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Until post-ICU syndrome is widely known and the impact is deeply appreciated, we will continue to fall short of evidence-based sedation and mobility practices. The real experts on post-ICU syndrome (PICS) are those that live with it. Carol Billian joins us now to share her personal expertise.

Episode Transcription

Kali Dayton 0:47
It’s time to circle back to the survivors. Among the decades of compelling research data and science. It is the survivors that remind us of why we are revolutionising Critical Care Medicine. Those that have lived through sedation, immobility, delirium, ICU- acquired weakness, and forever carry the scars and burdens of post ICU syndrome are the experts that we all need to listen to.

I’m thrilled to have Carol Billian and share with us her unfortunate expertise in this episode. Carol, welcome to the podcast. I am so excited to have you on. Can you introduce yourself to us?

Carol Billian 1:21
Sure. My name is Carol Billian. I live in Baltimore, Maryland. And five years ago, I had a pretty scary experience. One day, I still remember that day. It was a Saturday in April of 2018. I was running around with my mom all day long. She was my best friend. That’s my mother in the world. And on Saturdays, I would always take her to get her hair done. We would go food shopping, we would go to the library. And we always went out to dinner afterwards.

And that night I called her up. I said, “I don’t know what’s going on. I have got the worst pain in my belly.” It’s I said, “it feels like it’s on fire. I’m going to go to sleep. Hopefully tomorrow when I wake up, I am going to feel better.” And that’s all I remember.

Kali Dayton 2:17
Wow.

Carol Billian 2:18
It wasn’t until that was April 2018 in June of 2018. I remember my mother sitting there and I opened my eyes and I see her and I’m like, “Where am I? What’s going on?” And she began to tell me that my colon had ruptured. And she said, “You’ve been in the hospital all this time.” I said, “Where?” you know “What hospital?”

I’m looking around, nothing looked familiar to me. And she was just she was incredible explaining to me everything would happen. But it was just too much to take in. When, like I said, all I remembered was that belly pain. And here I am.

And she said that I had been really, really sick all that time. And that they did an ileostomy. I said, “What’s that?” She said, “Well, they had to remove your large intestine.” And I said, “Okay, and what else? What else is going on?” And she said, “Well, now you have an ostomy you have a bag.”

So I remember looking down looking under my gown. And I take a look and see what’s there. And I said, that’s pretty cool. And I remember saying to her, “Do you know how much toilet paper I’m going to save now?” And I just started laughing. And she started laughing. And she began to tell me a little bit more. But it was overwhelming to hear. And I just kind of had to take a step back. And she just continued to fill me in little by little. But still at that point in time. I had no idea what had transpired over the months before

Kali Dayton 4:08
What did you experience during those months?

Carol Billian 4:10
I remember. I didn’t know where I was. I remember screaming for my mother. I remember having what I thought were terrible nightmares. And I came to find out that during that period of time, I had been put on a ventilator. I didn’t know what that was. I had been strapped down in bed.

My mother said she remembered me telling her some things. That sounded crazy, but she knew it was true in my mind. She describe what she saw coming from me. And now I know that was delirium. But again, while she’s telling me some of this It was way too much to sink in. I honestly did not learn the real details of everything that happened to me until sometime around September of 2018 and five months later, when I actually came home.

Kali Dayton 5:17
you were in a hospital care facility for five months?

Carol Billian 5:20
It was actually four months, I had been in three facilities. But when I was able to start really comprehending what happened to me, it took probably five months. And I would say, five months through to the first year all works slowly unfolding.

Kali Dayton 5:42
And you are strong living independently. You were running your own family business, right beforehand, helping take care of your mother, you were I know, I know, you. You took care of everyone around you before that.

Carol Billian 5:53
Right. Right.

Kali Dayton 5:54
And this is a huge change for you. And when you say nightmares, do you remember specifics about what happened in your mind? Yes, not? Absolutely.

Carol Billian 6:06
I feel like they are etched in my mind, they will not go away. At one point, I thought that I had been kidnapped and was being held captive in a hotel. There was a large room where a lot of gambling was going on. And all these bad guys were there. And there were guns all over the place.

