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Susanne was admitted to the ICU for ludwig’s angina. When she required intubation only for airway protection, she was placed on the conveyor belt of ICU care. How did deep sedation and immobility impact her physical and psychological outcomes? How much more unnecessary time did she spent suffering in delirium on the ventilator? She tells us all in this episode.

Episode Transcription

Kali Dayton 0:37
Hello, and welcome back in many of the case studies shared in this podcast we have discussed care of patients with ARDS, sedation, paralytics and immobility can occasionally be appropriate during some extremes of ARDS, and repercussions such as ICU acquired weakness can seem to be an unavoidable result of conditions such as septic shock. Yet, what about cases in which sedation and immobility is inflicted on a patient without high ventilator settings? Can they develop ICU acquired weakness without significant risk factor such as paralytics, or septic shock? Can sedation and immobility alone caused days two weeks of extra time on the ventilator? Suzanne, an ICU survivor shares with us her unfortunate but not uncommon ICU journey. Susanna, welcome to the podcast. Thanks so much for being willing to share your journey with us. Do you mind giving us an introduction?

Susanne 1:34
Hi, yah, thank you so much for inviting me. My name is Suzanne, and I’m 49 years old. I’m originally from Germany, but have been living in the States for nearly 10 years now with my family in Florida. And I have been working in tourism, my whole life, my whole working life. So I left Germany when I was about 25 and started moving around the world living in different countries, and then finally met my husband and we settled down and in Florida, and yes, I’ve been working in the hotel business for the past 20 plus years and traveling a lot. Meeting a lot of people around the world and always considered myself being in good shape. And being pretty healthy. I looked out as looked after my health and my that remind nutrition a lot and made sure that I was on the right track.

Kali Dayton 2:36
And you found yourself in the ICU. It really can be anyone.

Susanne 2:42
Yes. So, you know, when you when things like that happened to you. And in my case, it wasn’t without like a previous illness, how I ended up in ICU. But when you think about why it happened to you, and then you start maybe seeing some signs, but not signs. You know, there were issues. So I had a bacterial infection, which is I mean, the technical, technical term is Ludwig’s Angina, which is it’s an illness which basically doesn’t exist anymore. I mean, most of the doctors that saw me that, you know, they’ve never seen that before.

And it’s originating in the teeth in the mouth. So when I think back, I did have issues for the past three years, you know, with my, like stroke pain and two teeth issues, but nothing really severe, nothing that you know, whatever, you know, wring the balance. So yeah, so the like, I mean, it all started one morning I woke up and I had throat pain and ear pain on the left side. But it wasn’t really so surprised because I had a cold before that. And it happened to me often that when I had a cold then after it became like, like a bacterial infection like a sinus infection or bronchitis or something. So I thought okay, that’s just something something else. So I went to the doctor and they did a strep test and it came back negative.

So they sent me back home and that said it wasn’t you know, vital thing. And, you know, just said, you know, stay at home, get some rest and, and it will get better. So, the next day I started to deteriorate and I you know, getting weaker, I couldn’t eat. I had a lot of knowledge I had to throw up had a fever. So that night I went to urgent care. And then same COVID test, strep test, everything came back negative. And again, they said you know it must be viral. So you know, just go back home. Good luck, and good luck. Yeah. And then the full on Night, I could feel that my whole throat, neck was starting to swell. So it became like really swollen. And the next morning, it was already like, you know, all this part really big. And so I started to panic.

And you know, I said to my husband, I think it’s better that we go to the ER. And so we did that we went there nine o’clock in the morning, and spent the whole day in the ER, until they admitted me that night to the hospital. And they were out, they weren’t actually going to put me into ICU already, because they said it was better to have closer control. But it was full. So they brought me up to normal hospital room. And you know, the negative, I mean, the timing was not the best because it was a weekend of Fourth of July. It was a weekend. So it was Friday night.

And so until you know, the most of the doctors were not in the hospital over the weekend. So basically, nothing really happened until the following Tuesday in terms of a treatment plan or something so they will put me on antibiotics and steroids. And I started now started to get better than what started to swell again. So it was like really like a long waiting period. I think they just wanted to see the antibiotics work but I think it you know, time was lost because of this situation that nobody really with with authority was was present in the hospital, someone who would take a decision say Okay, let’s look at this closer.

So that it is a CT scan and they saw that there was some fluid accumulation and what they call a neck cellulitis. But yeah, they were trying with with antibiotics for now. And yeah, so then the Tuesday, which was four days after, I was still swollen, so we decided to do another CT scan, and they realized that the information had spread, like they were more abscesses in the neck. And that’s when they decided to or in the end, we decided between all of us to to do surgery to drain to drain the fluid out. And so they did that, you know, was passed. Last surgery, it was my first surgery in my life. I never had surgery before that and I had never had pull anesthesia. So it was kind of exciting. But I woke up I was you know, I was fine. I was tired. But I thought okay, that’s it, you know, we did it, see when I can go over when it’s over. And so the next day,

I started swelling again. And so ENT came and they said okay, that seem to be an area where they didn’t reach the drains that it had placed into my neck. So we did another CT scan and they saw that, you know, there was this part of the neck where there was a new abscess, and they couldn’t reach it. So they gave me several options to either do it, you know, in place or to do it with the with the long needle or to do it again in the surgery. So I decided to go for another surgery, because I just wanted to have it properly done, you know, to have everything taken out. And so the next day, they prepared for the for the surgery, I was already very very small and I was starting to you know to not having issues to breathe. I my oxygen levels were always good. So there wasn’t really an issue but I was obviously you know, having issues too. Now it’s creating a lot of panic when you have this throat getting tight.

