ICU delirium got a hold on me

If you’ve suffered from asthma for any length of time, and/or have been hospitalized for it, there’s a good chance you’ve experienced some of the not-so-pleasant side effects of corticosteroids—or even possible psychosis from spending time in the intensive care unit. Having been in and out of the hospital and on steroids for more than 6 decades, I’ve certainly had my share of strange side effects. But nothing comes close to what I experienced during a hospitalization a few weeks ago.

During that stay, I suffered not only major breathing problems but also full-blown paranoia, hallucinations, and roid rage. I fell into a very dark, frightening place and remained there for five days. What I experienced was truly a living nightmare. I’m a strong person who’s endured a lot with this disease, but this event deeply disturbed me. Writing about it and sharing it with others has been one of the ways I’ve been able to cope and move past it.

The following is my recollection of what took place during that hospitalization, along with a few pages from the official medical record documenting what they believed was happening from a clinical standpoint. It’s remarkable how different the two versions of this story are—depending on whether you’re looking in from the outside or looking out from the inside.

Admission to the hospital happened the way it usually does: through the emergency room doors. I came in with what I considered to be a moderately severe exacerbation that had been brewing for a few days and wasn’t getting any better. After being triaged and wheeled to a room, they started me on a standard treatment protocol of continuous nebs, IV steroids, and magnesium, and drew the usual labs—including blood cultures, an ABG, a chest X-ray, and an EKG.

Then began what I call the “wait-and-see game”—a familiar routine for anyone who’s dealt with severe asthma exacerbations. You wait to see whether the nebs and other treatments will kick in, which can take anywhere from one to thirty-six hours to reach a turning point. An hour into treatment, I felt about the same. After two hours, there was only slight improvement. At four hours, my breathing was actually getting worse. Another set of blood gases was drawn and sent off, and sure enough, my PCO2 was starting to climb. Another hour and another ABG later, my PCO? was still climbing, and my pH was starting to drop.

Without warning, they began moving me to one of the resuscitation rooms—which could only mean one thing: they were planning to intubate me. I gave them my usual spiel about past sedation issues and my reluctance to be intubated again. In return, they gave me theirs: if they didn’t intubate me, I could die. That hit hard. I realized I was sicker than I thought, so I agreed—but asked them to please make sure I was fully asleep.

When I came to, I had a breathing tube in my throat. Just as I’d feared, I was paralyzed and couldn’t move or react. It had happened again—just like during two previous admissions. I couldn’t believe it. Hadn’t they heard me when I warned them about my sedation issues?

I focused all my energy on trying to move my fingers to alert someone. Having gone through this before, I knew the paralytic drug would wear off in about 10–15 minutes—but let me tell you, ten minutes feels like an eternity when you’re paralyzed and can’t breathe. Eventually, I managed a slight movement, which caught the doctor’s attention. Her reaction: “You need to relax, Stephen.” And then, the kicker: “I hope you’re not awake in there!” (If she only knew.)

A few minutes later, I mercifully lost consciousness—and would remain so for the next two days.

As bad as it was to be awake and paralyzed during intubation, that was just the prelude to the real madness that followed.

Appx Fifty-six hours later, when it appeared I was doing better, they woke me up, let me breathe on my own for a while, and then extubated me. They must have moved me while I was asleep, because my surroundings looked completely different—I was now in one of the ICUs. It felt good to have the breathing tube out, especially because I could finally tell the doctors that I’d been awake again during the intubation.

They were sympathetic and explained that they couldn’t give me higher levels of sedation because my blood pressure had bottomed out. I appreciated that they at least took the time to listen to my complaint and were even a little apologetic about what I’d gone through.

So now that the tube was out and the worst seemed to be behind me, maybe things would turn around and Id start to feel better and could go home soon? ….. WRONG!  A couple hours after being extubated, I started getting short of breath and really tight again. They started me back on continuous nebs and wanted to put me on Bipap, but I only tolerated it for a few minutes because it felt like it was making my breathing worse. I remember getting really agitated at that point and telling the staff repeatedly that I couldn’t breathe. In an attempt to avoid another intubation, one of the doctors suggested we try ketamine (yes, the horse tranquilizer). I told her I had had this drug before and didn’t like the side effects (ketamine is also a potent bronchodilator,but it also makes you feel drunk and spaced out), but I told her that I would do anything if it would make my breathing easier. This is where my memory gets a little fuzzy. All I know (from reading the doctor’s notes) is that not too long after receiving the ketamine,  I was re-intubated, and shortly after that, I apparently went crazy. When I say crazy, I mean out of my mind crazy.

