Well, today makes it six weeks since Shawn’s surgery. It barely seems possible– the time has been both brief and endless. All of his restrictions regarding lifting heavy things, driving, and standing up in a normal fashion are suddenly gone. Hurray!

Shawn mentioned a while ago that I would follow his post about his average day with something more factual about what actually happens to his time. This is kind of an impossible task, since I’m usually at work all day and have no idea of what he’s actually doing. I call him sometimes at midday, but it’s a single data point and has no explanatory power over the long term.

I suspect that a lot of his time disappears into that series of tubes we like to call the Internets. He’s not into porn, gossip, or pictures of cute animals, so that “largest collection of human knowledge” is actually smaller than we think. He reads the news, which has lately been rather depressing (war, climate change, various constitutional crises). Television is mildly unattractive to him, so that’s not filling his time. Mostly, he walks. He’s been walking to Golden Gate Park a lot, exploring it at a level of detail that only foot traffic allows, and reporting back all of the neat new finds. Old-fashioned carousel? Check. Drum circles at Sharon Meadow? Check. And so on.

A few years ago, I was out of work for some months, and I suddenly had enormous amounts of free time. It’s a shock to the system. I mean, sure, you look for work, but what do you do with the other 14 hours each day? I saw a lot of my time evaporate into the computer (I like cute animals and some gossip), and there was always that great glass eye, television. I managed to catch up on five seasons of Buffy the Vampire Slayer (thank you, FX channel), and I learned about emergency veterinary procedures from Animal Planet. Never got into the Oprah thing, though, nor the various fake courtrooms and chair-throwing shows. I had my limits. At that point, it was necessary to leave the house and find a cafe in which to read. And surf the web.

The one thing I did manage to do, besides come up with a half-baked plan for the next phase of my life, was learn to cook. I literally had all day (minus job hunting and veterinary/vampire-slayer stories) to plan, shop for, and make a meal. A really involved meal, in which new techniques were mastered. I spent hours at it, and became pretty comfortable in the kitchen.

Shawn has expressed some interest in cooking. Now that he can lift things, it’s more of a possibility– frankly, some of our pots and pans weigh more than five pounds even when empty. Or he’ll come up with other ways to fill his time. It’s interesting (to me, at least) how our roles have changed, one staying at home and the other out in the world doing something with a schedule and expectations to fulfill. I’ve seen it from both sides, and it’s difficult for both, I think– to have either a dearth or abundance of time can be problematic.

Happy six weeks, all.

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Data’s Day

March 27, 2007

Back in the distant past, before most of you were even born, there was a popular TV show entitled Star Trek: The Next Generation. I won’t even attempt to summarize the show’s premise for you, as it would require a detailed explanation of the latter twentieth century, and we all know that was like a century ago. Suffice it to say that one of the main characters, Data, was a white-skinned android with disturbingly glossy hair and a fascination about human behavior. In one memorable episode, “Data’s Day,” we follow Data through a single, complete day, seeing the life of the starship (did I mention there was a starship?) through his emotionless eyes. I’m sure there is a crisis, too, because there always is, and I’m equally sure it’s resolved by dinnertime (not that Data needed to eat).

The only reason I bring this up is because I’ve gotten some questions about how my recovery is going, and I realized I haven’t addressed that in the blog recently. Oh, and also, the title “Shawn’s Day” seemed less than compelling.

I’ve been home for nearly a month now (it’s been almost five weeks since my surgery), and I admit I’ve acclimated to having nothing much to do. I generally get out of bed around 9:30-10:00am, groaning about the unfairness of it all. Once past the self-pity phase, I usually eat breakfast and surf the web for a while, wondering how I could become so quickly bored by the largest collection of knowledge in human history. I then often take my existential angst outside, where I engage in the first of my two daily walks. I love walking, and I really love walking around San Francisco. But after dozens of walks around my neighborhood, I’ve come to realize that I hate walking, and I really hate walking around San Francisco. I can pass our local gourmet restaurants, world-famous bakeries, and gorgeous, sunlit parks only so many times before wishing desperately for something else to look at. Like maybe an urban wasteland of gutted apartment buildings and stray dogs.

After that I return home and, if the cat hasn’t already claimed it, sprawl on the couch for an hour or so of intensive wall-staring. This is followed by some reading, or possibly more web surfing, until I realize that it’s getting late and I need to take my second walk. By this point Debbie has often returned from work, and she pokes at me with kitchen utensils (blunt only) until I leave the house and point myself in a random direction. If I’m lucky she will have sent me not just on a walk but on a mission, perhaps to the store to buy some dinner ingredients. This external motivation does wonders for me, and I tromp off to acquire one can of kidney beans and a lime with the calm bravery of a nineteenth century polar explorer.

