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For decades, we have culturally passed on the myth that patients are sleeping while sedated into medically induced comas. We have assured ourselves and each other that sedation “prevents PTSD”. Research has proven that sedation makes true restorative sleep impossible and real recall of the reality of the ICU is protective against post-ICU PTSD. So what is really happening under sedation? If patients are not in sweet oblivion and restful slumber, what is their reality? Chuck Evans joins us to share his startling story of being sedated and sleepless for weeks in the ICU.

Episode Transcription

Kali Dayton 0:03
Chuck, welcome to the podcast. Can you introduce yourself to our listeners?

Chuck Evans 0:07
Yeah, my name is Chuck Evans. I am 37 years old and been married to my wife Becky for about 12 years now we’ve got two great kids. And yeah, I’m a I’m a PhD student with Baptist Bible seminary and have been in pastoral ministry and higher Christian ED for a while.

Kali Dayton 0:35
Wow, impressive resume, great life. Now you’re an ICU survivor, what led you to be in the ICU, you’re 37 You look really healthy.

Chuck Evans 0:47
Thanks. So I had COVID. And I was part of the point .001%, that had a strong reaction as I did. And my wife text me one day, she said, Hey, that headache that I had been nursing, I tested positive for COVID. So I grabbed my computer and came home from work.

And I ended up getting it because I was taking care of the family and my wife started getting better, but I kept getting worse. And then she was pretty much all 100% better, and I just kept getting worse and worse and, and ended up going in and out of the emergency room at one of the hospitals in Spokane, and they just didn’t have any room.

So I didn’t, I wasn’t actually able to receive any treatment. Until one day I got picked up by the ambulance and they they drove me to the to the hospital. Should I use names or? No, it’s not. Okay, we’ll keep it. Okay. So I got picked up by the by the ambulance, and they took me to the hospital. And my case was so severe by that point that they, they admitted me, and I remembered you the ride there.

And I remember going in and they put a mask on me to help me breathe. And then that was the last thing I remember. I woke up three weeks later. And I was told just some of the most unbelievable stories of what, what had been going on in life while I was asleep. And but I was at a lot of my own stories to tell too, because it was it was quite an experience.

Kali Dayton 3:06
Right? You say asleep? Because that’s what everyone’s calling it. Right? Right? When really we know from the research, and most importantly, from your experiences, that when patients are sedated, their brains are so disrupted that they do not receive real restorative sleep. It it makes room three and room for absolutely impossible.

So there’s sleep deprivation on top of COVID, all these things that disrupt the brain. So physically, you looked like you were sleeping. That’s probably what they told your family. That’s probably what they were telling each other as clinicians. But the most important perspective here is yours. What did you really experience what was going on in your mind?

Chuck Evans 3:52
So it’s hard for me to talk about this as a in vocabulary that a lot of people would accept, like if I said that I had a dream, or a nightmare, that would probably be a little bit more acceptable. But I don’t know if it was from the drugs or from the sleep deprivation or whatever.

But what I experienced, it was it was another experience. It was I experienced about a lifetime’s worth of of time. doing different things being different places. In here and again, was the hard part about talking about this. It’s from the perspective of somebody who was under a lot of drugs, and, and all those things.

But in the in this experience, time was a very fluid concept. You know, there was a lot of me being in a specific place at a specific time during different events in history. And I I’m in even having effects on history and everything and hadn’t tried to fix them and everything like that. It was a time that my imagination was just going very, very, very wild.

And I wasn’t, I didn’t have the, my body didn’t have the capability of waking itself up. So there were times that it spiraled into nightmares that just got worse and worse and worse. And one of the things I ended up doing after, after I woke up and was able, physically healthy enough to do this is I actually had to seek counseling for PTSD from not not from going through the experience, but specifically, what what happened while I was sleeping.

Kali Dayton 5:55
And I think you bring up a point that many survivors bring up is that it’s hard to use normal vocabulary for such an abnormal experience. Right? And so, for those of us that haven’t gone through it, yeah, dream and nightmare hallucinations. Those things make sense. But you’re saying it doesn’t fully capture what you experienced?

Chuck Evans 6:14
What I experienced was as real as I am talking to you right now, like it, it was very there were times that I would float back and forth being like, I don’t know, which reality is real, like, Am I really in a hospital bed? Or? Like, is this other reality is that is that what is real, like, what is ontologically? Real, and, and I was at a place I didn’t know.

Kali Dayton 6:41
And I for that reason, call these experiences. That they are, they are real to you. People become as psychologically scarred as if they had physically lived and endured these things. And for the sake of helping our listeners, especially our eyes to clinicians really understand that patients are not sleeping, they’re not being spared trauma.

Oftentimes, some people have no experiences. But they might have trauma from last time, they might have coma from waking up being so physically debilitated. But many have traumatizing experiences. Again, not dreams, not nightmares, these are real within your mind. Help us understand. If you can, I don’t want to pry. I don’t want to bring up anything that’s triggering, or uncomfortable or too personal.

But because I recognize that some survivors will say, I can’t talk about these things, because I’m still too ashamed that I might even go there. So don’t don’t feel like you have to stare anything beyond what you’re comfortable with. But help us understand maybe some examples, specific examples and descriptions of where you were and what that was like.