The bad guys, their wives would all get together. And they were like in another room. And the women were like all dressed to the nines. There were drugs, there was gambling. And I remember feeling so scared, I can’t look at what’s going on. I can’t really look at these people, or they’re going to come back and kill me. And so I’m lying in bed with my eyes just cracked open.

And I don’t know who those people are in front of me. And later on. When I started thinking about it. I think maybe what I was saying were nurses. But I didn’t know for sure that was very real to me and still is in my head. And now I know that was delirium. I had also seen a woman sitting in like an arm chair next to this lamp and table her.

She was like white as a ghost. And she had this huge hole in her leg. And it was because someone had taken a gun and shot her in the leg and the bullet went straight through. And this is what I’m seeing. And these images kept coming back and coming back. And I was so afraid I was going to be killed.

Kali Dayton 7:42
And how long did it take you to really reconcile I mean to understand that that those things didn’t actually happen physically to you.?

Carol Billian 7:50
I think it took maybe one to two years later to realize that that was delirium. It was because I was on a ventilator and was sedated. Or my uncle ended up telling me I had been sedated longer than doctors wanted to. But they could not wean me off of sedation medication.

That was I was sedated for two weeks and in the ICU 35 days. And again, I only know that because that’s what my family told me. I don’t recall any of that.

And what was your family’s understand of sedation or what you would be experiencing and what would happen afterward, while were in the ICU?

Okay, so they apparently told my mom that they were going to need to sedate me that my body needed wrist. It took them about 24 hours to find out that it was my colon that ruptured. And they had rushed me in for emergency surgery.

And that that to that surgery took place within that 24 hour period of time. My uncle told me that after that surgery, I had gotten numerous infections. And they had to go in and do at least two other surgeries. I’m wondering, Kali, if some of those infections happened because I was in bed sedated and had not been moved at all.

Kali Dayton 9:30
You know, it’s hard, hard, hard to know. We know that infections absolutely increase the longer patients are sedated and immobilized infections like well, the catheter infection, central infections, ventilator infection, things like that. But with a ruptured colon. Your body gets exposed to lots of different bacterias. And so that can also cause a lot of downstream infections. That alone, though it’s hard to know which came first, or which kinds of infections that you were facing and where they were located.

Carol Billian 10:02
As my mom was clearly told that while I was sedated, and on that ventilator, I was going to be “sleeping”. I was going to be “resting”- my body needed that that I had been through severe trauma.

Kali Dayton 10:15
That is a very common thing that we tell families, unfortunately. And now, years later, you’re very well educated in this. You are an expert in ICU delirium and post ICU syndrome. What do you wish had been included in that informed consent for your family? You obviously didn’t have an opportunity to be appraised of what was going on. But what do you wish had been shared with your family?

Carol Billian 10:42
I wish that they had known that “while your daughter Carol is very, very ill, we would like to sedate her a short period of time to get her intubated to get her on a ventilator.” And I wish that they had been told that “it’s going to look like your daughter sleeping. But she’s really not that yes, we want her body to heal and rest. But she’s not sleeping.”

I also wish that they had been given an option, even though I was that sick. “Here’s what we can do, we can give her some sedation medication to get her on that ventilator. And afterwards, we’re going to wake her up slowly. Because we now know that your daughter can be up in bed, Carol could be sitting up in bed, she won’t be able to talk to us, because she’s going to have that tube in. But we can make arrangements for her to have a whiteboard or an iPad, so she can still be with you. You can visit with her, you’ll be able to see her progress.”

I wish that they had been given that information because I know my mom was scared, but and she had been told repeatedly, that there’s a very good chance she might not make it. We’re going to do everything in our power and these things, getting her on the vent, having her sedated having her wrist like that’s going to help her

Kali Dayton 12:26
Right. As a family member, how do you know anything otherwise, and whatever it takes you you want to do that thing? And you’re pretty resilient person. Clearly, after all you’ve been through and what you’re doing now, what would have meant to you to have been able to fight for your life?

Carol Billian 12:42
That’s a great question. And as you know, I have become an expert in many, many things I never ever wanted to know about I am a member of this club, I never wanted to join. But now that I am a member, I need to speak up for those who can’t. And and, frankly, I’m not going to shut up now.

