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 to 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.
