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What is it really like to be in a medically-induced coma? As an experienced ICU physiotherapist and war veteran, Aron Welsh provides soul-shaking insight into the graphic trauma of ICU delirium during and after deep sedation.

 

Episode Transcription

Kali Dayton 0:00
Okay, welcome back, I need to apologize to those that have tried to access the website for webinars and consulting services. It temporarily went down to repair some malware and is now back up. So it is www.daytonicuconsulting.com There are some really exciting episodes coming up diving into more research protocols, and even the financial picture of avoiding sedation and maximizing mobility.

I am routinely going to be bringing it back to the survivors to make sure we don’t get lost and lose sight of our why, Let’s always be humble and compassionate enough to seek out the perspective and wisdom of those that have and continue to live the price of deep sedation and immobility. Today I bring on physiotherapist sedation and delirium survivor and now author, Aron Welch. Aron, I’m so excited to have you on the show. Can you introduce yourself to us?

Unknown Speaker 1:28
Hi, my name is Aaron and I am an ICU survivor.

Kali Dayton 1:33
And tell us a little bit about what brought you to the ICU and how that went down.

Aron Welsh 1:39
Yeah, a couple years ago, I was quite happily doing a little bit of gardening on a beautiful summer’s day. And I got the most tiny cuts on the back of my hand, which become a little bit sore became a little bit red become a little bit infected. And the end of the day, I just kind of sat down with my partner and we were having a nice glass of wine, watching the summer sun go down. And it just looks a little bit red and was a little bit of scratch bit. And she said that saw leave it alone. And I ignored it as you do when you have a fairly, fairly minor injury and went to bed.

And then I woke up in the middle of the night and my arm was really hugely swollen. But at the time, I didn’t really have any symptoms. And we went through accident and emergency and my medical condition deteriorated very, very rapidly. I went for been a little bit concerned because my my arm was swollen. So I started to fit. I started with seizures. I was drifting in and out of consciousness due to the pain.

And then the decision was made that you know that I’d I had a severe infection which sent out to me necrotizing fasciitis, which commonly known as the flesh eating superbug, for very good reasons. And I was taken to theatres, and I was put into a medically induced coma apparently to help me recover. But as I think happens with a surprising number of big surprises me because I and I, you know, I am not completely medically ignorant. I’m still in physiotherapy, and I’ve worked in intensive care. And you know, like most people, I’ve kind of sat and see people in a medically induced coma.

And I kind of wondered what level of consciousness suddenly are aware of anything. And I was very, very aware things but unfortunately, you know, I had severe case of excessive care, psychosis, delirium, whichever you prefer. And yeah, I was basically catapulted into a series of the most horrendous and vivid nightmare. And well, I’m reluctant to use the word nightmare in absence of a better description of what they were. Because a nightmare, I think suggests a bad dream.

And we’re all familiar with what a nightmare a bad dream is. But if you if you want to have an understanding of how vivid and real these were, what you need to do it just look around your wherever you’re listening to this. If you’re listening to this in your living rooms, look around your living room, and the clarity and detail was as clear as what you’re seeing now. Unfortunately, it is also the most horrific and terrifying hallucinations and delusions but as you can possibly imagine, I have kind of sat back and thought to myself, How did my imagination, how was my imagination, able to conjure up these things I know I’m talking I’m kind of getting quite deep about it. But it’s only by want of a better expression way of expressing the, the, how terrifying it was, it was a truly terrifying experience.

Kali Dayton 5:34
And you mentioned it in this book that you’ve just written, gone through some of the specific images or scenarios that you again, I’m gonna use the word imagined, I, let’s just say that you lived, you live these scenarios. Tell us a little a little bit about what is experienced.

Aron Welsh 5:56
Okay, it was yeah, you hit on a really good point there. Because when I was writing the book, I really struggled with ways of, of how I would describe these different experiences is how I would call a call. And the reason why I sent experiences because when you have an experience, it is real to you. And the experience that you have, comes with not just what you see, feel and hear, but also the emotions that is attached to it.

And also, when you remember something that you’ve done, if you remember something that, you know, really happy and pleasant experience that you’ve had the emotions that are attached to that come flooding back with it. And it’s exactly the same with that, because you when you look back on it, you could still feel the visceral fear that they were. So in the book I described, several of these kinds of I’ve described several of them. And if anybody does take the time to read the book, you will come were thinking, Gosh, that, look, that does sound absolutely horrific.

But I have to also point out that I edited some of them and didn’t put some of them in, because I was worried that people would, it would upset people by reading them. And when I describe a couple of new ones, you know, you have to think, Gosh, what were these other ones that he left out. So the first one I was aware of it was kind of pretty much as soon as I was sedated. But when I was approached for theatres, and I’m assuming that that it was one has been intubated. Because one thing that happened.