Chuck Evans 7:56
Alright, so you seem like a really nice person. So I’m, I imagine this just goes without saying no judgment?

Kali Dayton 8:04
No, not at all.

Well, exactly. This is I mean, you are not, this is, this is not about you, or what’s in your mind, it’s about what happens our patients in general. And this is, I mean, you’re a PhD student studying the Bible and Christianity and you lived your life so close to God. So that even brings in more context, the fact that things could get so dark and hard.

Chuck Evans 8:30
Right. So I’ve tried to organize my experiences into some kind of something that tracks and makes sense, you know, some kind of timeline, but but there’s a lot of it that’s just so jarbled. You ever watch this show quantum leap?

Kali Dayton 8:56
I haven’t.

Chuck Evans 8:57
Okay. So in that show, the main character Scott bacula. There’s a guy who plays on he leaps in and out of different people trying to change history. And and the show is all about his different adventures as different people and in everything really cool premise for a show, but when you’re living it, and you’re not necessarily jumping in and out of other people that you are you you’re just going back and forth in time and in different places. Like it’s, it’s really hard to figure it out.

And for whatever reason, I found myself always in war. So there were there were times that I was in Germany during World War Two, there was times that I was most of my time was spent in Korea. There was some of it It was a little later than that. But for the most part, it was somewhere between the 1910s and the, in the 1950s.

You know, that, that whole span I had so many different experiences like running away from Nazis running away from the Soviet Union, trying to figure out how to get technology to work that I remember reading about, but had never actually seen up close, like, and I know, I know, that sounds so weird, but the, everything had tactile touch, like, I remember the feeling of some of these things I remember.

I remember running through the woods, and it being cold. You know, the feeling of the tree branches hitting my face, as I’m running for my life. The, you know, I don’t I don’t speak a lick of German. And to hear German soldiers running after me. It was really, really overwhelming. But there were also other experiences that happen a little later than that, where I remember seeing a picture of my dad when he was about my age. And he was, he was a weird looking dude.

But, you know, it was the 70s, whatever. It was just a different time in different culture. But I remember this picture of my dad. And in a lot of these experiences, you know, I probably had over 150 of these different experiences. But you know, and a lot of these different experiences. I was running from him because he was he was trying to kill me. And, you know, there, there were parts where he was successful.

There were, you know, there were times when he and I know it I know, it sounds weird. But one of the one of the common themes throughout the whole thing was cannibalism. Like, there was one point when I fell out of a out of a plane, because we were doing a low running, Bond dive. And somehow I fell out and got captured by the enemy and was eaten. But I was, I was alive and awake for the whole thing. And I remember feeling it.

And there were there were times when my dad and in this in these experiences when he caught me, and he did the same thing. And my dad had passed it passed away about 10 years ago. So I don’t know if that had some reason to play for him being the villain and in a lot of these stories, or anything like that my relationship with him was pretty good. But it was just a role that my mind had him playing. And does it

Kali Dayton 13:36
Does that impact your relationship with him now? I mean, your memory of him at all? Does it kind of creep in?

Chuck Evans 13:42
Oh sure. Yeah, like, there were times I couldn’t even look at a picture of him. Without having flashbacks.

Kali Dayton 13:54
Survivors have shared that they thought their spouse were the were the villains that come out of their comas. They’re terrified of their spouse, or they think that they’ve been betrayed or their spouse was not the supportive loving spouse holding their hand during critical illness, right?

And their delirium, and then they have to go through intensive marriage counseling and therapy to try to rebuild those relationships again, and how difficult for the for the partner who never did anything wrong. And that just that breaks my heart that it’s impacted your relationship with your dad who was not there to really help restore that and build new memories. Right?

Chuck Evans 14:34
Yeah, the one of the hard parts is that other than one specific memory I forgot that my wife and kids existed. I was, you know, for for me like 8090 some odd years had gone by. And like, I had no idea like I forgot who I was by, by that. Um, I came back. Like there was so much about me that I had forgotten, because it felt like so much time had gone by.

And and, you know, other than this one memory of being able to take my wife on a date back in 1950. And she smuggled with her a copy of Back to the Future. So we watched Back to the Future, back in 1950. And in stuff like Alan’s part of the movie took place like it was. Other than that one, brief, sweet time.

My kids weren’t a part of it, my wife wasn’t a part of it. And when I finally came to, I, I forgot, not only that I was married, that I forgot the marriage was even a thing I forgot that people were happy. And like, it was, it was a time when I woke up, I like I thought that the the nurses were, I thought they were trying to hurt me, because you when you wake up, or want when I woke up, it wasn’t just a wake up, like you see in the movies, and boom, you’re awake.

Sometimes you drift in, and you drift out, you go in and out. And I do remember, when I finally like, took, took a hold and like actually started waking up. But there were people who started interacting with me in, in these experiences, that when I was actually awake, they were there. And and so it took a while to figure this out. But my mind was trying to make sense of what was going on around me and it was incorporating some of these different nurses in these different people.

Kali Dayton 16:56
And wondering, you know what the cannibalism. When you’re an ICU patient you’re being touched so much. And sometimes you’re having procedures done central lines, place chest tubes, whatever you can you have pain is that may be reinforcing? That those those experiences when you’re having real physical experiences and people actually touching you. Yeah, pain.

