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Check out this episode with @Christinecasiano as she shares the contrast between being sedated vs. being awake while on ECMO. Register for the monthly ICU Revolutionists zoom meetings here.
Episode Transcription
Kali Dayton 0:00
Kristina, welcome to the podcast. I’m thrilled to have you on Can you introduce yourself to us?
Christine Casiano 0:04
Yes, of course. I’m happy to be here. My name is Christine casciano. I am just your average mom, though I would describe myself living in Oklahoma City.
Kali Dayton 0:14
And you’re now at IC survivor. So health, how did you end up in the ICU the first place. So,
Christine Casiano 0:20
you know, it’s kind of a wild story. I don’t think I could have ever anticipated something like this happening to me. I was in my second pregnancy. And then my first pregnancy had gone extremely well. Previous to this happening, I’d never really had any major issues or history of anything in my life. But I started wheezing, pretty much out of left field. And I didn’t really know what was going on. I didn’t have childhood history of asthma. I didn’t have any family history of it. And it was just really bizarre. I brought it up with my doctors and they prescribed me some albuterol. They also and looking back, I wish I would have taken it. But they also did prescribe a steroid inhaler. And at the time, like with my insurance, it was like $300. I was like, what is that. And so I didn’t take that I was picking the albuterol. But then I realized that I don’t, I’m not feeling really any better. After a couple of weeks, it just, it felt like it was getting worse. And this feeling of panic just kind of came over my body. And I realized that something was very wrong. And so that’s when I made the decision to go into the hospital. And I went to Oh, you medicine, which is where my OB Gen practiced. And so I went to the object, Drax emergency room at that time, and they agreed that I was like struggling, they admitted me and it was on a Sunday. The next day, they ran some tests, did some X rays. Everything honestly was extremely alarming. I still was wheezing, it wouldn’t go away, even after breathing treatment and some of the other things that they were trying to help me with. Monday night going into Tuesday, my body just started crashing, it was air trapping. So my lungs started air trapping overnight. And by the next morning, I was in really bad shape. I was waiting extremely loud. My heart rate was at 160 beats per minute, I was not able to filter co2 Out of my blood. And so that was when things got pretty grim pretty quick. And they made the decision to put me on a ventilator. That’s kind of how I ended up there. We were it was a lot in the dark at first they ended up finally diagnosing me with adult onset asthma. So ultimately, it was the most bizarre thing that I could have never anticipated. Your asthma exacerbation. It was an asthma exacerbation. Knowing that I had asthma without Yes, I’ve never had it as a kid never had family history of it. So I just like the last thing in my mind. I thought maybe it would be bronchitis but I could have never Yeah, bummed that I would have
Kali Dayton 2:57
put onto a ventilator. Were you sedated after I you were intubated?
Christine Casiano 3:01
I was sedated after that. Probably about 15 minutes into them putting me on a ventilator, I ended up having cold blue called on me. It wasn’t because I was going into respiratory failure quite yet. But they thought going that way. And I wasn’t filtering the co2 out of my blood. And so they made the very quick decision to get me over to the adult ICU unit as quickly as possible and put me on ECMO. Okay, and so
Kali Dayton 3:30
Did they wake you up after they put you on ECMO?
Christine Casiano 3:33
So then I was on paralysis drugs for about two days.
Kali Dayton 3:38
Do you remember anything about being deeply sedated?
Christine Casiano 3:41
I do it was it was pretty terrifying. And I had really horrible dreams, nightmares, hallucinations, whatever you want to call them. I am not somebody that like exposes myself to scary movies. I just hate that kind of stuff. And the things that my mind were able to like dream up during that time. Were unfathomable. It was really really scary. Like, to the point of questioning like, am I am I in hell like it was it was really bad. But I knew, I think part of me still knew that I was in the hospital and that I was like there had to have been some sort of like medication. I think deep down inside of me. I think I still knew that. But it was a really frightening time for sure. It wasn’t a fun journey.
Kali Dayton 4:29
And many survivors say that some are embarrassed or unable to really talk about it because they say the same thing. I don’t know how my mind went there. I’m not that person. That’s not how my mind works. I’m not a dark, evil, twisted person and say I don’t watch scary movies. And yet I don’t know why the conscious seems to go into that realm of places our mind at of our greatest fears are traumas that we don’t would normally ever access or be exposed to the learning just puts you puts you there. I don’t know. Why can’t you just be like, with unicorns and rainbows? Yeah, it
Christine Casiano 4:58
was the opposite and it was You know, it was comforting to know like after, you know, I healed from everything seeing that other survivors have gone through very similar experiences.
