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Episode Transcription

Kali Dayton 0:48
Tomorrow is delirium day, please make a splash about it on your social media, on your team and whatever setting you’re in. Make a big deal about it because delirium is a big deal. Check out my social media pages and shared the quick delirium video coming out on March 13. Go to my YouTube channel for data ICU consulting, and watch the full delirium Day video. Share it, make it real for clinicians, bring validation for survivors, and protect our future patients. Help with awareness and bring real change to commemorate delirium day, this episode, we turn it back to the real experts on delirium. Those that have and continue to live it. Kayla, thank you so much for coming on the podcast. Do you mind introducing yourself to us?

Caleigh Sarah Haber 1:38
Hi, I’m Caleigh Sarah Haber. I’m a two time double lung transplant survivor or three times surgery survivor, I have diabetes. I have cystic fibrosis. I have a jumble of disease and illnesses. And I am honored to be here today and share my perspective.

Kali Dayton 1:56
Amazing. I never would have guessed all of that. Just looking at you. You look so alive. so vibrant. So I amazed by all you’ve endured. And I’m excited to have you share your experiences, especially what you’ve experienced throughout your ICU admissions and maybe some admissions in particular. transplant is a whole different and unique experience you’ve already suffered so much prior. And then you end up on a ventilator after and you’ve had it both ways. You’ve been in a medically induced coma. And you’ve been awake on the ventilator. Can you share with us kind of what first of all, what is it like to be in a medically induced coma?

Caleigh Sarah Haber 2:39
Well, I was in a medically induced coma for weeks at one point. And it was a very traumatic emergent situation. So for me, I was completely sedated for a long period of time, and therefore, all of the emotions, all of the decisions were put on my family. So they were enduring all of that trauma. And they were actually having to figure out, you know, what would I want? What what should they do? They were told about five times to stop treatment, and that there was really no hope. And they continued treatment, purely off of a feeling that they continue to feel. And so they kept me alive for that reason.

When I did wake up, I was extremely sedated. And it was very confusing. I had no memory from weeks leading up to the event. I had no idea what had happened. I didn’t know where I was, I didn’t know what year it was. I didn’t know who people were really the only people that I knew were my immediate family members that were in the room with me. Other than that it took weeks of really reintroducing myself to the world to what things were to technology to everything.

Kali Dayton 3:59
Wow. I mean, so they would hand you your phone, and could you even physically manipulate a phone?

Caleigh Sarah Haber 4:05
No, it was a very, very long, hard period of physical therapy, speech therapy and occupational therapy, just to get to the point of a very limited mobility state. It was about two two months inpatient and two months outpatient therapy. So yeah, I definitely could not.

Kali Dayton 4:28
Oh wow. How old were you at the time?

Caleigh Sarah Haber 4:32
25.

Kali Dayton 4:33
Because I think sometimes we hear about these patients coming out with very debilitated states and we assumed that they were already kind of low functioning at baseline right. So maybe geriatrics, they already had low muscle tone or things that kind of led them to be in the ICU. But you were a healthy, I mean you have some chronic illness but you were a pretty strong functional 25 year old right?

Caleigh Sarah Haber 4:54
So yes and no I had dealt with being bedridden for already. Oh, over five years leading up to my first double lung transplant. So I was really malnourished, I was on a feeding tube, I had low muscle tone, extremely skinny, all of those things. But however, I was actually on vacation, and while I was cliff, jumping in swimming, snorkeling, doing things that I really had never done before. That’s not to say I didn’t have a little bit of help here and there. But overall, if you met me on the street, I would have been a normal 25 year old, just maybe a little bit skinnier or more petite.

Kali Dayton 5:36
And then you have a few weeks of sedation and immobility. And you come out and how was how what was your physical function like? Or what was it like to try to move your body after all of that?