I wish that I knowing everything that I’ve been through in the course of these five years, I wish that I had had the opportunity to be sitting up in bed, I wish I had been given the opportunity to have PT while I was on that ventilator. When I was discharged from the hospital, I weighed all of 69 pounds. And that is from being in bed.

For four solid months. I had a feeding tube at some point. So at some time, you know after that initial ileostomy I had to go back in for surgery to get a PEG tube put in me. I was still receiving IV nutrition. I did not have any solid foods until two weeks prior to my discharge. So I now know being in bed for 24 hours is enough to cause severe deconditioning of the body.

Those four months were unbelievable. I so every time I needed to go to the bathroom once a catheter was taken out. I was given a bedpan and I’m kind of remembering like, the first time anyone actually came in to see me for PT with a lot of help. They got me up out of bed. And they had to hold on to me so I could stand up. And they said, We want to see if you can stand for one minute and I thought I was going to die. There was no way I could do it. They had to sit me back and get me back in bed right away.

Kali Dayton 14:48
69 pounds. How do you possibly have enough muscle to hold up your skeleton? I mean, then a woman I mean if somebody I’ll have this on YouTube As you can see, you’re a petite tiny woman. But you should never weighed 69 pounds. So how long did it take for you to regain the ability to stand for one minute or to actually take steps,

Carol Billian 15:12
What actually happened was, when I finally came out of the ICU, I was moved to a rehab facility. And apparently, I developed heart issues while I was there, and had to go right back to the hospital. That was in within a week or two, that that all happened. So again, I’m back in bed.

So that’s why I count the hospital as being a total of four months. Literally being in that bed. You know, that period of time. So from discharge, I remember my doctor saying to my mom, it will probably take care of six months to gain her weight back. Because prior to the illness, I exercised, I’m gonna say, four or five times a week walking aerobic exercise, I was in good shape. Yes, I was thin. And I watched every single morsel I ate.

Maybe that’s why I survived to that point. But I was at my mom’s house, a good year and a half recuperating. And Kelly, it has taken me until now to finally get to 96 pounds. That was just literally this week. Oh, my goodness. And I feel I still look underweight, I think I think I’m about as healthy as I’m going to get thanks to PT, but repeated courses of rehab. And so when I first went home, they sent rehab home for me.

So I had PT and occupational therapy for a good month. Within 30 days, I ended up back in the hospital needing surgery. And after that surgery, they sent some rehab in again. And within two more weeks, I ended up back in the hospital needing another surgery.

Kali Dayton 17:20
So are these all abdominal surgeries?

Carol Billian 17:22
Yes, yes. So I’ve had a total of eight abdominal surgeries, all within a very, very short period of time. So thank heavens from watching you, and others. I’ve learned how important early mobility is and rehab. So not only am I advocating for others, I need to fight tooth and nail for myself. So after those surgeries and after rehab, it took me until January of 2019. I was in rehab through August of 2019. And that was going to and three times a week.

Kali Dayton 18:05
That’s a side that we don’t think about in the ICU. I personally was not thinking about how many times a week even when someone’s got someone got home I was thinking get them home and then they’ll you know, have a couple of weeks or months to recover at home. But you’re not you were barely home, you were back in the clinic doing hard work and rehabbing and just stressing your body out to rebuild the muscle.

Carol Billian 18:31
Right. And because of that deconditioning and the weight loss, my blood pressure was extremely low.

Kali Dayton 18:40
If you’ve been listening to this podcast, you’re likely convinced that sedation and mobility practices in the ICU need to change. The ICU community is facing incredible difficulty with a trauma from the pandemic staffing crisis and burnout. We cannot afford to continue practices that result in poor patient outcomes, more time in the ICU, higher health care costs and greater workload for the ICU team.

Yet the prospect of changing decades of beliefs, practices and culture across all disciplines of the ICU is a daunting task. How does this transformation start? It can begin with a consultation with me to discuss your team’s current practices, barriers and to formulate a plan to help your ICU become an awake and walking ICU.

I helped him to master the ABCDEF mental through education, consulting, simulation, training and bedside support. Let’s work together to move your team into the future of evidence based ICU care. Click the link in the show notes of this episode to find out more.