Kali Dayton 5:09
How did you find that out?
Christine Casiano 5:11
There were a lot of research just I wanted to understand the perspective of other people that had maybe gone through what I had been through, I think being 22 weeks pregnant on a ventilator. And ECMO made me a little bit of a unique case, for sure. So I was just curious, finding other women. And it’s crazy.
The video that had gone viral, I had so many people that had reached out to me that had been in similar situations where they were on a ventilator and ECMO and even a few women who had gone through almost identical stories of being in their pregnancy and having to go on a ventilator and ECMO and it was just, it was crazy that that brought that to like, that’s not something I would have ever expected. And so it definitely, it’s really cool. Like I keep up with a few of the people that had reached out. But it helped kind of develop a little bit of a community for us.
Kali Dayton 5:59
And the reason that video went viral is because you are shimmying to music. I was on BT clearly, they’re clearly aware. And that’s really I think it went viral, because that’s shocking to people because normally, and in the other ICU, you would have been deeply sedated the entire time, even after paralytics were off, they would have kept you probably unavailable to touch. And that’s not the case. Thank goodness for the ICU you were in? Do you feel like the other survivors that you’ve connected with could have engaged with their environment? Or were they also stuck in delirium the entire time?
Christine Casiano 6:33
You know, I haven’t gotten into the full details as far as what their personal journey or experienced look like, I know that for a lot of them, there is a lot of anxiety, and PTSD when thinking back to that time in ICU. And I think for the first year for me, it was really like I struggled with it really bad with anxiety. And that was not something that I was I’d never had anxiety or depression or anything like that. And so I struggled with it, just this fear of that something like that happening again, really is what it came down to, and being in that type of situation again.
But I I was able to kind of heal and move past that. But yeah, whenever they took me out of paralytics, I would say that I was still definitely having delirium even while I was awake for a little bit. There was a point in time where I thought the doctors kept trying to turn my ventilator off. I couldn’t sleep at all. I don’t know how many days straight I went, but I just could not rest. It was just constant. And of course, being an ICU that helped with the fluorescent lighting everywhere.
Kali Dayton 7:39
Yeah. And the ventilator and that Yeah, but we also know that sedation disrupts your brain activity. So I wonder if having hallucinations, being anxious and scared of all the misinterpretations of your environment. In addition to just having your brain disrupted, when does it calm down enough to go into normal patterns of sleep that we disrupt we deprive people of sleep while we have the pumps running, and then they continue to be deprived from sleep because of that sedation even once it’s off, it’s wild. Especially the irony is that so many of our see clinicians believe that sedation is sleep, what would you say to that?
Christine Casiano 8:13
No, my mind was very much awake. During that time. It was it was running in a million different directions. And I mean, that just the I felt trapped is probably the best way I could put it. I felt like I didn’t know what was happening during that time. But I just I felt trapped. And like I was in a very bad place.
Kali Dayton 8:31
The common mentality throughout the IC community is, if that’s me in the bed, with a tube down my throat and a big huge cannula rather in my neck or my groin, you’d better have me totally knocked out. Because again, they believe it’s sleeping, there’s no way it’d be inhumane to be awake. So for you having to having done it both ways, experiencing both sides. What do you say to that? And what did it mean to you to be awake?
Christine Casiano 8:57
For me, once I was able to even I think the the turning point for me, I was able to kind of move my hand like this. And my nurse very quickly recognized that I wanted to be able to write and so that was such a huge turning point for me, mainly just because it gave me my autonomy back. It gave me control back. I felt like I was able to the first thing I remember writing down on that piece of paper was hallucination that couldn’t believe I like was able to write that long of a work that I did, I was able to write it down. And I think that’s when they realized, Oh, she’s probably not having a good time. They changed my drugs.
And I was much more awake and aware after that point. And that really was a turning point. For me. I remember my family like one of the first videos that was captured. Although you say that it looks like I’m still somewhat sedated, but I was very much awake even when that video was taken of me dancing really weak, right? It was very weak. Yeah, it was very weak and I was able to respond Questions, I was able to nod my head and like, give a thumbs up. So I was still very much able to communicate and write on a note. And that was like my main form of communication.
But it was so empowering for me to just be able to be a part of my, my own care. As scary as that is, nobody obviously ever wants to be in that situation. Nobody wants to be an idea on a ventilator. And obviously, the million different things are going through your head, you’re wondering if you’re gonna make it out of there. But at the end of the day, being able to ask questions, being able to understand what was happening, and what they were doing as they were coming in and treating me, I feel like helped my mindset so much. I just feel like it put me in the right place to be able to tell myself, I’m going to I’m going to get through this, I’m going to take us one day at a time. And I just think it was a huge turning point. For me.