Kali Dayton 9:11
Right even just move air through your trachea.

Susanne 9:13
Yeah. And and, you know, I had to cough a lot and swallow was difficult. So yeah, so they started preparing for the second surgery. They brought the thorax team in as well because they wanted to look at the thorax and everything. And they brought me in and and that was it. So I never woke up surgery until the day I woke up.

Kali Dayton 9:39
So essentially intubated you, yeah, protect your airway because things were getting so swollen and tight. Yeah, they needed to make sure that they could that you could get oxygen, right? Yeah, that was exactly. Obviously an essential move. Great move. Did they talk to you at all about being sedated? What you might experience And what your preference would be?

Susanne 10:02
No, I mean, not at all. I mean, I remember in the very beginning, I think it was when I was still in the ER, one of the doctors said, and I think, you know, it was a formality said, you know, “if there was a life threatening situation, would you agree to be intubated?” And I was like, “Yeah, sure.” I mean, you know, what can you say, but never thought of that actually happening.

And so when it happened, I mean, I must say, my husband was with me the whole time. But it’s a chapter we haven’t really talked about, because he’s still processing and trying to, you know, go on and forget. And so most of the information that I have, I was able to, you know, I got from my medical records, not because someone told me, so, I really, I don’t know, at this point, if they asked him for any, you know, what do you think? Because obviously, at that time, who was the one who was taking decisions on behalf of me?

But yeah, I mean, I ended up in induced coma for 16 days. And the thing was, obviously, as you say, they did it to protect my airways, just I mean, in case, but you know, obviously, until they really got to the source of the whole infection. It took them another six days. From the moment they put me into the coma until they started to look into my teeth, which was the actual source.

Kali Dayton 11:41
So throughout the podcast, we’ve talked with a lot of survivors, but particularly ARDS survivors, were their lungs were extremely inflamed. They were high ventilator settings, they had prolonged time on the ventilator. 16 days on the ventilator, that’s significant amount of time. Yeah. But you had this inflammation, the cellulitis, this Ludwig’s angina, and your neck.

But the rest of you was fine. Beforehand, you were awake, oriented, you were calm, you weren’t fighting, you’re completely autonomous. And this is kind of where I think your story is really important. Because in the medical field, especially in the ICU, sometimes we accidentally sign people up for a lot more than what they came in for. Yeah. And so I’m sure they assumed or it’s just habitual to start the sedation after intubation, they assume that they would make you more comfortable that it’d be too miserable for you to be awake with this tube in your throat. And so they automatically the knee jerk reaction just sedated you. Yeah. And what did you experience?

Susanne 12:50
So you know, I mean, the whole story is, is it was very frightening the whole scenery and I’ve listened to a lot of podcasts and read from other people that that’s the case that you have situations which which are very frightening. And in my case, it was very curious because so I wake up in my delirium now thinking that I was awake your alternative reality? Yes, totally.

So I was in this hospital room, which I suppose for the hospital and but it all felt like I was on the on a ground floor like I wasn’t a basement of a hospital. And I could see I could see nurses I could see doctors I could even see my husband sometimes and I could even hear him but I I had this I had this sensation, I was convinced that it was all a conspiracy and that my body had been sold to this people this location where they were doing like genetic research and transforming people and an organ research and I don’t know what so like harvesting.

Yeah, so I you know, I saw my husband but I was like, thinking for him he is not aware he’s still creating for me but he’s not aware that I’m you know, that’s it because I’m stuck down here and I don’t think he will be able to get me out he’s just into this the same way as I am. So I would see this sign on the wall of my room where the you know, every time I noticed the shift changes they put up them name and pager number and I could read my husband’s name on there and I was like, you know, even that they fake it I mean to make it look worse thing.

So So yes, I was in this in this in this situation. And it’s so funny because I mean, funny. It’s, it’s amazing when you wake up, and then you realize how you connect certain noises and certain images to what happened in the delirium. So I had this idea, I was convinced that I said that I would be transformed into a new genetic species, which was like half human being half fish. They even showed me a picture.

And it was, you know, it was like, the new species of the world and New Warriors, you know, I’m indestructible. And I was very afraid, because I thought that’s happening to me. I probably won’t have a soul anymore. And then I won’t be able to reincarnate, and come back to my family. And obviously, it was very scary, because I didn’t know where I was. I mean, I had the sensation I was, but I wasn’t I didn’t know was I really live still was I on Earth, Bossa and in a different galaxy in a different world. Where was I?