Carol Billian 19:46
I’m thinking when when when the rehab folks came in and the nurses were coming to my house, my my blood pressure was sometimes like 50 over 60 to 60 over 70 A, so I was often passing out a lot, I was just I would get up and I would keel over

Kali Dayton 20:06
What I have learned to value is the role of the muscles play in controlling those, those valves within our veins and our arteries, that regulates the fluid shift when we get up and stand up. So when patients lose that much muscle like you did, they’ve developed orthostatic hypotension, and it becomes dangerous to get up.

And that’s a whole nother barrier to address and overcome and be very careful about when you’re starting to mobilize again, we create hemodynamic instability by mobilizing patients. And that’s something that I see we don’t take into consideration when we keep them in bed. Absolutely.

Carol Billian 20:44
Right. I know that now. And I’m very, very careful. You know, I’m still struggling to put more weight on. But the other thing is, I need to remain active. If I don’t, then I could be experiencing another huge deficit again. And that’s the last thing I want to happen. I make sure that I’m drinking a lot of fluids every single day, because I don’t want to become dehydrated. For me with an ostomy to become dehydrated, that would be an easy trip to the ER. And that’s the last place I want to end up.

Kali Dayton 21:25
Absolutely. I mean, you’re you you were the poster child for ICU acquired a weakness 69 pounds leaving the hospital that’s tremendous. So from the outside, that’s very obvious, and unit looked at, you could say, Wow, that’s a lot of muscle loss. But there were also unseen impacts to your function in your life. Tell us about how sedation and delirium, and of course, septic shock and everything else you went through? How did that impact your cognition?

Carol Billian 21:56
It’s really interesting. And that’s another fabulous question. Within days of my coming home, my younger brother had taken care of the family business while I was in the hospital. And he did just a magnificent job. I couldn’t wait to get my hands back on it. I wanted to jump back into my life and put the pieces together. And I tried, and I couldn’t, I just couldn’t do things. So what I found was, in the past, I was a closet computer geek.

I knew how to troubleshoot my computer, I knew I knew what to do. And my brother brought my laptop to me. And I was so excited. And I remember picking it up, and I’m turning it every which way I’m looking, I didn’t know how to turn it on. That was the first that was the first thing where I realized something is wrong with me. But I couldn’t put words to it. So I had picked up some other paperwork.

You know, I was handling all of the financials, the income, the expenses, I’m managing my mother’s finances. And I’m looking at a bank statement. And I can’t make heads or tails out of it. And I realized something is going on in my head. I didn’t know what to do. And and I didn’t tell anybody. I didn’t tell anyone because I couldn’t describe it.

Kali Dayton 23:18
Wow.

Carol Billian 23:19
It wasn’t until it was it was really a year later that this this went on for just about a year and I’m still having to stay with my mom. I’m not ready to be on my own yet. I know that. And I remember telling her, I said I need to go back to that hospital, I need to find out what happened to me. I was really scared to death to even be near a hospital again.

But I said to her, I want to go back I need to face some of my demons. I need to find out what’s going on. So I was okay to drive then. And I drove it was the University of Maryland, St. Joseph Medical Center. I went there. And I went in the hospital and I’m just looking around at everything. And I asked for directions to the ICU.

And I’m like, “Boy, am I really going to do this now.” And I had to so I went to the ICU. The doors clicked and opened up and I just kind of stood there. And finally this nurse walked toward me and she asked if she could help me and I said “Hi, I’m Carol billion. I was a patient here about a year ago and I need to talk to somebody. Number one. I’d like to thank all of the nurses who saved me in the doctors who saved me.”

I brought my journal with me that I had been given. So this Nurse Sarah took a look at the journal and she’s reading all the names and reading some of the entries. And she said unfortunately, they aren’t here today, but maybe I can help you. And I said “Something wrong with me, I don’t know what it is.”

I said, “I used to be really good at doing certain things handling, you know, my financial paperwork, writing checks, paying my bills, but I don’t know how to turn my computer on.” And she said to me, “I think what you’re suffering from is called post intensive care syndrome.” And she said, “It’s really incredible that you came here today, because I’m here.”

number one, and she gave me this big hug. And she said to me, “You’re going to be okay.” And she said, “I have just set up a group here for other survivors like you. And our meeting is going to be in a month. Will you please come?”

