2005 - Vol. 2, Issue 3

Which is worse: spending a lot of time and energy on health care crises when you're really sick or spending a lot of time and energy on health care crises when you're actually fine? This month, I got to find out. For one thing, I've been on the phone to my mother a good deal, which is only natural since she's in a hospital in New Zealand awaiting surgery because she broke her hip in Australia. Plus, because both my dogs keep getting sick, I've had to juggle four different vets, which is not good for my fibromyalgia. But I thought I was feeling OK, until a doctor I never met called to tell me I was dangerously ill.

You see, last week my neurologist ordered some routine blood tests. I got the labs done at my local clinic, instead of the neurologist's office, because the clinic's nearby, and it doesn't reek of toxins (industrial cleaners, fragrances, carpeting) that aggravate my multiple chemical sensitivity (MCS). However, this month I ran into a snag: despite puncturing me many times, the nurse only managed to fill one vial with blood. She said the lab could probably run all the tests with the one tube. Excellent.

At 5:00 the next evening, things became less excellent. The clinic's on–call doctor (we'll call him "Dr. G") phoned to say there were two "major abnormalities" in my lab results. First, my platelet count was way too low: A normal platelet count is between 140 and 400. Mine was 7. Second, my white blood cell count was also much too low.

Dr. G explained that platelets allow blood to clot. I believe he used the phrase "bleed out" at some point. Because I watch Law & Order, I know what those words mean and I do not want them used about me.

Dr. G further explained that a low WBC might indicate a depressed immune system. That didn't make sense because my disabilities involve an upregulated immune system. "Or," he said, "it might mean that your bone marrow isn't producing enough white blood cells. The bone marrow . . ." I cut him off. "I know what bone marrow does!" I yelped.

He'd consulted a blood specialist, Dr. Dilly, about my results, and Dr. Dilly said I needed to get to the ER, pronto. They'd retest my blood to see if it had been an error. If the results were consistent, I'd probably need a transfusion and more tests. I described how the nurse could only fill one vial. "Couldn't that have caused this?" He said it couldn't. I explained that, due to my MCS, the ER would make me sick and that I'd rather just swing by the clinic for the retest. No, he was adamant. I better get my butt to the hospital, posthaste. He would call and tell them I was on my way.

After I stopped panicking, I found someone to drive me, got my service dog packed, rounded up my other assistive equipment, and updated my ER protocol notecards, all within two hours: lightning speed for a crip.

Laurel, my friend and sometimes–PCA (personal care assistant), got me to the front desk around 7:30. She says that the guy next to me asked "about a million times, like a two–year–old": "What kind of dog is that?" Laurel says that all night long, nurses, patients, family of patients, etc., asked "What kind of dog is that?" and "What's his name?" but I don't remember; my attention was split between trying to calculate how many of my short stories I could finish in whatever time I had left to live, and how very little time that would be if I keeled over from the ER fumes.

Also, I was adjusting my breathing equipment - because, in addition to my wheelchair, oxygen, Gadget (yes, that's his name), and other assistive technology, I use an industrial respirator mask. It sports a Darth Vader–esque vent in front of my mouth and purple air filters jutting out of my cheeks. Any day now the Big Purple Fly look should become hip.

You can simulate this fashion experience at home. Just put on a bra (or jockstrap) made of unyielding rubber. For a proper fit make sure it's five sizes too small - for your face. Now, wear it for several hours. When you can't take the pain anymore, take it off, but have a friend on hand to spray you with toxic fumes, such as RAID. You'll know you've got the simulation right when you look like a bug with it on, but feel like a bug with it off - a fumigated one, that is.

Thus attired, after meeting with the triage nurse and watching a bit of (what else?) Law & Order in the waiting room, Laurel and I were led to a room that had the comforting aroma of something that would soon bring on a migraine. But the hallway was an olfactory smorgasbord of toxic smells, akin to ground cigarette butts in ammonia. I'm sure Calvin Klein could bottle it, give it a stylishly depressing name ("Devastation" or perhaps "Opression"), and make a mint off it, but we decided to shut the door nonetheless. An hour went by. We wondered if nobody knew we were there because we shut the door.

At 9:00 the triage nurse came in to take my temperature. This seemed positive — things were moving along.

Or not. I sat in my wheelchair, wondering if it was permissible for me to lie down on the gurney. Laurel balanced on a diminutive, wheeled stool. We took turns looking at the clock. At 10:00 a guy in purple scrubs came in and introduced himself as Larry, a phlebotomist. Hurray! Larry filled four vials and left. Then, my blood failed to clot and I bled profusely until I died.

Only kidding! I clotted just fine. But it did raise the question: why, if the doctors were so worried about my inability to clot, were they not concerned about sticking me with a needle and extracting a bunch of blood and leaving me alone in there?

Larry said it would take at least an hour to get the results back, but I liked him anyway. About half–an–hour later, a doctor walked in. He didn't introduce himself; he just started the rapid–fire questions. Here's the transcript:

MYSTERY PHYSICIAN: Why are you here?

Me: I had some abnormal test results - my platelet count and my white blood cells are low. I have the numbers if you want them.

MP: No, I have them right in front of me. (Irritated) But why come to the ER? Why not get them retested at your doctor's office?

Me: They said I had to come here tonight to find out if it's a lab error, or if I need to have a transfusion, or if it's something—

MP: Who is your primary care physician?

Me: Dr. Y and—

MP: (Glaring) Then who is Dr. G? Who is this Dr. (Struggling to pronounce name) Vaneyeeer? . . . (Annoyed) Who are all these doctors? Who ordered these tests?

