Posts about afib

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.

The Afib Chronicle

Since I’m boring you with my afib chronicles, I should give you an update: I’m still in fibrillation but feeling much better thanks to being on a beta blocker, Toprol, which slows my heart rate and makes stairs once again no big deal.

I fired my cardiologist at the start of this episode. I’d had a great doctor — let’s call him Doc A — who, sadly, left practice to take a corporate job — some of the greatest talents in medicine can’t take the hassle, tragically — and ended up with this doctor — let’s call him Doc B — whom I didn’t much like. He wouldn’t consult directly with me; I think he should have zapped me immediately but by waiting past a magical 48 hour mark I had to endure an expensive and failed procedure and now I’m stuck in afib and on various unfortunate drugs for a month with a greater risk of clots and strokes; he took me off Toprol though Doc A had said I should take it as needed and he did so without explanation; when I tried to get a second opinion, he came and confronted me, which didn’t do wonders for my heart rate. I’m now with another doctor — Doc C — and he has been great because he not only explains and consults with me but he put me back on Toprol, which has ended my tachycardia (rapid heart beat). I lost a week’s work on the couch because of the debilitating effect of that tachycardia, but now I can move around and it’s a great relief.

I think I may just rate these doctors.

Because the risk of afib is blood clots, I’m now on blood thinner and have to go to the doctors’ offices to get my blood checked often. Before the procedure I had the other day, I didn’t have enough of the stuff in my blood; now I have too much. They told me not to take the pill last night and ordered me to eat broccoli, kale, or spinach to counteract the drug. I said I was going to a business dinner with one menu and had no idea what they’d be serving. I got a stern look from the nurse: Eat your kale, young man. Well, it so happens that the veggie last night was broccoli. I hate broccoli. But I was a good boy. Now I’m going back to the doc’s to get pricked again.

Now I may complain about a particular doctor or the inconvenience of some treatment, but let me make clear that I’m grateful to live in an age of miracles and knowledge, when these things can be treated. So I don’t want to seem ungrateful wishing that the counteracting agent to that drug were beer.

Drat

Well, the Frankenstein procedure didn’t work. I’m not suggesting that anybody should care about the details of this and I feel rather like an old folk in the home telling you the details of my complaints, but I said I’d chronicle this: After putting me out and putting a sonogram wand down my gullet, they found that I may have a clot and so they did not zap me because they don’t want that clot freed up by a newly efficient heart, doing mischief in the bloodstream. So I stay on anticlotting drugs for a month (no football for me) and then they will zap me again. That’s the long and the short of it. I’m fine, just still pissed.

Pushing transparency

I’m operating a half-throttle because the ol’ distributor cap is still acting up. Not that anyone should care — and some may say this is too much transparency, but, hey, it’s a blog. And I’ve received such wonderful wishes and suggestions from so many of you. So here’s the latest on my fibrillation saga: I’m alternating between fibrillation (arythmia) and tachycardia (fast heart rate), which makes stairs sisyphusian. But otherwise this is nothing but an inconvenience; certainly, there are countless worse afflictions. I’m on blood thinners (gaining new respect for diabetics with needles) so that Wednesday, they can shove a tube down my throat (to make sure I don’t have blood clots) and then zap me (CLEAR!) with DC voltage (I can imagine a few who’d want to pull that switch!). I’ll come out with two shaved, sunburned spots on the chest and, ConEd willing, restored rhythm. I’ll give you the update.

My cheatin’ heart

I’ve mentioned before that I sometimes get atrial fibrillation — irregular heart rhythm — and it has struck again, lasting longer this time than usual. As I write this, a convention of Mexican jumping beans is staging a revolt somewhere south of my sternum. I had to give a big presentation last night and otherwise function as a normal person in the last 48 hours with this going on inside. It’s quite possible to do so, just weird.

I got the condition in a chain of events from 9/11: I got pneumonia from inhaling the cloud of destruction at the World Trade Center and when doctors tested my lungs, they spritzed something in there that unleashed my until-then-blocked betas. Every time it has struck, the doctors have given me different rules and treatment. This time, I’m giving myself shots in my stomach: Yes, I am rabid. And other fun awaits.

But here’s the strange part: Four out of the last seven or so times I’ve commuted through the PATH station at the World Trade Center, my heart has gone wacky. Three of those times, it calmed down and returned to normal rhythm within five minutes or so. This last time, it hasn’t calmed down. I can’t figure out what the connection to the WTC is. No, it’s not post-traumatic stress disorder; I’ve been commuting through that station without incident or upset since they reopened it. I almost wonder whether the construction they’ve begun has unleashed some odd chemical, but I doubt that. It’s just wacky.

Anyway, this — and work — is why you’ve seen a relative paucity of posting in recent days. I’m working at home today, so you’ll be stuck hearing more from me later.