Tuesday, April 19, 2011

And While We're On the Subject...

     I've been thinking about something since the second or third trip to the emergency room with my husband. When we get him all checked in and back to an exam room and whichever doctor is on call at that time comes in, they always start with the same round of questions. One of the first things they ask is if he's on any medications and of course, he rattles off his daily three - Losartan, Warfarin, and Toprol. And then he stops. No mention of the Marfan's until either I say something, or the doctor asks him point-blank why he has a titanium aortic valve (they can always hear it ticking and they know immediately what it is.)

     His silence absolutely drives me up the wall and the more trips we take, the harder it's becoming to keep my mouth shut. Actually, I wasn't able to during this last round. After the doctor had run through the standard list of questions and my husband had told them about his spinal fusion, but failed to mention the reason for it, I had to say something.

     I'm sure the doctor thought I was being a nuisance and simply repeating what was on his chart, but I had to reassure myself that we were all clear about my husband's disorder. What if someone somewhere screwed up and it's not written in bold letters in his medical records that he's got Marfan's Syndrome? What if the doctor is moving too quickly from patient to patient and didn't take the time to read my husband's chart before coming into the cubicle? What if charts got mixed up?

     Don't I have a right to fully disclose what my husband won't? He thinks he should be able to trust the doctors enough to be sure that they're well aware of his medical history. While I understand and appreciate that, I have to disagree. In the vast majority of cases, yes - the doctors do have the correct information and know what they're walking into when they come into the patient's room. What about the off chance that they don't, though? What if they didn't know about his heart and ordered the nurse on duty to administer something that doesn't play nice with one of his meds? What then? What if they didn't look at the chart and didn't recognize the Marfan's symptoms for what they are?

     I may sound like a paranoid freak, but if that's what it takes to do everything humanly possible to ensure that my husband doesn't check out any sooner than necessary, then so be it. What's the harm in being up-front about what's going on? What does it hurt to say, "Actually, I have Marfan's Syndrome and because of it, I had a spinal fusion when I was twenty-two and that's what's probably causing all the pain."? Tell me, where's the sin in that? I can't help it if I'm overly protective at times, because so much of the time, I feel so damn helpless when dealing with his disorder.

     I can't fix him, I can't help him when he's in pain, I can't make more vacation days magically appear for him. So what the hell options does that leave me with? Am I to sit silently in the corner and wait for the all-knowing, all-powerful doctors to make it right? Okay, fine, but I can be sure they've got all the information they need to put my husband to rights. This last trip to the hospital? I don't know if the pain was too bad that he was just out of it, or if he just didn't understand the question, but when the doctor asked him if he was on any meds, he said no. What, really? Then what the hell are all those little orange pill bottles on top of our refrigerator for?

     It's things like that that really scare me sometimes. I'm trying my best to take care of him, but I'm dealing with a disorder I'm learning about as I go along and the information I can find is pitifully sparse. I couldn't stand it if the worst happened and I took him into the hospital to be fixed and instead lost him to some medical oversight.

      I know he trusts these ER doctors to know what's going on, but I say that they don't know him or his condition and once again, what's the harm in me saying up-front that he's got Marfan's? There's so little I can actually do to help him with this and to now be told that I should just keep my mouth shut and trust that these nameless strangers will properly care for him? "Frustration" doesn't even begin to cover it...

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