Caleigh Sarah Haber 5:48
um, it was scary. I would say I was unable to lift my head, my fingers, my hands. I couldn’t communicate what whatsoever I was given a communication card. And by given I was being held up a communication card by somebody else, a nurse, a family member, and I was unable to use it. So I won. I was intubated. So I wasn’t able to speak to I really couldn’t use that communication card point to anything. So it was it was scary. And I don’t think that I really realized the physical state that I was in the medical state. I was just confused. Overall, I had no idea what was going on.

Kali Dayton 6:35
I like feeling anxiety, just hearing that PTSD is real.

Caleigh Sarah Haber 6:38
It’s for sure real.

Kali Dayton 6:40
Right. And that’s that’s the terrible irony is that we give sedation in hopes that it prevents PTSD, that it prevents trauma and suffering. There’s this mentality of the less aware patients are of their environment, the safer they are psychologically that they’re in a better place as long as they don’t understand what’s going on to the ICU. But at some point that has to come off and you didn’t have any experiences while you’re sedated, correct?

Caleigh Sarah Haber 7:06
I did hallucinate. I was hallucinating. I was extremely fearful. I was afraid to be sort of like re sedated, I could say like, because, you know, every so often, you know, as an ER nurse practitioner, you have to wake up a person somewhat just to see what state they’re in and make sure that neurologically, they’re okay. And so they would kind of take off that sedation a little bit. And I would either be too agitated, confused, or something they’d kind of resuscitate me. And I would be scared because I was afraid of hallucinating. And I couldn’t tell anybody that that was happening. So they had no idea. So there wasn’t like I was being like, change medications or shifting doses, nothing was being done because nobody knew. So it’s really I want to say it was nobody’s fault, because they weren’t. They couldn’t change what they didn’t know. But also there was no real like prevention, I could say to so.

Kali Dayton 8:10
And that speaks so much to what we go over in this podcast that patients are having real experiences. While they’re sedated, they’re terrified. We’re not trying to communicate with them. We don’t know. We don’t fully understand why they come out agitated. So from a nurses perspective, when turndown sedation see patient kind of agitated, and oftentimes, they’re trying to pull their tube and things like that a strong assumption by just that presentation is that they are deeply uncomfortable for the endotracheal tube. And that when we turn sedation back on, we’ve now spared them, the discomfort of the endotracheal tube, and now they’re comfortable because they look like they’re sleeping. But what you’re saying is that was not the case.

Caleigh Sarah Haber 8:50
Yeah, very much not the case whatsoever. I would have struggled with this, like what I have rather had less sedation. I think in certain moments, no, because it was so the anxiety was so extreme, especially being weaned off of the sedation. It was extreme, you know, you at some point, have, I don’t know if like addictions are the right words, but like you, you want to have more medicine because you’re so uncomfortable. So you crave that medication and that sedation. On the other side, it’s like, well, having sedation is terrible.

And I was actually I spoke to my family yesterday and this morning a bit about the experience because I have a lot of like, I wasn’t technically there for a lot of it. I have a lot of memory loss and whatnot. And they were saying that it was I was too afraid to go to sleep period. I would just keep myself awake because I didn’t want to go to sleep because one I would hallucinate or two I was afraid that I go to sleep and I just would never wake up or I’d wake up I mean, poor state of health and have to then work my way up again, which I was already trying to do. So. Yeah, it was intense and intense,

Kali Dayton 10:14
Even for them, right? Maybe even especially for them. Yeah. And the terrible part is that sleep is so effective at preventing and treating delirium. But if we give sedation and we kind of give patients delirium, and then we’re trying to help them clear out delirium by trying to help them sleep. And now because of the delirium, there’s this anxiety and fear and trauma. Now, they can’t sleep like how do you even get back to reality all the way?

Caleigh Sarah Haber 10:41
I don’t know. I’m not the doctor alone to take.

Kali Dayton 10:45
But how long did it take for you after coming out of that medically induced coma to really be clear of delirium?

Caleigh Sarah Haber 10:52
Sometimes I’m still not sure like whether I I am. I know that sounds maybe like impossible, but I feel like the true delirium was like months, because even when I got home, I wasn’t able to really do things I still was. When I got home, I was only just walking on a walker and able to basically like sit down to use the restroom, and pull myself up. But I was still doing like physical therapy. And I still wasn’t going places. I was still keeping myself up at night, because I was scared. So I didn’t really know like, time of the day, it was it was all very much have like a blur.

