By Anne C. Woodlen
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 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 rectal 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 my ayurveda doctor and chiropractor; my acupuncturist and psychiatrist; my hypnotherapist and psychotherapist; and my nutritionist, who all looked puzzled and didn’t have any ideas. I think of 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 that he had already researched and knew 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 was a side effect of 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.
Marie tells me we will start with a colonoscopy.
No, I don’t think so.
I explain to her that I can’t take the drugs for the clean-out procedure. Physicians prescribing pharmaceuticals have so busted out my immune system that I now have negative reactions to anything foreign that comes into my body—and the crap from pharmaceutical companies is so weird that it might be invented on another planet. I can no longer take any drugs for anything, down to and including aspirin. So Marie says we can start with x-rays. Tell me about that, I say. She tells me you just drink this barium thing—.
I sit there and look at her until she gets it: barium is a product of the pharmaceutical company.
Then how am I going to treat you, she asks?
I say, remember your grandmother? What would you have done for her before all these drugs and invasive tests had been invented?
Well, says Marie, you can have these tests done without sedation.
She wants to stick one probe up my butt and another one down my throat until they meet in the middle, and she’s offering me the option of doing it without sedation.
If you did it at Guantanamo Bay to a presumed terrorist, it would be called torture. Do it in an American hospital and it’s called competent medical treatment. What Americans put up with in the face of their fear of dying amazes me.
Then Marie really lets loose. She goes on a harangue about good medical treatment and how she’s required to tell me that this can be done, or that, and if I come back in a year with cancer—and at this point she stops just short of saying, “I’ll be legally liable.” She doesn’t care about helping me get healthy. She cares about sticking a scope up my ass to cover her butt.
We continue to go around in circles, me trying to explain that physicians prescribing pharmaceuticals busted out my immune system and now my immune system reacts to everything. I can’t wear mascara, earrings or nail polish. I have allergic reactions to all animals—cats, dogs, birds, whatever.
Marie continues to repeat her rant about what constitutes proper medical treatment, and what she has to do. She talks repeatedly about blockages and cancer. At one point, she says there are treatments alternative to drugs. I think of my experiences with acupuncture and hypnotherapy, and perk up. “What?” I ask.
Marie says, “Surgery.”
I sit there and look at her. She doesn’t get it. Finally I say, “And how are you going to do surgery without drugs?”
The medical establishment is so blind that they literally have no awareness that everything they do is contingent upon the ingestion of foreign substances.
Marie and I finally give it up. She orders blood work “To find out if you’ve been noncompliant with the celiac diet”—oh, by all means, let’s look to blame the patient. When she’s filling out the form for the lab, I ask her to note “copy to the patient.” She agrees, but doesn’t do it. When I mention it again, she says, “We’ll be glad to give you a copy when you see the doctor.”
No, Marie, I want a copy mailed to me direct from the lab [see also essay on reasons for the patient getting copies of blood work]. So she writes it on the form, and tells me to come back in a month to see the doctor, with whom she will speak. I know what this means. It means she’s going to prejudice the doctor before I ever see him.
So I go down to the lab and point out to the receptionist that I am to get copies of the lab reports.
No, we don’t do that, she says.
In a matter of seconds, the lab manager has come out with photocopies of regulations—selections highlighted—explaining why they won’t give the patient information about herself even when the doctor has ordered it and she’s paying for it. Then she tells me the real reason: a patient wrote “copy to patient” on her own lab order. When the doctor found out she’d seen the results before he did, the doctor called the lab and reamed somebody out, apparently without benefit of sedation.
In the first place, if the doctor had maintained a working relationship with the patient, the patient wouldn’t have needed to add a note to the lab order. In the second place, labs are filled with phlebotomists, not handwriting experts. It was not the lab’s fault. The doctor should not have held the lab responsible, nor should the lab have accepted responsibility. They should have told the doctor to shove it, but they are part of a system in which the guy in the longest white coat gets to tell everybody else what to do. Now all doctors who want their patients to be knowledgeable are denied that right.
In the third place, you don’t subvert the medico-legal process of access to information for all people on account of one woman who apparently crossed the line. But that’s exactly what this lab did—created policy based on one case, which any lawyer will tell you always makes bad law.
I retrieve my lab order and go down the hill to the next hospital where they cheerfully tell me that they will be happy to send me copies of my lab reports. They tell me this because I have already gone one round with the president of their hospital and gotten them to do it right.
So now it is zero-dark-thirty the next morning and I am laying in the darkness thinking about this.
Why is it that if you have only one leg and are delivering a baby, they figure out how to work with the fact that you can’t put your “legs” up in the stirrups, but when they find out that my immune system is compromised, they won’t figure out how to work around it? Won’t even try. Why is it that when I come in with an unexpected complicating factor, instead of going to work to deal with it, they blame me?
And, as my morning poop is tinged with blood, I wonder if I have a colon blockage or cancer? Yesterday I didn’t worry about it, but today I have been to the doctor’s and have been spooked with horror stories of the worst things it could be.
We all must face death sooner or later, and American medicine is just a terribly painful and expensive way of postponing it.