon.