Posts about afib

My disabled month

Because of my heart’s fibrillation (an irregular heartbeat) and tachycardia (a rapid heartbeat), I spent the last month disabled: That is, in an instant, I became unable to do some things that were normal for me the day before. And then, in another instant, with a shock of electricity on Monday afternoon, I was able to do them again. But now I do those things with a slightly different perspective. I learned something in my disabled month.

I do most everything fast. I walk as fast as I talk as fast as I eat as fast as I type. But now I slowed down because if I overdid things by just a hair, the heart rate would go wacky. Walking up a slight hill on a Manhattan street — even walking against the wind — suddenly felt like a force field fighting me me.

It’s no big deal. It didn’t hurt. It wasn’t scary. Please stop yourself from leaving those nice, sympathetic comments — which I very much appreciate, but which I don’t need anymore, being normal again. I got around New York and London, too, during this episode. My only point here is that something changed: I was slowed down. And that changed other things.

While my heart was skipping, stuttering, and speeding, any staircase I faced grew before me like the road before Sisyphus. For a week, I couldn’t go up the stairs in my own home and rationed my trips and missed some work. Then I fired the doctor who wouldn’t give me the medication to control my heart rate. I got back on the right pill, a simple beta blocker, and then I was able to get up and out of the house. But still, when I faced stairs, I went up them slowly. I sometimes had to stop halfway up and, having conquered 20 steps, I would pull off to the side to recover.

I suspect I irritated the people stuck behind me on stairs — people in a rush, people like me, only days before.

I now stood on the right on escalators, rather than rushing up on the left. I now sought out elevators even for short, one-floor hauls. In the PATH station in New York, I stood there with old people, sick people, and mothers with baby carriages, waiting for a lift. I was embarrassed. I wondered whether they looked at me thinking, ‘What a lazy SOB: he looks fit and healthy and the excercise of a few stairs would be good for him: Get moving and don’t take up space on our elevator.’ Of course, it’s New York: Nobody really pays that much attention to anyone else. But I heard that echo in my head.

When I checked into my quaint hotel in London, built in seventeen-something, they were leading me, hauling my suitcase, up to two flights of stairs to my room — no elevator — and I had to beg off and beg for a ground-floor room. The clerk looked irritated. I might have been irritated at that, New Yorker that I am, if I had been in fighting fit. But instead, I felt embarrassed.

When I got on the plane coming home, they put me in an exit row and asked me the standard question: Are you able, etc.? I had to say, no, I’d rather not sit there just right now. I didn’t say I wasn’t able, though I wasn’t. I sensed another odd look: ‘What, you won’t rescue your fellow passengers, you selfish, first-class oaf?’ As we used to say in California, I was projecting. But that thought did flash through my head as I thought for a second about sitting there to avoid the embarrassment, though I realized that would have been irresponsible.

You all knew I was in afib, as we say in the club. It was rather self-indulgent to blog about it, for people go through far worse things than this. But I was glad I did, for I met other nice people who shared their help and experience, among them Tom Evslin’s brother, Bill, a doctor who’s a member of the club and who’s working now to find ways to survey fellow members to see what can be learned.

But I didn’t tell everyone I felt strange. I did talks and panel discussions and was fine. But as I blogged, when I did an appearance on Donny Deutsch’s show and got pissed at a professional prude and enemy of the First Amendment, my heart really went wacky fast and I thought for a second I might pass out on TV. Now that would have been embarrassing. Luckily, few would have seen it.

But now, I’m normal again. I bound up stairs, walk up on the left on escalators, rush by elevators, carry suitcases. But the contrast is so stark, it taught me a very small lesson about being disabled for a month: It wasn’t the heart rate that changed life, it was what I thought of myself that changed.

No, I’m not going to slow down and smell roses now; they make me sneeze and this wasn’t that big a life lesson. I’m not going to turn into a soft-hearted soul, even if my heart was soft; I’m still a snotty New Yorker and still a snarky blogger. No, I hope that I simply learned that the people in front of me are going at their own speed, probably for a reason. They’re not trying to get in my way as I rush past. I need to stay out of theirs. And I need to be grateful that I can rush past again. I need to appreciate normal.

But it sounds so good with that accent

Jemima Kiss — she of journalism.co.uk and the great byline — says I had “a dicky ticker.” Gotta love the Brits.

Oh, yes, she also wrote a good story about the OPA.

LATER: Jemima tells me a dicky ticker is a reference from the cult sitcom Allo Allo.

Me and Mr. Edison

Monday, I get shocked back into rhythm. Last night,, everywhere I looked, I saw electricity. I watched House on Fox and patients kept getting shocked and I thought, yow, did I lurch like that? I watched Boston Legal and a guy got arrested for electrocuting a guy. I’m getting secret message from my TV. But, no, the shock didn’t affect my brain. Not at all.

Fascinating rhythm

The prettiest music I know is the dull rhythm of a heart doing what it’s supposed to do. Beep. Beep. Beep. I am, as they say, converted, which sounds like and almost is a religious experience. And the only ill effect I know of is a very sore chest from ripping hairs out with the sticky pad that held the wires that ended my afib. The procedure itself took maybe 15 minutes and I’m back to being me. Except now I’m paranoid about every heart beat. But I’m grateful. Thanks to you all for your kind words and thoughts. Now we’ll see how long this lasts….

Closing the circuit

I’m going back to the hospital this afternoon for the second shot at getting shocked to get my afibbing, adlibbing heart back to the script. I’ll give you an update.