Chuck Evans 17:22
So I was told that I pulled my feeding tube out. And I said that I had to give it to my friend. And I have no idea how this is possible if I was asleep. But you know, a lot of these details are I don’t remember because I was so drugged up at the time. But I was told that I removed my feeding line and that I was trying to give it to my friend. But I do remember in one of these experiences, I was in a in a death chamber.

And I was the only one get who had a blocked line. Because the the medicine that they were trying to feed you it was going through the was going through this and I realized that my line was blocked. So I was trying to give it to somebody else so that they wouldn’t die. And and I I guess I took my tool belt in real life and was trying to give it to somebody else. And that’s when they decided to do it.

But I do remember my nose hurting a lot. I do remember almost a feeling like my nose was being burnt. Almost like my someone was putting a hot light bulb under there. And I could never figure out that sensation because it was just so unpleasant. But it was I remember it was the first time in any of these experiences that the term Coronavirus had come up. But I had forgot what COVID was because it had been so long.

And I and I remember asking the nurse in this experience like do you mean SARS? Because SARS went around. It was a big it was a big thing that a lot of people joked about because you know over here we didn’t we didn’t really experience any of the bad parts of it. But I remember that part of it. And then when I woke up the the nerves was telling me like you’re, you’re in the hospital. Do you know Do you know what day it is?

And I think I remember saying February or March, but it was September. So I had lost a significant portion of my memory before before going into ICU. Luckily I’ve I’ve gotten almost all of it back, but but they’re forever Oh four or five months before, to the whole three weeks that I was under, and a good chunk of time Haftar like my memory, my cognition, nothing, nothing, nothing could be trusted.

Like, I had to ask questions that were seemingly really kind of no brainers. Like I’d asked my sister like, Were you in the military? She didn’t know. But I remember her being a pretty high ranking official. Wow. And, and, and I still see her to this day. And, like, in my heart, I want to pay her the respect that you would pay a high ranking Air Force official. But she hasn’t served a day in her life. And in, there are so many other aspects of my life that are honestly still kind of like that, where I see something. I’m like, I have a perspective about you that I’m not sure I can trust. So

Kali Dayton 21:03
I think we’ve all had little tiny glimpses into that. So minor, right? We have a bad dream. And it feels real in that moment, but maybe it lasts like 30 seconds. And you wake up with a jolt. I mean, I had a dream where my daughter was in the bathtub, and bad things happen, right. And throughout the next day, or maybe even two days, I had to remind myself, that was just a dream. Like, I was startled.

So So internally startled from it, that even though it was so quick, I woke right up, I knew what was a dream I’d have, I still felt like that weight and little bit of trauma from that. So I’m trying to protect that little tiny glimpse into what it’s like to go. And our time, three weeks and your time, 90 years, of things that are far worse, and real and running for your life and being eaten. Being very aware that you’re being eaten by people being betrayed by your father by just all of it.

So it makes sense why, even though now you don’t tend to therapy, you’re you’re far out from this some way, right? You still are psychologically impacted by it. When the brain is so disrupted, from sedation, from critical illness, even when the sedation comes off, it’s still lingering in the body for days to weeks, depending on the patient. But even once that medication is metabolized out of the body, that brain is injured. And it takes a while to heal.

Oftentimes, it doesn’t fully heal. So you can be in delirium while sedated. And you can stay in delirium, even once you’re awake, you can be there sitting with your eyes open, you can be following commands, you could be given a thumbs up squeezing your people’s hands, but you still are in another world sounds like that’s why you pulled your feeding tube out. You weren’t awake, but you weren’t really in reality yet. Do you know how long it took for you to come back to reality.

Chuck Evans 23:10
Um, I think it happened in stages. Like, I was released about four weeks after I woke up. And I still remember instances where I was having hallucinations after I was home. And there were there were aspects of reality that I died. I just wasn’t quite sure I could trust at that point. But yeah, I probably I probably say it took it took a solid six months for me to really feel like I could trust my, my, what I was perceiving around me 100%, fully like, like sitting sitting in a chair or something like that.

But the physical effects on my body as well were like, I was so weak that I couldn’t, that I couldn’t do anything. So I felt vulnerable, emotionally. But I was also super vulnerable, vulnerable physically, and just really dependent on absolutely everything. So like, there were a lot of aspects of, of this whole thing that were just very humbling, and very, very much a reminder to me that anything that I have is a gift. And anything that I could possibly even think to receive is a gift, whether it be good or bad, although all the experiences God has used in my life to show me more about who he is.

And to help me to remember bit of who I am, is directly directly related to who he is. I see, I see my eye before this whole thing I saw myself as not that bad of a person. And I could theologically argue that yes, I was a sinner saved by grace. But But I had been so used to the, to the lingo, and so used to everything else, that it had just kind of become numb to me. But it helped me to see like, No, I’m, I am a sinner, in the hands of a holy God. And the, just every aspect of the experience brought me back to his goodness and His faithfulness in my life.

Kali Dayton 25:51
We put our value and our worth into our physical and cognitive function, and what we’re able to produce and contribute, but that was a large part taken away from you, you still have so much value. There’s so many things that we take for granted when we are pretty able people. And I think in the ICU when we’re focused on for, in your case, the lungs, you have sick lungs, we get so hyper focused on that, and we forget the person as a whole.

