A couple of weeks ago, I had tuberculosis. It only lasted a few days, but that was enough to give me a taste of what it’s like.
It started with a visit to my primary-care physician to get help for a variety of symptoms that I had been ignoring. I was taught early on that boys don’t cry. By extension, adult boys don’t see doctors until they feel real bad, which is how I felt when I persuaded my doctor’s clerk to give me a same-day appointment. Later, I learned what good fortune that timing was.
The doctor took a look at a list of my complaints, drugs I was taking, allergies, and a bit of background information that I’d printed for him, then after the usual questions and answers and preliminaries, he got right to it. “I’m really concerned about you,” followed a bit later by, “I’m worried about you,” and finally, “I don’t know what’s wrong with you.”
Some patients might not have liked hearing those things, especially the last. Not me. I found them most welcome. I had no relationship with this doctor. I’d only seen him once – an introductory visit several months earlier. But with those few words, he’d shown himself to be compassionate and unpretentious, qualities one might or might not find in a new doctor. (His technical expertise was never in question; I’d checked his bona fides before becoming his patient.)
At the end of the examination, he put his hand on my shoulder – an act of curative power in itself – and said, “Don’t worry. We’re going to get you well.” Then it was off to the end of the hall to put some of my blood into chicken broth to see what grew and to have a couple of x-rays.
By the time Ann had driven me home, a voicemail was waiting. “I showed your chest x-rays to one of my partners, a pulmonary disease specialist. You have a cavitary lesion on your right lung. It’s consistent with tuberculosis. You need to go to the emergency room at Seton Hospital where they have negative-pressure rooms.” I didn’t know what those were, but they didn’t sound painful.
On the way, I imagined that I might be given a bell to ring and a sign to hang around my neck that said “unclean.” But that was leprosy, wasn’t it? Never mind. TB treatment had its own peculiarities.
A guy at a computer keyboard started things off with, “Why are you here?” That seemed an odd question. It made me feel unworthy, like I was supposed to have a gunshot wound or a compound fracture or something. Anyway, I’m pretty sure he knew why I was there. My doctor would surely have provided him with a hint or two; he wouldn’t have left me to talk my way in.
I was tempted to lean over his keyboard, exhale all over him, and say, “I have TB,” but I didn’t. Instead, I played my doctor’s vm for him. That got things moving.
He handed me a mask. Maybe it kept me from spreading pestilence, but I doubt it. It was flimsy and leaked germs with every breath.
After some time sitting in a chair way across the room from the guy at the computer and providing information of a more business than medical sort, I was invited to lie on a gurney for a ride to what felt like a holding cell down in the hospital basement.
I gave blood and urine so that the exact same tests could be run that had been done an hour and a half earlier at the doctor’s office. I was pretty sick, but not too sick to reflect on this.
Understandably, one institution would not want to rely on an analysis done by another, if the first institution is, say, a field hospital in a refugee camp, but the two institutions in my case were right next door to each other, and the medical personnel involved were so similarly trained and licensed as to be virtually fungible. Surely a trusting (and money-saving) cooperative arrangement was possible.
Two disincentives get in the way: those pesky tort lawyers who provide such handy excuses for unnecessary practices, and money. Insurance (or the hapless uninsured patients themselves) will pay for duplication, so why pass up the revenue? Maybe science and technology play a role too, but I’m skeptical about how much.
A nurse performed a warmup act for FAQ sessions that would follow. She may have helped to figure out what was wrong with me, but she seemed to be more of a place holder.
I offered her a copy of the well-crafted bill of fare I’d prepared for my doctor. I might as well have been holding out a nice warm stool specimen. Nothing would do but for me to speak my medical history and allergies and so on. That’s how it went with every care provider I encountered during the next few days. Who knew that being a hospital patient had so much performance art in it? Were they trying to catch me out in inconsistencies? Had they been trained in nursing and medical schools for the dyslectic? After a while, my helpful document looked like a used Kleenex.
Next in line was junior, a Physician’s Assistant. “Why are you here?” he asked. I held out my typo-free, well-crafted history of symptoms. Nothing doing, even though I had by then highlighted my blood pressure record, which had been around 95/65 for the past few days. I managed, somehow, not to say, “Look, I’m really sick. Do you think it would it be possible for me to see an actual doctor?”
I started my recitation with a stage sigh to show Junior my displeasure. Ann made a few edits as I went along. She was entitled to that; except for the parts I had protected her from over the past couple of weeks, she had lived what I was performing. At some point, we switched roles. She took stage-center, and I commented.