I wouldn’t know how long I was awake for how long I was sleeping for. I would wake up very panicked. I had, just like, the memory loss was huge, but actually, years later, so this happened in 2016. And in 2018, I had my second double lung transplant. And when I was in organ rejection, I transferred hospitals. And at that hospital, they did a full workup again, and during that full workup, I got a CT and an MRI scan.

And they actually recognized showed us the film’s and said, Did you know that you’ve experienced 1000s of mini strokes, and a few real strokes. And we had no idea. And the only time that we could ever think that this happened was probably while I was sedated, because there was so much memory loss and function loss and all of that. And I still have trouble sometimes, like forgetting words, forgetting sentences, forgetting my points. And it’s very embarrassing. When I met my husband, I even told him like, hey, you know, I have this problem. Sometimes I get like, social anxiety because I feel like I’m less intelligent than other people just based off of the fact that I’ll forget what I’m saying. Or forget how to put like my words together, or finding the word that I’m trying to look for.

Kali Dayton 13:02
Wow, that’s like this essence of post-ICU syndrome. I still to this day…. and you’re so young, right? Like that’s gonna impact the rest of your life. You live in a full life and you’re very accomplished is I’m amazed by everything that you’ve done. Even if you had perfect health, which we’ll get to in a minute. But with the strokes, it’s just interesting because immobility, not moving drastically increases the risk of stroke. But when someone’s sedated, there’s no way to know if they’re having a stroke. And apparently, you maybe had another neural pathways developed kind of compensated. So it wasn’t super obvious when you woke up, which is so scary to me.

Caleigh Sarah Haber 13:49
Right.

Kali Dayton 13:50
That’s one of my concerns. When people are sedated is what is going on? We don’t know! And when we do sedation vacations, and they come out agitated. That doesn’t tell us very much, right, apparently, right. They didn’t detect, they, theoretically, maybe they will look to see if you moved your extremities to see if you’re having a stroke. But that didn’t necessarily detect your strokes. Oh, nor tell us why you were agitated what you needed. What was going on? What were you experiencing? That poor ICU team had no idea what was going on with you? And then in contrast, what is it like to be awake on the ventilator?

Caleigh Sarah Haber 14:28
Again, I would say you know, during this traumatic experience after this coma, I would say that being awake was overall frustrating and scary. Because the frustrating part was that I just wish I could be more independent or I wish that you know, I wasn’t like incompetent in front of somebody at that moment. And doing you know, in the restroom when I couldn’t control it, and I was just like, “Oh, I wish this wasn’t happening.” Frustrated… or frustrated that I was frustrated with myself. And very anxious.

But I would say the positives of being awake on a ventilator on the other side of coming out of my transplants is that I was able to, to breathe on my own. After my first transplant, I was awake on the ventilator, and I was trying to come off of it. And they would come in, you know, and lower the beds and lower the bench to try to make sure that you can breathe on your own before they take you off of it. And so I was awake during that whole period of time. And I’m like brother, who was my caregiver throughout my transplants actually sat by my side, and I was writing down on a piece of paper, like, I can’t figure it out, I need help.

Like, I feel like I’m fighting it, like I’m doing what’s unnatural. And so he was watching the monitor, and he actually was squeezing my hand, when it was time to take a breath, time to take a breath, time to end that repetitive pattern was teaching me how to breathe. And that’s how I got off event I got off event in like four hours of coming out of surgery. So not even being awake, but just coming out of the surgery. And then on the other side, I’ve also been on vents after heart transplants where I’m fully walking.

And that’s so beneficial because it can, you know, prevent all of those infections, pneumonia is all of those things that would be happening if I was just simply laying in bed and not moving and not, you know, working that cardiac and pulmonary system out. So it’s so important to get up and function and do it so often.