According to the medical staff, after being extubated the SECOND time, I started acting like a raving lunatic. Don’t ask me why, but apparently I was having a field day with the F-word and throwing a massive tantrum. I was yelling, hurling things at people, and saying very hurtful things to the nurses—and even to my loved one. Up to that point, they were doing their best to pacify me, but when I started pulling on my arterial line, the party was over.

Without telling me, they loaded me with Haldol—a drug that’s basically the chemical equivalent of a straightjacket. Along with wrist restraints, it stopped me cold in my tracks. But it also threw me into a completely different reality.

Though I believed I was alert and fully in control, the next three days were a descent into severe psychosis, paranoia, and delusion. I became convinced I was being held captive in a secret medical facility—staffed by some of the same doctors from the “real” hospital. This place, I imagined, was designed to house long-term critically ill patients, deliberately keeping them sick to profit from their suffering.

I was restrained in bed inside a self-contained pod, wrists tied down, with a nurse—or maybe a guard—stationed at a computer terminal just feet away, monitoring my every move. And the smell. I’ll never forget it. A sweet, citrusy antiseptic hung in the air, burning my eyes and making it harder to breathe. That part, at least, was real.

I knew escaping wouldn’t be easy, but I was convinced it was the only way to save my life. I studied the layout from my bed, tracked staff rotations, and fixated on an exit sign near a door about ten feet outside my room. I figured if I could reach that door—even naked in the street—I’d be rescued.

After what felt like an eternity, I saw my chance. The nurse stepped away, and I managed to wriggle out of my wrist restraints. Inch by inch, I slid toward the edge of the bed. What I hadn’t realized was that my Foley catheter was anchored not just to my thigh, but to the bed itself. I barely moved before the bed alarm blared and staff rushed in.

They were kind, but they knew I was trying to escape. I was re-sedated with more Haldol. I didn’t fall asleep, but I felt utterly defeated—convinced more than ever that they would never let me go.

But I refused to sit there and let them kill me. As the Haldol began to wear off, I started plotting another escape. In my psychotic state, I became convinced that the only thing keeping me trapped was the urinary catheter lodged in my bladder. So for the next twelve hours, I relentlessly pulled on it, injuring myself in the process. No matter how hard I tried, it wouldn’t budge. Without a knife or something sharp to cut the tubing, there was no way that thing was coming out.

Eventually, I abandoned that plan and came up with another—one that felt almost poetic in its irony. I decided to use psychology. Maybe if I befriended the staff, I could talk my way out. Surely there had to be at least one decent, caring person working in this godforsaken place. Every couple of hours, when the nurses came in to check my vitals, I’d tell them I was feeling much better and ask if I could sit up in a chair.

To my surprise, the male nurse caring for me said that might be possible—maybe even the next morning. Was he just trying to appease me? Could I trust him? At that point, I had nothing to lose. So I stayed calm through the night, striking up conversation every time he checked on me, trying to convince him I was truly improving.

Maybe my strategy was working, because the next morning, a different nurse came into my room and asked if I’d like to get out of bed and sit in a chair for a while. I was stunned. Should I seize the moment and make a run for it—or play it cool? Not that it mattered. My legs were so weak I couldn’t even stand, let alone walk or run.

A few minutes later, with help from another staff member, they pivoted me into a bedside chair. Before I could say anything, the nurse asked how I’d feel about having my arterial line and Foley catheter removed. I thought, Why are they being so nice to me all of a sudden? Maybe they actually felt sorry for me. Of course, I said yes. And I think it was in that moment that I began to question everything—maybe these people and this place weren’t as evil as I’d believed.

Still sitting in the chair, most of the tubes now gone, I suddenly found the courage to ask for a phone. I figured if they let me use one, maybe I was the one who was messed up—not them. They said, “Go ahead—your cell phone is on the table.” I couldn’t believe it. I tried calling my partner, Douglas, but I couldn’t remember our home number. The nurse dialed for me, and Doug answered.

I told him I was being held hostage and demanded to know why he wasn’t doing anything to help me. Why hadn’t he come to visit? He gently told me he’d been with me the entire time and had just gone home to shower and feed the cats. I couldn’t believe what I was hearing. Surely I’d know if he’d been there all along? I insisted that must have been before I was kidnapped.

