Display by Label: Heart

It's pretty much universally accepted that knowledge is power. But I'm here to tell you that's not always true. Knowledge can also leave you a quivering mass of gelatin on the hardwood of your dining room. And while jello is not completely devoid of nutritional worth (wait, maybe it is) "gelatinous" is indeed a pretty non-powerful state to be in. There's a very good reason I don't look up medical conditions on the Internet. I've learned that stewing over something in my imagination is much, much better than stewing over something in print on the screen in front of me. And what's even better than that is not stewing at all.

So maybe powerful isn't really the right word. But I understand what is meant by the expression. Knowledge allows you to take action. Otherwise, you're a sitting duck. And that's a bad thing to be.

I put the echocardiogram off for a little while. I considered not having it. Because even though, as I've said, I was sure things were fine, maybe I was just tad doubtful. The pounding I get from time to time. The recent chest pains. Probably stress. But still. Maybe I didn't want to know.

An echocardiogram is basically an ultrasound on the heart. The tech applies a slick gel on your chest and then rubs the cold end of what I believe is called a "transducer" — a sort of microphone-like device — all over you. It's all kind of kinky up until the point where you start hearing the loud, staticky-slushy beat of your heart coming from the machine next to you. It's an unsettling sound, your heart on an echocardiogram, healthy or not. I'm used to thinking of it as a thump, thump, not as a slosh-slish-slash-slush watery type of thing. But we're 78% water. So I guess I shouldn't be surprised.

Another thing that's unsettling is when the tech keeps pointing out that, "Yep there's your murmur alright and and what's up with that, anyway? Were you sickly as a kid?"

Well, not really, Ms. Tactful. But since you brought it up, I'm of course wondering what it is you know and why the hell you asked. Here, let me try one on you: Were you insensitive as an adult?

Test. Done. I went home.

My rheumatologist's office called at 7pm that evening to discuss the test. Not my Doc, but an intern. The caller ID said "Doc" and I was already interpreting the timing of the call as a bad sign before even picking it up. Good news can usually wait until the morning. Bad news, comes during dinner, in the middle of a great repeat of Scrubs. The intern talked about the results and used words like "aortic regurgitation" . . . blah, blah . . . "bicuspid valve" . . . blah, blah . . . "insufficiency" . . . blah, blah . . . "need to monitor this closely." She was going to refer me to a cardiologist and wanted me to go ahead and make an appointment soon. I scribbled what I could on the back of a piece of junk mail. I was trying to uncover the deeper meaning, here. It all seemed rather rational and cut and dry from the tone in her voice. But the meaning, woman. Come on, what are you trying to tell me?

So I did some fishing, trying to get her to gauge the seriousness of this thing she was referring to. But she just used some vague, equivocating language and said I should definitely get a cardiologist's input. I tried this one out: "I have a penchant for hypochondria, should I be concerned, you know, of dying anytime soon." Comfort me, dammit. Say something positive.

"Well, I'd say the fact that you're asymptomatic is good."

What the fuck? Do you not understand the meaning of the word "hypochondria?"

She was not damning, but definitely not comforting. I didn't even know what "asymptomatic" meant in this situation.

I hung up the phone, strangely calm. C was on the quiet car on an Acela back from Jersey, so I couldn't call her. And so I was standing there alone, letting it all sink in. And it didn't take long for my brain to draw the obvious conclusion of the conversation that had just transpired: I was going to die. Tonight.

Panic set in. I opened a Pale Ale. Then another. I called my dad. Because he can be rational under situations like this. And I needed rational. He picked up in Dallas. He was on his way to dinner. "Can I call you back?" he asked. I said yeah, but he could tell by the tone of my voice I didn't mean it. "What's wrong?" he said. There was some babbling and crap and finally I managed to utter the words, "Going . . . to . . . die." Then I clarified: "Sometime tonight, I think." Thankfully, my dad's business philosophy has always been to have several clients that are doctors. It's a good strategy, not just in business, but in life. Befriend doctors. It's a philosophy I've come to appreciate.

After about 10 minutes I got a call from my dad's Doc. By this point I was feeling the effects of downing that first beer. I'm not even sure, looking back, if I physically swallowed it. I think it just went straight down my throat to my stomach. My biggest question was: What the fuck is "regurgitation." Because I have a feeling it doesn't refer to the way I feel right now. He explained that it meant the valve wasn't closing all the way and blood was flowing back into the heart. He said there are varying degrees of it and he'd need to see the tests to know more. He said most of the time, the condition is just monitored. What they get concerned about is enlargement of the heart. Until that happens, the main strategy is to just wait and see. I might need to take action someday on it, but I might not. And there's no way of knowing when that could happen. The downside, is it most likely won't get any better, the upside is that it may not necessarily get a lot worse. The other upside was that it could be fixed if it needed to be, with a replacement valve. This made me feel a little better, though heart valve surgery has never been on my list of things to try in my life.