Some days I mix up my schedule by ending a walk at one of our many local cafes. This morning, for example, I walked around the Mission District and then deposited myself at Katz Bagels, the best local bagel joint. After having a delicious “everything” bagel with egg and cheese, I spent about an hour reading a cast-off newspaper. Then, noticing it was basically lunch time, I returned to the counter and ordered a slice of Katz’s delicious veggie pizza. I’m not sure how many people eat both breakfast and lunch at Katz in one uninterrupted session, but the wait staff looked at me only a tiny bit strangely. Maybe next time I’ll throw away all decorum and stay for three meals.

The evenings are filled with more incredible sitting. Then follows a shower, in which I am confronted by a long, mysterious vertical scar running down my chest. I stare at it for a while, shrug my shoulders, and go off to eat one of Debbie’s delicious dinners. We trade stories of our day, and I always drone on for what seems like forever. Eventually I find my way to bed, where I’ll spend the next nine to ten hours resting up for my big day tomorrow.

[Editor’s note: we apologize for the subtle sarcasm imbuing this post. Debbie claims to be planning a follow-up essay that provides, shall we say, actual facts.]

[Editor’s note 2: for those of you who spend most of your day at, well, actual jobs, we also apologize.]

A fib

March 27, 2007

I promise this isn’t a lie. “A-fib” is docto-hospito-speak for “atrial fibrillation.” This is a condition in which the atria (the smaller, upper chambers of the heart) don’t contract in sync with the ventricles. Instead of firing in a smooth, choreographed sequence, in a-fib the atria trigger in a seemingly random, disorganized pattern. The result is decreased blood-moving efficiency. And because blood tends to “pool” in the atria, there is a risk of blood clot formation.

A-fib, it turns out, is a relatively common side-effect of open-heart surgery. A couple of days after my surgery one of my nurses came in to inform me that I was currently in a-fib. How did she know? During my hospital stay I was attached via chest electrodes to a small transmitter, which I lugged around with me like a cell phone from 1985. This transmitter fed heart rhythm signals to a centralized monitor in the nurses’ station. I was wirelessly beaming my EKG out to the world (or at least to the ward) every moment of the day.

I had two episodes of a-fib while in the hospital. Both were treated with IV amiodarone, which is a powerful and mysterious drug used to relax and regulate the heartbeat. In both cases the amiodarone did its job, shunting me back into “sinus” (normal) rhythm after a short while. The oddest thing was that I didn’t feel any different during either episode. My doctors inform me that most people notice when they’re in a-fib, because your heart and heartbeat feel different. Maybe I’m acclimated to odd, random palpitations (I get them occasionally), or maybe I was just distracted at the time.

Since I’ve been home, I’ve been taking amiodarone in tablet form. By the time I’m done I’ll have taken the drug for six weeks, halving the dosage every two weeks. Although I’m grateful such a powerful and useful medication exists, I’m looking forward to being done with it, primarily because I’ve experienced a couple of minor but annoying side-effects: 1) My sense of taste is slightly tweaked. I’m especially sensitive to sweet, which makes my normal habit of consuming large quantities of Debbie’s baked goodies somewhat problematic. 2) I’m salivating. A lot. All the time. Ick.

Amiodarone also contains a lot of iodine, which in some cases can wreak havoc with the proper functioning of the thyroid gland. After telling me this in the hospital, my cardiologist looked concerned for a moment, paused, and then added brightly, “But since you don’t have a thyroid gland, you’ve got nothing to worry about!” (For those who don’t know, I was diagnosed with thyroid cancer a few years ago. I had my thyroid removed, was treated briefly with radioactive iodine to kill any remaining malignant thyroid cells, and have been fine since.)

My cardiologist has a twisted sense of humor.

I hope I don’t gross anyone out by saying this, but nearly three weeks after my surgery I am still finding little patches of tape adhesive stuck to my body.

It’s not that surprising, I guess, considering that I had lots of things taped to me in the hospital: IVs, the central line (an IV in the neck), bandages, whatever. What does surprise me is the tenacity of this stuff.

Daily showers make no difference whatsoever. To remove the adhesive, you must hunt down each patch and determinedly rub it off. If you miss a spot, it patiently waits for another day.

When I was a kid, I was fascinated by Super Glue for two reasons. First of course was their old commercial in which a construction worker flailed his limbs in the air, hanging from his hardhat which had been Super Glued to a girder (now that I think about it, hanging from your hat sounds awfully uncomfortable). The other reason was the cautious but slightly boastful warning that appeared on the tiny tube: “Bonds skin instantly.” Holy crap! What did you do if your skin was instantly bonded? My kid mind reeled.

The answer lies in what I have recently concluded is the commercial brilliance of the glue industry: there was some mysterious substance for sale which counteracted and loosened the impossibly-strong grip of Super Glue. The Anti-Super Glue. The Kryptonite to Superman’s Super Glue.