Kali Dayton 10:58
I think we really underestimate the role that patients play in their own survival. We have this so much God Complex, where we think that we can do the work of the lungs and the kidneys. And we can do all these things to the patients or for the patient. But there’s something about the will to live that needs to be taken into account.
So allowing you to be a part of your journey and decide that you want to live and decide you have things to fight for. I don’t know how to gauge that in any kind of lab work. But it absolutely has to play a role in it, especially when you this is your second pregnancy. So you already had one little home and then preparing for another one. I mean, how did it impact your ability to go home and be a mother to have been away, I guess you didn’t experience the flipside where you could have been sedated for many days more and would have been even weaker. But rehabilitate. The read
Christine Casiano 11:52
was pretty shocking. I mean, I was so thankful. Honestly, after I came out of that Delerium stage, I felt like I was in the absolute best hands possible. I honestly couldn’t have been more thankful for everybody that was part of my care team, they still just have such a special place in my heart. I’m forever grateful for them. But I was really shocked just after one week of being like in a bed and how little I could actually do like I needed help setting up, I needed to relearn how to use the bathroom, I needed to relearn how to walk even just after a week.
And granted, you know, I think it didn’t take me nearly as long as it would take somebody else who has been in that situation for an extended period of time. But it was shocking, just knowing after a week, like how weak I was, it felt impossible. Like it just felt like I had such a long ways to go to get my strength back. And it was it was very eye opening. And you’re
Kali Dayton 12:55
You were young and you were healthy. And you were running after probably a toddler before that. And within one week, you can lose 40% of your muscle mass. And that’s even without paralytics that paralytics obviously affect your neuromuscular connection, so does propofol so it was not just the mass of muscle but your ability to control and night your muscles that was impaired and just creates this just horrific storm. So how long did it take you to then be able to sit stand walk?
Christine Casiano 13:24
You know, I was pretty determined of myself that I was gonna get better as quickly as possible. So I worked as much as I could with it. I would say after a couple of days I was studying, I think my favorite place I didn’t want to be in the hospital bed anymore. I wanted to be like in the little recliner, the majority of the time.
And then from there, I started I mean even while I was in ICU, they got me out of bed pretty quickly and I started taking walks around even on ECMO so not on ECMO. I think part of it, I had the femoral tube as well. And so I know there was like some people that wanted to and others that were like maybe not and honestly now knowing. I think if I had just had ECMO like here, I probably would have been pretty down for that. But I don’t know it still would freak me out a little bit. Yeah,
Kali Dayton 14:17
It’s your lifeline, right? What’s neat is that they now have verticalization beds. So the normal hospital beds that have these big straps that could come on huge, strong Velcro that can hold 1000 pounds. Even before you could sit there stand or walk, you could have been standing with his bed bearing weight in your legs.
You wouldn’t bend at your hip, you wouldn’t disrupt that cannula and so now they’re taking those beds and using them to get patients standing, take off the straps and they can walk off again they get the timing right where they’re not too weak to walk even if you were you’d be safe you could stand and you could rebuild so much quicker. So I put it up plug in I mean I’m neutral this vital going Craig I don’t have affiliations with either but perfect context in which some people are for it. So People are nervous. It’s a really safe way to just get doing something sooner.
Christine Casiano 15:05
Yeah, no, that totally makes sense. And I think, you know, my mindset on that probably would have adjusted and changed. If I had been in a situation where I was on ECMO for an extended period of time, like past, obviously, the one week that I was there,
Kali Dayton 15:20
so yeah, and I love that you were wanting to get the chair because I think that would be me, too, and hit the considered patient perspective. I mean, those beds are miserable. Why did you like to be the chair?
Christine Casiano 15:30
For me, it was just more comfortable, I wanted to be like, sitting up, I wanted to, like, I get the I also didn’t want to feel like I was just like, laying flat and majority of the time, but for me, it just was a lot more comfortable being there. And then I think I got a lot more mobility from there to like just being able to stand up and try and use the restroom, or go and try and like brush my teeth. Finally, that was, like really important for me and getting in and out of the bed was a lot more difficult than the chair.