This past week I saw another doctor here in Baltimore. I call him "Doc Scales" because he liked making "The Scales Gesture" — you know, the one where you put both your hands out in front of you, palms facing the ceiling, and then shrug your shoulders. I asked him if there was any way of knowing whether or not surgery would be necessary. The response, not only to that question, but to just about all of them, was: "If you were to ask me will the valve last another year, I'd say: very probable. Another five years? Again, probably. Another ten? Scales Gesture. Another twenty or thirty? Scales Gesture." So I asked him if there was any argument to be made for a "preemptive" approach: replace that sucker now while I'm young and healthy. This, refreshingly, got a definitive "Absolutely not." Followed by head shaking. You want to wait as long as possible because the replacement valves don't last forever and chances are you'd need to replace it again in the future.

Okay, Doc Scales. I got it. Preemption is a bad idea.

I now know that the regurgitation is, in fact, "mild to moderate." There is no enlargement of the heart, which is good. And I got a glowing "A+" on the stress test. No irregularities, and it took me forever to get up to the desired 170-180 beats per minute, and by that point I was basically running on the treadmill. So the approach is as was expected: "Monitor it." Doc Scales prescribed blood pressure and cholesterol lowering medication, saying there was some evidence out there that it could help prolong the life of the valve, so I might try that. But I want to get a second opinion before I do. I'm already taking enough drugs for the elderly, I don't want to add two more unless it's really necessary.

And speaking of drugs for the elderly, the really good news in all of this, is that the Enbrel is working like a charm. I've been taking it, along with a smaller dose of daily anti-inflammatories, for a little over a month now and I'm feeling better than I've felt in probably a year. Mobility is good. I can actually do things like run up a flight of stairs or get into a car without wishing somebody would shoot me. The sciatica has subsided. Strength is back in my calf. The b-boy limp is gone (tragically). And I've gotten used to the injection thing. I put it in my leg, once a week. Easy.

So in the case of the AS, knowledge was good, I guess. But I'm still not sure if knowing about this heart thing is good or not. Sure now I can take some steps to "prolong" the life of the valve. But on the other hand, knowing about it is only going to lead to worry. Which leads to higher blood pressure and stress. Which is not good for said condition. So is that good? Is that powerful? Maybe with the swimming and the exercise and the eating relatively well I would have just lived a regular life not knowing about this thing and would have been fine. And maybe now I'll "think" myself into an early surgery, a premature date with a pig's valve.

Maybe. Scales Gesture.

One thing is for sure: I'm going to take steps to change the way I deal with stress. Now. Today.

And, yeah, I guess that's power.

link to this | comments (9) | File:  Heart  Health  AS 

More heart later. First there is this: Ankylosing Spondylitis. It's got some good alliteration, doesn't it? To pronounce it just do this: Say "ankle." That one's easy. Now say "closing" without the "C" — "osing." There you go. You've got it. Ankle-osing. Now, "spondil." Like music, isn't it? And the icing: "Itis," like Titus, without the "T". Spondil-itis. Put it together now. Ankylosing Spondylitis. Something with that kind of ring deserves a soundtrack.

It got bad this summer, the AS. And sometime in late August I learned what it could do, and that what had come before was just a warm-up. Here is some truth, brother: this little fucker has got a sadistic streak. And while that's normally something I can respect under the right set of circumstances, this isn't one of them.

The starch-free diet I tried back in January, didn't really do the trick. Not much of a difference in the symptoms. And it just led to other problems. Like constipation and bad breath. The former was no fun for me, and the ladder was no fun for . . . well, anybody really. (Let this be a warning to anybody who's thinking of dating somebody who might be on Atkins or South Beach or one of those diets. It makes you breathe fire. The bad kind of fire. Believe.) So I went back to carbs. I'm still cutting out the wheat and gluten, but that's a different story.

Sometime around our trip to Japan, inflammation became a daily thing. There stopped being good days and bad days. It was just all bad all the time. And on that trip, I invented a new hunched over waddling kind of gait, which I believe all the Japanese school girls are doing now. Because they're always on the cutting edge, you know. Of everything.

Then there were moves and home improvement projects. And a never-ending supply of shiny little anti-inflammatory meds. Like little white and yellow candies. And just as devoid of value: increasingly, that stuff did absolutely nothing for me.

