Sunday, September 14, 2008

The Gambler

So as it stands now I'd say there is about a 50/50 chance I'll be admitted to the hospital tomorrow. I spoke with my doctor more about my symptoms this weekend and she was pretty concerned that this may be an all-out infection. Blah. So we added Prednisone onto the Cipro to hopefully lessen the inflammation and coughing spasms. She didn't want to try and admit me over the weekend because I would have had to go through the ER (note to the uninitiated: New York City ERs are definitely not fun places to be), so we're going to talk again tomorrow and see where I am. And given last night's choke-fest, I'm not overly optimistic over here.

I don't go into the hospital often - definitely more of a home IVs kind of girl - but I do think admission has its benefits. Mostly the fact that the hospital seems to be the ONLY way to force me to slow down and lay off my routine a little. I do my IVs at work, and I can also work from home given the great remote access my law firm has, so it's really hard for me to rest as much as I should when I'm not pretty much forced to do so. Sitting upright and working on my computer doesn't FEEL particularly stressful, so when I'm just sitting around doing IVs I'm always tempted to just get in a few billable hours. And I very rarely take off more than one or two days tops - even last Spring when I had a partially collapsed lung (not pneumothorax, just a little airsack collapse) and multiple pneumonias, I was still pretty consistent about going in to work. I'm definitely not saying that to brag. In fact, it's something that I think I, as a CFer, really need to work on.

I know my body needs extra rest and more care. I totally get the fact that my vest and nebs are, for the most part, not portable, which means that realistically I can't up my treatments to more than twice a day without staying home. If I'm getting an infection, the best way to fight it is to sleep, drink fluids, and do 4 treatments a day, plus mild exercise. I get that. It all makes logical sense.

On the other hand, most of the time when I start to get sick, there's very little I can realistically do to stop it. My infections lately tend to come on rather suddenly and with an intensity that totally baffles me, honestly. Extra rest and treatments might help me keep the bugs at bay for a couple of days or even a week, but ultimately I don't get better without some sort of antibiotic intervention at this point. So it's hard to force myself to stop and stay home and do everything I possibly can when I know that either way, the end result is going to be pretty much the same. More antibiotics, more IVs, and then I'll feel better. Treatments and exercise will then keep me feeling good for anywhere from a few weeks to a few months, at which point something will trigger another flare-up and I'll start to feel cruddy again. Lather, rinse, and repeat.

Most CFers know that there's a lot more to our disease than meets the eye. We're well aware of the fact that even some of the most brilliant scientists in the country, or the world, have yet to come up with any really reliable method of predicting CF progression or outcome. Our lives hang in the balance between actions (treatments, proactive and smart use of drugs/abx, exercise, etc) and luck. And at any given moment, either one of those two aspects can have the advantage. We've been placed at the table, whether we like it or not, and it's up to us (and our medical teams) how we play our hand. But even the best players have to lose once in a while, and ultimately it's bound to get discouraging when you're playing with such a stacked deck and your opponent clearly cheats.

So I won't be in to work tomorrow, regardless of whether that means staying home or checking into the hospital. I'm going to add some extra treatments and maybe they'll turn out to be the aces I need to win this round. Until then, here's hoping I can get away with bluffing.

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