So that we have a better chance of recovery. And when I get up really quickly, I tend to then get off the vent and walk myself out of the ICU because it’s like this weird accomplishment thing where I’ve like refused to be in a bed coming out of the ICU unless I really have to. I’m like I want to walk across the hall. I know it’s just a hallway. Yes, I’d stepped down ICU but like I need to do it. There’s something in me that just like, wants my family to see that I think like fighting for them and fighting for the future of what I have with them.

Kali Dayton 17:11
That’s, that is so powerful. I’m just having a flashback to just how sacred that moment is with so many patients that have cared for where they’ve been so sick for us so hard. And they they deserve that. I remember one patient Megan Wakeley. I didn’t read her on the podcast earlier. But she was on a ventilator for weeks. She had really fibrotic lung, she did have to have a tracheostomy, one very few have ever seen in the ICU. But she could be without the ventilator during the day. She just needs a little bit extra support. And we were actually sending her out much sooner than normal. Because COVID is about to hit. We’re about to get our first COVID patient we want to her gone.

Anyway, the point is that they came to take her to LTACH they were rolling the stretcher in towards the room. And I locked the door and I said “No. I have told her for weeks that she would walk herself out of the ICU if she kept walking. And she’s worked so hard for this so you can go down the hall, she will meet you there.”— And she did. So though she didn’t go to LTACH, that’s very rare that that happens. She walked herself out and she went home from LTACH really soon after. And it was decannulated soon after and all those things. So it’s really validating to hear how much that meant to you but also to your family. And it was like a symbol of hope for nationale.

Caleigh Sarah Haber 18:28
I mean, they were told multiple, multiple, multiple times that I would not wake up, not live and simply just not even be myself afterwards, which I mean took a bit of time but I am today doing more than anybody ever thought I would be doing so not to be like giving myself a pat on the back. I just mean like actually like doing, you know, like just day to day simple activities, going grocery shopping, driving a car doing things that, you know, reaching the age of 30 I made it to my dirty 30 Y’all like things like that? It’s yeah, that’s me.

Kali Dayton 19:10
You’ve had two lung transplants. But you said you also had a heart to heart transplant.

Caleigh Sarah Haber 19:14
I had three emergency open heart surgeries. I’m you know, I’m not like I’m a liquids eventful patient. History or my double lung transplant I was being really great. And things tend to happen like when I go on these like vacations to celebrate how well I’m doing. I’m just realizing now. So this was as you’re packing for vacation right now, right? I’m packing my bags like I’m not going to work. But this was like a double lung transplant and we we did like a staycation. So it wasn’t even like we really went anywhere.

We went on our way from Los Angeles to Orange County and I was having like, pain in my neck. I thought I slept wrong. And then it became like a bowl gene type of feeling. And I was like, Well, I’ve had, you know, what’s it called? Like? Like pulmonary clots before and stuff. And so I was like, I know that like, this could be like a blood clot. This could be something serious. So I started taking my pressures and those were off and went to the hospital and ended up being the idiopathic cardiac cardial effusions.

So, basically the fluid in my around my heart was building up and they decided to do a window so I just had window done. So they cut a little hole, let it drain, said 99% of patients never close that hole and fill back up. So I went home and it filled back up and then I did a few like, forgetting all my words right now like needles in the back to let it drain. And then I did a few like to still at the fluid drain. I was doing those for like weeks and you know, they dry up, I’d go home I’d return and the time we’re gonna be like smaller and smaller. And I ended up getting a pericardiectomy.

Kali Dayton 21:25
I Yeah, wow. Oh, my goodness. And so that team kept you mobile throughout all those hospitalizations.

Caleigh Sarah Haber 21:38
And all of those three mobile, I was extremely mobile from, you know, I was mobile before I wanted to be mobile. I was mobile more often than I wanted to be mobile. I’ve I, that team actually had their ICU was once you wake up at 6am. When the nurse comes in, you’re up in a chair and you don’t get back into bed until you go to sleep. And I know you’re smiling. But that’s so hard for patients. It is so painful.

