Rules of the Game

CAUTION!

As with all allegorical remarks,

don’t assume I’m talking about you

I’m not.

If you feel the allegory is false, misleading, or incomplete,

feel free to tell me why.

And if you feel it’s targeted at you,

ask yourself why you feel that way.

But don’t go blaming me.

I find people perplexing at times. Why do some people act like vegetarians on the Atkins diet? Their complaints and subsequent actions make no sense to me. The Atkins diet is what it is. If you don’t want to eat meat, then find another diet. But don’t go trying to change the rules of the Atkins diet. You’re not going to lose weight that way.

Maybe a sports analogy will work better. If you don’t like the rules of baseball, then why not wander off and find another game to play? Don’t hang around complaining that you don’t like the rules if it’s someone else’s playing field. Sure, you can petition to change the rules, make it into a new game. But you shouldn’t get to change the rules in the middle of someon else’s baseball game just because you think the pitcher should be allowed to throw the ball at the batter’s crotch. If you want to play crotch-ball, go and find yourself a nice crotch-ball game in progress. Don’t go spoiling everyone else’s baseball game or getting pissed at the umpire because he called “foul” on your curveball to the groin.

Yes, I’m guilty of trying to squeeze a size 6 1/2 foot into a size 6 shoe once in a while, and then complaining that the heel pinches. I do try to draw the line short of writing the shoe manufacturer to complain that his size 6 shoes don’t fit my size 6 1/2 feet though.

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Saw Dr. Liver yesterday. It was the first time I’d seen him post-transplant, and I got a hug from him when he first walked into the exam room. “All my transplant patients get hugs afterwards,” he then told me. I think he was a little embarrassed to have impulsively hugged me that way and maybe even worried I took it the wrong way. To be honest, it was nice to get a glimpse of the man inside the doctor for those handful of seconds. This is the guy who diagnosed me, did dozens of painful procedures on me with the utmost compassion while we waited for my new liver, who argued my case to get me the best placement possible on the list, and who took the extra minutes to reassure me when I started to hit some really bad days toward the end of my wait. To see this guy break professional demeanor and give me a hug was an incredible moment for me.

It left me feeling warm and fuzzy when I left his office, even after we discussed a few worrisome things. I’m seeing a specialist next Wednesday to check out something that’s been persistently worrisome in my blood work. He also gave me some painkillers for the migraines (should I need them). He also isn’t pleased with the swelling in my legs, nor with my high blood pressure, but didn’t want to prescribe anything until he got the complete paperwork on my chem values from Big City Hospital (which they were supposed to have forwarded to him, but have failed to do).

It’s a pity I must use BCH for my post-transplant follow-ups (medical regs require a three doctor panel follow post-transplant patients). But at least Dr. Liver is willing to see me while I’m still being seen at BCH. This way I know that somebody familiar with my case is following my complete recovery period.

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One of the things I especially like about Dr. Liver is that he manages to convey his doubts or disagreements without naming anyone. I’ve been having problems with one particular doctor at Big City Hospital. It turns out he doesn’t like her much, either. It helped to know he felt the same way. I don’t feel right disliking anybody who is on the team to keep me healthy, but some of the doctors at BCH tend to treat you like the next round of sushi at one of those revolving sushi bars.

For example, the doctor who examined me last week wasn’t one I’d seen before. That’s not unusual at this point; in fact, I’m pretty much guaranteed of never getting the same doctor from one visit to the next at this stage, since I’m doing so well. Anyhow, this doctor came into the room carrying my charts. The first words out of his mouth were, “Biliary cirrhosis, right?” I shook my head no, and started to speak, but he said, “No, don’t tell me. When I see a woman your age who’s doing this well post transplant, there’s only a few things it could be. ” He paused for a moment, then named a disease I can’t recall. I told him no, that it was Budd Chiarri. He looked disappointed, as if I’d taken all the fun out of his exam by telling him before he guessed. I don’t recall that he ever said my name (though he may well have). I was good and pissed by that point, and was frankly relieved when the exam was cursory and I was told I didn’t need to come back for two months. He didn’t ask the right questions (probably because he didn’t bother to read my chart before entering the exam room), and I didn’t feel the need to prompt him.

Of course, my reaction was absolutely self-defeating. I didn’t like the guy’s attitude that I was a disease and not a name, so I didn’t want to discuss joint pains and migraines and diarrhea with the guy. Let’s just say that I was having trouble remembering that it wasn’t supposed to be a popularity contest. Doctors are highly paid consultants, and you need to use them that way to get your money’s worth. If you happen to strike up a nice, compatible relationship, then that’s a bonus.

Like I said, I can be guilty of squeezing too much foot into too little shoe. I don’t happen to like the way the medical game is played some days, but that’s the way it is. I don’t have the option of taking my ball and going home; in this game, it would be suicidal. I will seek out doctors whose approach I admire, and consider it a bonus when I like the doctor as well. And I’ll put up with the rest of the lot for the duration.

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I complain when my doctors see me as a disease, and not as a human being. I complain when I start to cast myself in the role of Liver Transplant Recipient, instead of the role of a person who works for a living, has good friends, does interesting things, has the love of a good man, and who happens to have had a liver transplant. And then I go and write diary entries such as this.

I think it’s because I’m still overwhelmed by events of the past year and a half. There are times when I almost forget, until the watch alarm goes off telling me I have to take more pills, or I happen across a television show that features transplants, or I see the scar running just below my rib cage. It’s the equivalent of waking up from a bad dream in reverse. I don’t wish to belabor it, nor do I seem to be able to simply leave it lie.

I need to finish The Letter to my donor’s family. It’s mostly written, but every time I sit down to complete it I end up completely redrafting it instead. Never has it been so hard to say “thank-you”. But the guilt of having it hang over my head adds to the burden of angst I’m carrying around at the moment. I actually broke down and cried when I tried to discuss it in public this past weekend. Anyone who knows me would know how painful that was. I don’t do public emotion well. And, considering the circumstances (which I’m not going to get into here) it was more than embarrassing; it was absolutely mortifying.

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I need to get out and join a bowling league or start giving Tupperware parties or something, so I have something to write about other than cats and livers.