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.
Damn Max-sorry for that horrible experience -and good job dealing with it-you know I tried ketamine for my fucker pain and yes scary stuff I have had 3 false diagnosis from inept doctors I hope life is better soon -try to do a full flush of your body – and be Max Strong