I was told that a Dr. Arthur, aka “the night guy,” would be along soon. I was also told that he didn’t think I had TB. How did he know that? He hadn’t examined me. All he knew about me was what he’d gleaned from my primary-care doctor’s notes. I didn’t like that. I hadn’t been sent to the ER to have somebody I didn’t know and hadn’t even seen overrule my doctor. And that was just the beginning.
The night guy would be followed by a string of other doctors I didn’t know – three internists in addition to the night guy, a pulmonologist, a urologist, a radiologist, an interventionist radiologist, and an infectious disease specialist. Each of them would have an opinion about what was wrong with me and how to fix it, and they didn’t always agree. (One of them pronounced – in passing – that the lesion on my lung was “probably malignant” and that my swollen testicle would require removal.) Upon crossing the threshold into the ER, I had without knowing it agreed to this way of doing things. That’s how it goes in big hospitals.
I am grateful for their care, of course – I went in quite ill and came out on the mend – but I do have reservations about the system they operated in. How hard would it have been to alert me at the door about how being a hospital patient was going to play out and who would be seeing to my care? At least the physicians could have worn lab coats bearing name and specialty. The repeated appearance at my bedside of some stranger in street clothes just didn’t have the health-giving effect of someone who was dressed like a doctor. On sight, they were indistinguishable from the Human Resources person and the woman taking food orders.
Meanwhile, a young man in a hazmat suit came to get me. He handed me a more substantial mask. It had a duck bill and extended from under my chin up to my eyes. I doubt it was much more effective than the flimsy one I was already wearing, since my glasses fogged up with every breath.
He pushed me out into a common area where there were some people pecking at computer terminals and others sort of just standing around and a nurses’s station. It didn’t seem much like an emergency room. No blood on the floor. No EMTs racing the wounded in from ambulances. No shouts of “CLEAR.” I was disappointed. If I was going to be an ER patient, I wanted all the attendant drama like on television. But business is slow on early Tuesday evening.
From there, hazmat guy rolled me through a maze of corridors to a room where I had a CT scan. The scan only took a few minutes, but afterward the room was taken out of service for two hours lest someone go in and catch TB. I wondered how the Medicare billing went for that. There was probably a nine-digit code for “loss of revenue due to quarantine of examination room.”
Some while after returning to my basement cell, the night guy came by. He let me know again that he didn’t think I had TB. We’d know more after getting results of the CT scan, but until then, we’d proceed as if I did have it.
I was taken up to a negative-pressure room. It turned out to be a room in which the air was pushed out into the atmosphere instead of seeping back into the hospital at large. Also, anyone entering had to put on a mask and wait a minute or two in an ante-room that served as a sort of air lock. For a time, visitors would also put on hazmat suits, but for some reason, that practice was soon abandoned. Ann never did have to suit up or even put on a mask, though she did have to stop in the air lock. We would wave at each other through the glass door. It made me think of the “boy in the bubble” pictures from years earlier. “Old fart in the bubble” doesn’t have the same ring to it, but it’s all I’ve been able to come up with.
After a couple of days, it was established that I didn’t have TB. What I did have was a collection of serious problems that in the beginning seemed like TB. For blood kin and the boundlessly curious, here are the details. I had a lesion on a lung (that turned out to to be harmless), a magnificently swollen testicle (send three box tops and $.19 for an 8 x 10, autographed photo), kidneys that were trying to quit, and internal systems like those of malnourished people in South Sudan — all the result of a treatable blood and urinary tract infection called pseudomonas. What caused it was not clear, though perhaps it was because my immune system had been compromised for a while by a steroid I was taking for back trouble. What was clear was that if I’d been a day later getting treatment, general sepsis would have had its way with me, and in my doctor’s words, “[I] wouldn’t have lasted a week.”
* * *
I’m as grateful as I can be for the treatment – especially the outcome. But I can’t leave off without a comment on the American way of paying for health care.
My treatment cost more than it had to and far more than it would have in other countries. I have Medicare and supplemental insurance so there was never a question about whether I could afford it.
Ann is not old enough for Medicare, and the private insurance for which she pays $1197.89 a month amounts to little more than catastrophic-care coverage. Many providers will not accept it. If she had been in my place, our out-of-pocket cost would have been far greater than what I paid.
Uninsured Americans would likely have incurred crushing indebtedness.
Medicaid, limited as it is, comes in fifty varieties – one for each state – and the details of it are beyond what I’ve been able to research in a reasonable period of time.
We are a wealthy nation. Medical care does not have to be this way. It should not be.