Three Weeks in a Hospital
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.
Three Weeks in a Hospital, Part 2
Tuesday, July 12th, 2022: Stories, Three Weeks in a Hospital, Trouble.
YOU ARE GOING TO DIE!
Monday May 16
In the ICU, a new nurse stuck wired probes on my chest and index finger, and attached a remote-controlled blood pressure cuff around my bicep. These all ran to a monitor screen on a tall stand near the head of my bed, so that with a stiff neck and eye pain it was almost impossible for me to see. But when I did manage to read it, I eventually figured out which line graphs and values indicated my pulse, blood pressure, and blood oxygen level. I was able to sleep that night, but by morning, despite the oxygen tube in my nostrils, my blood oxygen continued to drop.
The Infectious Diseases team had now faded into the background, to be replaced by an even larger team of pulmonologists. And they, along with the nurses and technicians, were seriously freaked out. They scrambled to switch me to high-flow oxygen through a mask, and more technicians were brought in to give me regular treatments of bronchodilators, also through a mask. At midday on Monday, one of the young pulmonology interns said my blood oxygen had reached a low of 84, and it was likely that I would die, so he needed my authorization on “Full Code” measures – painfully attacking my body with various machines in a last-ditch attempt to save my life.
Of course, both my comprehension and judgement were seriously impaired by my condition. I remember reluctantly agreeing to Full Code, after which, standing in front of the dry-erase board at the foot of my bed, the young intern demanded the name and contact info for my Power of Attorney. Fumbling with my phone, I found my friend’s number, and as I spelled her unusual name, he erased the center of the board and recorded the info there in red ink in huge block letters. And for the next three days, peering past the mask that was barely keeping me alive, all I could see most of the time was that bold red message that to me signified “YOU ARE GOING TO DIE!”.
Tunnel to the Grave
Tuesday May 17 – Wednesday May 18
For two days, I lay there breathing through the mask, enduring the clamor of the airflow, waiting for the next bronchodilator treatment. Staring at the red warning on the whiteboard, wondering if I would survive.
But the breathing treatments began to work, and my blood oxygen gradually improved. On Wednesday morning the pulmonology team returned, and their leader said they needed to perform a bronchoscopy – the insertion of a viewing scope though my mouth, throat and trachea into my lungs. This is normally done under some form of sedation, and the doctor said he planned to use ketamine, which would leave me semi-conscious but would keep me “calm” during the somewhat uncomfortable procedure. He said I would probably recover full consciousness with no memory of the procedure.
This was one time when I was briefed about a scheduled procedure – the hospital patient is not always warned. Much of the time someone just shows up to take you away for a procedure ordered by an anonymous doctor without any warning or schedule. Within a few hours, the machine was wheeled in, and the medication was administered, as the entire team assembled around my bed. I lost consciousness of the room, and instantly entered the nightmare.
Suddenly, I was pushed undergound into a dim, rocky tunnel. Dead grey rock surrounded me as a relentless weight forced me ever deeper. Always facing me was a dark wall crudely hacked out of stone, and the tunnel spiralled constantly downward avoid it. I’ve always loved exploring caves and mines, but this was completely different. This was an involuntary end-of-life experience.
I’d left the world of the living far behind, and the weight and pressure on me increased as I was pushed deeper underground. As much as it twisted and turned, there were no exit routes from this tunnel of doom – it only led deeper and deeper, and the rock walls became rougher and dirtier, with piles of rubble at their feet. This living burial seemed to go on forever, but finally it came to a definitive end – a blank wall of rough stone with more grey dust and rubble at its feet. The heaviest weight clamped down on me. This was the end of my life – I would never leave this filthy stone tomb.
I woke to a semicircle of shocked, fearful faces. The machine was rushed out of my hospital room, the doctor following with his eyes averted. One of the young interns stayed behind and timidly approached my bed. “I’m so sorry!” he said. “It was terrible to watch! Your arms and legs were thrashing violently during the whole procedure…”
Hours later the pulmonology lead returned, and unusually, took a seat next to my bed. “I’d like to apologize for what happened today. What was it actually like for you?”
He shook his head gravely as I described what I’d experienced. “I don’t think you should ever use ketamine for this procedure,” I said. “I agree – it was a mistake, and I’m truly sorry for what you experienced,” he replied. “However, we found a large amount of fluid both inside and outside your lungs – about 4 liters in total – and soon, probably tomorrow, we need to extract and test some of this fluid. The procedure, thoracentesis, involves inserting a needle through your back, guided by ultrasound, and it can be done here in your room.”