Especially when someone’s young, I think there’s an assumption that you have more reserve, you entered strong, which always improves your chances, that doesn’t mean that you can’t come out very debilitated and have long lasting impacts from it. So you were 30 were you 35 At the time. So after three weeks of being sedated not moved a muscle, you were getting medications that were toxic to your muscles, like they if you were getting propofol, benzodiazepines. propofol is a mitochondrial toxin, and it disrupts the sodium channels in the muscles.

So you lose a neuromuscular connection, you lose muscle mass from not using it COVID Mix your hypermetabolic. So you’re breaking down so much muscle so fast. After three weeks, what was that like for you? What was your physical capacity?

Chuck Evans 27:12
I lost 60 pounds of muscle and wasn’t able to move. Like, I have a picture on my phone. I had never had a mustache before. And when I woke up, because I hadn’t shaved in three weeks, I had, I had a full face of hair going. And I have a picture where it looks like I just got punched in the face.

But what had happened was I tried to take a picture so I could see what my my moustache looked like. And I couldn’t physically hold my phone. And it fell and it hit me in the face. So like, my, my physical ability was so severely limited, I had to, I had to get help going to the bathroom being cleaned up after

I had to relearn how to walk. But all of this is happening in the height of COVID. I’m not being allowed to see to see my family. And you know, I’ve just gone through this whole, this whole experience. And hospitals aren’t locked down. Like I couldn’t, I couldn’t speak loud enough to be able to be heard over the phone. I could whisper and my wife was super patient. So she would she would try to listen real carefully.

But but there were so many times that I would be trying to talk to her. And I could tell like she just she’s not hearing me because I was no more than a whisper and and just that feeling of loneliness. It it’s interesting. I actually had one doctor, all my other nephrologists that my that my kidney was toast that it would never it would never work again I woke up on kidney dialysis and and that was kind of a big fear for me because I only have one kidney.

So when when they said you’re on on dialysis, that to me was like, Oh, that that’s not a good thing. You know, can we talk about this a little bit like look like what, you know, tried to help me under understand this, but they didn’t want to talk about it because they didn’t want to speak for the doctors. And then there were so many doctors going around, or there weren’t enough doctors going around, to be able to like really Get a lot of these answers solidly, but to their, you know, on their defense, I was so drugged up, I couldn’t understand them anyway.

But I got super depressed in the hospital because I was so isolated. That you know, I know that this is probably not the best course of action, but we we opted for me to not go to physical rehab inpatient. Instead, we opted for in home physical therapy and in rehabilitation. And so there were, I was released directly from the hospital to home and my wife kind of nursing back to hell.

Kali Dayton 30:50
And what was your so you had been in hospital for an additional four weeks after coming out of the coma?

Chuck Evans 30:54
Right, so almost two months.

Kali Dayton 30:57
Wow. And so they’re radically while in the house while still inpatient. During those four weeks, you were somewhat rehabilitated. Even still, 35 years old, coming home after that, what was your physical capacity like that, like, upon arriving home.

Chuck Evans 31:14
So I had, I had to be completely assisted in walking. So I went through the gamut of going from wheelchair, to then using a walker to then using a cane, to then go on unassisted with a limp. Just because my body is still trying to figure out what it’s doing. But I also ended up getting gout really bad because because of my kidney, I couldn’t process any of the uric acid and anything like that.

So some of my feet weren’t in a position where I could walk on them anyway. So. So if I ended up on the floor, I would be on the floor for hours, until until my wife or someone could get home and help me crawl back into the, onto the couch or into bed or anything like that.

Kali Dayton 32:14
How often did you fall? Do you know?

Chuck Evans 32:16
I never fell. If I if I ever found myself on the floor, it was on purpose. I don’t I don’t exactly remember why. And I’m thinking back to it. Like that’s a really dumb decision on my part to get down on the floor. But I do remember one time, I was trying to retrieve something out of out of a drain. And my wife didn’t know how to do it. And so I had to take the P trap off the off the bottom of the thing.

And I’m trying really hard to move this thing that would have been so easy for me only three months earlier. And I wasn’t able to stand up after that. So I just had to crawl as best as I could. And I just went and slept on the floor for a while until until I could muster up the energy to try again. But it was it was it was hard. But it was specifically hard on my wife because she had to not only take over a lot of the stuff and we have two young kids and everything like that.

But like she had to do a lot of really physically demanding stuff. Getting my big butt around. So like she had to load up my wheelchair, she had to load up my big heavy Walker. And I’ve been so tired of being cooped up in hospitals and now home. I wasn’t super patient. So like I wanted to go out and experience the world I wanted to go to the mall I want to date I wanted to see people and you know that that’s one of those things that when you’re in the hospital you just really forget to appreciate is people not wearing scrubs.

Kali Dayton 34:09
The real world.

Chuck Evans 34:10
Yeah, yep, you can see it from out of your window. Sometimes if you’re lucky enough to have a room with a with a view but my only view was a parking lot.

Kali Dayton 34:23
And even though that was so hard at home, you felt like that was that was better, a better alternative than the depression and the loneliness and isolation had been inpatient. Yep. The covered ICU, I was working in an awake and walking ICU and most patients, especially if they were young, were awake most the time and walking unless they couldn’t oxygenate with movement. They would help problem themselves they would be walking wall to wall within their rooms.