And this was, I think, the most frightening part of it. Because you ask yourself, why What have you done to deserve this to be in this situation stuck, nobody can hear you. Nobody can understand you, you can’t move, you’re totally. And I’ve always been a person that I I’m very controlled of, you know, I like to control situations in my life and where I’m going to and stop being stuck in this situation where you can’t control anything, you just swayed there and, you know, see what’s happening to you.

And see, I mean, seeing my husband there and not being able to communicate with him. I mean, it was a it was horrible. It was really horrible. I was trying to my parents passed away a couple of months, quite many years ago. And I was trying to find them like trying to connect with them because I thought, okay, if I’m dead, there must be somewhere around trying to, you know, find the light to cross the tunnel, but then I couldn’t find it. So I thought, okay, that I’m probably not dead if you know.

And so what happens is that some kind of situation from your life goes on, into this delirium. So in my case, I can imagine because I was watching this movie with my kids. Couple days before everything happened about this. It’s called look at a new kid’s movie, where this little boy living in the ocean, and he comes out and he becomes a human being. And it’s a very cute movie. So I don’t know why I have had this

Kali Dayton 18:08
You were going to be transformed into a fish?

Susanne 18:10
Yeah. And you know, I could, so I could. So I had the sensation, my hair was already gone, because it was probably all stuck somewhere and I couldn’t feel it. And every time they would change the dressing, I had the sensation that, you know, the, the fish scales, they would like, you know, put them on or something. So all these noises that happened the real life, were part of my delirium, but obviously translated to a completely different thing.

And so, all this that happened to me, and I heard that also in another podcast, the nurses weren’t very friendly, you know, they weren’t really treating me as, as someone in life, you know, it was like, you know, that’s someone there but about in the bed. Yeah, exactly. And even though in my DM I was not like a movable you know, I could communicate with my hands and so, so on.

So it was probably the translation of waking ICU because in my delirium, I was intubated by that could I could move to some stage. No, I could turn around and I could move my legs and I realized I still had both legs. I wasn’t, you know, I didn’t have a fishtail yet.

Kali Dayton 19:44
So in your delirium, you knew that you were intubated?

Susanne 19:47
No, no, okay. No, no, no, no, I didn’t have well, let’s say this way. At some stage. Yes, I realized and that’s when I was trying to pull it too. So the thing was I was I remember that one time they would. And so I don’t know if this was real or not, but they were trying to get the tube out. And I was too agitated. So it didn’t work out. And they were saying, Okay, let’s try it again in two or three more days. And that was when I realized I was intubated.

Kind of, you know, I wasn’t, I wasn’t aware of the tubes, but I was aware there was something. So I got really, I got really impatient and thought, Okay, I have to do something, I can’t sit here and wait until something else happens, are they gonna finish my transformation? Or I’m gonna die eventually. So that’s when I decided to pull the two. And obviously, it didn’t work. I did, I did read in my medical records, because it was, you know, I asked my husband later if it was true. And he said, No, but he wasn’t in the hospital 24/7.

So then I read in my medical records that it had actually happened there when I tried to pull the tube. And, and then the whole, this whole new scenery started because then they came to rescue me. And then there was this nurse that got very upset with me, because she because I was trying to kill myself. And then she got really mad. And then I heard from another nurse that this is all my delirium, okay, this is not real, so that she had lost the baby. And that’s why she got so mad with me because I wanted to end my life.

And I have kids and, and so she talked to another nurse, and then it was his shift. And there was the night before they brought me back. So it was his shift. And, and then that night, he tried to disconnect me and pull the two. So I was, you know, the first time I was trying to do it, the second time, he tried to do it. And again, they came and rescued me, but then everybody thought I had tried it twice. And I was trying to explain that it hadn’t been me that it had been the nurse and that I really wanted to, you know, I had reflected of my life and I wanted to live and I wanted to give it a try.

And, and luckily, there was one nurse that she kind of, you know, understood what had happened. And, and, and said to me, okay, she would make sure that that nurse would not look after me again. And so it was this whole revelation or change of consciousness that I thought, Okay. Maybe they do try to save my life. And I have to cooperate a little bit. I don’t know. But I, you know, when I think about all this, I just realized that I that I was conscious of a lot of things not conscious in a way that I knew what was going on. But a lot of things that happen in the real world, translated into my new world, let’s say that way. So I realized it….

Kali Dayton 23:17
became twisted. I mean, maybe you had a male nurse, but you interpret it as he was trying to disconnect you from the ventilator- he was trying to kill you. Yeah, but that is my understanding. Is that completely real to you? Yeah. And that must be extremely stressful and terrifying to experience.

Susanne 23:37
Totally. I mean, again, the whole time, and everything I lived through, I never thought that I was streaming on that I was in a delirium for me, that was my reality. And it’s, it’s, and this is also something that I listened to in one of your podcasts. It’s not like a dream. Sometimes, you know, you’re in a dream and you just have to wait until you wake up. This is like, you know, you’re stuck in the situation and there’s nothing really you can do about it.