Needle in the Back
Thursday May 19
It was my fourth day in the ICU. They’d replaced the high-flow oxygen mask with the low-flow tubes in my nostrils, and the Power of Attorney’s name and number in bold red letters on the whiteboard no longer shocked me. But all my original symptoms remained: high fever, eye pain, headache, neck pain, sweats that soaked my bedding and chills that made my legs shake uncontrollably.
I was still subject to multiple blood draws per day, one of the two IVs still dripped into my arm, a tangle of wires led from probes on my chest, finger, and bicep to the colorful monitor towering behind my right shoulder. And the pulmonology team wheeled another machine into the room, circling around my bed again to stick a needle through my back.
I asked again if it would hurt. “No, no, you’ll just feel a little pressure!”
I was learning their jargon. They couldn’t very well admit something would hurt. But when they did it, it felt just like someone was driving a thick needle through my back.
They extracted a plastic bag full of translucent pink liquid – blood in the fluid around my lungs, which they said was not surprising but could have several causes – yet another mystery.
At some point during the respiratory crisis, my 95-year-old mother surprised me by visiting. My brother, who uses a walker and is limited to short distances, drove her to the hospital’s front door, and from there she faced a long, complicated journey. For this first visit, an orderly met her in the lobby and brought her to me in a wheelchair, but on later visits she refused help and walked all the way alone, with her cane.
Roommate from Hell
Friday May 20
With my blood oxygen normal and stable and low-flow oxygen tubes still in my nostrils, I was moved out of the 6th floor private ICU room directly into its polar opposite: a small shared room in the general “Med-Surg” (Medical-Surgical) unit on the 4th floor.
A fabric curtain partially divided the room, leaving a narrow corridor at our feet. On either side of the curtain, our beds were only a couple of feet apart. There was a sink with a mirror at the foot of my bed, and at the foot of my roommate’s bed there was a doorway to our shared bathroom. He had the window; all I had was a blank wall.
Justin was 22, a pale, tallish kid with slack skin who said he’d recently lost 200 pounds and suffered from OCD. I could never figure out exactly why he was here – he was on painkillers and something for his kidneys or liver. He was from Bedford, a small city hours south of here, but said he’d grown up in Chicago and lived in Mississippi. He’d been hospitalized in Bedford, but had apparently been misdiagnosed, discharged, then relapsed and sent here.
Regardless, from my point of view his main problem was his behavior. He had a self-destructive lifestyle and seemed intent on dragging everyone else down with him. He began questioning me as soon as I arrived, pretending sympathy but using my responses as an excuse to complain exhaustingly about his mistreatment at the hands of nurses and doctors. He was ingratiating with any staff that happened to be in the room at the time, while condemning those who weren’t present. He kept trying to engage me in the same self-serving, whining one-sided conversations over and over, so that I lay in constant dread of when he’d call out to me next. Eventually, I either ignored him or gave only curt, non-committal responses.
But the worst was his TV. I don’t watch TV, and since entering the hospital I’d never even turned mine on. It actually stresses me out to be in a room where someone else has a TV on. But Justin had his TV on 24 hours a day, even while he was sleeping, and the vast majority of what he watched was cartoons, in which the characters were hyper and spoke in harsh, nasal, high-pitched voices. I couldn’t even avoid the visual distraction of his TV – half of it was visible from my bed, so I was constantly bathed in the flashing colors and had to keep my head averted. And despite having a window, he kept his overhead light on full-time, so the room was never dark.
At the time, miserable and befuddled, I thought the move to the shared room was some kind of mistake. I still needed intensive care, and I believe that episode with Justin slowed my recovery. I was still on oxygen, and still getting regular bronchodilator treatments through a mask, and after the first couple of days a nurse told me I needed to pee in a urinal instead of going to the bathroom, so they could collect and test my urine. Multiple blood draws per day continued, and I continued to beg for the VAT team to do them, because my poor forearms had become a battleground.
I still had all my original symptoms. I was regularly sweating through my bedding, then getting chilled, my legs spasming uncontrollably. My eyes and head hurt so bad I repeatedly called for a nurse to beg for pain relief, but after checking with some anonymous doctor, somewhere unknown to me, they said all they were allowed to give me was Tylenol.
