Yesterday I went to a new doctor—a gastroenterologist. Well, actually, I saw a nurse practitioner. I only had to wait a month and a half for an appointment with her—if I’d waited for the doctor it would have been three months.
So this woman comes into the treatment room, introduces herself and asks if I’m Miss or Mrs. I say Miss, then ask her which she is. She replies that she’s Marie. Okay, we’re off to a good start. I tell her I’m Anne.
Then she asks what’s wrong, so I explain that I’m having these episodes that start in the middle of the night with severe chills. I shiver convulsively for up to two hours, then start having frequent bowel movements until I’m all cleaned out. After that, I run a fever—usually around 100 degrees, but sometimes as high as 102—and have no appetite for three days. I lose about five pounds, then everything goes back to normal.
This happened every four to six weeks last winter, then stopped during the summer. In September I had another episode, and then three weeks later—last week—I had another episode. Last year I kept trying to maintain hydration—I was drinking water, gingerale, ginger tea—but this year I stopped trying to drink and the vomiting stopped.
And no, I have no pain; none at all.
When she asks if I have any bleeding, I lie and say no. Sometimes there’s a very little blood—has been for, oh, about a year, but I don’t want to get into this with her. Only in America do you tell someone you’ve only known five minutes that you have occasional rectal bleeding. Animal instinct is to protect your vulnerability from strangers. The fact that the sign on the door says gastroenterology doesn’t alter the equal fact that Marie is a stranger to me.
Marie wants to know what other doctors have done about this. I think of Dr. Steve Wechsler, my ayurveda doctor and chiropractor; Dr. Nasri Ghaly, my acupuncturist and psychiatrist; Dr. Paul Cohen, my hypnotherapist and psychotherapist; and Cheryl, my nutritionist, who all looked puzzled and didn’t have any ideas. I think of Dr. Robert Friedman, my internist, whose sole response was to tell me to come back when I was actually having an attack, which I can’t do because at the time I am too sick and have no one to help me. So I reply, “I’ve consulted with my health care team, but they haven’t known what to do.”
Marie is shocked and appalled, and says, “You mean no one has done any tests?! This has been going on for a year, and no one has done any tests?” Yes, Marie, no one has done any tests. Obviously, this comes as a big surprise to her, but it is entirely possible for someone to be sick and not run to the doctor and demand tests. It’s a couple of hours of chills, half a day of pooping, and three days of a low grade fever: I have lived more than 22,000 days and, relatively, these attacks are not a terribly big deal. But now I am getting tired of them, and want to do something. A year—yes, that’s about the right length of time to tolerate the problem before aggressively seeking diagnosis.
Then Marie wants to know when my last colonoscopy was. Never, I tell her. She proceeds to scare tactics, and tells me about my age, my father’s colon polyps, and the statistics about colon cancer. I should, she says, be having routine screening colonoscopies. I think about, but do not mention, my friend Geri.
Geri is a nurse practitioner who had a “routine, screening colonoscopy.” They nicked her bowel. She didn’t know it. All she knew was that she was having frequent fevers and abdominal pain. It went on for about a year and the doctors couldn’t diagnose it. Finally, she was so sick that she was hospitalized, and they did enough tests—including a thousand-dollar MRI—to figure out the problem. They said she needed a little surgery to clean out the infection. After the surgery, when they came out to talk to her angst-ridden husband and the father of her two young children, they told him they’d had to take out a foot of colon, an ovary and the appendix—a little surgery.
Routine screening? No thanks. You can study anything that comes out of my body—blood, urine, stool, phlegm—but when it comes to invasive procedures, we’re going to slow down and give it a lot of thought. The American medical industry has a phenomenally high rate of getting it wrong. If the automobile or defense industries screwed up with as much frequency as the medical industry, Congress would be holding non-stop hearings. Why is it we ignore the multi-failures of the medical industry? One year I kept track and discovered the error rate was about 25%.
The doctor ordered a lab test for potassium but the clerk insisted it was for iron. In another test, the lab sent the doctor the results for somebody else instead of me. With another doctor, the test results were positive for disease but the lab report was put in my file and I was never notified. A doctor ordered a drug after he had already researched it and knew it had been taken off the market. The pharmacist filled the prescription with a look-alike drug that contained a substance to which I was allergic. When I repeatedly took the drug and ended up in the emergency room, the doctor diagnosed the problem as emotional. Likewise, a doctor diagnosed my kidney disease as emotional. Another doctor diagnosed the scab on my belly as contact dermatitis; the dermatologist identified similar scabs on my back and diagnosed them as a familial genetic problem. Another doctor diagnosed my trembling hands as a familial problem but it stopped when I stopped taking the heart medication.
The American medical industry doesn’t know what the hell it’s doing and the healthiest thing you can do is stay away from it. Nevertheless, after losing about three weeks of my productive life to these attacks, I’m here with Marie looking for a diagnosis. (To be continued)