BuzzMachine

I signed up for Google Health and immediately found it handy with news about each of my conditions. My wife wondered why anyone would use it and risk health data becoming public.

But my life is already an open blog and I’ve already talked about most of my conditions — mainly atrial fibrilation — and received benefit for it: support, links, resources, others’ experiences.

So why not talk publicly about our health? Fear. We fear losing a job or not getting insurance or, with certain conditions, being stigmatized. That is what we should address. With universal insurance and laws to prevent discrimination on health, we’d have no need to fear. Stigma, I can’t do much about.

There are other benefits accruing if we talk publicly. The more we share experience and create data, the more doctors can learn about our conditions and perhaps what causes them. The more we support each other, the more helpful it is for each of us (see Patients Like Me).

Do I trust Google with my health information? Do I trust you? The key is to make sure that I have control over my data. Just as with Facebook, control is the issue.

: Just as I finished writing this, I see that Fred Wilson agrees. Note that his father and I have shared our afib experience and I found it very helpful.

Well, the good news is that Starbucks got rid of transfats last week in New York and other markets. The bad news is that my beloved raspberry scone changed. That means that for the last year or so, I’ve been breakfasting on transfats. Last week, my cardiologist also scolded me for my bad cholesterol. I blame Starbucks.

But they do have a “reduced fat” (how reduced?) cinnamon chip mini loaf that’s pretty damned good. It’s probably loaded with heroin.

So there’s been radio silence because I thought the afib genie had returned to mess up my heart rhythm and I ended up trying to get somebody to give me an EKG so I could make sure. Most times, I know for certain but once in awhile, it can be hard to discern the neurotic set of palpitations from cardiac anarchy. Neither is terribly dangerous, but if it’s afib, you have to act within 24-48 hours or suffer through a month of turning your blood into weak tea. So I wanted to know quickly whether I was hitting on all cylinders. I went to my medical group’s urgent care facility last night but they were going to send me to the hospital, where I surely would have spent the night going through lots of fuss. So I called a new doctor I was planning to switch to and he was no nonsense: I went to his hospital this morning and if they found I was in afib, he would have plugged me into the wallsocket there and then. Turns out, I didn’t have afib; I was merely neurotic. And that’s good, if embarrassing, news.

But it all made me wish that I could give myself an EKG at home. And I went through Google and, lo and behold, there is such a device: $349 and you USB the data up. There are versions of this that track you all day long and the companies that do it charge thousands of dollars. But here is the Hospital 2.0 version. I wondered whether there was an open-source version. Sure enough: Here’s a homebrew EKG from Scientific American for $60. I can’t wait for the MAKE version with a car battery and tin can.

For my few fellow afibbers, here’s a story about an Italian study reporting considerable success with nerve ablation. (Thanks, nancy.)

Dr. Helen (aka Mrs. Insta Pundit) is, unfortunately, a fellow member of the afib club. She responds to my post about my disabled month with some advice that, unsurprisingly, doesn’t have a bit of bleedingheartedness about it.

Rather than see yourself as selfish for having medical problems, my second tip is to use them to your advantage to get back at those you dislike. Case in point. A secretary at my daughter’s school had been impolite to me on the phone the week before. I went to pick up my daughter from school one day and this obnoxious secretary told me that my daughter was at the playground half a mile or so outside and I would have to go fetch her. I looked at her and smiled kindly, “I’m sorry, I am disabled after recent heart surgery and not able to walk that far.” She looked troubled at the word disabled (you know, all those ADA rules etc. have school personnel skiddish) and scurried down to the playground while I plopped myself in a chair and read a magazine in the air conditioned office until she came back with my child, apologizing for taking so long. You see, medical problems are not all bad.

: And it so happens, I’m slowed down again — not by afib this time but my clumsiness, with indirect afib complications.

Leaving a meeting with a colleague yesterday, I wasn’t looking where I was going and tripped going down a curb, falling face-first on the street. My left knee and right wrist took the brunt of it. Nothing broken, save pride. I rubbed the knee in the cab on the way to the airport and over a bad pizza there, I felt something growing on my knee that was almost twice the size of my kneecap. Because I’m on blood thinner due to my afib, my wack to the kneed caused a hematoma to well up and bruise into something pretty unattractive. Nice Continental employees in the lounge and the plane kept filling a bag with ice for me and I was damned glad I’d spent the extra money (my money, not the company’s) to buy biz class and we had larger-than-usual international seats that let me continue to ice the thing all the way home.

Just got back from the doctor and I’m ace-bandaged up and hobbling on a knee that won’t bend. He said I should use a cane.

: Which leads me back to Dr. Helen’s advice. Hmmmm. Well, if I did get that cane and walked with it the way Dr. House does on my wife’s favorite series, maybe she’ll think I’m just as brilliant and fascinating as he is….

: LATER: Bad link to Dr. Helen’s post now fixed.

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.

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.

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.

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….

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.

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.

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).