And one thing that was constant through I, you know, my, my brain was basically trying to explain what was happening to my body. That’s kind of part of what your experience is. And because my brain couldn’t, you know, understand the fact that I was been intubated on an intubation tube, my brain just sort of went, Okay, we need to explain what this is. And it decided to conjure up the image of a snake, which was kind of inhabit in my airway, and I remember vividly and I can just, I’m just closing my eyes now.

And remembering the feeling of its head, pushing against my lips and pushing past my teeth and working its way down into the back of my throat. And it is kind of making his way down through my airway, and I can still feel if I close my eyes, so I do try not to do this too often. But I can feel it breathing, I can feel its muscles contracting, flexing and contracts in and flexing, relaxing, rather, and the feeling of it against, you know, much clearer, I can still feel that if I close my eyes and concentrate. So that was kind of the first thing I think because I was so heavily sedated.

They they the I mean the I you know I the it is you staff there you know if I’d have been got there 20 minutes later, I would have died without doubt. You know, so they did serve my life but but there were things that were definitely missed with me and I think that first of all the pain control because because I was so heavily sedated they didn’t know how well my pain control was the first scenario that I was in, I was kind of floating in a sort of an electronic universe with very vivid, very bright colors and shapes kind of popping all around me. And I had kind of a suit Surrounded by kind of spikes, which I could feel penetrating my skin and into my flesh 1000s of them kind of rhythmically into my body.

And this went on for what, you know, one of the things that happens to them is time walks. And I was kind of in this bizarre, very painful world for, I don’t know, probably about four or five days, I would imagine. That’s how it felt. And then I was on the ward. And I kind of moved through different scenarios do you want? Would you like me to? We’ve got time for me to just kind of talk about them a little bit? Yeah,

Kali Dayton 10:39
no, I think that’s, that’d be great. Okay,

Aron Welsh 10:41
I’m ex military. And I think everybody comes to, unfortunately, everybody who was kind of an experience, listen, certainly, through talking to other survivors, you all take your own kind of your own personal experiences into your karma with you. And I’m ex military. So I, a number of my experiences that I had were linked to things that I’d seen in active service, I was kind of revisited revisited. One of the, one of the experiences that kind of stuck in my head when I was in the military, and that was a child who had a shrapnel injury to her through her head.

And she has been helped by a mother. And I kind of relive that. And the guilt of not being able to do something at that time was kind of was revisited on on me with, you know, the, the, the volume level of all that emotion was was cranked right up. And it didn’t stop. It just went on and went on and went on. And I think, you know, if you if like a lot of soldiers, I think we’ve seen acts of service you you can carry a certain amount of guilt around with you in the you know, did was it the just thing, was it the right thing to do.

And that was kind of served to me feelings of guilt, where I find myself, I was a giant, and I was on this kind of the hole was laid flat, a little bit like an atlas. And I was a giant standard on this ambulance. But I could see every human being on the planet. But I could see all their faces. And they would all point in me. And there was a it’s your fault, not that I done that things. But everything was my fault. And I could hear simultaneously and it sounds incredible. But you know, this is the power of the brain. It’s your fault. It’s your fault.

And they will shout in things that happened to people and things that have happened to humanity but it was all my fault and a distinctively tiny tiny little Jewish man sharing me the Holocaust was your fault and a woman showing my daughter’s rates and it was your fault. My cancer is your fault. And I could hear every single person on the planet shouting these things at me and I could feel the guilt that you would feel if you had that level that year. And that went on for days in my head standard there with every person on the planet share in it right I’m kind of laughing now and I say it’s because it does sound so absurd, but that you know that you know that doesn’t make sense but yeah, I did.

And and one of the other one ones that one of the more difficult ones because when I started to become a little bit more medically stable the and I had visitors I think they may have lowered my station because I had an awareness of people visiting me and my my brothers when older and one younger had come to visit me if you have a sensitive disposition, you may need to turn the podcast down for a few months this is not very nice.

So I obviously had an awareness of my two brothers been near me so my brain took this information and sent right okay your brother’s into Stress widened distress. And then it made a scenario. And I was floating probably about 20 feet in the air above, a kind of area to kind of desert landscape. underneath me, were my two brothers. But not just my two brothers, there were copies of them. So there was my two brothers, but probably about 100 of one and about 100 of the other.

And they were naked. And as I was looking down at them, their arms and legs would be pulled away as if they were attached to, I don’t know, four horses. And I watched. And remember, the detail was as real as what you’re seeing what you’re seeing right now in your living rooms. And I watched their arms and legs pulled from the socket. And then screaming in agony, and looking at me, kind of helped me do something kind of right.

