Posts about afib

For the diseased

I cannot possibly do better than Zeynep Tufekci in taking two journalists — New York Times columnist and former executive editor Bill Keller and his wife, Guardian writer Emma Keller — to school in a brilliant post that explains how each exploited and offended, misinterpreted and mistreated a mother who they think is doing too much and saying too much about her cancer. Please, please go read that now.

I will address only one matter myself: blogging and tweeting — or as we used to say, talking about — disease.

I will readily tell you about my prostate cancer and consequently malfunctioning penis, about my thyroid cancer, about the atrial fibrillation that came after I sucked in the dust of destruction at the World Trade Center, and while I’m at it, I might as well add a note about my bursitis.

I don’t do this because I am a hypochondriac or want an ounce of sympathy — I deserve none as I have had cancer lite, with no chemo, no radiation, only momentary pain or inconvenience, and most importantly, no mortal threat. I don’t do this to take part in what my elderly parents living in a community of elderly friends call “the organ recital.”

I do this because I gain support and information and because I can give others support and information. I do this because I believe we must talk about about sickness, openly and honestly, to rob it of its stigma, to pool what we know about it, to teach people about it, to influence policy about it.

And why shouldn’t we? It’s just disease. It happens to all of us, except those who come to violent ends. Imagine a world in which there is no stigma about illness, in which ailments are not a matter of privacy or lost insurance or jobs, in which we collectively share and learn as much as we can about what afflicts us so it can afflict fewer. It’s just data.

So I am astounded that two journalists who should support transparency as a virtue come to question the ethics of Lisa Adams for talking about her disease. It is her disease. It is her motives that matter, generously trying to educate people about her treatment. How dare a journalist of all people try to tell someone what she cannot say? How could a journalist seek less information in the world?

When I blogged about my prostate cancer, one and only one guy — who didn’t like me anyway — similarly complained that I was saying too much. He accused me of oversharing. I said the problem is not that. It’s that he was overlistening.

If Emma Keller doesn’t want to read about Lisa Adams’ cancer, then she shouldn’t read it. If Bill Keller thinks Adams should not treat her cancer and her pain, well, he should mind his own business.

But if they do want to act as journalists in this new age, then they must follow Tufekci’s advice and learn that when they read someone’s words, they are not interacting with media, they are interacting with a person. It so happens the person they were writing about is brave and generous. They were not.

And we all should be welcoming the opportunity to hear more voices, learn more perspectives, gain more information. And we should all be wishing Lisa Adams our best for what she is going through and what she is offering us.

Calling Dr. Google

I should have listened to Dr. Google. I woke up Sunday morning with the dregs of a cold so I went back to sleep. An hour later, I woke up with a new pain on my right side about an inch down and three inches over from the navel. Given who I am — chronic hypochondriac and a certified Google fan boy — I searched Google for appendicitis.

By reputation, Google — and the internet — should have returned bogus, dangerous, uninformed, unauthoritative advice from cults, and witch doctors, and Demand Media. But it didn’t. It gave me the NIH, WedMD, the Mayo Clinic, (yes) Wikipedia, and other good and trustworthy sources. It gave me more than enough good information to check and cross-check and then diagnose my new pain correctly.

But I didn’t listen. First, I really am a hypochondriac. More than once, I’ve thought I had appendicitis, forgetting that it can’t occur on the left side. And even I am struck by the absurdity of my recent medical history, all documented here: atrial fibrillation, prostate cancer, thyroid cancer; surely, lightening is bored with me. I further had listened to those — including doctors and nurses — who pooh-pooh listening to Google. So I thought it prudent to wait and see whether this got worse, as I assumed appendicitis would, or turned into something else or nothing — in which case, I wouldn’t be embarrassed with a diagnosis by Dr. Google.

All day, the pain advanced. I repeat: This was a new, a unique pain to me. At 530pm, my wife and I went to a cocktail party at a friend’s house that I’d been looking forward to. Fifteen minutes and one sip in, I knew I was in the wrong place, ready to succumb to hot flashes and God knows what else. I went home and drove to the hospital.