I saw my rheumatologist in June. And by the way, this guy is great. Truly. Honestly. Great. C and I love him, and if you ever have the need to see a rheumatologist in the DC area — and I hope you don't — but if you do, I will be more than happy to give you this guy's name. Anyway, saw the Doc in June and told him things were not good. He gave me a soft pitch on Enbrel. (One of the things we like about this Doc, is he doesn't really force you in any one direction, which isn't to say he doesn't express his opinion. He's also incredibly patient and informative and he returns your phone calls personally!) Anyway, he said that while it didn't work for everybody, Enbrel would most likely drastically cut my symptoms. And he emphasized that we really needed to get the inflammation under control or it would lead to other problems, like heart or lung issues. Crap. This is an easy one, right? Take the Enbrel. But there was a downside. Two of them. First, Enbrel is a drug you have to inject and, I'm not a fan of sticking myself with a needle. I mean, I already make an exception for the heroin and, you know, I'm kind of running out of good locations to put the stuff. I know, problems, problems, right? Second, Enbrel works by blocking a natural substance produced by the immune system called TNF (Tumor Necrosis Factor). As I understand it, the body uses this stuff to fight infections and — what else was it again . . . oh yeah . . . cancer cells. Shit. The options were: more pain and increasing lack of mobility with a body chock-full of stuff that'll fight nasty viruses and cancers for me. Or a more normal daily existence where I can move around without wincing, but suppressing my body's Superman-like production of TNF, thereby increasing my risk for certain types of cancer. Of course, Doc maintained that cases of lymphoma being reported were "very, very rare" and he'd never actually known of one himself, personally. And I believed him. But somehow, when it's applied to me, I tend to read words like "rare" as "highly probable." And "never" as . . . well, just don't say that word . . . ever.

So I wasn't ready to do the Enbrel yet. But then August came and brought with it this big mobster of a flare-up. He was mean, too. He came complete with crushing fatigue and chest pains. And there was a healthy dose of sciatica that began radiating in the right leg, causing my calf to sort of stop working, and giving me a nice limp, which of course I just played off to the girls with a "there's nothin' wrong with my leg, I'm just B-boy limpin'" kind of nonchalance. If you believe nothing else, believe this: Beastie Boys is more than music; it's a way of life, ya'll. Shake. Your. Rump-a.

So I went back to the Doc in early September, well ahead of my next scheduled visit: "Enbrel, Doc. I want it. Now. Can you mainline this stuff?"

While I was there, Doc listened to my heart, as he always did. In the past he had heard things but used words like "benign" when he described them. But this time he really spent a long time listening. Then he said he thought he heard something he called an "insufficiency" and wanted me to go have an echocardiogram to check it out. My feeling was, yeah whatever. My heart is good, Doc. But okay. For you, I'll have the test.

Part three tomorrow.

link to this | comments (3) | File:  Heart  Health  AS 

Yesterday morning, around 10:30 am I was struggling under the lead weight of a caffeine-low headache. Sitting in the doctor's office waiting to have, of all things, a cardiac stress test. I had been instructed not to drink caffeine before-hand. And that was unfortunate. Because 10:30 am is no time of day to face head-on without at least two cups of strong coffee. And yet there I was. Floating low and heavy like a hangover, plotting the fastest route to Common Ground on the Avenue when I was done.

But the real question I was asking myself, right, was how did I end up being this person having a cardiac stress test? At age 33. Me — who swam twice a day, 6 days a week in junior high and high school. Who still exercises regularly today. Who's anal about what he eats. Who, okay, smoked on and off for several years. But who was always ridiculed by "real" smokers for my pack-a-week or for a while there pack-a-month habit. Bottom line: the heart should be strong. And I guess I've always kind of felt a little flip about it — a sort of "yeah, whatever" attitude — because I figured of all the organs in my body, it was sure to last the longest. You know, for all the above reasons. But apparently I have a murmur. An "aortic insufficiency," which was found on a recent echocardiogram (another test I'm surprised to have had), and which was probably brought on by the AS. Or it could also be because I have a bicuspid aortic valve. Most people's aortic valve is tricuspid. The bicuspid variety tends to become leaky. It tends to break sooner than one with three, um, cuspids. So they sometimes need to be replaced. Like Arnold Schwarzenegger's did about ten years ago.

And I'm really skirting the border of my comfort zone with this one. Honestly. Because with people dying of things that are difficult to imagine and getting legs blown off and just bad, bad shit, I find it hard writing about my health without coming across as whiny. Or melodramatic. Or both. But what is a writer, after all, if not naked and shivering in a transparent sheet of his own melodrama? I mean, we sport it well, don't we? Like professors in tweed. Like farmers in overalls. Like gym teachers in warm-ups.

So fuck it . . . here goes. Except, since this is a long one, I think I'll do it in three parts. Because one thing I've learned about the blogging is it's not a medium for length.

So . . . more tomorrow.

link to this | comments (2) | File:  Heart  Health  AS