And then the abdomen would rip open and their intestines, and then internal organs would kind of spill out. And they’re still alive and looking at me into my eyes. And then their heads would kind of stretch back and the tissue at the front of the neck and sinews which is rip open, and their heads would be pulled off. And then there’s a little puff of smoke, and they vanished. And then there was another puff of smoke and a new one would appear. And that would be repeated. And there were this was hundreds of my brothers have copies of them underneath me. That played out in my head for four days. Four solid days, I’ve floated and watch my brother has been eviscerated. You’re a little bit lost.

Kali Dayton 17:14
I mean, what what can you say to that? I mean, it’s hard to fathom. Imagining that I think we all know what it’s like to wake up from a bad dream and to take a split second to reorient ourselves and to recognize, okay, how was just a dream. But maybe those dreams lasted 20 minutes. But you’re talking not ways nice, actual reality to you. Yeah, days and knights. Clearly, you’ve written this down, you told this story. You’ve worked through this. I think a lot of survivors even that we’ve interviewed aren’t able to go this explicit because this is real trauma. This is why people have PTSD. Yeah, so hard to talk about. I’m so grateful that you are able to and willing to,

Aron Welsh 18:06
but you know why? I’m, I’m you know, I have? I am. I am talking about this, you know, and, you know, I’ve written it down in a book. So, you know, I it’s not something that I’m kind of feeling guilt or shame over. But I know it isn’t easy to talk about, but I am talking about this in an attempt to stop other people having similar experiences. You know, if I if people like me, it’s five, as Dan said, don’t say, Guys, this is what happened not to all of us. But this is what is happening to some people right now in this department of obtaining an ICU, 10 bedded ICU department 50% of them or more, are experiencing something similar to that right now.

Kali Dayton 19:00
And COVID kind of exposing that, right, we’re calling it COVID brain, the long haulers which I’m sure has a lot to do with COVID. But also, we’ve given people the deepest comas, but the worst benzodiazepines, right. And so finally, in the masses and people and now we have social media, and we’re all connected more people are starting to talk about this.

But the ironic and terrible thing is that we give sedation to prevent pain and fear. We think that we’re going to prevent PTSD. We think that we’re sparing patients the horrific reality of the ICU, by simply making them quote unquote, sleep. We think that they’d be in too much pain and terror and discomfort to be awake on the ventilator. And yet in your book you talk about all you experienced was pain and fear.

Aron Welsh 19:55
Yeah. I can get that You know, the idea of been, especially you know, if you confuse because sets and stuff intellects, I get that, you know, the, the ICU ward could be a little bit of a while, a bit of a bit of a difficult thing to deal with. But I think if you, if you’re not completely sedated, then there are ways of dealing with that. I can not imagine being anywhere as terrifying as I was. So if you, you know, say, if you’re going to give me a choice of been where I was, or, you know, kind of trying to fathom the fact that and get my head around the fact that I’m in an ICU ward, my arm is the size of a, you know, an NFL player thigh.

and I’ve got, you know, a breathing tube down my neck, and, you know, I’m still trying to get all those pieces of a jigsaw together, then there is no way you can tell me that, that is worse than four days watching your brother has been eviscerated. It’s just not. It’s just not. And I want, you know, and I can’t believe that. If they, if departments don’t know that, that that’s what’s happening to some people. Okay, I get that. Everyone’s an individual, every patient is an individual, and maybe I did need a level of sedation. But it seems to me that it was right, it needs to date him.

And they dropped me like a stone into the station. And I think maybe a better way of doing it would be to give me some sedation and see how I tolerated my environment, you know, at least then I would have been able to, you know, answered discourse about the level of pain I was in. Because even though they sedated me in a way to stop me from from feeling the fear of being in an intensive care unit, it didn’t have any impacts of a pain, pain at all was constant throughout the whole of my experience.

Kali Dayton 22:13
But you didn’t know where the pain came from. And you talk about that in your book. Yeah, much. Theoretically. No way to go back in though, right? Yeah. But you miss construed your pain and the source of your pain the whole time? How much would have helped to have known where your pain was coming from, why it was happening, and how the coping mechanisms to work through it or connect with Karen at your bedside to help bring solace and comfort during that painful experience?

Aron Welsh 22:41
Yeah, I mean, as you know, I used to be a physio physiotherapist, or, as you call physical therapist, and I’ve worked in intensive care. But I’ve also got and I didn’t know about any of this. But I’ve also worked with chronic pain management. And I understand that, that the pain experience pain is hugely influenced by you know, the context in which in which you feel it. And you know, the example I give is, you know, if, if pain, childbirth is very, very painful, I understand. And, you know, that’s as far as I could say, being a man.