Me: Dr. V is my neurologist. He ordered the tests because he upped my dosage of Depakote. But I get my lab work done at the clinic because it's closer. Dr. G is on call tonight and he got the results and told me I had to—

MP: (Poking his pen at a scribble on his clipboard) Who wrote this note about Dr. Dilly?

Me: I don't—

MP: (Really irritated) How is Dr. Dilly involved?

Me: Well, Dr. G said Dr. Dilly is a blood specialist, and he consulted with him, and Dr. Dilly told Dr. G that I had to come to the hospital right away—

MP: (Angrily) It says to call Dr. Dilly. (Accusing stare) But Dr. Dilly's not on call tonight!

Me: (Lost for words)

MP: When did you speak to Dr. G?

Me: Around 5:30.

MP: (Extremely accusingly) So what happened between 5:30 and now?

Me: (Thrown by MP's sudden switch from "Why are you here wasting my time, you faker?" to "Why didn't you get here sooner?") Um, l had to find someone to drive me and, you know, get my stuff together (waving feebly at wheelchair, oxygen, Gadget, Laurel). . . .

Then MP asked me a lot of questions to which I answered "No" ("Do you have a fever? Are you bleeding anywhere? Are you in pain anywhere? Headache? Blurred vision?")

MP: Joint pain? Never mind, I see you have fibromyalgia, you must have joint pain anyway.

Me: Well, actually, it's more my tendons and—

MP: When was your last period?

Then, to quote Laurel, MP "stepped over and jabbed you in the stomach and asked 'Does this hurt?'" I said no. He looked in my ears, eyes, and mouth, and said he'd run the tests.

I explained about the trouble the nurse had had in getting the blood for the tests and asked if that could have caused a lab error. He replied that it couldn't be a lab error because two parts of the test were off. If it had been one, possibly, but definitely not two. "That platelet count is of concern because you could really start bleeding" he finished and walked out. I was touched.

But not touched enough to miss that he'd said "I'll order these tests" — future tense. In other words, not only had Laurel and I been sitting around, waiting, so had my blood. I took over the gurney.

About an hour later a nurse poked her head in the room. "Sharon," she called, "has anybody been in to take your blood yet?"

"Wirg," I replied from the gurney. Laurel told the nurse that, yes, the blood had actually been drawn before the doctor came in. "Does that mean you haven't started to run the tests yet?" Laurel asked.

"Oh no," the nurse responded, "I'm sure it's started. We just don't have any record of it."

Swell.

By midnight I was concerned. Laurel, who'd been awake since 5:00 AM and had worked a full day, was looking none–too–perky; I didn't know how much longer she'd be safe to drive. Gadget (he's a Bouvier des Flandres) would soon need a break and dinner.

We looked at the situation from every angle, trying to discern a reasonable course, given that we had no reliable information. When would we get the results? And then, how long would I have to stay? How long does a transfusion take? Or more tests? Should I ask one of my friends to drive across state so Laurel could sleep and Gadget could pee? Or vice versa? Eventually Laurel went to ask someone if they knew how long it might be before we got the lab results.

A few minutes later a nurse came by. She looked at Gadget sleeping on the floor and squealed (in a voice that was clearly several octaves higher than her - or anyone else's - normal register), "Oh, I didn't know this was the room Precious was in!" (Translation: If I had known the dog was in here, I would have paid some attention to you.) Then she turned to us unappealing humanoids and grunted that it takes at least an hour to get lab work back. (Translation: Stop bugging me, you inconsiderate schlubbs.) We informed her that, actually, it had already been two–and–a–half hours since the phlebotomist had come by, so, did she have any idea how much longer it might be? She responded by babbling more baby talk at Gadget before leaving.

I need to clarify two points here: (1) Laurel and I were completely polite and non–pushy. Whenever we asked anyone for information, we were extremely courteous, despite the fact that we had been in the ER for five hours simply to get some basic blood work and it was making me sick as hell. (2) Gadget once treed a full–grown black bear. He is 70 pounds of hard muscle. I was nauseated a lot that night but never so much as when I heard Gadget called "Precious."

Maybe I should tell people his name. . . .

A few minutes later Nurse Chirpy came back (notice how much attention we get now that she knows the dog's in the room?) to tell us that Dr. Mayor (he has a name!) had my chart in his hand. We gave her the thumbs up and thanked her. Then she turned to Gadget and purred, "You're the kind of cooperative person I like the best!"

Finally, Dr. Mayor, Himself, came in, shaking his head. "I don't understand it," he said, staring at my chart. (This sounded bad.) "Nobody goes from 7 to 230 in one day." (This sounded good.) Yes, it turned out, my results were all normal. The first results were due to laboratory error — either the tubes were mislabeled or the lab had goofed up the tests. He was sure it was the former. "There's no way that was your blood they tested." I had seen the nurse write my name on the vial label the previous day, but I let him believe what he wanted. I was being cut loose! Sure, I knew it would take several hours of scrubbing before Gadget and I would be decontaminated enough to go to sleep that night; and another week of repeated washing of all the clothing, gear, etc. But I didn't care. I wasn't dying!

At 1:00 AM I signed the discharge papers. As we made our way out, Nurse Chirpy gushed, "Thank you for doing such a good job!" to Gadget. Indeed, she'd seen him executing one of his most complex skills: holding down the floor. But maybe "good" just meant that he didn't howl or urinate on the floor or bite anyone. But then, neither did Laurel or I. And we'd had more provocation.

Before we left, Dr. Mayor said to me, "Well, that was easy!" And then he smiled.