There’s no waking up and everything is gone. So the day they Oh, and then I, you know, they I felt that they were brushing my teeth the whole time. Because during all these 16 days, I had two major teeth extractions because they realized that the whole infection was originated from the from the teeth, so they pulled 18 All of my molars 18 In total, so I know they were brushing the teeth. And so I did. I did hear a lot of times the nurses talking to me, but again, I didn’t translate it into the situation I had been before and that that situation was gone.

I mean, the that I was sick that I got into the hospital that I had a different another surgery before all that was gone there was not part of of this. And so the day they they decided to bring you back for me was like, okay, you know, let’s give them another chance. Let’s let’s try it I’m going to cooperate and see. But it was more like to do them a favor rather than having the the the confidence that I would come back for me that it wasn’t this coming back. This going back to the real life. It was something different. I can’t explain. I mean, it’s not….

They’re telling you things like stay calm, we’re going to pick up the breathing to Tony things. And so you were cooperating and your own reality.

But yeah, yeah, I was, I mean, again, I don’t know how they, they they played with the ball players, not the right word, but how they, you know, increase or decrease them the sedation. But all I can remember is that, you know, I was sitting on the bed, and I was completely there, I was awake. And then you know, they came in and did a lot of tests, and then took the tooth out, which luckily was a very fast process. Super. I mean, when I look up, you know, when I think about it, it was like, super easy.

But maybe I just was very lucky. I don’t know, because and I heard that they had tried it several times before and that they had tried to kind of or that they used to do some kind of training process to train you to the day, you get the tube out. And then you hear everything that can go wrong and all that. So I again, I was very lucky. But they didn’t want to do it. And my husband had to fight hard to convince them to do it that day. They wanted to leave me intubated for longer time.

Kali Dayton 27:21
Do you know how many days for how many days? Do they try to wake you up or get you to to see if you could be excavated? You said that they had tried? And you even heard them say, no, let’s try and a few, a few days. But you were agitated, right? I was I was very patient back on. Yeah. One of our big fears for patients being on ventilators is that they’re going to take out their own breathing tube.

Susanne 27:48
Yeah.

Kali Dayton 27:48
Which is what you tried to do. But it makes sense considering the reality that you were in. Yeah, you’ve also said that you’re a person that likes to be in control. You like to know what’s going on? So have you been allowed to stay in reality and wake up after intubation? Do you think you would have pulled out the reason to? Or would have been at risk of that? If you had understood what it was?

Susanne 28:12
Without being in coma? You mean?

Kali Dayton 28:13
Yeah, just under today? Should we have been able to wake up and be yourself?

Susanne 28:17
No, I don’t think so. Because I mean, obviously, when you are clearer, in your mind, I mean, I understand you have to have some kind of sedation, because otherwise, if you’re an anxious person, you could kind of freak out to have this too. But if you know, it’s for your good, and it’s to help you survive, it’s the same as having the IV or whatever, all the things that they put into, you know, I don’t know because you, you know, you are in the real world.

I mean, the reason why I wanted to pull the tube was because I couldn’t I couldn’t wait any more. I just thought, you know, where I am now, I don’t want to be I don’t see any chance I can go back to reality. So you know, I might as well call the tube and, and give it a go. And it’s you know, it’s really tough because you think of your family and I was aware that I had kids and that I had my family and and I just couldn’t I couldn’t stand the thought that I would not be able to see them anyway because I would end up a fish.

I mean, as funny as it sounds. So, you know, I I just saw myself that at some stage. They they would throw me into the ocean and and that was it. So

Kali Dayton 29:44
What do you think can sound like a like a funny, silly scenario, but in reality, I’m trying to put myself in your shoes. But that was what I truly believed and mourning the disconnect from my family and missing my kids and we want My husband, like I tried to imagine how painful that would really be to deeply believe that.

Susanne 30:07
Yeah, because you really, you’re stuck, you don’t see any lucky outcome. And, you know, I’m not, I’m not a very spiritual person. But at that moment, I thought, okay, when I, when I managed to kill myself, let’s say this way to pull the tube and die, then I have a chance to reincarnate and come back as something and maybe have a chance to see my kids even as an animal even as whatever.

But being thrown into the water as a fish, and maybe not even be on the world we live on. It didn’t see that. And that was really the the thought that was the, you know, the only hope I had to die and to be able to, you know, maybe if there is some sort of reincarnation, come back as whatever.

Kali Dayton 31:12
And that’s something that really impacted me to hear survivors talk about the feelings of isolation and loneliness. When I think in reality, your husband was there most of the time, and you had nurses there, but you were not connected to them. And you were alone?