The latest teams of specialists to arrive out of nowhere were the neurologists and rheumatologists. The neurologists came first, 4 or 5 of them, crowded together in the cramped space at the foot of my bed. After questioning me as thoroughly as the other teams, they left, and afterwards, with little or no warning, orderlies would arrive to wheel me away for new tests in the distant, windowless bowels of the complex. Next came a duo of rheumatologists, who said they would be looking for cancer and autoimmune problems.
Inflamed Optic Nerve
Saturday May 21 – Monday May 23
Whereas the nurses on the 6th floor had taken time to get to know me and were responsive and caring, the nurses here on the 4th floor seemed harried, distant, and indifferent. They either ignored my questions or gave me curt, incomplete responses. I later learned that anything over a patient load of six made a nurse’s life hell. Nurses chose jobs partly on the basis of average patient loads.
My departure from Mom’s house the previous Friday had been abrupt, and there were things I needed now that I hadn’t included in the daypack. Fortunately one of Mom’s young friends volunteered to bring me some stuff, so after several traumatic days surrounded only by strangers, I briefly had another familiar face to brighten the ordeal of that shared room.
I mentioned earlier that I’d brought my iPad, but from the beginning my eye pain and the accompanying headache had been so bad that I couldn’t read – nor could I write more than a few lines of notes in my notebook at a time. Whereas at the beginning I felt pain in both eyes, now it had localized to the left eye. The neurologists had ordered a new MRI – another trip to the basement – and this revealed inflammation of the optic nerve.
Opthalmologists were called in, senior and junior. After more questions, the junior one dilated my pupils and performed a detailed, painful eye exam. All was found to be normal.
The neurologists seemed to be on a roll – now that the focus had shifted from my lungs and the nervous system was clearly implicated in my condition, my story was their story. They badly wanted to put me on a series of high-dose steroids in an attempt to relieve the optic nerve inflammation. But the surgeon who had resurfaced my right hip 7 years ago had always prohibited systemic steroids, which bring a high likelihood of necrosis in the head of the femur.
From the bed in the shared room, I called my surgeon’s office in Seattle and left an urgent message. They said he was on the highway, returning from another facility; within a half hour he called me back in conference with an assistant. I tried to explain the neurologists’ position; the surgeon repeated his objections but said if it had to be done to solve an urgent problem, and if as expected it led to bone damage, he could always help me out with another surgery down the road – an ordeal I’d sworn never to repeat.
Who’s in Charge Here?
Tuesday May 24
Facing resistance to the high-dose steroid, the neurologists ordered a “lumbar puncture” to remove fluid from my spinal chord for further testing. Again I was told that this scary-sounding procedure would only result in “mild pressure”, but I was wise to them now. They said it could be done at my bed – in this tiny shared room? No thanks, I already had chronic pain in my lumbar spine and was recently recovered from a severe episode. I told them I could only go through it if my spine was fully stabilized.
This turned out to be the one procedure that was merely uncomfortable rather than painful. It showed HSV2 – the Herpes simplex virus, latent in 20% of the general population – as well as unidentified fungus in my spinal fluid, so they immediately put me on an antiviral through the IV drip, and sent the fungal sample out for culturing at a distant lab.
As if in punishment for my resistance to the steroid treatment, the neurologists ordered another MRI, this time focusing strictly on my left eye. An MRI may be uncomfortable, but seldom painful. This was the exception. The technician said it would take up to 90 minutes, but I could only last an hour before squeezing the bulb to stop the scan. I felt like a jackhammer was pounding my eye. The technician scolded me, saying I’d just have to come back the next day to redo the scan.
Meanwhile, a hepatology team – liver specialists – was brought in to investigate a white cell irregularity in my liver, revealed by blood draws. This led nowhere.
Inspired by my mom, who’d remained lucid and on top of her condition after her stroke, I was constantly struggling to follow what the doctors were saying and doing. From inside the brain fog, I was getting a stronger and stronger sense that I was being studied by a growing variety of teams, each with its own agenda. Each team would identify a symptom of primary concern from its own perspective and attempt to treat it, so that my case now consisted of specialist treatments of a series of symptoms of concern to strangers, while I continued to suffer from the symptoms that mattered most to me. Nobody knew what was wrong with me – did anyone have an overview of what was going on and what was being done? Was anyone actually supervising my care and providing overall guidance to these teams of specialists?
