If you’ve suffered from asthma for any length of time and/or have been hospitalized for it, no doubt you’ve experienced some of the not so pleasant side effects of corticosteroids, both physical and mental.
Being on and off steroids most of my life, I’ve certainly had my share of nasty side effects. But nothing comes even 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, paranoid, hallucinatory, roid rage. I fell into a very a dark scary place and remained there for 5 days. What I experienced was truly a living nightmare. Im a strong person who’s endured a lot with this disease, but this event was very disturbing to me. Writing about it and sharing it with others is one of the ways I’ve been able to cope and get past it.
The following is my recollection of what took place during that hospitalization, along with a few pages of the official medical record documenting what was happening from a clinical standpoint. It’s amazing 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 only a moderately severe exacerbation that had been brewing for a few days and not getting any better. After being triaged and wheelchaired 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 xray and an EKG. Then began the wait and see game began. An hour into treatment I felt about the same. After 2 hours only a slight improvement. At 4 hours my breathing is actually feeling worse. Another set of blood gases were drawn and sent off, and sure enough my PCO2 was starting to climb. Another hour and another ABG later, my PCO2 is still climbing and my Ph is starting to drop.
Next thing I know they’re moving me to one of the resuscitation rooms, which means only one thing… they’re planning to intubate me. I gave them the spiel about how Ive had sedation problems during intubations in the past and that I was reluctant to be intubated again because of it. In return, they gave me the spiel about how I could die if they didn’t intubate me. Wow, I guess I was sicker than I thought, so I said OK , but told them to please make sure I was asleep.
The next thing I know, Im lying there with breathing tube in my throat, but just as I had feared, I was paralyzed and couldn’t move or react. YUP, it happened again ( it happened twice during previous admissions). I couldn’t believe it. Didn’t they hear me when I told them I had sedation issues???? So anyway, I kept my focus on trying to move my fingers to alert someone. Having gone through this twice before, I knew the paralytic drug would wear off in about 10-15 minutes, but let me tell you that 10 minutes seems like an eternity when you’re paralyzed and can’t breath. Eventually I was able to move my fingers a little bit, which caught the doctor’s attention. Her reaction was ” You need to relax Stephen”. And here’s the funny part… “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 2 days.
Ok, so as bad as it was being awake again during an intubation, this was only the prelude to the major craziness that would follow.
When it appeared that I was doing better, they woke me up, let breath on my own for a while and then extubated me. They must have moved me while I was asleep, because my surroundings appeared a lot different…I was now in one of the ICUs. It was good to have the breathing tube out, because I was finally able to tell the doctors about being awake again during the intubation. They were sympathetic, but explained that they couldn’t give me higher levels of sedation because my blood pressure had bottomed out. I appreciate that they at least they took the time to listen to my complaint and were even a little apologetic for what I had 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 telling the staff repeatedly that I couldn’t breath. In an attempt to avoid another intubation, one of the doctors suggested we try Ketamine (Yup, 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 doctors 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 medical staff, after being extubated the 2nd 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 was throwing a huge tantrum. I was yelling and throwing things at people. I was saying very hurtful stuff to the Nurses and even to my loved one. Up to this point they were pacifying me the best they could, but when I started pulling on my arterial-line, the party was over. Without telling me, they loaded me with the drug Haldol, which is basically a chemical version of straight jacket. Along with wrist restraints, it stopped me cold in my tracks, but it also threw me into a different reality.
For the next 3 days, and without knowing it, I suffered severe psychosis, paranoia and delusions. I thought I was being held captive by a secret medical facility run by the some of the same doctors who took care of me in the “real” hospital. This facility was used to house long term critically ill patients for the local hospital, but they would deliberately keep these patients sick, so that they could make more money. I was kept in bed with my wrists tied, in a self-maintained pod. There was a nurse/guard who sat at a computer terminal right in front of my pod observing my every move. Oh, and the smell. I’ll never forget it. It was awful.The place reeked of a sweet citrus smelling antiseptic, which was burning my eyes and making it more difficult to breath ( this smell was actually real).
I knew it would be very difficult, but in order to save my life I had to get out of this place. I had to alert the Police about what was going on in here. Hour after hour I sat there planning my escape. I carefully examined the layout of the place the best I could from my vantage point in bed and kept track of when people went on and off duty. I noticed an exit sign near a door about 10 feet outside of my room where the staff came and went. I figured that door probably led to the street. I knew if I could make it out of the front door, Id be OK. Even if I had to run out naked into the streets, it would catch someones attention and I would be saved.
It seemed like an eternity, but I waited for just the right moment for the nurse/guard to step away for a restroom break and finally got the nerve to go for it. I managed to wiggle out my wrist restraints and started to inch over to the side of bed. What I didn’t realize, is that my foley catheter was actually anchored not only to my thigh, but also to the bed itself. Obviously I didn’t make it very far, and as I shifted my weight back into the bed, the bed alarm went off and people started rushing into my room. They were nice about it, but could see that I was trying to escape, so they re-sedated me with more Haldol. I never fell asleep, but I remember feeling totally defeated and hopeless about my situation. I was convinced now more than ever, that they were never gonna let me go.
But I refused to sit there and let them kill me, so as the Haldol wore off I started planning another escape. In my psychotic state, I came to the conclusion that the only thing preventing me from escaping was the urinary catheter in my bladder. So, for the next 12 hours I continually pulled on it out hoping it would come out (injuring myself in the process), but no matter how hard I tried, it wouldn’t budge. Without a knife or something sharp to cut the tube with, there was no way that thing was leaving my body. I eventually abandoned that idea and came up with yet another. Talk about the irony of ironies, this time I thought, why not use some psychology on them?