Susanne 31:30
You’re completely alone? Yes. I mean, obviously, because of, yeah, because you’re being ignored completely, by everybody. Most of the times, and so I think, if the if they were more aware or two that how much patients can feel and sense while being in coma, and they. And obviously, with COVID, it’s a different scenario, because of the isolation that it’s even worse, but if you don’t have COVID, and in my case, my kids were not allowed to go into the hospital because of the high numbers of COVID.

We had done yet. But having, yeah, even though I didn’t realize, or I had my own story, that I thought it was all a conspiracy, and that he was also into all this, it still gave me some kind of reassurance sometimes to see him or to hear his voice. And I think if that would be something that, that we could just let people know about the importance to have family members at the bedside and, and read to the patients and put music on the music they like and maybe even smells. Because you you hear and realize so much. I mean, it’s incredible.

Kali Dayton 33:01
None of its familiar.

Susanne 33:03
No. No, I mean, for example, I had this, the the to, for the feeding the taste of this, of whatever they feed you, I think it’s kind of I had this constant feeling that I had seaweed, the smell of seaweed, obviously, I translated that into, I was on this in this hospital, and there was, you know, the transmission to the fish, there were fish all around me. That one was breaking glass from the walls.

And every time a piece of glass would break, a little fish or seaweed would fall on the floor, it was all very human, it was all very wet. And I had the sensation that was like kind of part of the whole thing, the food or whatever. And when I woke up, I realized it was really the tube feeding ingredients, whatever it is, but it was just, you know, the moment I woke up, and I was able to speak I you know, I was I was desperate to get rid of this too, because I had made me so sick. But so again, as I said before, when you wake up and then you realize all these noises around you and you think, Gosh, you had that.

That’s it. That’s what I had heard or seen and translated into something completely different. So I don’t know if this could help the patients that are sedated to you know, the, for the nurse or family members to explain to them, you know, kind of what’s going on and what they’re doing the procedures and everything for them to understand why they’re in coma but Coming back to your initial question. So because they they took so many teeth out. That’s definitely a procedure that has to be done in under full anesthesia. I don’t think it has to be done being in a coma.

It might have helped the healing process because obviously you don’t use your mouth you don’t chew you don’t eat you don’t drink. You don’t swallow. But, you know, my question is, of what I’m questioning is why did it take so long? And why did they risk all the side effects that can come with an induced coma for 16 days? Why was so much time lost in between and I’m not a medical person. I’m not a specialist. I don’t know how much is too much or but in my opinion, a lot of time was was lost. And and then listening on the end to the to the podcast and reading and the damage that every more day can make on the muscles and everything else is really frightening when you think about it.

Kali Dayton 36:24
And you just sent me the medications you were on your on propofol, midazolam and fentanyl. And I don’t know when doses, but that’s a pretty potent combination. I personally have never given someone medazepam in the ICU, let alone in addition ever before. So I think you’re asking really valid questions.

Why? One: Why did you have to be sedated? You know, teeth extractions are painful, we can treat pain? We do that as outpatient procedures. Yeah, but I mean, 18 days- that that’s significant. I’m sure that did have to be done under general anesthesia. But does that mean that you had to have propofol, the dazzle I’m gonna fentanyl for 16 days. Look, and I wasn’t there. I’m not part of the care team. I haven’t seen your medical records.

But we don’t know that those medications, cause delirium, what you experienced. And we do know that those medications as well as the delirium, prolong your time on the ventilator. So that’s why I’m really curious to know that you heard days before your ex debated. Oh, let’s give it a few more days. Oh, let’s Oh, she didn’t pass. And they said that they were trying to train you. Maybe they were probably I imagine. We need down the sedation and things like medazepam. It’s a benzodiazepine, you can’t just turn it off.

Yeah, because after, I mean, it varies, but after a certain amount of time, you become dependent. So you can, if you turn it off, you’re going to have withdrawals. So between the withdrawals, and or the delirium, you’re going to have people come out, swinging and thrashing and trying to pull their tube out, which completely makes sense and what you’re near case. And our response to that, instead of saying, Wow, they’re in delirium, we need to get her husband involved. We need to communicate, we need to mobilize her, we need to get her back to reality and save her.

Otherwise, she’s going to stay on the ventilator for longer. Instead of all those things, we say, oh, yeah, that’s a failed sedation vacation, they’re too educated. They can’t tolerate being awake. Let’s turn the sedation back on, try again later, which can end up being days, two weeks longer on the ventilator. So your story really brings to light it’s a prime example of how these medications prolong the time on the ventilator, a lot of times time on the ventilator can be prolonged by new infections, deep sedation can cause a ventilator associated pneumonia, things like that.

But even without that, just as culture of seeing some of that’s agitated and responding with slamming them back into their coma, again, like you said, increases the risks of all those side effects. And in the why, as to why that was done that way. It’s a really complicated question. There’s a lot of cultural things, a lot of misunderstandings behind it, I’m so glad that you were able to be extubated, because that people after 16 days, they don’t have the muscles to breathe, and the more you weren’t in septic shock or any of that. So that really helped your chances. And I’m glad you were able to be excavated, but you still spent 16 days not moving any muscles. So what was that like to try to reengage with your body again?