I think I can pinpoint the exact moment my appendix burst: at 730pm when I was going through the process of insurance, an even greater pain swept through me. In the emergency room, I was given pain medication, thank goodness, and tests, including, at some length, a CT scan. The scan eventually came back saying that I not only had a bloated appendix but also that it was “perforated.” Now if they were sure the appendix had burst, the normal course, I was told, would have been to send me home with IV antibiotics for two weeks to clean up the sure infection that was just starting in my gut; then I’d return and they’d deal with it.

Luckily, very luckily, I had a hot dog doc who doubted the extent of the oozage, given the freshness of my pain that morning, and so he decided to operate. At 2am, he started. He did, indeed find gunk in my belly and had to spend extra time flushing and vacuuming it up through three small holes in my belly — one in the navel — for his arthroscopic instruments (two fewer than were needed for my robotic prostate operation). I was minus yet another body part — I need some more spares! — and lucky for it. Tuesday afternoon, after much IV antibiotics and pain meds, I went home.

Now here’s the moral to the story: If I had gone straight to the emergency room at 10 that morning or anytime that afternoon, I’ll bet my appendix wouldn’t have burst and I would not have had the extra risk and trauma and uncertainty.

I should have listened to Dr. Google. All the good Doc did was send me to good docs — not junk sources; note well that it’s in Google’s interest to give us quality and that is why its search algorithm has been changing for our benefit (there is no such thing as neutral search and I don’t want it if anyone ever invents it). It gave me the information I needed to make an important decision and tell the doctors what they needed to know to make a diagnosis.

I — of all people — should not have doubted Dr. Google’s healing power. Sorry, Doc.

The small c and me

I have cancer, prostate cancer.

When the doctor told me, he said that if you’re going to get it, this is the one to get. It made feel as if I’d just gotten an upgrade on Cancer Air. It was caught very early, found in only 5 percent of one of 12 samples gathered by shooting a harpoon gun into me (where, you don’t want to know). So I am lucky.

I’m reminded of a brainstorming session I went to with Tony Hendra, the comedy writer, toward the end of the ’80s, when he was leading the collaborative writing of a book called The ’90s: A Look Back. I was invited to a session where we speculated about the near future of medicine and Tony riffed about what it would be like once they found a pill to care cancer. “Got a spot of cancer today?” he said, copyrighting. “No problem. Take Tumorout. You’ll feel as good as new. Go ahead. Light up that cigarette. Won’t hurt a bit.” I was disappointed that his cancer gag didn’t make it into the book. I’m also disappointed that they didn’t invent Tumorout.

Why am I even telling you about this? As I wrote in What Would Google Do?, I gained tremendous benefit sharing another ailment – heart arrhythmia – here on my blog. And so I have no doubt that by sharing this, I will get useful advice and warm support (and maybe a few weeks’ respite from trolls). I argue for the benefits of the public life. So I’d better live it.

I also hope to be one more guy to convince you men to get get your PSA checked: a small mitzvah in return for my luck. And when we talk about the cost of screening in the health-care debate, I’ll stand up to say that when you’re the 1-in-100, screening is worth it.

I’ve always been a cancerphobe; can’t imagine much worse than that creeping invasion. Yet I’ve surprised myself, staying calm in the face of realizing my fears, probably because I know it could be worse and, well, it is what it is. I’ve been using this amazing internet to do research and, with my wife’s help and counsel, make the complicated decision on a course of treatment.

Before doing my research, I’d assumed that the treatment Rudy Giuliani made famous – radioactive seeds – would be the way to go: simple, and if it doesn’t work, I thought, then I could resort to surgery. But it turns out that once you get zapped, it becomes very tricky to perform surgery. At my age – young, damnit – the wiser course is surgery, cutting out the prostate and, one hopes, all the disease with it.

I’m opting for robotic surgery – geek that I am, how could I not? My only fear is that they’ll wheel me into the O.R. and I’ll see that the machine is powered by Dell.

I’ve also chosen Sloan Kettering and Dr. Raul Parra to do the surgery. There’s one of the privileges of living in New York, among the best.

I’ll keep you informed as I find notes of interest while progressing toward surgery in mid-September and through recovery. Fear not, I’m not going to turn this into a disease journal: I don’t expect you to be consumed with my problems when others have theirs, far worse. Or perhaps you should fear, for instead, I will keep on writing about media wonkishness: about the rise of the next media and the fall of the last. Except now, I’ll be in a worse mood.