And I said, “Absolutely.” And she went on to tell me a little bit more about what was going on that being sedated and being on a ventilator may be at that time may have been the cause of what you’re experiencing this brain fog.

I said, “I can’t read. I used to read all the time. I don’t have the patience. I can’t watch television. I just don’t know what to do. And I’ve got this business I need to run.” And she attributed all of it to what I had been through when I was in the ICU.

Kali Dayton 26:21
Something that I’d like that instead of from Heidi Engel. She calls it a “sedation-induced brain injury”.

Carol Billian 26:28
Yes.

Kali Dayton 26:29
When we have brain injuries, from trauma, from strokes, things like that. There are resources available because we recognize it as a brain injury, we anticipate these struggles. But we don’t recognize sedation induced brain injuries. And we don’t have resources available. So that’s how miraculous, especially back in what 2018, right, to have a nurse that knew about picks that was there on the unit.

I think that was divine intervention that someone was actually able to talk to you about this, because I think even still in 2023 many clinicians may say, I don’t know anything about that you had a rough first call, and I don’t know what’s up with your brain.

Carol Billian 27:08
Right? That’s it exactly. In fact, I was at one of Maryland’s largest hospitals in 2020, during the pandemic, and I thought that I was experiencing some delirium again. I had had another major ostomy surgery where they had redone and revised my ostomy. And I was looking out the window, and I was seeing some things that looked bizarre to me.

And I thought, “I think I’m going through delirium again. I need some help.” And I pushed the nurses call button. And I said, you know, I have PICS, I think I’m going through some delirium again. And she said, “No, no, no, you don’t have a PICC line.”

And that was really interesting to me, that she didn’t know what post intensive care syndrome or PICS was. So I tried to explain it a little bit. So I had actually reached out to some folks at the CIBS center. And Dr. Jackson, who runs the support group there try to reach a doctor at Hopkins, who didn’t know about pics, and who specializes in in it. And yet, because they were so busy, and they have so many patients, no one was able to get to me. But I was able to reach out to my friends at the time, and they really helped ground me in the here and now.

Kali Dayton 28:44
Wow, that’s amazing. I mean, that must be really triggering to, to have spent years suffering from the downstream effects of delirium, and then have it knockin at your door all over again.

Carol Billian 28:55
I think that that’s very common for every survivor of the ICU. So since that experience, I just have made a vow that I need to use what I have learned to help those other patients. Really wish my family had known at the time some of the things that I know now, but I know that every decision they made was with love. They made the best decisions with the information that they had been given.

Kali Dayton 29:29
Absolutely. That’s one of the main things that we need to change is informed consent. We need to be transparent, honest with families with patients. Anytime we go to surgery, any slight little risk of any kind of harm that could happen is disclosed. But when it comes to medical induced comas, we do not disclose that to families and or patients.

Whether or not sedation is avoidable, they should know what could happen the reality of these neurotoxic medications that were given to patients. so that they can make informed decisions, they can advocate for the right things. But even if sedation is unavoidable, how would it have impacted your recovery? If your family had known about delirium, this brain injury, the cognitive impairments, how would that have helped you? After your ICU stay?

Carol Billian 30:16
If my family had known, because they were present in the ICU, my mom was there every single day. Even though I didn’t know she was there, when I was in a coma. If she had known, she would have been able to sit there. Hold my hand, even though it appeared that I was sleeping, she would know I’m not sleeping, she could have talked to me.

I think that she would have been able to understand what she was witnessing the delirium that she saw was so frightening. For her to witness. She knew that wasn’t me. She knew clearly something was wrong seeing that, because she heard one of the nurses say, “Hey, we need to get psych in here, we need a console for this patient.”

My mother said “There is nothing wrong with her. She was not like that before this happened. Something’s going on now.” So if they had explained all of that to her, I think it would have been world’s world’s better.

Kali Dayton 31:27
How it would have been, what would it have meant to you while you’re struggling a year after discharge with these secret cognitive impairments? To have someone say, “Carol, you went through the delirium, you probably have an injured brain, you may be experiencing things here some help resources, or even just validation.”