My vital signs continued to be taken every few hours, and after the respiratory crisis and the move to the shared room, my body temperature began to rise again, hovering in the 101s and 102s. So some anonymous doctor ordered a “cooling blanket”, which turned out to be a refrigerated pad that was placed under me on the bed and controlled via a large bedside console that circulated liquid coolant through hoses. This was great when I was having a sweat, but the rest of the time I was freezing, and begged my nurse to turn it down – which they steadfastly refused, saying it had to be maintained until my body temperature returned to normal.
Walking to the Garden
Wednesday May 25
After being on IV for a week and a half, and being forced to use a urinal while horizontal, peeing had become not just awkward but painful. At the same time the decision came down that my oxygen feed could be discontinued, someone decided I needed a catheter. Whereas the lumbar puncture had lived up to its prediction of “mild pressure”, the catheter placement was excruciating. But from then on, I never needed to pee – I was just dependent on nurses and technicians to empty the bag regularly, and I had to unhook and carry it with me if I got out of bed.
As the cooling blanket was gradually lowering my body temperature, blood draws revealed a low sodium value in my blood. So a nephrology team – kidney specialists – was brought in, and they put me on a restricted fluid intake, which the nurse promptly noted on the whiteboard beside my bed.
I was able to redo the eye MRI because I got a dose of extra strength tylenol before the procedure. I never learned what that test proved, or why it’d been necessary.
After four days on the cooling blanket, my body temperature returned to normal, and the chills – with the uncontrollable leg spasms – finally ended. And my neck pain vanished. Those were the first of the original symptoms that had been cured – after 1-1/2 weeks of hospitalization.
To my great relief, the cooling blanket was taken away. My blood sodium returned to normal after 3 days of fluid restriction. A lady from Physical Therapy showed up and took me for long walks, out of the stark Med-Surg unit, down to the brighter, more spacious and colorful 1st floor, past the cafe and the bistro, through a long vaulted corridor with glass walls to an intimate, secluded seating area facing a garden, where we rested and talked before heading back.
And under continuing pressure from the neurologists, I finally agreed to a 3-day series of high-dose IV prednisone for the optic nerve inflammation. Although I was still having heavy sweats several times a day, the eye pain and headache were now the worst of the symptoms, and I was still asking – as calmly and tactfully as possible – for stronger pain meds.
Three Weeks in a Hospital, Part 3
Tuesday, July 12th, 2022: Stories, Three Weeks in a Hospital, Trouble.
War on Pain Relief
Thursday May 26 – Sunday May 29:
Surprisingly, just as some of my symptoms disappeared and some of the more intensive treatments ended, I was finally moved out of the cramped shared room in the 4th floor general unit, to a private room in the Progressive Care Unit on the 6th floor. My eye and head were hurting too much for me to figure out why at the time, but a nurse did explain that the PCU was a “step-down” from the ICU, for patients who needed frequent attention but less intensive treatment.
Much later, as I began to comprehend the hospital system, I realized that the move from ICU to the shared room had probably occurred because they didn’t have any other option – they needed the ICU room for a more urgent case and there was nothing available in the PCU. The whole time I was suffering next to that self-destructive kid, dreading the next painful procedure and ignored or brushed off by the harried Med-Surg nurses, my hospitalist was simply waiting for a private room to open up in PCU.
During the past week, I’d been visited on a daily basis by a tall, young female doctor who seemed vaguely of Asian descent, but had a Spanish last name. I’d never figured out her role, and she seemed to have no relationship with the other specialties. But in PCU, I asked my new nurse who she was, and learned that all along, she’d been my hospitalist – the doctor who was supposed to have oversight of my case.
So the next time she arrived, I explained my confusion and concern, and asked for a review of everything that had been done and was being done by all the specialists. She relaxed in a chair at my bedside and asked me to describe what I knew already. And then smiled and said I was correct on all points – there were only a few things she needed to add. I liked her, but unfortunately she didn’t inspire any of the confidence I’d come to have in the senior specialists who’d dominated my care so far.
From the beginning, I’d made a relentless effort to cultivate good relationships with my nurses. After nearly two weeks, there’d been so many of them! Most of the younger ones turned out to be “travel nurses” who were taking advantage of high COVID-era pay rates to sign short-term contracts at hospitals all over the country.