Susanne 39:31
It was it was it was I mean, I remember the, you know, when I when I woke up first of all I was I was crying non stop. I was so relieved and happy to be to be back in this world. And I remember because then you want to start contacting other family members and I couldn’t hold the phone It was too heavy for me. I mean, it was extremely, it’s still heavy.

I mean, it’s, it’s ridiculous, but I couldn’t hold it so, and then the first day I got on my feet. thing was the following day. It’s like being on the worst cruise ship you can imagine you can stand. I mean, obviously, you can’t stand you’re on your own feet. You have this tingling, tingling feeling, and they’re just wallow, they just go away. I mean, it’s just like, crashing down. I mean, it’s it in my case, and I wasn’t. I mean, I’m not overweight or anything. I lost a lot of weight during the coma about 35 pounds.

Kali Dayton 40:51
And you started out do you mind tell us how much you weighed when you started out?

Susanne 40:55
I was at 130 pounds. And I’m five foot four. So I’m you know, I was a normal, not overweight, not super skinny. But, you know, obviously then ending with under 100 pounds, it was very at the limit, I would say.

Kali Dayton 41:11
130 to 100 pounds in 16 days. And when we think about ICU acquired weakness, we automatically go to septic shock no nutrition. So these really extreme things. Yeah, probably had sepsis going on. But you weren’t in septic shock the whole time.

You weren’t getting basal pressors a lot of the things that we consider to be contributing factors to ICU acquired weakness are massive sarcopenia muscle loss. But you had that primarily just from being immobilized 30 pounds? Yeah, and mostly lean muscle.

Susanne 41:47
Yeah, yeah. Because I again I I always used to look after my health a lot and I’m you know, this is something that I I really want to point out and also transmit to people that nutrition plays such a huge role before and after because I went in the whole thing and I had I wasn’t on a no medication, I’m not diabetic, I had no high blood pressure nothing I was taking my you know.

I would take my supplements on a daily basis, vitamin C, and D and things that are needed. And I think what that’s one of the reasons first of all that none of my organs failed during the whole thing. And then also when I started eating again, and obviously I have the big disadvantage right now that I’m still on soft food since four months now because you know, I haven’t been able to start with the implant procedure.

So I can too, and I have to eat soft foods so I can’t really eat the way I used to eat before with lots of salads and and things like that, but it’s extremely important to even though you have to put on weight when you get out but to do it in a in a conscious way and to eat healthy and and get the nutrition. Because you get out of that so weak and so missing so many institutions and malnutrition and I even had issues with my thyroid, which I never had before.

Probably because of that and and that’s definitely one of very important aspect to get the you know, I had anemia obviously getting out I mean all my values were all over and I think that helped me as well to get my muscle strength back pretty fast but it’s it’s hard to do you have to really work on it you have to get up every you know even while you’re in hospital, get up Sit down not lie in bed and try to do three steps one day then 10 steps the next day.

But the thing is that I had a PTS will come would come see me the few days that I was still in hospital after that. They would do some easy exercises and they would say okay, you’re fine. You know, you don’t need anything. So you you you discharged from hospital and you have no idea what really happened to you and you have no idea what can still come and so there are many aspects that Yeah, nobody would tell me okay, you have to look after what you eating. You have to start doing exercises. So I would have huge issues with my left arm.

My whole body seemed to be dislocated and probably There was because my head was always in the same position because I had them surgeries on the right side that they would place my head more to the left. So my whole shoulder arm was, was dislocated, and super weak. And, you know, I had no idea. So I went from, you know, doctors to physical therapy looking for someone and doing different methods until you know, I kind of was able to, to improve it. But that’s, I mean, to sum it all up, there is so much misinformation and missing information out there. And, you know, never had would they talk to me about rehab, or about how long it would take or what I could expect, once I’m out of ICU, and..

Kali Dayton 45:57
You came out of your coma, you can barely hold a phone, they stand you up the first time and you’re on pins and needles in your feet and credible pain. You can barely hold your own weight. You’re taking a few steps at a time progressing it’s day. And then they discharged you home and don’t explain, here’s how you get back to your baseline function. Here’s some more resources. Here’s more rehab, you were able to walk when you left the hospital?

Susanne 46:22
Yeah, yeah, a few steps, or two steps.

Kali Dayton 46:30
Imagine what it’s like. I mean, you have stairs at home, I assume I do. Yeah. Which was really, really had to help take care of you, you got home.

Susanne 46:38
Yeah. And I’m lucky that I have, you know, not only my husband, but I have my parents in law, they live with us. So I would get my food cooking everyday, I couldn’t do anything in the beginning. I mean, I could hardly take a shower, or wash my hair on my own. Because of that weakness. And I was so skinny it it hurt when I was dying in bed.