And most of them walked out the doors and went home shortly after being excavated, getting getting the tube taken out. And so I think And when we don’t on the on the ICU side, when we don’t understand what it’s like after the ICU, it’s really hard to be to see past what we’re doing in the ICU. Does that make sense we don’t understand the repercussions of our decisions. And that moment, and COVID was a time of a lot of fear, we went back to a lot of the practices from the 1990s.

We were using harder sedatives at higher rates, deep, deep sedation, there was just a lot going on. But to assume that someone in their mid 30s is going to bounce back from that kind of coma is a very common assumption. But now you’re far out how has all of this affect you cognitively, psychologically? Emotionally, I mean, and you like relationships with your wife and your family? What has that journey been like since then?

Chuck Evans 35:52
Yeah. So my, my relationship with my wife is now better than, than it ever has been. There’s something about being dependent on somebody, as a man, they helps kind of foster that intimacy, I would say, and my wife is such a nurturing person that I think having that responsibility over me for a while, kind of help foster it for her as well.

You know, the, the relationships between me and my kids has been really hard, because they had had the conversation that dad probably isn’t going to make it. And in, they were five and seven at the time. And like, they spent three weeks wondering if Dad is going to wake up. And then after I did wake up, they were asking, like, How long until dad comes home. And the kind of psychological scarring that I’ve had, I would probably argue, pales in comparison to what they’ve gone through.

They have come close to losing a parent, but then they’ve had to watch a parent fight, tooth and nail to find some semblance of normal after, after something like this. And so there are a lot of aspects of my relationship with my kids that I’m still, I’m still working on. My, my son still has dreams that my wife calls him into the room to tell him to tell him that I passed away. You know, and, you know, the the latest instance of that was just last week. And my daughter, she has her walls that she’s put up because she doesn’t want to get hurt.

She doesn’t want to let herself get past that. That sense of she doesn’t want to let herself be vulnerable, because she’s afraid that I’m still going to die from it. She’s, she’s afraid that I’m not out of the woods yet, even though it’s been a long time and physically unhealthier than I have ever been.

Kali Dayton 38:36
Well, and yeah, that’s, I think that’s something that we certainly didn’t appreciate before. COVID is, how important the families are, and being present being involved in that process, and have a connection with their loved ones during that critical illness. I’ve heard from families of survivors, that it was traumatizing for them not to be connected, not being able to communicate, not to be able to talk to them.

I mean, I don’t, I’ve never gone three weeks without talking to my husband. That’s what your wife went through on top of wondering if you’d come home or not. There is a protocol called the ABCDE F bundle. And it gives us tools to make it so that as many patients as possible, can be as as awake, communicative, autonomous as possible. So what I would have loved to seen in your case is that you had been awake, even while intubated, been able to zoom your family text your family, ideally, have your family at your bedside, I know everyone would have preferred that.

From your perspective, got having gone what you’ve gone through, and appreciating that it’s not comfortable to be intubated. But I’ve had hundreds of 1000s of patients be awake and calm and fine while being intubated. The ICU side has a very big concern that patients will be traumatized by the breathing tube That’s a lot of reasons why we sedate patients is because we don’t want them to be traumatized.

If you could have it, have had a choice if you could have been awake and aware of what was going on, had your wits about you communicated had the strength to use your phone to text to write? Which option would you have taken? Had that been an option?

Chuck Evans 40:25
That’s, that is a really good question. I don’t know if I’ve ever considered it, considering what what my specific case was like, because I did have sepsis as well. And I was told that part of the part of the sedation was because the drugs that they were giving me for the sepsis would have made me really sick, or, or I would have felt really sick. I don’t really, I don’t really remember. But I remember the fact that I had sepsis, playing a really big part of it.

Kali Dayton 41:06
And just for the ICU clinicians, I treat a lot of septic patients. Sepsis is not an indication for sedation in general, just by the research by the books, right. But culturally, there’s an understanding of the sicker the patient is, the more that they need sedation. That’s a cultural belief. And i i Can I wasn’t there during your case, I don’t know what your numbers were in all the details. But that is a common perception that the sick of the patient is the more sedation they need. But it’s not not usually founded in real reality or evidence, okay.

Chuck Evans 41:41
To considering everything. On this side of it, you know, had you asked me right, when I came out of it, when I still didn’t have any muscle mass or anything like that, my answer would be completely different. But being this far removed from it, and just being able to see what God has done in my life in my family’s life. Because even though we have our things that we’re still really messed up with, even though like I still get flashbacks, and some of these things are, are still very much a part of our lives.

Even with all of that, to see the good that God has brought out of it. I don’t think I would, I don’t think I would change it that’s not to say it wasn’t the hardest thing that I’ve ever gone through. Like I’ve I’ve lost one of my parents, we’ve we’ve gone through miscarriage, we’ve gone through just some of the worst things in life imaginable. And as far as physical, emotional, psychological toll This is the hardest thing that I’ve ever gone through. And I don’t think I don’t think I would change it.