And if it was so painful, but the result and the outcome and the context wasn’t such positive and a beautiful thing, then women would only have one child, because there’s no way you would want to go through that again, but because the context of it, you can understand women will prepare to go on to have two or more children. Because it’s context and I had no context for my pain. I just was pain. When I was sedated, I didn’t have any understanding that I was sick and I was in hospital and I was having multiple operations on my arm. I just felt pain without context.

If I was able to kind of have some awareness of it, “okay, I’m sick I mean hospital”, then that gives you brain chance to catch up a little bit with the pain and say, “Okay, you Okay?” Can I let myself down dude, you’re in pain because look to your right you’ll, you don’t understand why but your arms covered in bandages, there’s obviously something wrong. You start to dial back the pain because you you understand what it is and why and why you’re experiencing it. But if you robbed somebody of any ability to to develop a relationship with their injury, then all you are is pain. And that’s all I was, you know, there were periods where I just was pain. And it sounds melodramatic, but

Kali Dayton 24:58
no, it’s not If that was your truth, that was your reality. Yeah, absolutely. Yeah. And so the irony just, it’s painful, because we have done this for decades, with the understanding that we’re sparing people fear and pain, and that’s exactly what it was what you were sent into. I also believe that we’re much more likely to more appropriately treat pain with adequate narcotics or less narcotics potentially, if we can ask a patient, if they’re in pain, and you were severely septic, you had septic shock.

Is it a huge risk factor for delirium? So even though we can walk in ICU, I mean, it’s a lot of times it just seems like a sepsis unit, because there’s a lot of sepsis going on. So you’re, you’re already at high risk of developing delirium. A lot of patients No way can walk in ICU. They’re delirious. Yes, they can be agitated moving around. But sepsis just takes it out of you. Ultimately, yeah, right.

You’re just so inflamed, so sick, that a lot of times these patients and then we can walk in, I see you have to have a sitter with them. danlos at the bedside, but they don’t have I mean, we went over two years without any South excavations. So I can’t think of scenarios in which we’ve sedated people for sepsis. And I think that’s important because you came in as a high risk of having delirium. And you were given medications that cause delirium. We don’t do that with kidneys, we look at creating humans and we say, “Wow, they’re, they’re developing a kidney injury, we better look at the vanco and adjust the dose we better.”

I mean, we have a now it seems silly, but we had all this controversy over IV contrast for CT scans, right. Now, we know that it’s not so interest to the kidneys, but that was one of our big concerns. Well, their kidneys are injured or at risk of having an injury because they’re in septic shock. So we better not give something that will hurt their kidneys. But when it comes to the brain, we’ve done the complete opposite. We have some that comes in severely septic and we say, Wow, there, instead of saying, well, they’re at risk of developing delirium, we better avoid medications that cause delirium and brain injury and cognitive deficit and post ICU PTSD. We do the opposite. We say, Wow, they’re really sick, we better get some things that will hurt their brain more.

Aron Welsh 27:22
And, you know, I cannot think of an example. In medicine, where you are in physiotherapy where you would do that with any other condition. There isn’t, I can’t think of another one, we’d say, Okay, this is what’s wrong with them, we will give them something that will exacerbate that massively. I can’t think of where.

Kali Dayton 27:43
I think it’s I don’t think there is it’s it defies logic, right. But yeah, to be able to apply that knowledge, or that logic, we have to understand the reality of it. And only survivor voices will really provide us the truth about what our interventions cause in the ICU in that moment, and then afterward. And it’s powerful to hear your perspective as a veteran, and we interviewed Paul, a few episodes ago, talking about veterans.

And there are so many of you out there. And I’ve had anything ironic thing is that on all my discussions, people have said, well, our patients have PTSD. Well, we have veterans, and I want to just to grab them by the shoulders and say yes, yes. I’m glad you care about that. Let’s talk about the reality of that. Why would we say everyone has their own experiences they’re carrying into the ICU with them. Everyone has their own trauma that they’re carrying around with them. ASD is part of the medical history. We should deeply care about that when we’re considering causing people to be delirious. What would you have the ICU community understand about veterans? I mean, what you’ve experienced was horrific the first time why would you want people to experience it again? Yeah,

Aron Welsh 28:59
I think it naturally predisposes. You know, if you put them in a dilemma in such a situation, it naturally predisposed to have a worse time. And, you know, the brain mechanism, which causes PTSD is already lined up. Now, how well that’s been treated in the past. Yeah, I mean, they could have had excellent treatment in the past and, you know, not really have a huge amount of issues that are challenges that they’re dealing with, but the photo is already it’s already a bit late. So it doesn’t take that much to set that process off again. I mean, it certainly did with me.