Kali Dayton 22:07
And so annoying, I’m sure.

Caleigh Sarah Haber 22:10
You’re on so many medications that make you want to sleep. But I definitely attribute me getting back out and being more functional in life because of it. Because my my I never got atrophy like I did when I was sedated.

Kali Dayton 22:25
Amazing. No, sometimes it does take kind of a drill sergeant mentality. And sometimes you feel like the bad guy, I tell a story about how I met a survivor and cafeteria that immediately recognized me and she’s like, “Oh, I thought I hated you. You were so mean to me.” But then she said to me, “But you saved my life. Because you hustled me, you made me walk.” So I think it’s so helpful to have that perspective of seeing someone that didn’t want to get out of bed and want to do all those things necessarily, but a team that understood the big picture, hustle, hustle, hustle, and now what you’re packing to go on a trip…

Caleigh Sarah Haber 23:03
I live full time. And a van we’ve renovated a van we’re doing van life. And we’ve been traveling for almost a year and a half. We did a series we’ve done. Canada, Mexico, Japan, Europe. And most of the US were trying to check off all the national parks and now we’re about to go down to Mexico for like three months. We love it there. And we our biggest accomplishment or my biggest accomplishment yet is 20 miles in a weekend. So of hiking, so I’m super, super happy that I was able to do that. And also just like in disbelief that I was able to do.

Kali Dayton 23:51
no, absolutely. Oh, that’s that is amazing. Just hearing just the quick rundown of snippets of your journey. And then where you’re at now. That’s incredible. And I I just would attribute that so much to you being able to be awakened mobile during these hospitalizations, but to be off the ventilator within four hours after lung transplant. I’m pretty sure that’s really unique. I also wonder what’s your medically induced coma? Just hearing that they would resuscitate you after you become agitated? How much longer were you on the ventilator and sedated immobilize because of that?

We know in the research statistically, that sedation mobility greatly can prolong time on the ventilator. So at what point were you physiologically ready to come off the ventilator? But then how much did this agitation from delirium? Play into them continuing sedation continued to immobilize you and like worsening that whole experience compared to beat awake being able to say I’m having a hard time synchronizing with a ventilator working through it and getting off the ventilator? That’s That’s amazing. team had you been automatically sedated? And that team if had if they had the same cultural practices? Would you have developed delirium? Would you come agitated? Would they? Would you be locked into that same cycle? And how would that have impacted everything down the road? With new lungs?

Caleigh Sarah Haber 25:21
I mean, maybe I would be alive in that situation, but I’m not quite sure. I mean, after lung transplant there’s so much that goes into it. And the number one thing is walking 20 minutes five times a day, like I we got to a dog that was my like, walking, buddy, you know, like, that was like a motivation for Yeah, you’re exactly your trainer. But I’m, I’m pretty confident that if I was kept sedated and kept being re sedated, just based off of like my own emotion and struggle, and things like that, like, I would have definitely had more infections definitely had a longer period in the hospital, I would most likely develop delirium, because it happens so fast, and quite honestly, pretty easily.

Because of the lights, the people coming in and out, there’s a lot of confusion of where you are what’s happening. And I just, you know, my community, I speak to so many people in my community that say that they’ve had delirium, and the PTSD that comes from it is so severe that I mean, I travel full time now. And every single day, I’m scared to be just a little bit away from my care team, I have to push myself to do that. I have to, like, actually tell myself, you know, you’re gonna be okay. It’s okay. Like, repetitively. And I just lean on other people to, to, you know, encourage me to keep going and to do things in my life that I want to do that I’m scared of sometimes.

Kali Dayton 27:05
I think you’re such a warrior, Caleigh. I’m amazed by you, and how incredible for other survivors to have someone that’s been through such an arduous journey, and speaking out and available and validating their experiences. When I talked to survivors, a lot of times, they don’t even know what they experienced. They don’t understand they had delirium. They kind of suffer in silence, they feel like they’re crazy. They can’t really articulate why they’re so scarred after their hospitalization what exactly happened? So I just thank you for reaching out to survivors and talking about this. I’m hoping that we can bridge into the ICU as well, because many clinicians really do not understand the kind of during that you’ve had. What else about being awake on the ventilator? Like what did it mean to you to be able to communicate with your family?