That’s when he began telling me what had actually happened. I was stunned. Could I have imagined all of this? It felt so real—how could it not be?

As promised, Douglas returned to the hospital and stayed by my side all day. Still in a semi-fogged state, I listened as he recounted—hour by hour, day by day—everything that had actually happened. I felt disoriented and confused, but having him there grounded me. Slowly, the nightmare began to lift. Faces became more familiar, and the room started to resemble a real hospital again.

My pulmonologist, whom Douglas had contacted earlier in the week, stopped by with a team of doctors. He told me I’d been through a lot and admitted he was concerned about my mentation. He suspected the hallucinations and mental anguish were caused by the megadoses of steroids I’d been receiving. They had since reduced the dosage, and he reassured me that clearer thinking would return soon.

That evening, a room opened up in a step-down unit, and I was transferred there with a private sitter assigned to me. It felt like being reborn. You can’t imagine how good it felt to be in a normal hospital room again—even if someone had to share it with me to keep watch. The next day, after I managed to walk to the bathroom on my own, they discontinued the sitter.

My brain was still foggy, and my body was incredibly weak, but I was breathing better. The hallucinations and paranoia had faded. After five days in the ICU, they finally allowed me to eat again, which seemed to accelerate my mental recovery. There was light at the end of the tunnel. I wasn’t quite my “pre-hospital” self, but I was getting there.

Now, I consider myself a fairly intelligent and rational person—but this nightmare pulled me in, lock, stock, and barrel. I truly believed all the bizarre things I experienced were real. It took a full week after leaving the hospital before I could accept that what I thought had happened… hadn’t.

I was convinced there was a conspiracy to keep me sick and confined in a shady medical facility. It wasn’t until I was transferred to a regular hospital room that I began to realize those experiences were delusions. Embarrassed but curious, I shared my story with one of the doctors. She gently suggested I walk over to the ICU and look at the room I’d been in—maybe things would make more sense now that I was back to myself.

With help from one of the sitters, I took her up on the offer. But halfway down the ICU corridor, the “smell” of the place triggered a wave of unease. I paused, then walked a little farther and peeked into the room. There was a patient inside, and the room looked exactly as I remembered it—but the rest of the unit looked completely different. Just being in that space was unsettling, so we turned around and walked out.

Even now, back to normal, I’m not sure how I’ll handle it if I ever need to be admitted to that unit again. That’s how deeply this experience affected me. I’ve been on high-dose steroids before, and nothing like this ever happened. It’s possible this bout of psychosis was idiopathic—something we’ll never fully understand.

To be honest, even though I’m back to normal now, I’m not sure how I’ll handle it if I ever need to be admitted to that unit again. That’s how deeply this experience affected me. I’ve been on high-dose steroids many times before, and nothing like this had ever happened. There’s a possibility that this particular bout of psychosis was idiopathic—something we may never fully understand. People respond differently to medications, especially when the body is under extreme stress from labored breathing.

My doctors believe it was likely a perfect storm: the steroids, the powerful drugs, the respiratory failure, and the repeated intubations. Together, they triggered a cascade that led to what’s clinically known as ICU delirium—a condition marked by confusion, hallucinations, and disorientation that can strike critically ill patients. But ultimately, it was the asthma exacerbation itself that set everything in motion and pushed me over the edge.

The trauma of that experience lingered long after I left the hospital. It was so disturbing that I sought counseling, and I was eventually diagnosed with a form of post-traumatic stress disorder. Even now, the memory of those days feels surreal—like a dream I can’t quite shake. But sharing this story has helped me begin to heal, and I hope it helps others understand just how real and devastating ICU delirium can be.

As I mentioned in the opening paragraphs, there are two sides to this story. HERE are just a few of the 78 pages of official medical records from that hospitalization that will give you an idea of what was happening from the medical staff’s perspective.

While certainly a lifesaving drug for millions and millions of people, I think it’s important for others, including caregivers, to see the other side of the coin and witness the severe adverse psychological effects that high doses of steroids and other drugs used to treat severe asthma (and other diseases) can have on a person. Likewise, ICU delirium is a very real and apparently common problem, especially in older patients. Just another reason why we need more research into this phenomenon and better medications to treat this stinking disease. (Btw, I’m just glad my first escape attempt was unsuccessful because that door that I was fixated on is located on the 9th floor.)