Kali Dayton 43:15
I can appreciate that little bit in my in my little world. I have a daughter with a lot of medical needs. And I would love to take all that away from her. At the same time. I am grateful for all the miracles, the joy, the blessings, like it’s really hard to describe to people that haven’t been through something like this before. That so much good can come out of it. Absolutely.

Chuck Evans 43:39
Oh, yeah. Sorry.

Kali Dayton 43:43
Okay, you’re good. I can read it. It’s okay.

Chuck Evans 43:47
I’m gonna see what he’s barking at real quick.

Kali Dayton 43:48
No worries.

Chuck Evans 44:06
Sorry, I live in a very in an area where a lot of commerce happens door to door. So yep. Yep. Someone just trying to leave their business card. Honestly.

Kali Dayton 44:22
I’m so glad that you have had good family support. Do you have faith? Do you have like a strong foundation to fall back on, I worry about patients that don’t have that kind of support or resources to really recover and what the trajectory of their lives are like, and for the ICU side, no one wants you to suffer that.

Everyone was working so hard to make sure that you had as little trauma as possible from their perspective, that you had the best chance to recover and to survive and things like that. The important part of your testimonial is that a lot of times what we perceive as being comfortable, the least traumatic as hospital things like sleep are not what we perceive.

It is not what we think it is. And I really believe in patient autonomy, families being informed patients being informed, informed of the reality of these things. Did you know that you had delirium when you were in or after the hospital? Did your wife know? What? Did you have any heads up of what the future would hold for you?

Chuck Evans 45:28
I knew that I was hallucinating. But for me, just figuring out what what reality was, was was really hard. Nobody ever came right out and said, “You have delirium you are delirious, you’re going nuts. Just stop.”

Kali Dayton 45:55
or, “You have a brain injury. This is why you’re having these experiences.” Or, “Here’s how that’s going to affect your life potentially, in the future. Here are some resources to recover.”

Chuck Evans 46:04
Yeah, I, I don’t remember. I don’t remember anything specifically for that. I do remember being given resources because of my kidney dialysis, I had to do outpatient dialysis for a while. And then I do remember there being support for physical rehab and stuff like that, but nothing from I don’t remember receiving anything. As far as help and guidance on the psychiatric side of things.

Kali Dayton 46:48
We want to make sure that our patients after we’ve worked so hard that they survive that they have this chance to thrive to not come back to the hospital to go back to their normal lives. And so we’re really good at setting you up with nephrologist if you had a kidney injury, pulmonologist, if you had a lung injury, physical therapist, if you have physical impairments, when it comes to the brain and the soul of a patient, we’re pretty unaware.

I think the perception is if you as a patient are following commands, you’re nodding your head, you’re, you know, a day it is you’re probably fine, you’re good to go home. You’ll go back to work in a few weeks, once you physically recover. And so what I would love for our ICU community to understand is that your brain matters, and it’s been injured from the critical illness and especially the sedation. I is a healthy person right now I could go into medically induced coma for the next three weeks.

And I would have very similar experiences to what you had. Even without the sepsis, even without the COVID, I would likely have a brain injury as well. And so we need to understand that this is not a benign intervention. It comes with high price, big repercussions. Fortunately, you were young, you were healthy, you have a stable family, resources support community. Not everyone has that.

So when we’re trying to figure out whether or not patient needs to be sedated, your words I hope will come back to their minds and say, “Should I tell them? Should I give them an option and say ‘If you are sedated, you may have these experiences, it may traumatize you may impact the rest of your life?’ ”

Chuck Evans 48:28
Well, I one one aspect though, is it when when I got intubated, it was kind of understood that intubation at that stage in the pandemic was a death sentence. That that, like most people who went to the hospital were not intubated. Only the very, very, very serious ones were being intubated. And if you watch the news, which is a very sore subject, you watch. You watch the news and anybody and everybody who’s being intubated dies.

Kali Dayton 49:06
Right.

Chuck Evans 49:09
You know, I do remember waking up and having the doctors in the in the nurses, you know, they all took a moment to swing by and say hi, and that they were really excited to to see me doing so well. And they were talking to me like they’ve known me. And I’m like, I’ve never seen you before my life and like you’ve been here for three weeks I’ve been bathing you and taking care of you and all these things. Like I don’t expect you remember me but I know you. So it was very, very weird experience. Especially I could have swore I saw one of the nurses hand, another nurse, like five bucks or something like that, like I didn’t think it was gonna make it so

Kali Dayton 49:57
Knowing the fact that you were successfully off the ventilator without needing a tracheostomy that after, after over three weeks, that was probably not common.

Chuck Evans 50:05
Right, because I think it’s 15 days that they that they do the do the trach. Unit. Yeah, something like that. That’s, that’s what was communicated to my wife. And for whatever reason, I made it to 19 days without getting one.

Kali Dayton 50:24
They didn’t have to put a hole in your throat. I mean, that’s, that’s a huge accomplishment. And, again, all of that is minimized when patients are strong enough to breathe. And so fortunately, you were strong enough to breathe, even after losing 60 pounds of muscle. That I think is a big accomplishment and big miracle and a great thing for you. And for the team. I, I’ve been to your hospital, I know some of the people there and they are wonderful people, they genuinely care about their patients, I know that they work so hard to provide quality, loving, genuine care for their patients.