Caleigh Sarah Haber 27:56
It means so much to be able to just speak to or communicate in whichever way that is? To my loved ones, because, for me, they’re the ones who encouraged me the most and motivate me the most and keep me going the most. And they’re the ones that I, I live for, you know, I mean, obviously, I have my own goals. But I really those goals, mostly all surround them. So to be able to have that communication and that love. And that feeling of understanding is everything.

And equally, the communication between my medical teams is huge, because for me, when I woke up, and I couldn’t speak, and I was confused, my mom was actually already telling me, I just felt like, you know, you have an ij like central line in your neck, you have an arterial line in your arm, you have you know, you’re vented, you’re on this, that this medication, like because I am so involved with my care, and I make all of my own decisions for me not knowing is like the thing that would just spiral me the most. So my family already knows, they’re going to be explaining everything to me, they’re going to be telling me what’s happening, no matter how many times that takes.

I mean, they’re really patient with me, they can talk to me slowly repeat it, especially my mom, she’s like, my biggest hero and, and supporter and the care teams, even if I can’t necessarily communicate with them, like the medical teams, some I remember one person who has touched, touched my life and made things you know, my experience so much better was so this whole time I had one provider and he would just meet outside the room with the you know, the team, the people that round all of the doctors talk and leave, he would never come into the room. And he needed to speak to my family.

They would go outside, they come back in he would never enter the room and this is somebody who cared for me for me nine years. And it was, it was very strange. And then I had a new provider on the same team who had cared for me for maybe a year, probably under that. And she came in, she knew that I was having a really tough day. And my family said, you know, she’s really struggling today, there’s something we can do to make her more comfortable. And she came in and she, like, held my hand, it was like, “You’re gonna be, okay, this is what’s happening, we’re going to do this for you, we’re going to do this and this, and this, if there’s something that you would change, I want you to, like, make some sort of like eye movements, or like, look somewhere else, or try to tell me something that you would change, and I’m going to talk to your family more about options.”

And like, there was just, I mean, even if I couldn’t do it, the fact that she was trying, and she was becoming vulnerable, and she was putting herself in the position to be, you know, recognize me as a person, and validate my opinion was really, really, really, really huge. So I would definitely, you know, tell people that bedside manner is everything, everything. It can motivate patients to stay alive, just to have one person by their side that is reading the mind that they can trust.

Kali Dayton 31:19
Wow. And I just know, in myself, if I couldn’t be informed and autonomous, during such a crisis, that alone would cause me to be very agitated and wild. And there, there would be a big temptation to sedate me, right? If I’m trying to communicate, and they’re not letting me, I probably end up deeply sedated because I’d be so frustrated. So you just have captured so beautifully the value of keeping the brains of patients hands as much as possible.

And then what that does for your own trauma, peace of mind, but even just being calm and cooperative in your care and on the ventilator. It sounds so simple to just communicate with someone, but it’s really not. It’s really profound. And then, just you mentioned to stay motivated, like with the will to live, having your family there being able to be important be part of the process. What can you teach us about the will to live I’ve, a lifetime ago, I worked in a nursing home, and I saw people that were fairly functional, somebody would happen and lose the will to live and they were gone.

And I don’t know how to really capture that. I don’t think that’s really captured in the studies, how the will to live impacts your survival. But what have you experienced after everything you’ve been through? So many people would probably give up, get demoralized, frustrated? And how do you feel like your will to live has impacted your survival?

Caleigh Sarah Haber 32:51
My will live has kept me alive, period. It’s the thing that kept me positive, that’s kept me able to endure so many complications, and really take those head on. I can’t really describe what how to find that. I you know, people ask me all the time, how do you stay motivated? How do you stay inspired? How do you stay alive or what makes you want to be alive. And it’s hard to tell somebody that because everybody’s willing to live is different.