In control of health

After I wrote the chapter in my book on Googlified insurance — thanks to the wisdom of the crowd in the comments here — I tried out the ideas on a couple of insurance executives. “You may be mad,” one of them emailed later, “but you had some good ideas.” Actually, my readers did.

I proposed a scenario in which the community of the insured gained responsibility for its own health, which would require insurance and medical companies to hand over control to them, to be fully transparent with data and information, and to provide services the community could use to improve its health and reduce its own costs.

Let me play out two implications of this with my own health situation. First, a case of cutting costs:

Because of my afib, I have to take Coumadin, a blood thinner. I am required to go to the medical group every 2-4 weeks for them to prick my finger and make sure the dosage is OK. In some people, it can be variable and volatile. Not in me. I’ve been on the same dosage with the same effect since I started. But they keep bugging me to come in. They yell at me.

When I get there, I’m offended at the waste of money. There’s a nurse who sits at a computer and judges my results and then types and types and prints out a sheet. There’s an assistant who does nothing but prick my finger and then marks up that printout. It takes them two people to do what my diabetic mother does many times a day on her own. They charge me a $20 copay each time I do this. I shudder to think what they charge the insurance company. It’s like watching a government bureaucracy in white coats.

My point: If my interests and those of my community and insurance company were aligned, I would put up a fuss and whistleblow this boondoggle. If I knew it could have an impact on my costs, I’d report this to the insurance company. If I knew my community had the power to do something about it, I’d tell my tale in a community forum and gather critical mass around imposing efficiency.

But my interests are not aligned with the insurance company’s. They are out to screw me. They think I’m out to screw them. The doctors who are screwing us think we’re all screwing them.

By the insurance company holding onto the power in this relationship, it screws itself. We have no interest in helping them. If, instead, they enabled the community and each of its members to take control of health and costs, if they acted as a true service to the community’s and its members’ needs, then they all would benefit — except perhaps for the unnecessary and now jobless assistant and the doctors who can no longer skim a profit on this scam.

Second example: I’m tussling with my cardiologist about the dosage of the drug I take that stops my fibrillation (the poetically named Rythmol). I’m on a high dosage but it’s working well (knock wood). The doctor says he wants me on a lower dosage, but the last time I tried I nearly went into afib and had too many palpitations (and I couldn’t concentrate under the pressure to get my book written). The risk of the drug is that even as it stops afib, it can cause afib. The risk of not taking the high dosage is that I can go into afib — and the more you get afib, the more afib you’re going to get. The risk, either way, is getting more cumulative bouts of afib. I’ve already had enough to make me a life-insurance risk, which is to say that the condition was not sufficiently managed early on when I got it (after 9/11/2001) and before I went on Rythmol.

[Note, as an aside, that my life insurance company is screwing me for a condition that I got from 9/11 and it's a company run by and for military people. I wonder how they treat Iraq veterans. More on that another day.]

There’s a health decision to be made here. It’s about balancing risks. The only way to make that decision is to look at as much clinical data as is available and judge that against the comparative risks and against my personal experience. The doctor will come to a conclusion based on his education and reading and a few minutes’ consideration in my case.

But the decision is properly mine. My health should be under my control. It is ultimately my responsibility. But the system is not set up for me to make that decision. It is not set up to inform me or give me control.

At Davos last year, I sat at a table with a bunch of doctors who complained about their patients going to the internet to get what they said was misinformation. They didn’t want the internet to get in the way. They wanted to remain in control. I told them they were looking at this the wrong way. Instead, I said, they should point their patients to what they though were the best resources.

Doctors, I said, should act as curators of information for patients. That’s not what doctors do. They don’t have the means or, they’d argue, the time. Insurance companies offer some information to patients, but it’s lite and not too valuable. (Did you know you should eat less? Not smoke? Exercise? No, really?)

If insurance companies and doctors tried to empower patients and their communities to take control of their health and the costs surrounding them, if they gave us information about both the medicine and the business of it, they might succeed. Right now, no one does.

Really public health

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.

Starblocks

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.

Lub-dub Lub-dub

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.

Afib chronicles

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