It does make me sad that they don’t necessarily always get to connect with their patients. Because I think he would have been a great person to connect with and would have been the kind of patient where they would say, This is why I come to work every day, they still felt that way about you even while you were sedated. But for you to be able to write on a piece of paper to them to connect with them, if you were able to get out of your bed and walk and they were able to see your your your ability to fight for your own life. And to connect with your family. That changes the experience for the patient, obviously, right, it transformed the experience for the clinicians as especially.

Chuck Evans 51:34
Yeah, one of the things that really felt almost like I was robbed by this was that I never had the opportunity to go back and say thank you to those people. Like I saw remember a lot of their names, and this much of their faces. But like, the woman who woke me up, I remember, I remember her name, I remember a few of them nurses, there was one nurse there who was struggling with gender dysphoria, and had another preferred name, pronouns.

And I’m not trying to make light of her is situation. But I was super confused by everything that had happened to me, like, as I was waking up from this, to then be in a spot where I had a transgender nurse. Like that was like throwing a wild card at me like, “Hey, what are you gonna do with this? Like, I don’t know.”

Kali Dayton 52:49
You felt like you had to keep everything straight. But you couldn’t even keep your own person straight. You can even keep yourself straight,

Chuck Evans 52:56
Right. Like I like being somebody who comes from my training background. Like, I do have very strong opinions on that. And their opinions that I don’t share openly because, you know, there are a lot of opinions that you don’t share openly and honestly, with everyone you have to, you have to temper some of those things in love. You have to, you have to think before you speak. And I felt like I felt like I was somebody equipped with a lot of logic that could really hurt somebody if I wasn’t careful with my words, and I was not in a place to be careful with my words. And, and the one person who really probably needed some extra love.

Kali Dayton 54:00
Like you didn’t want to hurt them. I didn’t know that you weren’t in a place to be able to really think through a lot of this stuff. And I think when we really understand delirium, which I think most of our ICU community doesn’t fully understand. They can recognize if a patient is confused. Hopefully that’s enough to give people grace and mercy.

If they’re saying things responding, in a way, sometimes patients are completely erratic, they’re thrashing, they’re agitated, they’re, you know, patients are not themselves, that I don’t think they’re not fully accountable when they are so cognitively disheveled and they have a brain injury. So as we understand what you had been through during your coma, the injury to your brain, we wouldn’t look at a kidney and be like, Why this kidney should be doing all the filtration.

Why can’t do it like we wouldn’t be dissing on the kidney. We shouldn’t be dissing on the brain either to say they’re a bad person because they’re not By using the pronouns that I prefer, they’re not responding in a very respectful way, even when patients. So I asked clinicians when I’m doing presentations, how many have been assaulted by a patient, most of them write their hands.

And I say, put your hand down. If your patient was not delirious when they assaulted you that they were in their right mind, and they totally know what’s going on. And everyone keeps their hands up. Because it’s that common for patients with delirium to not be on their best behavior to be their best selves to like, be who they really are.

Chuck Evans 55:33
Well, there’s there’s also the aspect where, yes, I was, I didn’t have the ability to filter to filter my words and everything like that. But I was also still in a, in a place where my grasp on reality was very tenuous. So as I after I woke up, as I’m progressing from the bottom floor, ICU and going up to the respective floors, as I’m getting better and better, getting ready to be released. I, I remember having just a really bad I thought the nurse was going to cut me up and try to sell me for parts.

And I had, I had convinced myself that that’s what was happening. Because as I heard her, on her cell phone, whatever she was saying was being translated to me as her plans of how she was going to do it and everything. And I was, I was outright terrified. That, oh, great, here I am in in yet another situation, and someone’s going to try to hurt me. And I wouldn’t have the physical capability of defending myself at all if, if that was the case. So I just became a disoriented hot mess, often. And it didn’t take a lot to get me there. Just because like I was, honestly, just really frail emotionally. Just kind of broken as a person.

Kali Dayton 57:17
And I’ll, and I’ll mentioned just, I see a clinician sometimes, and patients are in this state, and they’re becoming erratic, they’re, they’re maybe becoming agitated. We really respond to that kind of presentation with more sedation, even on medical floors, we give Ativan, we might get some very sad pushes right holiday, or we might just want to chemically restrain them to, quote, keep them safe.

But understanding why you were afraid. A lot of it had to do with delirium, giving medications that cause exacerbate and prolong delirium is not the most logical nor humane intervention for that situation. But so that you understand the clinician side, sometimes it’s hard. Sometimes we’re afraid as clinicians that you’re gonna lash out at us, no matter how weak you are, right?

Or I think a lot of it comes from, we want you to be comfortable. And when you are, have your eyes closed, and you’re laying there still, we perceive that you’re sleeping, and we feel like we have now made you comfortable. And now you’re you’re going to be less traumatized and less scared and agitated. But the ironic thing is, is why is your testimonial so important is because you were scared, you were worked out because you were confused. And we need to clear out that confusion and rehabilitate your brain rather than continue to keep you stuck in bed stuck in that alternative reality

Chuck Evans 58:43
Right. Now, is the brain something that can be worked on? Or is it just one of those things that’s, that’s ignored, because we don’t even have the ability to fix it?

