Emergency Room as Microcosm

September 23, 2011 at 3:41 pm (Medical)

All day yesterday, I kept thinking, “This experience is exactly what my whole struggle with healthcare has been, from day one.”

So Wednesday night, I experienced a new, sharp, intense pain in my right side, approximately where the kidney is. I had a hard time sleeping due to it, so in the morning I called my medical advocate/adviser and asked her what I should do. She advised calling my primary care doc and making an appointment.

One of the reasons I like my primary care doctor is because it’s really easy to get an appointment quickly, which is a real currency in my world. (I have had to wait upwards of four months to see some specialists!) The receptionist told me I could come in that day, in a few hours. I had to do some logistical juggling, but was able to get there.

The doctor examined me and decided that it was possibly too dangerous to do this the slow and steady way. He advised that I go to the local hospital ER, which is what I was really hoping to avoid. Due to the inactive TB, every time I go to the ER they have to put me in an isolation room, which means it takes forever (and a lot of poking from my advocates) to see doctors and nurses.

But with random guesses of kidney stone, nephritis, or even the TB metastisizing in my kidney, I didn’t have much of a choice. I went, and straight to the isolation room I went. They started out with all the obvious tests, looking for “horses”* like a UTI, or a blood clot, or a kidney stone. I had a CT as well. All of this came back with no result. Once again, I am having a significant medical experience (pain, nausea, difficulty breathing) and they have no idea. In a last ditch effort looking for zebras*, they gave me yet another chest x-ray (they happen a lot when you say “TB”, although they were also looking for things like a collapsed lung or some other weird thing). In the end, they debated keeping me for observation overnight, but instead decided to send me home, with random suggestions to see my primary care again, or maybe an orthopedist (?!?).

It’s pretty easy to read that paragraph and it seems like no big deal. But as those of you who have been to a busy ER might have guessed, this ordeal took almost eight hours. I went home, dejected and still in just as much pain as when I woke up that morning.

The Gods have told me that I’m not allowed to just surrender and stop seeking out medical care – and I think my loved ones would probably disown me if I did. But it’s experiences like yesterday where I did everything I was told, and in the end got very little for my troubles. And in some ways, it only made things worse. Now I have this pain that I cannot explain or treat (my normal course of narcotics doesn’t help) and no real usable suggestion as to what to do. (I will probably make an appointment for said orthopedist if it doesn’t go away on its own in a few days, but I don’t hold any hope that it will do anything.)

This is really a microcosm of what the last four years have been like for me. I complain of symptoms, the doctors are sure it’s one of these three things, and then it turns out it’s not, and then it’s not options four, five, six, or seven either, so they throw their hands up and tell me they don’t know, and either throw drugs at me (usually narcotics) or give me a reference to yet another kind of doctor.

Let’s see. I have been seen by three neurologists, a rheumotologist, two primary care physicians, two infectious disease doctors, a cardiologist, a pulminologist, a sleep study expert, a bariatric surgeon, a pain management specialist, a hemotologist/oncologist, an endocrinologist, a gastroenterolgist, and that’s only what I can think of from memory.

I guess soon I can add orthopedist to that list.


*”Horses and Zebras”: In medical school, there’s a saying, “When you hear hoofbeats, think horses, not zebras.” It means that no matter what the situation, when first diagnosing a patient, consider the most common ailments before you start looking at more exotic reasons for the problem.

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