Carol Billian 31:45
If someone had said that to me. That’s it exactly. I would have felt I would have known what it was. So I could put a name to it. And I could say, so then this is normal for somebody who went through this experience this. So okay, those medications are. It’s pretty heavy. And so that’s what caused those horrible dreams.

And I kind of hear that now. But what what do i What do other patients do with this? When are some of these thoughts going to go away as a result of this? This hospital where I was a patient still has this pics group, which has started up again, since COVID. ended, they do it virtually as well as in person.

And I’ve now become a part of that. I try to go every single month, because I want to be that person that I needed, I want to be able to tell these people, I had similar dreams, that’s normal for what you went through, I want to be there. Actually, I want to take a further step before someone has even discharged my ideal job. Now, if I could say what I want to do at this hospital, and I have said it, and it might come to fruition, what I want to do is be in the ICU, as patients are recovering.

We know that recovery is not a linear process in the hospital. And once you get home, you go forward, you go backward, I want to be there with that patient with their family member. And I just want to say to them,

“Take a look at me. I was in that bed where you were and I know some of the things that you’re going through. I know when you get home, you’re going to be kind of afraid. And maybe you’re going to experience some things you might not understand. All of those things are very normal for someone who’s been so so sick. It’s a trauma to your body.

It’s a trauma to your brain. And I want you to know, I’m handing you a pamphlet, and it’s got some information in it. You don’t have to look at it. Now it might be overwhelming. But here’s my phone number. And if you need any help, any support, I want you to call me no matter what time of the day it is. I am going to be there for you.”

I wish that what I had had because of that brain injury. I don’t think I would have been able to understand the information on that pamphlet. But just hearing you know, “Yes, I know you’re excited to go home and to get your own food and to get in your own bed. That’s going to be great. But if you experience some confusion if you have some bad dreams, please no that’s normal, and you’re going to be okay but it takes time.” That’s exactly what we need.

Kali Dayton 34:56
We need so much more transparency and preparation for Everyone’s leaving ICU who better to do it, then I see survivors themselves.

Carol Billian 35:03
This, this is now my dream job. But I even took it last month, to the very ICU doctor that I think saved my life. And Shay was so excited one to see me and see me up and walking around. And then to to have this calling now, and it is a calling. And I said to her, I need to do this. I don’t want anyone to go home and feel like, Oh, my, what happened to me? You know, it’s not enough to survive physically, you need to be able to thrive. And that means emotionally and physically.

Kali Dayton 35:49
And what do you see with the survivors in the group that you’re part of, you know, having walks their walk, what do you see? Physically, emotionally, and cognitively.

Carol Billian 35:58
I’m seeing many carbon copies of what I went through. Last month, I met several new people. And one person said that she started experiencing a lot of terrible dreams. And she went and wrote them down. And I said, I understand that I went through that as well. She even said to me, I thought I was being held in a hotel at gunpoint. I said, that’s incredible, because that’s the very same dream that I thought I was having. But I now know was delirium.

And I asked the people there, how would you feel if someone had come to you, before you were discharged, and told you that you might have some really bad dreams. And that you might be really scared when you get home. And you might find that that fear increases, as the afternoon goes into evening, because many times survivors, when they’re going through recuperation, they will sleep during the day, and they will be up all night long.

That’s when I was prone to have those same bad dreams again, during the nighttime. And “what if I get sick again? What am I going to do?” And the person you know, two of the people in that room said, “Oh, my God, why didn’t they do that for us? Why didn’t they?” And I said, “Well, we really didn’t have the resources, then this is something that I hope to do. And I want to do it as a volunteer.”

Kali Dayton 37:39
You know, when I look at the education material that we send patients when they go home, so much of it’s very generic. I mean, you can have a baby, and you’re going home with packets talking about having a heart attack and signs of a stroke, which are fine.

But why wouldn’t we provide material that’s very specific to ICU survivors, especially delirium survivors, people that have been sedated who are so at risk of having post ICU syndrome? Why wouldn’t we send materials and provide access to resources to things that are very likely going to impact the rest of their lives? That those are valid questions.