But it hadn’t been easy. From the depths of my brain fog, I sometimes had to summon the rusty skills I’d once used leading professional teams in the tech industry, to keep the nurses from becoming my enemies. The biggest battle I faced was for pain meds. Under pressure from our society’s campaign against opioid addiction, which patients and many doctors experience as a misguided, puritanical War on Pain Relief, my nurses started out by claiming that nothing stronger than Tylenol was available. Then when, in my friendliest, calmest and most tactful manner, I revealed that I was aware of and had used stronger meds, they immediately assumed I was a devious addict trying to manipulate them. As nurses, the approval of stronger meds was out of their hands anyway – I would have to convince them to ask the hospitalist, so it was up to someone predisposed against me to convince someone I wasn’t allowed to talk to.
When I asked for pain relief, the nurse would always demand, “But what is your pain level?” As someone suffering from chronic pain from multiple sources for decades, I’ve learned how to use the universal 10-point scale with great precision, often as a tool in recovery and rehab. So far I had felt no discernable improvement from the IV steroid. After a couple days of that, plus Tylenol, the eye pain still ranged between 7 and 8 on the scale of 10. But after a week of my best negotiating and superhuman patience, something suddenly changed. The absent hospitalist abruptly relented and approved the pain relief I needed.
At first we tried 5 mg of oral oxycodone. This helped, but only by a couple of points on the scale, so finally, I was approved for a minimum dose of dilaudid – hydromorphone, one of the strongest pain meds – via IV. That finally did the trick.
Doses could only be administered at 6-hour intervals, but I was now allowed to specify which drug I needed at each dose. New nurses continued to give me a hard time, either treating me like a criminal or claiming the meds were ineffective. But over a period of several days alternating dilaudid and oxycodone as needed, my pain level subsided from 8 to 3. After two weeks of severe eye pain and headaches, I was finally getting some relief! My head cleared, and I could actually start to think again. I could tolerate light, and read my iPad. Finally I had something to occupy me during the hours I lay awake, alone in bed!
My 70th birthday came and went. One of the specialist doctors did notice, and in passing, briefly wished me a happy birthday.
Abandoned in Luxury
Monday May 30
Nurses began dropping hints that I was going to be moved again. I told the hospitalist that I couldn’t deal with a shared room, but when someone suddenly showed up to move me later that day, I ended up in a room with two beds.
I told the orderly that wouldn’t work, and was wheeled back into the hallway, where the “charge nurse” threw a fit, saying no one had told her I needed a private room. So my bed was parked in the hall for another half hour – after which I was wheeled into a huge, luxurious private room with a wall of windows. After 2 weeks, I had returned to the same unit I’d started out in, right after leaving the Emergency Department.
But after being moved I was left alone for what seemed like hours. There was no one to take my vital signs, give me scheduled meds and hook up my IV, perform the next scheduled blood draw. The whole unit seemed almost abandoned – eerily quiet, with little foot traffic in the hallway. I kept calling for help, getting more worried each time, until finally my new nurse arrived and said this unit was for patients who needed less attention.
The rooms as well as the hallways here were decorated in soothing pastel colors, with large-format nature photos framed under glass. My room had a big modern sofa and several large armchairs in like-new condition. And I had a large private bathroom with ornate tiled walls, where I could see for the first time, in the mirror, how much weight I’d lost, how much muscle. My skin was all wrinkled and hanging from my bones.
I continued to get sporadic visits from the infectious diseases and neurology teams. Test results continued to trickle back from distant labs. Everything except the HSV2 and fungus continued to test negative. The effectiveness of the steroid was ambiguous. I believed it was another mistake that had put me at future risk. But they hinted that I might need another lumbar puncture, to rule out autoimmune disorders.
Skin-Walking Nurse
Tuesday May 31 – Friday June 3
My Asian-Hispanic hospitalist announced that she was going on break, and her replacement would take care of me from now on. And the next day, when the replacement showed up, she said she was getting ready to discharge me!
I was shocked, and said so. The specialist teams hadn’t arrived at a diagnosis that would explain all my symptoms. The antibiotic, doxycycline, had run its course, but the antiviral, acyclovir – for the HSV2 in my spinal fluid – was still being administered daily via IV. My eye pain still needed strong main meds which would not be available at home. I was still sweating through my bedding every few hours.
The new hospitalist quickly backtracked. She would reach out to all the specialist teams, get them together for a conference, and determine what more needed to be done.