Similarly, there are weapons against the skin adhesive that haunts me. Rubbing alcohol does okay, but the hospital sent me home with a few packets of moistened wipes that are designed specifically to remove adhesive from skin. Smelling of citrus, they did their job, but only combined with a lot of manual labor.

In James Bond, Pink Panther and Tom Cruise movies, the villain’s evil plan often boils down to this: they will unleash a Deadly Something on society (disease, chemical weapon, ennui), and then, after proving their power, they will produce the Antidote and make billions of dollars. I’ve come to realize that the glue industry does exactly the same thing. They bond our fingers together in painful pairings, or they leave uncountable, hidden patches of sticky adhesive residue on our skin, and then they sell us some other product which undoes it all. It’s the pinnacle of brilliant marketing: mass consumerized blackmail. Big Glue, I salute you.

Standard(s) of care

March 9, 2007

After open-heart surgery, what kind of follow-up would you expect after leaving the hospital? What level of instruction and support would you expect to receive?

Stanford, not surprisingly, has this perfected. Not only was I sent home with a bulging folder full of papers, but I received a copy of Stanford’s nicely-produced booklet, After Your Heart Surgery. This fatter sibling to the ever-popular Before Your Heart Surgery (which I’d read several months ahead of the event) is full of well-written, expertly organized and helpful information, not to mention some really good illustrations. It contains nearly everything I needed to know to start my recovery. This booklet alone might have been sufficient, but they didn’t stop there. Before I was released from the hospital I had spoken to a long procession of doctors, nurses, PAs, nutritionists and physical therapists who basically covered all the key parts of the booklet verbally. One of these helpful professionals even took the time to go through After Your Heart Surgery and highlight in yellow everything I should pay special attention to. Jeepers.

Okay, but this is Stanford, after all. We’d expect nothing less of them. What about other hospitals, too numerous to count, that also do heart surgery in this country? Do they have their own After Your Heart Surgery bestsellers?

One clue bubbled up a day or so after I returned home. The phone rang and the caller announced herself as Susan, a nurse working for Aetna (my health insurance company). Would I be willing to speak to her for a few minutes?

Being a skeptical and perhaps slightly paranoid fellow, I immediate jumped to the most extreme conclusion: Aetna must be checking up on me to confirm that I actually went though the surgery they’re being charged for. After all, we’re talking about a lot of money.

A few minutes on the phone with Susan, however, changed my mind. Yes, Susan’s job is to help Aetna check up on every heart surgery patient once they return home. But the reason is not because they doubt the procedure took place. They’re calling because they’ve noticed that some hospitals’ post-surgery care sucks.

Susan and I spoke for about 35 minutes, during which she carefully went through just about every major area covered by Stanford: caring for the wound, avoiding stress on the sternum, my walking program, my breathing exercises, which drugs I’m on. It was a bit tedious for me, seeing as I had covered these topics with the hospital staff and had just read over the written instructions. But Susan was careful and patient and needed to cover a rather long list of items, so I decided to forebear. Partway into the call, I asked her something about Aetna’s decision to start this program, and I wondered aloud that they must see it as a net cost savings.

“Oh yes,” said Susan. “Stanford is of course a world-class center, but you wouldn’t believe some hospitals. I’ve spoken to heart surgery patients who received no written instructions whatsoever.”

No written instructions? At all? After open heart surgery?

Maybe this comes as no surprise to anyone. Maybe I shouldn’t be shocked. But when a health insurance company decides it’s in their interest to assign an RN to every single heart surgery patient, I’m forced to conclude that something is very wrong. Yes, the U.S. has top-notch health care. Except. Except that statement is followed by about 15 different asterisks, and the fine print runs on for pages. Aetna (and presumably other health insurers) are doing the right thing to fill in the most egregious gaps. But let’s face it: the house still appears to have termites.

Susan said she’s follow-up with me in about a week. She’s a day or two late, and my hope is that she realized her time is better spent with other patients. I won’t be dismayed to speak to her again, but in the back of my mind I’ll be thinking about the others who need Susan a great deal more than myself.

Instant old

March 6, 2007

After coming home from the hospital and spending a few days with my recovery schedule, a somewhat unexpected thought entered my mind: “Oh. This is what it’s like being old.”

