Three Weeks in a Hospital, Part 1
Tuesday, July 12th, 2022: Stories, Three Weeks in a Hospital, Trouble.
Beginning May 13, I spent three weeks in a hospital and came close to dying. I was studied intensively by dozens of doctors from many different specialties, but they never settled on a final diagnosis. This is my story, in three parts.
Dad’s Dementia
Columbus, Ohio, Mid-1990s
By the time he was my age, my father had lost the use of both hips. Like I am now, he was living in a small town far from the nearest big city. He arranged to be transported 120 miles to the state capital, again and again over a period of several years, to get hip replacements at the state university medical center.
During one of these hospitalizations, alone, far from the two sons who were his only surviving family members, he succumbed to a mysterious Legionnaires’-type disease, for which he remained confined for weeks. I remember him calling and quite lucidly describing how they had taken him to a remote, secret facility out in the country, where government doctors were experimenting on him. He sounded perfectly normal, in good spirits, joking about his predicament and how none of the staff seemed to take him seriously.
I called the nurses’ station at the hospital, and got a response from the hospitalist treating my dad, who assured me that temporary dementia was a normal side effect of his illness.
Hospitalization takes away almost all of the freedoms and rights we take for granted in normal life. In a hospital, things are done to us, sporadically at all times of day and night, usually without our consent, by strangers who often remain anonymous, forcing us into a state of helplessness, confusion and unreality. And apparently the notion of being taken away by authorities to a remote, secret facility to be tested like a guinea pig has long been part of the collective imagination of our culture.
Pain in the Back
Indianapolis, Indiana, Friday May 6, 2022
Taking a break from trying to fix my fire-damaged house and deer-damaged car, I’d traveled to Indianapolis to visit my mother and brother for a couple of weeks, while helping them in any way they needed. I took my mom out for breakfast at her favorite cafes, did some personal shopping, and started to clean their house and arrange for renovating the downstairs bathroom.
But four days after my arrival, I reached for something in the shower and was instantly paralyzed by an episode of severe lower back pain. As usual, I managed to shuffle out to the bedroom, take a pain pill, and carefully roll into bed, sliding a pillow under my lower back to stabilize my spine.
These episodes are unpredictable, but the heavy physical labor I’ve taken on is probably resulting in cumulative strain. There at my mom’s house, I self-medicated for the next few days while doing restorative stretching and taking short walks around the neighborhood. The pain always subsides within 2-3 weeks.
Pain in the Eyes
Tuesday May 10 – Friday May 13
By the following Tuesday, my back pain was fading, but I woke up with a stiff neck and it hurt to move my eyes. These were symptoms I’d never had in combination before, so I just took another pain pill and continued with my plans for the day, which involved driving around the city for hours running errands.
By the next morning the eye pain was accompanied by a general headache, and my forehead felt hot to the touch, so I took my temperature. It was normal. I took another pain pill and continued normal activity, hoping the strange symptoms would pass.
But by Thursday night I was also suffering from alternating sweats and chills, and at 2 am, unable to sleep, I measured my temperature at 102.7. I Googled this combination of symptoms and was quickly led to meningitis.
The city’s largest hospital, part of the state university healthcare network, was less than 2 miles away, and I was intimately familiar with it from many family visits during previous decades. Since despite the symptoms I was still physically competent, I drove, alone, to their Emergency Department.
Through the empty streets of the dark city, from my mom’s dense, tree-shadowed residential neighborhood to the sprawling institutional tract on the near northwest side, a wasteland of sprawling buildings anonymous at this time of night. The massive hospital complex, rising to 8 stories, spans dozens of city blocks. Committing myself to this faceless kingdom, I drove between outlying wings into the belly of the beast, where the ER entrance huddled as if crushed under the weight of all that concrete and steel.
The big, characterless waiting room, so familiar from previous family emergencies, was empty at this hour and they admitted me immediately, but now my temperature was back to normal. They took me to a tiny windowless room where I was quickly seen by an M.D. who asked me to touch my chin to my chest. I did and she said “You wouldn’t be able to do that if you had meningitis!” Without any further evaluation or testing she concluded that I had a mild virus and should treat the headaches, eye pain, stiff neck and fever with tylenol and it would all go away in a few days. So I drove back to Mom’s and managed to get a few hours of sleep.
