Skeptical of Men in White After a Stint as Guinea Pig
I used to like going to the doctor. I liked the metaphorical handholding, the assurance that my cough was of the garden variety kind and not tubercular, the promise of a long and healthy, though somewhat neurotic, life. I’d leave my internist’s office with a spring in my step, my bronchial tubes clearing by the time I got to the parking lot.
But my infatuation with men in white coats came to a screeching halt almost four years ago. I was pregnant with my son when a routine blood test turned up a false positive syphilis reading. A subsequent slew of highfalutin lab work confirmed I did not have a venereal disease. Instead, I had something much creepier: antiphospholipid antibody syndrome. I learned that at best, this obscure autoimmune condition posed a problem only during pregnancy and at worst put me at lifelong risk for blood clots, lupus, rheumatoid arthritis and other doozies that I would trade any day for a case of the clap.
As I struggled to get my mind around this bizarre diagnosis, I realized that my warranty came with an expiration date. Despite my hypochondria, I had never truly considered myself mortal. Death was something that happened to other people and I was going to be the gal who pulled one over on the Grim Reaper. Suddenly, I had gone from having a nice casual thing with my obstetrician to becoming a fantasy patient for a team of obsessive-compulsive medical specialists that included an endocrinologist, a hematologist, and a perinatologist.
Because I had a rare condition that had been discovered just 15 years earlier, these experts wanted to study me. And because I was desperate to stay pregnant--I was only two months along and had previously suffered a miscarriage at 12 weeks--I thought I would be reckless not to follow their orders religiously.
Like oppressive lovers, the doctors kept me under their sway by implying that even though I felt OK now, I had better stay on my toes because my condition could take an icky turn at any moment. For instance, I was told I had a 95% chance of miscarrying without treatment. Even with treatment, my placenta and amniotic fluid would likely deteriorate, causing me to deliver eight to 10 weeks prematurely. And then there was the omnipresent threat of a “clotting event,” an odd medical term that made me envision my body hosting a kind of thrombotic fiesta.
“Antiphospholipid levels don’t get any higher than yours!” one of my experts exclaimed cheerily, hinting that I was just a hop, skip and a kaboom away from a pulmonary embolism. I began to feel less than whole, reduced merely to my bodacious set of antibodies.
Until recently, the treatment for a pregnant woman with my condition was a daily baby aspirin. According to my doctors, the new, improved medical protocol dictated that I inject myself in the stomach twice daily with massive doses of the anticoagulant heparin, theoretically to prevent tiny blood clots from entering my placenta and cutting off my baby’s oxygen supply.
Because I was on enough anticoagulant medication to thin a stallion’s blood, I had to have mine checked once a week to make sure I wasn’t about to bleed out. I also had more than two dozen ultrasounds to monitor the function of my placenta and amniotic fluid. One particularly obtuse doctor chided me for worrying so much and suggested I start seeing a shrink so I could “bond” with the fetus that he kept telling me I could lose. Ever the compliant patient, I then crammed therapy into my weekly health maintenance schedule.
When I began having preterm contractions at 27 weeks, I was hospitalized for five days then sent home to bed for the remainder of my pregnancy. The experts could find no medical reason for this new development; contrary to their dire predictions, my placenta and amniotic fluid were just dandy. In my completely unqualified opinion, the stress of being a high-tech patient took its toll and my body rebelled. The happy news is that I gave birth only three weeks early to a stunningly beautiful, perfectly healthy baby boy. The unhappy news is that my overly supervised pregnancy cost more than $40,000, much of which was not covered by insurance.
Post-pregnancy, my medical regime consisted of a daily baby aspirin and an annual check-up with the expert who had originally diagnosed my condition. Inevitably, when it was time to visit one of the specialists, Dr. Feel-Bad, he’d look at me pitifully and ask how I was doing. When I told him the truth, that I felt great, he’d flash me a patronizing smile, as if to say, “That’s what you think!”
Sometimes Dr. Feel-Bad would order a bonus test, like the $750 ultrasound of my heart to see if I had any “vegetation” growing on a valve (I didn’t). Once he insisted the flaky skin on the sides of my nose was a lupus rash until a panicky trip to the dermatologist confirmed it was merely dermatitis. Always, Dr. Feel-Bad would rattle off my lab test numbers, which were to me, utterly meaningless yet thoroughly ominous-sounding.
Not surprisingly, I developed an assortment of physical complaints: headaches, nausea, abdominal pain. Convinced my antibodies were eating up my intestines, I visited a straight-shooting gastroenterologist who told me I was the healthiest person he’d seen all week and why did I think I had inflammatory bowel disease? When I mentioned Dr. Feel-Bad’s name, the gastroenterologist rolled his eyes and groaned.
“Oh, him. He’s bonkers. He makes everybody crazy.”
As I left the gastroenterologist’s office, I realized that I had given too much power to my physicians. I’d felt lost and overwhelmed in the state-of-the-art medical maze and I had believed my doctors knew the way out because they were The Experts. I decided that I would be my own medical contractor. I would “hire” only physicians who recognized that we’re all here on borrowed time and that barraging a basically healthy patient with worst-case scenarios and experimental treatments could actually make her sick. And I would “fire” the ones whose egos were so inflated they couldn’t admit they didn’t have all the answers.
Recently, I learned that the aggressive heparin therapy I was on during my pregnancy is considered highly controversial. One fertility specialist told me that a pregnant woman who was on the same dose as I hemorrhaged into her brain and died. So did her baby.
When it came time for my annual checkup with Dr. Feel-Bad this year, I went to my lovely, calm internist instead and had him draw my blood. He called me with the results but didn’t spew numbers at me. He simply said that all the tests were normal except for the ones we know were abnormal, and those hadn’t gotten any worse.
“Take your baby aspirin, stay active, be healthy,” my doctor told me.
And that’s the only prescription I can live with.