After the shift change that night, my new nurse arrived – a big man with black hair braided in a ponytail down his back. “You’re from New Mexico!” he exclaimed, reading my chart. “I’m from New Mexico!” He turned out to be a Navajo from south of Albuquerque, on contract here for another couple of months. This encounter was one of the few highlights of my hospitalization. So alone, so isolated, now I felt like I had an ally from back home. He was my night nurse for 4 or 5 nights, and he was an expert at blood draws, which continued to be scheduled throughout the day and night. One night when he woke me up for the 3 am draw, I complained that he’d taken me by surprise. “I creep around in the middle of the night,” he said. “I’m a skin walker!” – a Navajo demon.
As most people are aware, they never let you sleep through the night in a hospital – interruptions are always scheduled, from meds to blood draws. I have sporadic insomnia at home, and was usually able to catch up after most interruptions, but the biggest challenges were to maintain a friendly, accommodating attitude when awakened from a deep sleep at 2 am to have a needle stuck in my arm, and to quickly figure out a breakfast order when awakened by the food service rep after a near-sleepless night.
Now the pain was under control, I was reading books and streaming my favorite radio stations on the iPad, actually discovering new music and adding it to my notebook. And the nurses were digging it. As much as I resent our dependence on devices, I would’ve been lost in that institutional environment without the iPad.
Vague memories of the fiction of Kafka rose up in my recovering mind, and I spent several days researching the author online. It was clear that my experience had been Kafkaesque in the popular sense, but the research gave me deeper appreciation and respect for the complex but short-lived author.
Whereas throughout most of this illness my periodic sweats had started on my forehead and spread throughout my body, they were now focused on the back of my neck and the base of my spine. If I felt one coming on and got cold packs from the nurse soon enough, I could head off most of the uncomfortable sweating.
However, during most of this hospitalization I’d lost much of my control over hygiene and grooming. Nobody ever seemed to understand that I was sweating through my bedding and it needed to be changed at least daily. Nurses had occasionally wiped me down with antiseptic pads and brought me packets with toothpaste, toothbrush, and mouthwash that I tried to use at least twice a day. Midway through that stay in the awful shared room, I requested a razor and got up to shave for the first time in over a week.
But now, with not only a large bathroom but a pile of clean towels and washcloths, I could get really clean and shave as often as I liked.
After a week’s hiatus, the Physical Therapy folks found me again. I’d lost so much weight, so much muscle mass, and was so weak I didn’t know how I would ever regain my strength and capacity. “I climb mountains!” I kept reminding the therapists, afraid nobody in this low-elevation flatland would appreciate how much I had lost and would need to recover.
Our walks were now restricted to the small area of my current floor and unit, but at the halfway point there was a luxurious visitor’s lounge with a large aquarium featuring beautiful, flamboyant tropical fish, where we always stopped for a few minutes. And I really enjoyed getting to know my new therapist, a young woman from Saudi Arabia who was completing her education here before returning home with her family. As we watched the fish milling about behind their glass she confessed she was afraid of animals, especially dogs and cats – a healthy phobia in our pet-crazed social media world.
This Is Spinal Tap
Tuesday May 31 – Friday June 3
In response to the new hospitalist, the rheumatologists returned, continuing to question me and review blood results regarding possible sarcoidosis, a mysterious inflammatory disease that can affect multiple organs. But they could never find clear indications.
The neurologists did order another lumbar puncture to test for auto-immune problems and to see if the spinal fluid had changed. Being clear-headed at last, I was even more apprehensive, which got worse as day after day doctors and nurses predicted the puncture would be done that day, only to have it postponed yet again.
When an orderly finally arrived to take me to the basement, my mom had just shown up for a visit, after another of her heroic marathon walks the length of the massive complex. I could only wave and say I’d be right back.
Instead, I was taken to a curtained alcove in a larger room, where I lay abandoned, with no explanation, as technicians huddled across the dark room, their backs to me, gossiping around a computer monitor. Eventually I asked what was going on, and one of them explained the doctor I needed was driving over from another hospital.
After I’d waited an hour, the doctor arrived breathlessly, and I was given a 2-page form to initial in a dozen places as the doctor described all sorts of terrible things that could happen as a result of the procedure. I didn’t remember any of this from before. All I could think of was my poor mom, alone upstairs with no idea what was happening to me.
Finally they rolled me into the operating room, where a kid who looked like a teenage rock drummer started preparing me while behind my back, technicians fooled around with machines.