You know, it was it was a truck I was put straight back on. So I think you know, it’s something that that, particularly with veterans that need to be massively aware of and have a sensitivity towards, you know, take out right, okay. If we put this guy under or this girl, you know, deep sedation, with with medications that we know are likely to cause delirium, then there is inevitable outcome to that. And that outcome is going to be either an exacerbation of PTSD or it’s going to, it’s going to rear its head again, and that they’re going to, they’re going to experience it, they’re going to experience it a lot quicker and a lot harder.

I think it needs to be wherever. And I, I don’t remember, it isn’t being considered with me, at any point. At the gym at the fact that, you know, hit the fact that my military history may have some sort of bearing the fact that as a veteran, it was never, that it was never, never discussed. And it’s not like I turned up at a hospital as John Doe, you know, kind of was there and knew my history, it wouldn’t have taken, you know, it’s made it so that, you know, when the the looking at, you know….

moving somebody into an ICU doesn’t start to make a decision about if they’re gonna stay, and if so what level of sedation they’re going to give them then maybe they should be thinking about making that one of the questions that they start asking family and friends because, you know, if this guy’s a veteran, right, okay, as the attorney counseling hasn’t had any problems in the past, and you know, if there’s it slightest doubt of the possibility that is there, then you know, they’ve got to be damn sure what they’re doing first.

Kali Dayton 31:29
I wonder, could you talk about the experience, we’ll call it the experience of seeing the child with the shrapnel in their head and a mother’s arms and the guilt of having to leave them there. And then was it directly after that you go into this scenario of having everyone in the world blame you further.

Aron Welsh 31:52
Yeah,

Kali Dayton 31:55
That kind of guilt I don’t. That screams PTSD, not just like, the imagery. But the feelings of how real that was that deep emotional pain that we want anyone to experience. And

Aron Welsh 32:11
that pain was that emotional pain was visceral. That emotional pain was it caused a physical, right. It was wrenching inside.

Kali Dayton 32:24
And he makes such a strong point that you would have rather have known that you were critically only ICU that and to have felt that

Aron Welsh 32:31
I would rather have been anywhere doing anything than I’ve done that. Now. It’s happened to me, and I can’t set the clock back. In all honesty, I wouldn’t, because I’m going to, you know, do my best to make sure people hear my voice itself. This doesn’t happen to other people. But you don’t right then and there. If you were to give me a choice of being literally anywhere, then having that experience. I There isn’t any. There’s no way that it who is that bad? That you would prefer that.

Kali Dayton 33:06
When we first started talking, you said that if someone would invite you give you two options of being in a medically induced coma, or having your feet in the fire? You were ready to start taking your socks off? Oh,

Aron Welsh 33:17
sure. All day long. Yeah, that’s not you know, that is no bridge. It was that bad. But I would have preferred that.

Kali Dayton 33:27
And people especially on the nursing side, say all the time, “You better give me all the medications you better knock me out. If I have the tube down my throat.”

Aron Welsh 33:39
Do they really!?!?!?

Kali Dayton 33:42
Oh yeah. That is the common consensus because I think because all white coming from completely complete ignorance, right? They have never had those personal experiences, but or they’ve only been sedated for maybe a day and not gone into full delirium.

Aron Welsh 34:02
Because time warps. You know, a day could be long. But there’s not a day down there. It’s like the movie Inception where the lower the go the more time that’s real. That’s real when you’re sedated. But yeah, sorry. Yeah, you’re right. If they knew what it was, like, down there, or can be like down that. I’m gonna get you know, I may have I don’t quite have. Well, I don’t know, I don’t know whether my experience was worse than other people. I know. I’m probably more vocal about it. And I’m probably more vocal about it because I do have a medical background.

I do have a certain amount of agency and I don’t want other people to go through what I did. And you know, you’ve mentioned COVID earlier, and the cover page. It was that that really kind of you know, I was writing this down anyway as kind of a therapeutic cathartic exercise. But you know, it wasn’t really until I saw The ICU beds, filling up with COVID patients that I thought this is a mental health time bomb waiting to go off in society.

I mean, well, yeah, when we lock them in certainly the UK did a mental health problems has gone through the roof, purely on the back of people been locked in the houses over long hours, you’ve got these guys like me who have been locked in their brain in the ICU bed for, you know, for weeks on end, see how they’re gonna come up and you know, in a few months, that’s why I wrote the book.