Kali Dayton 16:00
No, absolutely. Just being human. Again, getting back to doing those, like laying the foundation of basic things so that you can go home and take care of your kids. I’ve seen videos or pictures of women on ECMO holding their babies, because you’re right, this is not an uncommon or impossible thing to happen. And to just think about how much skill it takes, after giving birth to hold a newborn, and how hard it must be to like be rehabilitating if you’ve been immobile for prolonged periods of time. So considering big life events that were coming up, and how to make sure that you’re prepared to be a mother that this one event this week didn’t have to determine the next few years of your motherhood. Or you could have a jumpstart to rehabilitation. Oh,
Christine Casiano 16:44
no, absolutely. The rehabilitation part of it was huge. I wanted when I was in that situation, I genuinely wanted people to come in and help me try to mobilize as much and as often as possible, because I just I was at that point once I was awake and able to move around. I didn’t want to feel stuck.
Kali Dayton 17:03
Yeah, absolutely no at the panic of being so weak and dependent and and and Abed makes me anxious just thinking about it. So it all in all makes so much sense. What did it mean for you to have the ability to connect with your loved ones, especially your husband? That was him? Right? playing the music? Videos, my husband playing them? Yeah. What did it mean to you. So incredibly
Christine Casiano 17:24
important, I was so thankful our hospital was like, so generous, and allowing my family to be there with me through that time, I think at that time, there was like a two patient kind of limit. And they were able to get approvals, and three, so both my parents and my husband were the ones that were there that entire week. And having them there was so important to me, getting better physical touch was such a huge part of my healing journey. It was it’s a scary place to be in. And I feel like just even having that sense of like somebody holding your hand or massaging your feet, or just anything that just helps you kind of connect with them is just calming and grounding. And it really did help give me a sense of calm through the chaos.
Kali Dayton 18:15
And when you had delirium, and you’ve got physicians were trying to turn off your ventilator and things like that. What role did your family play in helping you get through that?
Christine Casiano 18:25
They were assuring me that entire time because I would write certain things like on the thing about health. I thought they were trying to turn it off. Or they were assuring me that no, they’re not been explaining every single detail. And it, I was able to get better pretty quickly, just because I was able to finally put hallucination. And my family really did advocate like, Hey, I think she’s kind of struggling, is there anything we can do here? And so just having them obviously, who knows me best, be able to help advocate for me and help give me a voice that I didn’t have. And that situation was extremely important. We
Kali Dayton 19:05
That is just so insightful because I think during COVID We got really used to not having families in the ICU.
Christine Casiano 19:11
I saw a lot of comments that nurses wish they couldn’t go back to ICU and not have families. And I do wonder though I understand I’m sure under the stressful circumstances, not every patient or family is going to be the same as what me and my family were. Yeah, it’s a stressful period. And so I do understand it to to an extent, but I do think there’s such a huge, important role that the family and support system does play in helping a patient heal. I could not have thought bummed going through that journey alone.
Kali Dayton 19:43
Well, it sounds like your team did an amazing job really trying to optimize the ABCDEF bundle and your care and that your family word. I mean, they were it sounds like they were experts without knowing that they were experts, right? They just follow their intuition, which I think is within the capacity of most family members to be helpful as long as we allow them and we help them understand what you need.
And a lot of times they’re going to know what you need maybe more than the clinicians do, because they know you, they’re the expert on you what your clinicians have known, which which music would make you dance, right? Only your husband?
Christine Casiano 20:13
Oh, yeah, absolutely. I remember it. Yeah, he would play like little games with me and stuff. And I would give a thumbs up or a thumbs down, and it would just help kind of take my mind off of everything that was going on.
Kali Dayton 20:26
And it probably helped your clinicians, your caretakers, see you a little bit more, not just the pregnant woman on ECMO. But see your personality, the things that you like, you learn a lot about people by who they’re surrounded with. It probably helped them humanize their own perspective of you and guide what they did to help you get back to the life that they came to understand that you lead before.
Christine Casiano 20:48
Yeah, no, I think so too. i Yeah, it’d be hard for them to kind of get that picture without my family there. And without me having a voice. Well, thank
Kali Dayton 20:59
you so much for all the insight you’ve shared for advocating for future patients. I know you’re just telling your story, but it really helps us understand the patient perspective and hopefully, impact the care of future patients. Anything else you would share the ICU community.
Christine Casiano 21:11
I mean, at the end of the day, I seriously have nothing but the highest regards for anyone that works in ICU, the work that you’re doing is just so incredibly important and valuable. And the fact that you can change lives, people will remember that forever. I know I literally don’t forget anybody that helped me throughout that entire time. And that was a part of my healing journey. Your work is so important. And so don’t lose sight of that.
Kali Dayton 21:38
And you are why they do what they do, and do it so well. Thank you so much, Christine.
Christine Casiano 21:42
Thank youTranscribed by https://otter.ai
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