Everybody’s reason to live is different. But I’ve found one tool or you know, key to success that I can share. And that would just be that. For me, it’s like setting setting goals. So it can be a really tiny goal. And there should be really tiny, obtainable goals. And there should be that wild out there far fetched goal, and not wild out there far fetched goal for me was to be married, you know, be independent, and let my caregivers my mom and my brother have their own separate independent lives without taking me into consideration for every single moment of their day. And the small goals for me were simply like, minute by minute, sometimes, it was just completing the day, sometimes achieving that small walk around the floor. And then the small goals were maybe like, being able to, you know,

Kali Dayton 35:30
So after being unable to communicate and unable to use even a communication board, because you were so weak, how does that change how you approached your next hospitalization?

Caleigh Sarah Haber 35:43
Knowing anytime I’m going to be good and I there’s a small chance that I might not be able to communicate, I take a communication board. And I actually think about everything that I would have to communicate. So I go back to that moment of like things I wanted to say that I really couldn’t.

And I write down full sentences of why I would want to communicate, and we hold on to the communication card that I personally make. And then we bring it into all those situations. And it’s one of those things that makes me one more comfortable going into it. Because I know that I will be able to advocate for myself through that. And then also just like, it’s just really intense, not being able to communicate, I hallucinate it for days on end. And I couldn’t tell anybody because I really weak and I would try to spell out the, like hallucination and I’m confused.

So many drugs, I wouldn’t know how to spell it. So I couldn’t spell it correctly. I would forget what I was trying to say like mid sentence. So it was super traumatizing. And, you know, I, my family tends to turn a lot of things into humor, like, the time I you know, too crazy, like, very, very situation like poor smelling stools. I have cystic fibrosis. Yes. And it was like with, it was right in front of this, like, me that came in that I thought was like really cute. And I couldn’t control myself. And it was like mid sentence. And it’s like a joke now and he full on like, you could see his expression was like smelling it.

And, and like, he just kept talking, you know, because like, you know, professional and it was like crazy, right? Like, it was so bad. And then the other thing is like I hallucinated, one of them was like this cat. And afterwards, once I got healthier and out of the hospital, I was trying to describe it to my brother, like this is what I was trying to tell you. Because he was kind of like joking around that I spent days with like somethings with an H trying to spell something that no one could figure out what it was. And I just kept falling off on trying to spell spell things. And I was like, “oh, yeah, I was trying to spell the nation for days trying to tell you to stop giving me medicine. Like, I don’t want that. Like I need you to stop. Give me whatever it is that’s making me hallucinate, change the meds try something else. Like, I am scared. I’m so fearful right now.”

And he said that, because I was super agitated, I remember that they turned the care channel on the TV. And it was like, one of those like, fireplaces basically, like electric TV fireplace thing. And they thought that it was like call me and me. But like, now I I see one of those like electric fake fireplaces I like immediately don’t want anything to have like to do with that. Like, I don’t want to be around it. I don’t want anything to do with that. Because it takes me like back there. And I mean, I don’t know, I try.

This is gonna sound bad. But like, I try not to recognize my PTSD because I feel like it makes me a weaker person, even though I would never say that to somebody else, that they’re weaker because of it. But like, I feel like it takes me to such a vulnerable place that it makes me like scared and like feel things all over again, like make me want to cry. And so I’d rather not think about it because I’d rather be like, the strong symbol of like, positivity and moving forward, not to others, but like to myself too.

Because going into situations positive and thinking the best is what I believe kind of keeps me alive. Like, people are like, aren’t you scared going into your transplant? It’s like, everyone’s like, scared but like at the same time, like being scared doesn’t really do anything for you. You know, like being positive and thinking that afterwards I’m gonna be able to do this and I afterwards, I’m going to be able to do that, like that’s going to make me fight to be healthy. So I had a doctor told me I was never ever, ever, ever, ever going to be able to skydive, and I jumped out of a plane this year. So

Kali Dayton 40:15
no, I, you were so powerful. And it’s amazing that you are able and willing to share these things with me. I think when I first started to discover precisely PTSD and what life is like after delirium, there’s part of me that was just, I guess, frustrated, not only just with survivors, but just with that fact that I didn’t know for so long. I had worked in IC for six or seven years before I ever heard of this. And I had this big question like, why aren’t they? Why aren’t survivors just storming the ICU and saying, what happened to me? Why did this happen?

