Health Care Inequalities: Personal

Imagine that you're sitting at home and begin feeling ill. You're having trouble breathing and become disoriented. Your face is a bit swollen. Your only experience with these symptoms is a previous history of allergic reactions, but you can't imagine how you would have been exposed to the thing that makes your body go haywire like this. You do the smart thing. You call 911.

Weak and disoriented, you try to give the paramedics the information they need to help you. You're probably getting some things wrong, because you can't think and you're gasping for breath every time you speak. The paramedic puts you immediately on oxygen, an IV and a heart monitor. She checks your stats.

Your heart is racing and your blood pressure is bottoming out, but you don't know this. You're getting more disoriented by the second, you're fighting to breathe and you're terrified.

The paramedic injects Benadryll into your IV. Nothing. Your stats are out of control, so she makes the hard decision and asks her partner for epinephrine. Your mind is chaos, but you know what that means somewhat. She tells you that this is going to raise your heart rate and you ask if your heart rate is low. You sound so weak and frightened that you don't recognize your own voice. "No, but this is going to make your heart race and it might hurt a bit." While she gets ready to push the epi into your IV, her partner jumps out, slams the doors and gets in the driver's seat.

What she doesn't tell you is that intravenous epinephrine is the last ditch effort to ward off complete circulatory collapse. The epi hits you hard. It feels like hammers hitting the inside of your chest and skull. Your hands and feet, deprived of oxygen, freeze into claws as the muscles constrict and become temporarily paralyzed. You hear the paramedic screaming into the radio but you understand very little. All those nights watching ER pay off when the few words you do understand come through loud and clear. "We need a crash cart at the ambulance bay, STAT!" And you're off, with lights flashing and sirens blaring.

At the hospital, you struggle to sit up as instructed and to answer the questions being tossed at you left and right by the medical personnel swarming around you. You keep getting stuff wrong. You just don't know how to keep it all straight. Despite the paramedics' notes and the nurses' report, the doctor all but writes you off. He takes no tests and doesn't even do a full exam before deciding you probably just have an infection and walking out. The nurse brings you an antibiotic and a pain pill. You think for a moment that you're not in pain so you shouldn't take the pain pill. You think to ask the nurse, but she interrupts your thoughts with a question. Confused, you take them both and ask if the epinephrine was for nothing, then. The nurse does a double take with shock on her face, but says nothing. You can go home. (You'll find out later that standard procedure with intravenous epi injections is 24 hours observation in the ICU.)

Later, your family stops at the pharmacy to pick up your prescriptions and you decide to use the cool blood pressure machine. You're barely able to stand straight. Your blood pressure is low and your pulse is racing. You're so mind-fucked by this point that it barely raises a question in your mind. You go home and get into bed. Everyone's left. You're alone. You could die but you're too exhausted to care or to notice.
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For you, this is hypothetical. For me, this is August 2, 2004, the day of my first major cardiac event. For too many women, this is the quality of care they get when they have heart disease.

By the time this happened, I'd been having cardiac symptoms for approximately 2 years. Despite seeking medical attention multiple times, no one looked at my heart. After a lot of tests in 2003, I was misdiagnosed with mild gastric reflux and told to take Prilosec. It did nothing. I complained that the pain was excruciating. I could eat spicy food and feel nothing, but when I laid down to rest or sleep, my chest would start hurting like hell. I was having typical symptoms of heart disease. I was ignored and demeaned.

Not long after this, through a casual encounter with my aunt's blood pressure/pulse monitor, I discovered that I was in near constant tachycardia. My heart rate was constantly way above normal. The disease with which I've now been diagnosed, Prinzmetals Variant Angina or Prinzmetals Syndrome, had damaged the electrical pathways to my heart. Finally, someone looked.

I have one of the least favorable presentations of this disease, to put it mildly. My arteries are structurally normal and clear of blockages and plaque. My blood pressure, cholesterol, etc. are fine. My arteries simply don't function normally. They regularly spasm, decreasing or completely stopping blood and oxygen flow to my heart. When that happens, I go into serious arrythmias. My heart starts skipping beats in what's called atrioventricular block or my heart rate goes wild or both. It hurts. It hurts A LOT.

In a study published in 2003, 42% of patients who went into severe arrythmias during vasospasm experienced sudden cardiac death due to heart attack, stroke or fatal arrythmia during the two years of the study. I've been symptomatic since 2002 and having serious arrythmias since at least 2004. Do the math.

I'm lucky to belong to a support group over at Yahoo groups. (There are too few of us to have a support group in any one place, so thank you, Al Gore!) In the time that I've belonged to the group I've learned that my story is not unique. Nearly all of us can talk of being ignored, belittled, and demeaned by doctors who know too little about this rare disease. Nearly all of us received delayed diagnoses and misdiagnoses before finding out what was wrong.

We're working now on compiling a full questionaire to find out as much as we can about what we all have in common and how we've each individually experienced this disease. Hopefully, we'll learn something. We're also trying to find a way to bring more attention to this disease. I think it's about time that I use my mad journalist skillz for something more important than bitching about the latest Republican scandal or abuse, so I'm wracking my brain.

If you're an editor or fellow journalist who might be interested in bringing attention to an orphan disease like Prinzmetals and to those of us who suffer from it, feel free to e-mail me at mbb250 AT yahoo DOT com. (I swear, despite the weakness of my blogging, I'm actually a damned good writer when I have the time to work on something or I'm committed to it or I'm getting paid for it. Really. I have a reference or two if you'd like. NYU don't make no bad journalists.)