Off

I’m flying to London today to spend two packed days at The Guardian and two more at the Online Publishers Association confab. I’m sorry that I won’t be able to do London meet-ups; the schedule is full with work. Blogging will be unpredictable because the days are jammed and because I’m still dragging thanks to my afib. I quizzed the doctor a dozen ways whether it was OK traveling, but my blood is as thin as stone soup now, so he assures me it’s fine. I’m scheduled to get plugged into the wall socket on the Monday after I return and he’s just as glad I’ll spend more time getting thinned. I’m also using my infirmity as a convenient if stretched excuse to try the new Eos Airlines: all flat-beds, endless legroom, decent wine, electric sockets — for the laptop, not me — but, alas, no wi-fi; can’t have everything.

The afib chronicles

Since you didn’t ask… The latest on my fluttering, fibrillating, mildly f’ed-up heart…

I had the strangest business meeting of my career (or probably of those with whom I was meeting) today. I was having a great time with Matt Mullenweg and Toni Schneider of WordPress sitting in the ritzy Peninsula Hotel lobby (fear not, investors, they weren’t staying there; this was Tony Conrad‘s idea for a venue). And suddenly I started feeling faint — which never happens to me, not even when my blog host is down — and I had to tell the guys what was happening just in case I passed out. I told them in email later that I’ve never done that before, not even as a negotiating tactic (though it could be a good idea, eh?). Hypochondriac that I am, I called the doctor. I’d taken a big fall this morning and being on blood thinners, my fears raced to internal bleeding and all kinds of nasty scenarios. The nurse said that I’d just have a black & blue butt. I had water and got out in the fresh air and was fine. It seems my pulse was just slow. And my embarrassment high. But I’m very grateful to Matt and Toni for bearing with me at that most odd moment.

Damn, I can’t wait to get back to normal. And that wonderful day is now scheduled for March 6, after I return from a business trip to Europe and my blood is as thin as clear Japanese soup. I met with my new doctor yesterday and found kismet. We have a plan: I’ll stay on thinners until I get zapped on the 6th, then I’ll up my antiarrythmic medication, Rhythmol. If that doesn’t hold me, I will get me to the electrical socket within 48 hours, so I don’t have to go through this routine again and I won’t bore you with it. And then we’ll talk about ablating the nerves in the heart that are causing this (a procedure I wouldn’t have considered two weeks ago but now it sounds like an island vacation) and I’m starting to look into doctors to do that (starting with the Cleveland Clinic).

Dr. Blog

I debated whether to blog about my afib because it is (a) self-indulgent, (b) off-topic, (c) boring to most people, and (d) makes me sound like I’m in the old folks’ home already. But this is my blog and blogs are about life and so I did it and I’m glad I did, for kind folks not only gave me nice wishes and good information, but interesting conversations ensued that may actually lead to something. I got email from Bill Evslin, the Hawaiian doctor-brother of my blogging friend and online author Tom Evslin. Bill is in the afib frat but because he’s a doctor, he also has good advice — or actually, smart questions. In our three-way email exchange, the amazing Evslins wondered….

Wouldn’t there be value in getting the population of fibrillation patients to share their experiences online? The disorder is mysterious in many ways and perhaps the anecdotal testimony of these patients would help focus attention on causes and possibly effective treatment or might simply inspire those who are working on the problem. Tom started the bidding with that question. Bill responded in email:

I believe the collected wisdom of the patients themselves could shed some light on factors which cause AF and methods of treatment which have helped to ameliorate the condition. It is a very frustrating condition for physicians and patients as none of our preventive or curative treatments are good enough. What makes it ripe for research is the intermittent nature of [the condition]…

I am also quite interested in anecdotes concerning the people who got better. Science generally prides itself on staying away from anecdotes, but a large number of similar stories can push scientific borders….

My suggestion is to create a simple questionnaire that could be used to tabulate certain types of results such as, do you think certain foods triggered your symptoms? And then open ended questions concerning causes and possible cures.

I came back with this:

A survey is good and needed. But I also wonder whether there is value in ongoing narrative. What if all afib patients blogged their experience with tags so the posts could be found (they also could add posts to forums or group blogs) with limited metadata (e.g., labels for causes, treatment, etc.)? The data is freeform but with some contextual analysis, someone might start to find patterns (e.g., frequent mentions of chocolate). Similarly, doctors could blog cases, showing more or less success with various treatments or discussion of causes.

The point is that there is a narrative to this ailment. Does the internet allow us to start to capture that narrative. Yes, by its nature, it is anecdotal. But so is the ailment. That’s life.

Now one problem is that some crackpot theories could end up in this pool of information — afib caused by aliens — but the internet is good at dealing with outliers. People could vote on posts, a la Digg (or its medical cousin, Pligg), to show agreement and start to swarm around shared views; posts with more links could gain more authority.

Tom says this ability for people “to concentrate information may be one of the greatest disintermediations of all.”

So what do you think? Fear not, I won’t turn this into the afib blog. But I think that a combination of survey data and narrative using the tools of the internet to bring together all this data and experience could yield new frontiers of research and inspiration for this condition and, of course, others. Please join in…..

: ALSO: Just searching on “afib” at Technorati yielded some fascinating links. This is a wonderful medical blog, which in turn led me to lots of good medical-journal articles and also to the medical Digg and to a rate-my-doctors site. Disintermediation, indeed.