So I, you know, I would have issues, sleep, I mean, I still get very sore when I’m sleeping. Because you know, on one side, my shoulder still hurts on the other side, my now my knees started hurting, and my sciatic nerve. And so I mean, there’s a lot of things that come out after when you discharge. So for example, I would realize the first three or four weeks that my heart rate was extremely high. And I guess it’s a side effect on the medication. But nobody obviously told me about that. So the first weeks, my heart rate would be over 90, resting.

Kali Dayton 47:46
And what happens is, when you’re laying the whole time, all the fluid that normally be in your legs is in your thoracic cavity. So it really changes the way your heart has to pump to put it simply, and your stroke volume of your heart. So your heart doesn’t have to work that hard, because it’s so full of fluid. And then once you get up, all that fluid shifts down.

And now your heart’s been extremely deconditioned because it hasn’t been challenged. And it’s had a decreased stroke volume for so long. And so that is super normal for ICU survivors have a really high resting heart rate. And that could take five, six plus weeks to really recover from and that changes how well you’re able to rehabilitate and push yourself and your exercise tolerance. And yet we don’t we don’t think about that in the ICU and we don’t tell people that that’s gonna be how it is. No.

Susanne 48:39
Now the thing is that suddenly my skin would I would have breakouts like was when I was a teen and, and no horrible breakouts, my hair would start falling out. So I mean, all these things that again, nobody tells you, which I guess are pretty normal. And then you know, in the community, I heard that, you know, many people experienced that.

But yeah, I mean, it’s so many so many good things that and again, because I consider myself a pretty healthy person, I could deal with it, but I don’t want to imagine someone who is diabetic or you know, high high blood pressure or whatever. I think that can have very drastic long term effects when you when you get to all that so if you evaluate the advantage of being sedated and in an in a coma, versus the walking ICU when you can be there and conscious.

I mean, anything you know, that helps to at least shorten the periods or even avoid it. because you have your own sickness you come in with to the ICU. And then when you get out, it’s like, the balloon has been inflated so much with everything else.

Kali Dayton 50:14
Like come in kind of cellulitis and leave with a neuromuscular condition. Exactly. But that’s not the way we see it during that time. And now, I also want to talk about your husband, you said he can barely talk about this still, I think we really overlook the families and their psychological burden of their experience.

I’ve never gone 16 days without talking to my husband. I’ve never gone 16 days without talking to anybody. So the isolation that you experienced and the separation that he experienced, while wondering if he was going to lose you, of course, what would that have meant to him, for him to be able to communicate with you for you to be able to use your phone to text him and or write or, or talk to him during that time, and for you guys to have support with each other during a life threatening situation?

Susanne 51:07
I think he I mean, luckily, he hits a very good circle of friends, which gave him a lot of backbone. But I would have gone ballistic if I had been the person out there. Because it was not only the situation I was in a was trying to understand it was pushing the doctors because because things were going on so slow, and, and getting answers and under trying to understand what was going on.

And so yes, I mean, he’s, he’s got the kind of character that he’s kind of close to chapter and moves on. So he, you know, new chapter, I’m back, let’s, which is great, because I think but then, you know, I think he also has to process it in a way until maybe in a couple of weeks, month, or whenever so, I mean, you know, I’ve written it all down, but he hasn’t been able to read it.

Kali Dayton 52:16
No, absolutely. I’m sure that was extremely traumatizing. And he is also a survivor of the ICU. Yeah. What did he do to advocate for you to get off the ventilator sooner with the medical team? You mean? Uh huh. You said he was really trying to push them to move things?

Susanne 52:32
Yeah. I don’t really know. I don’t really know how he did, how he managed all I know that he managed to get the best of the best on board. And, again, you know, luckily, he has a very big social circle. And we have a lot of medical friends, among our friends, medical staff, among our friends.

And I think that helped him as well to understand certain processes and why things were done in a way and this and that. But I don’t know, I don’t know what how he did it. I know he pushed a lot to get it done. I don’t know why they didn’t want to do it. They didn’t want to risk it. What risk factors, they still one place. All I can say is, once a tube was out, I was completely fine. I mean, they’ve put oxygen mask on.

But I you know, I didn’t really need it. I could race perfectly. I had a pediatric tube. So it wasn’t a big one. But there was it. I could breathe. Normally I could speak. I mean, my voice was creaky for the first three, four weeks, but then normalize I had no issues, no cognitive issues. I had no memory issues. So yeah,

Kali Dayton 53:59
yeah, no, I..

Susanne 54:00
don’t know.

Kali Dayton 54:02
The blessing. It is. It is my I would suspect that the swelling in your neck and your trachea around your trachea probably didn’t last those full 16 days. No, it would make sense to me that once the swelling had gone down, then the problem was the delirium. And that you were intubated because you were sedated and sedated because you were intubated?

Susanne 54:28
Yeah.

Kali Dayton 54:29
And it’s really hard cycle to get off. If you turn on sedation, and you see agitation and then the indicator for sedation is agitation. Then you treat that once they hit the stations, causing the agitation. It is a perfect storm. And I’m sorry you got put on that. But I appreciate you weren’t being willing to share those intimate details with us and I’m sorry for what you’ve gone through and I’m so glad that you’re doing so well. Now you look great.