Kali Dayton 58:58
Yeah, in the ICU setting, we there are a lot of things we can do to prevent even getting there even injuring the brain. Things like sepsis can injure the brain. So there are some things that are unavoidable. But we can have a lot of control into how severe the injury becomes how severe the delirium develops, by avoiding medications that cause it.

Mobilizing patients, doing cognitive therapies, keeping the brain engaged, interactive, having a family at the bedside, but here you are, and this is what one of our top delirium researchers he calls these COVID units a “delirium factory”. You had no family. You were not mobilized, you received very toxic neurotoxic, deliriogenic medications, on top of having sepsis and COVID, which were very hard on the brain period.

Now after the ICU, all those tools still apply. You need you need a family, you need to be mobilized. You need to be rehabilitated, get out of bed, you need to have speech therapy, occupational therapy, things to engage and retrain. and rehabilitate your brain. Many survivors need and often don’t receive cognitive therapy, as well as psychological therapy and physical therapy after the ICU, post ICU syndrome looks different for each patient, but usually includes the physical, cognitive and psychological disabilities or impacts from critical illness.

So you received psychological therapy, physical therapy, but oftentimes, we don’t understand the need for cognitive therapy, especially if someone was like in their PhD program beforehand, and they’re really smart. And they still seem to have be really capable. Even after the ICU. Have you noticed some changes in your cognition?

Chuck Evans 1:00:38
Yeah, yeah, for sure. Like, I wasn’t in my Ph. D. program at that point. You know, that’s more of a recent development. And and I was very clear with, with my instructor, I’m actually in my first class right now. And I told him like, a big part of this class, for me is honestly an experiment, I want to see if I can do it. Because I don’t know what kind of damage might be lurking around back there, because I haven’t.

I haven’t had the time guidance or resources to be able to really look into it to see like, what, you know, what kind of potential lifelong impacts are there, because for the most part, I do seem pretty normal. But like, I’ve really lost my sense of direction, like I used to be able to navigate places really easily. And I get lost, as I’m driving a little bit more easily than I used to. So praise the Lord for GPS.

But there are things that I forget. There are a lot of things that honestly, like, like I was saying earlier that made sense, in my experience, like some of those details that I have not been corrected on yet because it’s never come up in conversation. And you know, that every now and then something slips up is like, oh, you know, what about this? And everyone will just kind of stop and look at me and be like, “No, that’s not how that works.”

Kali Dayton 1:02:23
But it was in your delirium, right?

Chuck Evans 1:02:25
Yep.

Kali Dayton 1:02:26
And I’ve heard it from other survivors, like “I lived a whole nother world, a whole nother life. And now I’m trying to, like make that go away, and live my regular life. And in this other alternative reality, those things made sense. And now I’m supposed to automatically recognize that that didn’t happen. That wasn’t the logic that that wasn’t real.”

Chuck Evans 1:02:46
It doesn’t automatically connect, like, like when I look at those things, like one of those old switchboards that the telephones used to be operated with. And the experience that I went through was like somebody going through and manually changing all my, all my connections. And until I’m able to figure out what those what what connections aren’t right?

Until I counter something that’s not right. Like, I can’t physically go back and pull that plug and put it back into the right spot. I have no way of correcting those errors until they come up in conversation. But here I am to, you know, two years later, realizing some of my history facts are off.

And, you know, it’s like, hey, yeah, this war, you know, this battle of the World War Two that happened over here like, no, it didn’t. It was over there. And you’re like,

Kali Dayton 1:03:44
“but I lived it. I was there.”

Chuck Evans 1:03:46
“I was there. Like, you don’t know what you’re talking about, stop!”

Kali Dayton 1:03:52
Chuck, that is just wild.

Chuck Evans 1:03:54
Yeah, So there are a lot of aspects of it that I think will, will be with me until until I go home. But But luckily, because of the amazing work of the team there, and the support of my family and just the guidance from the Lord and everything. I’m glad to report that’s looking to be a long time away unless there’s something in it that I’m just not aware of.

Kali Dayton 1:04:30
Absolutely, certainly they they saved your life. And I look forward to all the wonderful work that you’re going to deal with in your life and within your family. I’m sorry for the sufferings that you’ve had that I appreciate your example of turning those into good things and building a greater future because of it.

And thank you for sharing these really difficult and intimate experiences. I think survivors are going to find a lot of validation things that you’ve shared survivors have told me in private but they’re it’s hard to articulate that in such a public forum, right?

Chuck Evans 1:05:03
You don’t want to sound crazy. You like, like the the, there’s a very real fear of, of sounding crazy because at one point in time you knew you were crazy.

Kali Dayton 1:05:17
Sometimes they go years without telling anybody, because they’re afraid that they will be institutionalized. Hopefully we’re advancing in our mental health culture and things like that. But this needs to be part of the advancement as we recognize that patients do not sleep under sedation. And that oftentimes, they can be in vivid graphic realities that are even worse than the ICU.

And as we understand that, that will help us navigate whether or not patients really should be sedated and their individual cases. And when they do have to be sedated. Hopefully we have more empathy. And we prepare our patients and their families with more resources to be able to be validated, to rehabilitate to have the psychological support and cognitive rehabilitation that they need. Thank you so much. Chuck.

Chuck Evans 1:06:04
You’re very welcome. Thank you

Transcribed by https://otter.ai

 

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