Some Notes on Advocacy (I should have known)
I hadn’t planned on writing about this, because it went badly. Still, maybe there’s more to learn from flops than wins.
August 22, my husband Tom’s birthday. My heart is beating fast. Too fast? I’ve seen the warnings: women’s heart attacks are different; the signs subtle; watch out! I need to get to the hospital, fast.
It’s dark, late, 10:30. Anna, a young wildlands firefighter and emergency medical technician I know, sits at the ER’s front desk. A good start.
They hurry me to a cubicle, check my pulse and blood pressure, draw blood, stick 12 ECG (electrocardiogram) leads onto me, start an IV drip. The nurse is paying attention.
Nothing alarming yet. The doctor will see what my blood chemistry reveals when the tests come back.
Midnight: nursing shift change. A dangerous time. Though hospitals work to pass information correctly and completely, the chance for mistakes rises.
I feel guilty – it’s Tom’s birthday and we’re both tired. I tell him, Go home – just a mile away. I’ll nap, and will call him when they let me go.
At last, the doctor says the tests show that my blood chemistry is fine and I can go home. No one comes to unhook me. It’s dark in my cubicle. A patient patient, I don’t mind a little wait. I doze, check the clock, doze. An hour goes by.
2 a.m. This is ridiculous. I want to be home, in my warm bed. I unstick my 12 ECG leads and put on my clothes. With the IV needle in place, I can’t put my left arm in my sleeve.
I shuffle to the nurses’ station, rolling my IV pole along with me. Two women on the far side of the counter are looking at papers together. Several minutes go by. They never look up.
I’m worn out from the anxiety that brought me here, sulking like a child, thinking “you’ll be sorry,” deflated beyond anger.
It feels like a dream – after midnight, standing in a vast room with a ring of curtained cubicles on all sides, I feel invisible, unable to break the silence.
I pull my pole back to my shadowy cubicle.
I decide that Anna, my admitting desk friend, can take out my IV. I call Tom on my cell phone and start for the exit.
A nurse stops me – “Where are you going?”
She hasn’t heard that the doctor said I can leave. She takes out my IV. I tell Anna goodnight. Tom takes me home.
My heart is fine. Just a weird blip on a dark summer night. But things have gone badly, and I should have known not to trust that everything was under control.
Does anyone wonder why a patient needs an advocate? I was foolish, telling Tom to go home. After all we’ve been through with our son, with my mother, with him, how could I think I didn’t need him?
Things can always go wrong. A patient doesn’t have the energy or the perspective to take charge. We all need advocates to speak for us and, sometimes, to act for us.
Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
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