Kali Dayton 35:32
And we have no support for them. We put them in delirium for weeks, we take away their ability to stand, walk, talk, swallow, and then we send them to rehabilitation or LTACH and we give them no heads up, that they’ve had delirium that they may suffer from Post ICU, PTSD, Post ICU, dementia, that their lives will never be the same again, what kind of resources or education did you receive before you discharged home?

Aron Welsh 36:02
Absolutely nothing. Absolutely nothing. I came out. And I thought I had lost my mind. Because I didn’t know why I’d gone through what I had, I was still going through it, I thought literally thought I’d lost my mind. And it wasn’t until I started communicating with people in different support groups. And you know, I was like, “Okay, this is a thing. This isn’t me. I have not lost my mind. It’s a thing that I’m going through.”

And lots of other people and you know, a series of stories, and they were like, kind of, okay, this scenario was different. The geography was different. But it was largely the same. You know, stories that I heard of, you know, when when she was in an ICU bed, and they were catheterized. You know, she fought she thought she was being violently raped. repeatedly. So yeah, I, you know, yeah, sorry, I’ve lost my train of thought I’ve covered. I mean,

Kali Dayton 37:13
That is what people report, and I think they’re, they feel safer to talk about it amongst other survivors. People talk about Yeah, yeah, they go home, they try to tell their families and their families kind of shrug it off. They say, Well, no, that didn’t happen. So get over it. I saw you, you were just in the ICU bed. So it didn’t happen. So it doesn’t matter. But also,

Aron Welsh 37:35
also the point that a lot of that, you know, you’ve got to remember that a lot of these, these family members stood vigil by somebody’s bed for days, weeks, sometimes even months on end, and they’ve got your heart. Geez, they’re just happy you made it. I mean, they’ve stood there and watched us is going to die, she’s gonna die. You know, they, they just relieved you made it, they’re relieved, you’re out of hospital, they’re relieved, you’re not bad.

So anything else is a bonus. So that that’s, you know, trying to get people to understand that and yeah, I wasn’t select communicated with a spot. This is lives that I’ve started to realize. One thing it was, I was very fortunate in that because I was ex military as fast track treatment. And I had very good therapy very early on.

But I have learned that I am very much in the minority with that. Because the vast majority of people, it wasn’t prompted by it wasn’t kind of cascaded, cascaded down from the ITU, on my experience, this was kind of separate. So I was like, how a hospital and I was on my own. Get on with life. It was help that I saw and I knew that I would be able to access therapy quicker because I’m the veteran. Yeah, so and I did,

Kali Dayton 39:04
and your medical, so you knew how to navigate the system. And you probably have enough cognitive faculties to work through that process. But so many of the survivors I mean, have severe anxiety picking up a phone or they can’t figure out how to use their phones for months after the ICU, let alone how to find the resources that they suddenly know that they need. They don’t know that and if they mentioned things to the primary care physicians, for years for decades, I think up until recently, they were told, Well, only veterans can have PTSD.

Aron Welsh 39:37
I love hearing that….. It just absolutely baffles me and it’s just, it’s just an absolute lack of the…..even the basic understanding of what PTSD is, okay. Veterans are more likely to get because they’re more likely to see stuff or do stuff that’s, you know, for renters, but you know, anybody Got a, you know, I’ve got friends who are police officers who, you know, have had experiences and PTSD is not you know, it’s not privilege of vets more likely diagnosis in veterans. You know, it’s a, it’s a normal response to an abnormal experience, and jeez, intensive care experience.

Kali Dayton 40:24
And then we exacerbate the abnormalities by throwing them away from reality into this horrific alternative reality, that’s even worse. Yeah, yeah. And so in a perfect

Aron Welsh 40:37
the experience that you have in a coma.

Kali Dayton 40:43
And if you could create this ideal discharge process, or outpatient support system, what would have helped to you, as you’re walking away from delirium in a medically induced coma?

Aron Welsh 40:58
I think I just should have been assessed. Earlier on, I should have been assessed full stop. But yeah, people will should be assessed more quickly, and explain to them why they’re experiencing what they’re experiencing. The experience that they are having, is not unusual. And yes, we understand how vivid and horrific it was.

Because think of it, if at any point, and nobody ever did go, yeah. Yeah, we know how bad you know, we understand how bad it can be. That never happened. I think so. Having somebody who understands what can happen to people, so that they are there to kind of give them some information and say, you know, and, and, and start signposted and so appropriate, when they’re ready, you know, because that’s another thing.

I think, you know, people are not ready to start going to enter any church and engaging with with therapy immediately because they saw traumatic. You know, I don’t think so. There needs to be signposted. That when they’re ready, that you know that there was therapy that they can access, because at the minute, as far as I know, in England, I don’t know what it’s like in America, there isn’t anything at all.