Medical Emergency
Friday May 13
My symptoms got worse throughout Friday, until by late afternoon I was sweating through my clothes, then shivering uncontrollably. I took my temperature and it was 103.7. I couldn’t remember ever having such a high temperature and knew it was dangerous. I was now so weak that I called 911 for an ambulance. They had higher priority calls so despite our central location in the inner city, it took them a half hour to reach me.
What a difference from last night! In the strong light of late afternoon, rush hour clogged the city streets, shafts of sunlight flashing through the windows of the ambulance as it zigged and zagged on much the same path I’d driven alone not long before. Technicians rode on each side of me, taking vital signs.
At the hospital complex, we entered an unfamiliar tunnel that bored into the depths, pausing at a glassed-in security office, finally stopping at a double door where an orderly helped me into a wheelchair and pushed me down a series of hallways and finally back out into the waiting room I’d left earlier that morning. It was now packed with people.
When they checked me in for the second time, my temperature had dropped a little to 103.2. My brother had driven over to join me, and beside him, nodding in my wheelchair, surrounded by dozens of other sufferers and their families, I waited 90 minutes before being called to a room, as my fever crept back upwards.
As soon as I’d donned a gown and collapsed onto the rolling bed in the tiny, windowless room, the formidable medical apparatus switched into high gear. A nurse arrived to question me, another came to draw my blood, and a doctor arrived with more questions. I was found to be severely dehydrated and was put on intravenous saline, plus an antibiotic for good measure.
The fever and headache had left me in a brain fog, unable to fully register, track, or understand what was happening to me. But I remember a machine being brought in to give me a chest x-ray, then my bed being wheeled to another part of the hospital for an MRI of neck and abdomen, then a CT scan of my brain. Back in the tiny room probes were attached to my chest for an EKG, and more blood was drawn from the arm opposite the one that already had an IV line attached.
The doctor returned at some vague hour to admit the tests were inconclusive and they still had no idea what was wrong with me. They were trying to get a room for me at University Hospital, their research and teaching facility across town where “difficult cases” like mine are handled.
I lay in that windowless room all through the night and long into the next day, alternately sweating and shivering, awkwardly peeing into a plastic urinal bottle, waiting for someone to come and move me. Nurses and technicians continued to come and go sporadically, taking more blood, checking vital signs and the status of the IV. I had to ask each of them to turn off the bright ceiling lights as they hurried out.
Hospitalization
University Hospital, Indianapolis, Saturday May 14
After 18 hours in the Emergency Department, a new team of orderlies arrived to roll me back through the maze of hallways to the tunnel where another ambulance waited. I was driven briefly out into the bright world, and only a mile farther across freeways and more institutional tracts to the new hospital, part of an equally vast but only 6-story-tall complex.
Inside another dim tunnel, another new orderly helped me out of the ambulance and into another narrow bed and rolled me through an even longer maze of hallways and elevators up to the top floor, where I was overjoyed to find myself in a large, relatively luxurious private room with a window, where I could see a slice of sky above the featureless wall of an adjoining building.
The IV had been temporarily left behind. My new nurse gave me tylenol for the eye pain, headache, and fever. Then the first team of doctors arrived to study me: Infectious Diseases specialists, with two senior MDs and a couple of interns, all standing in a semicircle around the foot of my bed.
One of the doctors explained that since I was recently arrived from New Mexico, they were concerned about mosquito- and tick-borne diseases as well as hantavirus and coccidioidomycosis, a fungal disease popularly known as Valley Fever which is endemic to the Southwest. They questioned me thoroughly and I answered as best I could considering the ongoing brain fog. They put me on a second antibiotic, doxycycline via IV, and ordered another battery of tests, some of which seemed to duplicate those I’d had in the ER.
I was in a “unit” of the hospital somewhere between intensive care and the general wards. I was left alone for hours at a time in that big, quiet room. I felt like Jonah swallowed into the belly of the whale. After the long, delirious, and exhausting night in the ER, I was feeling terribly disoriented, helpless, isolated and lonely. With his mobility problems, my brother couldn’t visit me, and I didn’t think my mom could either. Like my dad with his mystery disease, I’d suddenly and almost completely lost control of my life. There was no one who could help me or make decisions while I floated in this brain fog – or if I lost consciousness completely. Strangers were now in charge – I had no option but to trust people who didn’t know me, for whom I was just one of many short-term strangers temporarily in their care.