Susanne 54:56
Thank you. No, I mean, I do feel I mean, it’s been not even four months, I feel good. There is not a single day, I’m not thinking about it, obviously, I don’t feel the same. And I think I will never be the same as before. You see life differently, you see you, you tend to fall back into your daily routine and your daily your normal patterns, but you’re not the same.

I mean, I think it’s an experience that that is unique, in all, all its ways, good embeds. I mean, I’m, I’m just very happy that I get out that I’m back that I’m cured. But if I had been able to avoid it, I would have done honestly. Because it’s an experience that you don’t want to, you don’t want to really go through.

Kali Dayton 55:53
And though we can’t avoid maybe the very event or the cause of you coming into the ICU, I think you sharing those experiences with us should hopefully help us understand the necessity to avoid exacerbating the harm. We shouldn’t, you shouldn’t just be automatically signed up for a traumatizing experience, and a neuromuscular condition, and extensive rehabilitation and all those things that come with sedation and mobility.

And we should make it a more humane process for you and your husband, during that time to be able to communicate, for you to be yourself and be autonomous and informed and not having to go back into your medical records. What happened during the time that you thought you were being turned into a fish? Yeah. And that people were out to kill you. That’s, that’s not what I would want for myself. And I hate my delivery would consist of,

Susanne 56:46
I mean, it’s like when when, you know, when you go back, and whatever you experience on a day to day basis, there’s always the thought behind. Maybe this could form part of another delirium, so you know, you’re very selective of what movie you’re watching. Like, I have to, everything has to be positive, like, I can’t see any more death scenes and hospital thing, scenes and all that. So that’s all gone from my from my watch list.

And I think the trauma, the the effect that all this has long term on a mental level, is, is very strong. I mean, I am now at the point that I’m thinking of redecorating my bedroom, because it reminds me of the whole beginning of the whole story. And, and all these everything that reminds me of it, I want to raise it. And so I think all the and this is just recent, I mean, this is like couple of days only that I have this sudden urge of you know, changing everything to not being reminded. So I hope there is not much more coming.

But but it’s it’s a really long process. And I think one has to be aware that once you get out of the ICU, at least that’s how I experienced it. But I’m sure that many others can confirm first your body. I mean, our body is incredible the way it can heal, and our body first tries to heal from the inside out, tries to get back the calories, the muscles, everything that has to be real build, get your mania out of your body and all that.

And once that is done, then comes the mental part, and then comes to brain says, Hey, there’s a lot of things happened on for this happen, the mental issues, the memory losses, the dreams, all that starts at a later stage. And, you know, we have to be prepared for that. I am not. I’m not taking any medication for that. But it’s I mean, the post traumatic trauma is is is huge. That’s huge.

Kali Dayton 59:15
Oh, absolutely. And we’ve heard from other survivors, doing EMDR and exposure therapy and just lots of different things to try to deal with that because that’s real trauma. And that’s not something we prepare patients for or offer resources to we don’t we don’t address that and I and I obviously would prefer that we prevent it in the first place.

But we especially need to take good care of patients that have experienced delirium. You know, we stay people because we think it’s safer. We went today today did you because they wanted you to be safe. They want you to stay in bed. They wanted to keep the tube in you, which you probably would have been less you wouldn’t have tried to pull the tube out if you were awakened calm.

I’m cognizant of it. Now. So the irony, I mean, we just, we are not those are not safe practices, we increase your risk of pulling your tube out, and we increase the risk of brain damage, increase the psychological damage. So it was not it’s not a safe practice. Now, sometimes it’s actually absolutely necessary, you know, risk versus benefit. But protecting your airway probably didn’t merit that kind of psychological, psychological trauma.

Susanne 1:00:25
Yeah.

Kali Dayton 1:00:25
And I wasn’t there. But these are just some of some speculations. I think that really backs up. But your experiences you sharing it make it so much more real to us. And I’m so grateful for your willingness to share that and I hope that this has beneficial to ICU community and survivors alike to know that they’re not alone. But life is worth living after the ICU. Yeah.

Susanne 1:00:48
Yeah, no, I hope that that, I mean, it has helped me a lot listening to your podcasts. And I’m sure that it, it helps. You know, everybody who finds it extremely, because there is no information out there and hardly any. And it’s so important to have this this backup as help because no one else understands what’s really happening.

Kali Dayton 1:01:13
No, and those of us inside the ICO, we don’t understand. Yeah, that’s, that’s what you’re helping change. Yeah. Thank you. And I’m hoping the more collaboration, the other podcast in the future, and I’m so grateful for all you’re willing to share and potentia we’ll be in touch. Thanks so much.

Susanne 1:01:33
You’re doing a great work. Thank you.

Transcribed by https://otter.ai

 

References

Check out Susanne’s new book, “Purple Fish”:
https://www.amazon.com/Purple-Fish-Amelie-Susanne-Roth/dp/1088092837
 

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