I don’t intend to lump the elderly into a stereotype; after all, there are clearly lots of different ways to grow old. But ticking off my primary complaints from the first few days home does add up to something that reminds me of the elderly:

  • Water retention. Debbie has already written about the swelling in my feet, ankles and calves. Believe it or not, this was what bothered me the most for the first few days home. This is probably because a) I don’t have much experience with it, and b) I hadn’t really spent much energy anticipating it before the surgery. It’s definitely an unpleasant sensation to gain that much weight more or less instantly (I gained at least 15 pounds after the surgery, and possibly more), and it’s odd to feel like you have big thick elephant legs as you walk around. I now have more empathy for women and their monthly water retention issues, as well as anyone who’s ever bought a big fat Lay-Z-Boy recliner. Ah, putting the legs up! Bliss!
  • Slow, deliberate movement. As a relatively young person, I’m used to being able to move without expending much conscious thought. If I need to hop down the street to run an errand, I just do it. My body follows the goals of my mind. Since my surgery, this is no longer the case. Now just about every movement is proceeded with a little mental plan: “Hook the ankles under the bedframe to lever myself out of bed.” “Don’t tug too hard on the refrigerator door.” “Take the stairs one at a time.” It takes a lot of energy to plan your movements this way.
  • Weakness. Not much surprise here – I expected to have to rebuild my strength, and that’s exactly what’s required. The biggest component of that rebuilding is the walking program. After getting home last week, I started walking four times a day. Sounds great, right? Except that the first day I could manage (and was expected to do) only five minutes at a time. For someone who’s used to rambling all over the city at a brisk pace, getting winded after five minutes is a humbling experience.

It’s easier to consider these challenges now that I’ve been home almost a week and have seen improvement in each area. Water retention is now effectively gone, I’m getting good at doing everyday stuff without straining my chest, and I’m feeling stronger. Today I’ll have done three walks of eleven minutes each.

Undoubtedly the memory of these experiences will fade over time, as I continue to improve. But I don’t think I’ll ever look at an old person walking slowly down the sidewalk in quite the same way again.

NaCl + H2O

March 4, 2007

Well, Shawn’s pill box tells me that it’s Sunday morning, so I thought I’d update this blog. Shawn is doing well: temperature is normal, blood pressure and pulse in a normal range, and he’s been losing his extra water weight (we had to purchase a bathroom scale to find this out). Why the extra water? Read on.

During and after the surgery, the medical staff needs to administer meds, usually in IV form. Lots of extra water, then. The heart is beating less strongly than usual, which means that this extra doesn’t really get circulated in the bloodstream and removed, but remains in the body. The good news is that Shawn is now almost back to normal weight and his feet and ankles are much less puffy (for lack of a better term) than when he first arrived home.

Toward this end, we’ve also been eschewing salt, at least for the time being, since excess sodium tends to cause water retention. Well, to be completely honest, I’ve been cooking with less salt, giving the meal to Shawn, then salting my portion while he’s not looking.  (Okay, he knows I’m doing it)  I look forward to the day when I can once again use it in the entire cooking process, rather than just at the end.  It really does make a difference in the final dish, let me tell you. I love salt.

We actually received a bit of conflicting information on this topic in the hospital. The dietician for the entire cardiac care unit came to speak with us about the importance of maintaining a low-sodium diet for the forseeable future. This is really not a huge issue for us, since we don’t eat much in the way of processed foods, and our idea of fast food is a burrito from the local taqueria, but it was something to consider. I figured I could always eat some corn chips and pretzels to make up for my perceived deficit (chips and pretzels are really just a salt delivery system– if I could just lick the salt off and throw away the rest, I would probably do so). But then someone from the aortic root department came in and said that we don’t really need to worry about sodium as long as we’re reasonable, i.e. don’t eat at McDonald’s every day and avoid licking the salt off of the pretzels. See, the regular dietician talks to all heart patients, not just aortic root replacers, and most of the people on that ward have actual heart disease. In their cases, low sodium (LS) is essential, because they really will retain the water. Aortic root replacement is not the same as heart disease (are you listening, future insurers?), and therefore we really only need to use good common sense w/r/t the sodium rules. Her exact advice was, if it tastes good, eat it– better to have the energy reserves while healing from major surgery. Then she told a story about one of their aortic root patients who took the LS advice very seriously. Apparently, he arrived at one of his checkup appointments quite emaciated, since unsalted food did not appeal to him. We’re not having any of that here.

So Shawn is eating well, and I’m following the spirit of the LS law until it no longer seems necessary. He’s lost over ten pounds of (one assumes) water in the last few days, and our goal is to avoid a prescription of diuretics at tomorrow’s follow-up appointment at Stanford. Anything to avoid that additional pill or two during the day. His ankles look great.

Shawn’s day is surprisingly busy. When you are easily tired out, the schedule of four walks per day, four sets of breathing exercises, three meals, multiple medicaments, and enforced naps really fills up the time. His walks are getting longer (1-2 min. per day longer), his lung capacity is increasing, and, in general, he’s feeling pretty good. He’s experiencing enough daily progress to be able to feel positive and content.

He will probably post something within the next day or two, but I thought I’d throw this up for now.