Kali Dayton 42:31
And if people said, well, no one’s come back and said that to us. I thought you’re so traumatized. You had no support, you haven’t worked through it? Why would you go back to the place that traumatized you and be triggered all over again? So there’s a huge disconnect.

Aron Welsh 42:48
Yeah, yeah, I the thought of me going into an entire Intel intensive care unit. Now brings me out in hives. Because I know that it isn’t the intensive care environment is not that scary, guys. It’s really not. It’s just a lot more calmer and sedate than a normal medical ward is. It’s a picture of efficiency. And it’s, you know, isn’t that scary? But I just know the idea of what? Yeah, there’s nowhere I’ve come back and said it’s never been and it didn’t, you know,

Kali Dayton 43:30
and episode three, Susan East talked about her three experiences with ARDS, the first time she was in medically induced coma, watch babies burn the whole time. And then she went to a lawyer and had documents drafted protecting her against sedation. So we’re given the option again, are you able to do your own Advanced Directive, which you should? I don’t know what it’s like in the UK, but what will be your demands moving forward?

Aron Welsh 43:58
I would not say it, I think, yeah. I cannot think of anything that they couldn’t manage in some way. Better today in me. I did. The just isn’t there just isn’t any. One of the things, you know, as I said, when when COVID happened, and we saw that the number of people find themselves in intensive care beds start to rise. You know, it was very early on in COVID.

When information was was was fairly, just starting to filter out about what was happening to people. And remember, the Wi Fi caribou are watching news and talking about how many people find themselves in intensive care, and the color just drained from both of our faces. And we just sort of looked at each other. We’re both thinking the same thing. What happens if I get find myself in intensive care. I’m gonna be back there, potentially go through that again.

Karen’s gonna sit by my bed, knowing what I’m going through, or imagining what I could be going through. I might not, you know, I can be one of the lucky ones doesn’t have any sort of delirium because not, you know, not 100% of people do. We know that right? I could be quite happily snoozing away. But she’s stood there for that period of time, thinking he’s back there. And the idea testified both of us. So it kind of answers your question. Anything I, you know, that has to be the absolute last resort. I kind of knows that. There’s no wish everyone knew where she’s, yeah, there’s no way she’s gonna let today.

Kali Dayton 45:59
How fortunate that you have such a strong advocate sounds like she has a lot to save your life the first time. And totally the way can walk can I see you there COVID unit, they feel like they’re delirium rates were fairly low,

Aron Welsh 46:13
which was fairly low.

Kali Dayton 46:16
Like they rarely had patients that were delirious. And those that were delirious with COVID were because they had been paralyzed and sedated. And then coming out of, you know, as soon as they could be supine, they had the sedation off. Okay. So yeah. When we talk about this high rates of delivering with COVID, let’s look at the medications we’ve given and give it some credit, how much it really was coated, and how much of it was the benzodiazepines, the propofol, the fentanyl that we were giving, just because they were on a ventilator, when we audit, that’s

Aron Welsh 46:51
what the needs to be looking at. That’s what they need to be looking. They need to be going okay. Right. These people did these people did and what the analysis? Yep. Okay. commonalities, both COVID. Okay, it can’t be that because this group does cover letter, what are the commonalities? You know? But in the treatments while we were both on a ventilator, okay, this group didn’t, and this group did. Okay, what drugs were they given? Okay, this group was given it, and that group wasn’t given it and this group clearly had the the numbers of delirium. Okay.

Kali Dayton 47:25
And I hope we have also survivors coming out and talking about what it was like to be awake and walking on on the ventilator and what it was like to be, I mean, like to use the word sedated. Because it’s just a bad word in my vocabulary. And what would you like if you were to go back and work in intensive care again, as a physiotherapist? How would this impact the way you see patients on ventilators? You’re talking about Karen be mortified by wondering what you’re going through, but as a clinic clinician, how should we view patients that are medically induced comas?

Aron Welsh 47:59
I see those are two different questions, if you if I may, if you’d seen some me, how would if I was still working as a physio and I was working in intensive care? How would I’ve used patients? After my experience I couldn’t. There’s no way I would be able to stand there in a ward and see people sedated.

I wouldn’t be trying to stop in the dots for today. I just wouldn’t be able to do it. I couldn’t cope with looking at patients and thinking that they go through what I did. I just couldn’t in answer to what the other side of the question is what medical doing differently. I think deep sedation is used routinely to make pizza. I know it’s not as contrived as they should have been. But ultimately, it’s to make patients much more compliant.