I thought maybe if I befriended the staff, that maybe I could talk my way out. Surely there had to be at least one normal caring person working in this god forsaken place. So every couple hours when the nurses came in to check my vitals, I would tell them that I was feeling a lot better, and would it be possible for me to sit up in a chair? To my surprise, the male taking care me said that this would eventually happen…perhaps even as soon as following morning. But, was he just saying this to appease me? Could I actually trust him? At this point I had nothing to lose, so I remained calm the rest of the night and tried to strike up a conversation every time he’d check on me just to convince him that I was indeed doing better.
Maybe this strategy was working, because the following morning a different person came into my room and asked me if I would like to get out of the bed and sit in a chair for a while. Wow, should I take this opportunity to make a run for it or should I play it cool? Well, even if I had the chance to escape, my legs were so weak I couldn’t even stand up, let alone walk or run. A few minutes later with the help of another person they pivoted me into a bedside chair. Before I could say anything, the Nurse looked at me and asked how I would feel about having my arterial line and foley catheter removed? I thought to myself, why are they being so nice to me all of a sudden? Maybe they actually felt sorry for me. Of course I said yes to taking the tubes out. I think it was as this point, that I started to realize that maybe these people and this place wasnt as evil as I originally thought.
While still sitting in the chair with most of the tubes taken out, I got the sudden courage to ask for a phone. I figured that if they agreed to let me use a phone, that maybe it was me that was screwed up and not them. They said go ahead, your cell phone is on the table. I couldn’t believe it. I tried to call my partner Douglas, but couldn’t remember my own home number, so the Nurse dialed for me and Doug answered. I told him that I was being held hostage in this place and why wasn’t he doing anything about it. I asked him why didn’t he come to visit me? He told me that he had been with me the entire time and had just went home to take a shower and feed the cats. I couldn’t believe what he was telling me. Surely I would know if he was there with me all this time? I told him that that must have been before I was kidnapped. It was then that he told me what had actually occurred in the hospital. I was stunned by what he was telling me. Could I have imagined all of this? It seemed so real, how is it possible?
As promised he came back to the hospital and sat with me all day. Still in a semi stupor I listened as he recounted hour by hour, day by day, everything that had actually occurred. I felt so confused, but having him at my bedside, I was slowly emerging from this nightmare. Faces were becoming more and more recognizable and the surrounding were starting to look more like a real hospital room. My pulmonologist, whom my partner had called earlier in the week, stopped by my room with some other doctors and told me that I had been through a lot, and that he was a little worried about my mentation. He told be that he thought it was megadoses of steroids they were giving me that was causing the hallucinations and mental anguish. He told me that they had cut the dosage way down and that it shouldn’t be too long before I started thinking more clearly.
Later that same evening a room became available and I was transferred to a step-down unit where they assigned a private sitter to be with me. I felt like I was reborn again. You can’t believe how good it felt to be back in a normal hospital room, even if it meant someone sharing the room with me so they could keep and eye on me. The following day after observing that I was able to make it to the bathroom on my own, they discontinued the sitter. My brain was still in a fog and my body extremely weak, but I was breathing a lot better and was no longer hallucinating or paranoid. After 5 days in the intensive care unit, they allowed me to start eating again as well, which seemed to speed up my brain recovery even faster. Finally,there was light at the end of the tunnel. I still wasnt my “pre” hospital self, but I was getting there.
Now, I consider myself a fairly intelligent and rationale person, but this nightmare sucked me in, lock stock and barrel. And I truly believed that all this weird stuff was actually happening to me. In fact, it took me a full week after leaving the hospital, before I could accept that what I thought happened to me, actually didn’t. I was convinced that there was some sort of conspiracy going on to keep me sick and confined in this shady medical facility. It wasnt until I was transferred to that regular hospital room that what I had thought I had experienced, were indeed delusions. Embarrassingly, I told my story to one of the doctors and she suggested I walk over to the ICU and take a look at the room I had been in to see if things made more sense now that I was back to my normal self.
Walking with the help of one of the sitters who was looking after me, I took her up on the offer, but only made it halfway down the ICU corridor when the “smell” of the place triggered some uneasy feelings. After a pause I walked a little farther and peeked into the room I had been in.Though there was a patient in it, the room looked just the way I remembered it, yet the rest of the unit looked totally different. Just being in that space was actually freaking me out a little, so we turned around and walked out. To be honest, even though Im back to normal now, Im not sure how Im gonna handle it if I need to admitted to that unit again in the future. Seriously that’s how bad this has effected me.
Ive been on tons of steroids before and this has never happened. There’s a possibility that this particular bout of psychosis was idiopathic in nature and that we’ll never know the cause. People respond differently to different medications, especially when the body is stressed from labored breathing. My doctors think it was probably the steroids in combination with all the powerful drugs I was receiving, along with the respiratory failure and intubations that made me briefly loose touch with reality. But ultimately, it was the asthma exacerbation itself that triggered the chain of events which pushed me over the edge.
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 million 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 dose of steroids and other drugs used to treat severe asthma (and other disease) can have on a person. Just another reason why we need more research and better medications to treat this stinking disease.
(Btw, Im just glad my first escape attempt was unsuccessful, because that door that I was fixated on, is located on the 9th floor.)