This went on for another hour, my stress rising to the breaking point. But when it happened, the procedure itself turned out to be anticlimactic – like before, uncomfortable rather than painful. My mom had left shortly before I returned to my room. She called later in tears – what a nightmare for her!
The results of the second lumbar puncture looked the same as the first, which the neurologists said was good news – things were not getting worse.
Final Days
Tuesday May 31 – Friday June 3
The physical therapist stopped coming, and during my final days in the hospital I walked around the unit alone, going faster and completing more circuits each time.
The young ophthalmologist returned to dilate my pupils and perform a final eye exam. He pronounced me normal except for a “weird texture” on my retina, about which he planned to consult some outside experts. But the exam itself drove my pain way back up the scale. I’d stopped needing dilaudid for the past couple of days, but now I had to go back on it.
A technician came to remove the catheter – a much easier experience than getting it put in. And finally, my sweats – the last of the original symptoms – simply stopped happening.
During the past few days I’d spent more and more time out of bed, either walking the halls or sitting up facing the outside world I hoped to re-enter soon. Despite still not knowing what had caused my illness, I was finally anxious to leave this place.
When we both agreed on discharge, the hospitalist arranged final summary visits from the neurology and infectious diseases teams. Both teams said the official diagnosis would be an HSV2 infection in the nervous system, but there was still no known explanation for all my symptoms, and they were still awaiting the results of many tests that took weeks to process. I learned for the first time that the female doctor on the neurology team was a subspecialist in neurological infectious diseases, and she gave me the name of a colleague at the Mayo Clinic in Phoenix for any potential follow-up. She said to continue to treat lingering eye pain with oxycodone and tylenol, and it should eventually end. And if any HSV2 symptoms recur, I should go back on the antiviral.
Return to Life
Saturday June 4
At the end, there were forms to fill out and leave with the nurse. I had prescriptions that needed to be filled at the hospital pharmacy and picked up by the nurse. I still had IV sites on both arms that I had to track the nurse down and beg to be removed. I had to change from a hospital robe into my street clothes, for the first time in three weeks, and wait for an orderly to take me to the front door in a wheelchair. I had to call my brother for a ride.
I’d been attacked by mysterious forces which might always remain unknown. Taken out of my life, I’d been swallowed by a giant institution where I was largely helpless while being studied, often painfully and sometimes traumatically, by countless strangers – specialists in infectious diseases, pulmonology, neurology, rheumatology, nephrology, hepatology, radiology.
For three weeks I’d had no future, living only in the present. The raw data from tests had been reviewed, processed and presented to the doctors by inexperienced interns, so there was no guarantee that all of what I’d heard was accurate. Now that I was being discharged, I didn’t know if I was truly over it, or if symptoms would come back after I returned home.
The pulmonologists, who’d inserted a probe in my lungs and a needle through my back, studying me intensively, had never found an explanation for my respiratory failure. As a result, their treatments had only addressed the symptoms, not the cause. But still, I’d recovered – why? Could it happen again?
The specialists in infectious diseases, neurology, and rheumatology, who’d subjected me to painful scans and dozens of blood draws, had found the Herpes Simplex Virus Type 2 in my spinal fluid – along with unidentified fungus. The virus could explain some, but not all, of my symptoms. They’d given me an antiviral, and while waiting to see if it helped, they’d tried to treat the fever with a cooling blanket and the pain with a high-dose steroid. The cooling blanket had worked but the steroid hadn’t relieved the pain, so finally I’d been given strong pain meds. The meds gradually brought the pain under control, so that after I was discharged, it remained manageable with weaker meds.
Was the pain now manageable because it was due to HSV2, and the antiviral was finally having an effect on the infection? No one could tell, but the infectious diseases neurologist warned that a recurrence was possible.
Leaving that hospital and riding to Mom’s house felt so strange – like being reborn, but as a much weaker and more vulnerable person. Would I survive? If so, how would I continue to change? Would any of those outstanding test results eventually come back positive, explaining my illness and raising new questions about my future?
I stayed at my mom’s house for 3 full days, resting and taking short walks, before taking on the daunting, all-day effort to travel back home alone. On those walks, I felt like a husk, a leaf, a feather, like a gust of wind could blow me away.
My 2020 house fire, and the continuing struggle to get everything back on track, should’ve proved that my life was largely out of my control, and could be ended without warning at any time. But apparently I needed still another, and more urgent, reminder.
Life is a miracle – let’s not waste it.