And that, I think, is not gonna freeze. I think rather than kind of bottom in somebody out with sedation, and then bringing them up to a level I think you should, that needs to be looked at hugely, because I get that some people need to stay. And I was probably one of them. It was just the level of sedation. That’s the question mark. So I think they need to start looking at ways that they introduce sedation, from a top down rather than a bottom up approach, but to the level that blows my mind that that doesn’t happen.

Kali Dayton 49:24
oblivious to the reality of it. We can’t really weigh risks versus benefits and we don’t understand the risk.

Aron Welsh 49:31
Yeah, yeah, I think. Yeah. Because people are not because they don’t know. Yeah. And that’s why I

Kali Dayton 49:44
was I’m so grateful for you being willing to write a book, be honest and real about your experiences, reveal the ugly side, and then come to us in the medical community and hold us accountable. I think it will be…

Aron Welsh 50:00
This work isn’t a vanity project, if I find if one person reads it after they come out of a coma, and it helps them, then it’s worth it if one medical professional reads it and says, Okay, let’s not deeply sedate that one patient, that it was worth two years writing the book.

Kali Dayton 50:22
That’s how I feel about the podcast. I mean, just knowing thus far that maybe a dozen patients have been treated differently because of the podcast makes it Yeah, you know, the hours and 1000s of dollars, you know, all the things far more worth it. So I think we’re on the same mission, and I’m looking forward to working with you more closely.

Aron Welsh 50:39
Absolutely. Yeah.

Kali Dayton 50:40
And you have a website, right for your book.

Aron Welsh 50:44
Yes. www.Neverreallyover.com. And it’s available on Amazon never really over by Erin Welsh. Yeah, just come on in. It’s not an easy read. But it’s worth it. I think. It’s yeah. It sounds like it sounds really, you know, traumatic, and it is, but you know, there’s some humor in there. And there’s, you know, I do live, and I do get better. And yeah, there’s a, there’s a happy ending to it.

Kali Dayton 51:13
Some units are talking about making the pot this podcasts required listening when someone starts working there. And I think your book should be part of the required reading list, as well. So that he mean, like an actual real perspective on patient care.

Aron Welsh 51:29
Yeah, I think sometimes, you know, it’s a slap in the face therapy, isn’t it? It’s, you know, this is what can happen, guys, this is what can happen. This is gonna happen every time. And if it happens, it’s not always this bad. But this can happen.

Kali Dayton 51:46
I do the webinars, I have told people that I come as like a punch in the gut. And then I let butterflies come in. Like it’s you we have, we can’t fix that we can’t confront. So we have to realize what we’re doing wrong. But I also deeply believe that we can fix this, that we can move forward with a resolve to change and help prevent so much suffering. And that’s where the excitement and the joy should come in.

And we can humanize the ICU so that we can treat patients as humans see them as human and watch them walk out as themselves. I deeply believe that otherwise, I wouldn’t just sit here and dwell on all the harm and the suffering that’s happened. It’s for a reason.

Aron Welsh 52:27
Yeah, tons of key staff are some of the most highly trained, dedicated, amazing people, you know, I, you know, please don’t want anybody here in this podcast, making it you know, it must be really angry or bitter with the staff, you know, they saved my life. And they were amazing people. And I think if they had the slightest idea of what I was going through, they would be mortified. Because they were such good people.

Yeah, I just described the ICU nurses in my, in my book is the SAS of the nursing profession. You know, they like Special Forces, nurses, if they were just so on it for, you know, their 12 hour shift. They were just all of everything. And I think, if anything new, what some purchases were going through, they would they will be up in arms themselves, we wouldn’t even need to do this.

I think if we’ve got the message across to them, it’s it, you know, yeah, I’ll plug in my book, if the all Red Viper. Or if they all heard other stories, if they all, you know, if they spoke to some people, and they knew what was going through, they will be driving the change not as, as no way. There’s no way they would let that go on if they knew what was going on. That’s definitely

Kali Dayton 53:51
Nurses….. I just I’m a little biased because I’m a nurse practitioner, but I am a nurse that forever. And those are the best, most noble humane people on our, in our society. When they know not if when they know, they will turn the ship around. And I also bear the message that this can be done differently that most patients do not need deep sedation. And it actually makes it easier for everyone as mentioned in the previous episode.

So we have to know the reality and know what could be and be willing to change. And I think that willingness comes from survivor voices like yours. So thank you so much, Aaron. Pleasure. Check out his website. We’ll be in contact, follow him on Twitter. Get things to calm. Thanks so much, Aaron.

Aron Welsh 54:37
Thank you very much.

Transcribed by https://otter.ai

 

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