I’d left Mom’s place on Friday with a daypack containing my phone, iPad, and both chargers, so I called my oldest friend from high school. He’d just returned from the city to our hometown 45 minutes south, but he immediately agreed to hop in the car and come visit. It was wonderful to see him and we spent several hours chatting. A patient surrounded by strangers always feels that visiting family and friends will prove to the technicians, nurses, and doctors that other people care about you – hence they should, too.
At a time like this, there’s no substitute for the physical presence of people who know you and care about you. But if that’s not possible, the human voice is the next best thing. I like to think my friends are enlightened, but when someone you know has been traumatized, you don’t send them an email saying you’re sorry.
Throughout my hospitalization, I was able to talk with my mother – and one other old friend – by phone every day. And there were two others who regularly called, showing they cared and were concerned. Without these I would’ve been lost.
Respiratory Crisis
Sunday May 15
That weekend stay in the big, quiet room on the 6th floor was in many ways a misleading false start to my hospitalization. It had a large ensuite bathroom, so initially I was able to get up to pee, until a nurse caught me and said I should stay in bed and use the urinal.
Despite wide differences between hospital units and rooms, every room had a networked monitor and keyboard for the nurse, and a small dry-erase board which they were supposed to update each shift with names and special instructions (but often didn’t). The bed had a call-for-help button, a landline phone, a remote for lights and TV, and controls to raise and lower the bed’s head and foot. There was always a rolling, cantilevered table that with great difficulty could be raised, lowered, and made to overlap the bed, holding my personal stuff, food and drink.
The door to my room could be open or closed at my request. When it was open I always had a view of the hallway outside, along which passed a sporadic but never-ending parade of anonymous strangers, and occasionally a familiar nurse or doctor. I was given a food menu, and an orderly peeked in three times a day to ask for my meal orders – or if I could keep track of kitchen hours, I could call an order in myself.
By reading between the lines and experimenting, I gradually learned what was edible – oatmeal, yogurt, and berries for breakfast, and the turkey taco salad, the chicken quesadilla, or the grilled salmon at other times. There were a few times when meal orders simply never arrived. The nursing unit only stocked inedible puddings, but once I got lucky and my nurse went down to the late-night deli on the 1st floor and got me a sandwich.
Each meal automatically included two bottles of Ensure, which I usually ignored because I could barely stand to drink it. In retrospect I think I would’ve lost less weight if I’d drunk the Ensure.
Nurses worked 12-hour shifts, with shift change at 7 am and 7 pm. I had to learn that help was virtually unavailable – no one would respond to my calls – for an hour after shift change, as the new nurse caught up with things left undone by the previous shift.
Apart from blood draws, the new tests were slow getting started due to the weekend. But blood draws were getting harder because I’d already had so many that the nurses couldn’t find a good vein – one of them said I had too many valves. After 3 unsuccessful but painful tries, one nurse called in the “VAT team” (Vascular Access Team), a roving duo of technicians who use an ultrasound monitor to find precise locations for blood draws and IVs. They did it painlessly, and also put in a new and more reliable IV. From then on, I would beg for the VAT team, not always successfully since the nurses were often offended that I didn’t trust them.
IV sites are left in for a week or more, during which nurses try more or less successfully to use them to deliver intravenous fluids and doses of medicine, and to draw blood. They involve a tiny catheter running inside your vein, which is secured on the skin of your arm by layers of tape. As the days go by, a poorly installed IV will lose its ability to draw blood, but may remain capable of delivering fluids. After arriving in the hospital, I always had one IV site in each arm, and blood draws typically had to be done elsewhere on the arms.
By late Sunday afternoon I was having trouble breathing. First, they put me on a low-flow oxygen feed, with tubes in my nostrils. Then overnight, they arranged to move me to the Intensive Care Unit on the same floor. That was when the real hospital experience began, and my life hung in the balance.