After my hospitalization last summer, I decided to fly to Atlanta to see a specialist and get an ER protocol letter. I figured that being kept waiting in the hospital ER for hours while my muscles digested themselves was more than enough incentive to make sure that never happened again. I still believe that if I had been given a D10 drip immediately upon arriving (which I asked for but wasn't taken seriously), I would have been hospitalized, at worst, for a day or two. As it was, the extra hours of muscle breakdown left me hospitalized for a week.
So last weekend I experienced some shortness of breath. Since Dr. Kendall told me that cardiac myopathy is a possible side effect of CPT2 events, I don't just blow off signs that there might be a heart issue. (Spoiler alert -- things seem fine, will confirm with echocardiogram on Thursday). But I arrived at the hospital with my ER protocol letter in hand, and proudly announced that they just need to put me on a D10 drip and then they could keep me waiting as long as they needed to. Well, that didn't happen. I asked them why they were ignoring the protocol letter and they don't me "we aren't ignoring it, we just don't have space so we can't follow it". Instead they gave me apple or orange juice every 30 minutes. That is in fact not a terrible alternative, but given that the protocol letter was really clear about the importance of a D10 drip, I was really surprised that they took the chance. Yes, it was Saturday night. Yes, they were busy. But I'm willing to bet that I was maybe the 10th FOD patient they'd ever had, and the only CPT2 patient they'd ever had. So it isn't like they knew what they were doing from massive experience.
I even pulled out my trump card: "Please let your risk management department know that you are not following the Emergency Room Protocol letter". The response: "We're too busy to do that".
So I'm not going back to that ER. But it raises the question of what we should do in this situation.
In the meantime, my CK test showed an abnormally high CK level, but not the "above the maximum the test can measure" like it was last time.
Oh, the best piece of advice? I was told that because I was "walking and talking" they put me at the lowest level of urgency. Next time I'm slurring my words and falling over.
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