Let’s never do this to patients. Again, this is a huge problem. But talking to survivors and realizing how traumatizing it is, and a lot of times, one that can’t talk about it. And two, they just want to move on. They just want to move forward. Yeah. And live their lives, right. So it’s just, it’s a lot, and it’s hard for them to talk about. So I appreciate your vulnerability, and they’re probably things like you haven’t shared with people that are still too hard to approach. And that’s, and that’s okay.

Caleigh Sarah Haber 41:21
Um, I also do believe like, when you approach me with this podcast, I did look up ICU delirium, because although I’m like, yes, I’ve had it. Yes, I know, the trauma that I’ve been Yes, I know that I had memory loss and all of these things. I wanted to like make sure that that’s exactly what it was. Because I learned a lot just doing that research, I learned that a lot of the things that I’ve struggled with, like the witch also, definitely withdrew, because I felt like I couldn’t keep up with conversation.

One I had like, no, nothing to relate to, because of this, like traumatic experience that I had, I felt on one. One part of me was like, I’ve gone through extreme trauma. And the other part of me was like, you know, I’ve gone through this trauma, my family was by my side, I’m so enlightened by this experience to what’s important in life, what doesn’t really matter in life. And I was just finding it difficult to relate to people my age, or just anybody. And so it was like, part of it was just the, I didn’t have things to talk about.

The other part of it was that I, I felt like if I did open my mouth, what, what would happen what I finished my sentence, where I find the right words. So a lot of times, it was like, I don’t really want to go into that like social situation, because I’m not sure if I’m going to look like a fool or just like, you know, I was just, it was just a lot to do.

Kali Dayton 43:05
Yeah, and then, so reading about ICU delirium, and understanding that that is a common thread that that’s, you know, hopefully it was validating to you that it’s that there’s a reason why that was.

Caleigh Sarah Haber 43:18
Definitely validating, but it still happens. And I wonder, like, or treatment that I didn’t get, like it, was there something that could have been done that just, I didn’t even have, that could have helped me in this situation today, or could, you know, have helped me then or anything like that.

Kali Dayton 43:41
But my hope is that as we connect with survivors, more of survivors have more of a voice, we understand your perspective, better, that we more readily offer rehabilitative therapies, even for people that walk out of the ICU, cognitive therapy, trauma therapy, all those kind of things that should be readily available. But for right now, a lot of times I see teams don’t understand that patients had delirium.

They don’t understand what it was like for them, they don’t understand what life is going to be like for them. So they really don’t educate families or patients on what to anticipate, let alone what’s available to help them. But some survivors have felt that certain cognitive therapies have helped with improving their speed, finding the words, memory, things like that, to be able to function daily life again, as well as some of the trauma therapies to help cope with the PTSD?

Caleigh Sarah Haber 44:35
If you didn’t have either of those. So those are all things.

Kali Dayton 44:40
Yeah, I mean, again, I see teams don’t, don’t mean to be neglectful. But I tell teams, you know, if someone has acute renal failure, and they’re going home with altered renal function, we set them up with a nephrologist for follow up to make sure that they’re okay that they’re going to be on the way to recovery. But we don’t Don’t do that with the brain or with the Spirit, I guess when they’ve suffered delirium. So with your voice and your advocacy, hopefully we get things more public understood and have that expectation that survivors have access to resources that will help them start their lives.

Caleigh Sarah Haber 45:18
I think what you’re doing is great, and I’m learning a lot through you and through your guest speakers on this podcast. I am definitely learning a lot. So thank you.

Kali Dayton 45:30
Thank you for sharing what you’ve been though and your great contribution.

Transcribed by https://otter.ai

 

 

 

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