Why didn’t we receive this education? That’s a problem that we’re going to keep addressing and your your testimonial isn’t going to be part of that. What does it mean to you as a survivor? I mean, we’re talking a lot about nightmares, the mental health aspect of it? How has it been for you to find yourself again and find your mission and find what you can do if you can’t quite do everything you were doing before? How has it impacted your mental health to find your calling?

Carol Billian 38:48
Number one, I am very open to therapy. I would encourage every ICU survivor to reach out to a mental health provider shortly after they are discharged from the hospital. It’s a long journey. And it is a physical journey and an emotional journey. Anytime kind of trauma, I know, can cause Post Traumatic Stress Disorder now which folks are finally beginning to recognize and we are calling it post intensive care syndrome.

They go hand in hand. So I would recommend that to them. For me, thank heavens, I had actually started therapy prior to my hospitalization. And while I was in the hospital after after those periods of delirium, my doctor recognized that some of what he was seeing was not normal for me. He knew me For years prior to my surgeries, so he said to me, would you like someone to talk to? I said, Absolutely. And what I did was I brought in my mom, my brother and my sister in law were in town at the time. And I said,

“Is it possible that that person can meet with me and my whole family?” And they said, “Absolutely.” That is so important too. Because it’s a journey that the entire family is taking it is not just that patient. I know that once I came home, I was pretty certain my mom was experiencing post traumatic stress.

The day after I became sick, she knew the phone call that I had made to her the night before. I don’t feel well, my belly feels like it’s on fire. I’m gonna go to sleep. Hopefully I wake up, okay, tomorrow. That was in her head. The whole next day, she was calling me on the phone. Because first thing in the morning, I always call her to see if she’s okay.

Do you need anything? Where would you like to go? I never made that call. And she kept calling me. I never answered the phone. And she sent my brother over to check on me. That was when he found me collapsed on the floor unconscious. So after going through this whole stint for months in the hospital, and even up through last year, if I didn’t answer my phone, within so many rings, when she thinks I should be home, she was feeling panic. So we need to support those family members. And, again, that’s what I want to be doing before someone leaves that hospital to go home.

Kali Dayton 41:52
And this is a perfect segue into the following episode after this will be an episode with a husband of an ICU survivor, who’s right in the thick of her post ICU syndrome. And his post ICU syndrome. There’s actually a diagnosis of picks for families. I have given us a perfect sample of what your family went through.

Carol Billian 42:14
Yes, yes. Yeah, it is a journey that every member of that family is taking. And I have an uncle, you know, from he was in town from Florida, he came to see me to help my mom with some of these decisions, because he had a medical background. And he was feeling helpless. At that point in time, once he went back home, what can he do to support me? How can he help me. And that’s what I think every member of the family needs as well.

Kali Dayton 42:49
Carol, you are a treasure trove of experiences. And all of this is extremely applicable to what happens day one ICU transparent information informed decisions being made. The ABCDEF bundle using the sedation only when it’s needed, understanding that if we automatically state patients and keep them sedated, there’s a big price to pay to the body, to the brain, to the family to the livelihoods to their careers.

Post -ICU syndrome includes the body, the brain and the Spirit are psychologically impacted, caught on impacted, physically impacted and you’ve had all three of those you are an expert in pics, and an incredible advocate for current patients, future patients and families.

Thank you so much for everything that you’re doing. I would invite everyone to follow Carol on Twitter, she puts out amazing posts, she doesn’t mince words, she puts it doesn’t like it is. But Carol, I appreciate that you do it with so much love. Because you are obviously very aware of the opportunities for improvement when it comes to dissident sedation and immobility.

You’ve suffered from that gap. But you’re also so supportive and so loving with ICU community, you understand you’re compassionate with why they do what they do. And so I appreciate you being so balanced in your approach, because you can be very better and yet you’re not. And you’re going to be an incredible asset to the community.

Carol Billian 44:09
Thanks so much. I really appreciate that. And I know that in the past everything was done. That was best practice then, but I thank heavens that you and other doctors are looking and noticing that some of that’s not working, maybe we need to evolve. And they are and Big changes are being made. And I just want to be a part of that every step of the way.

Kali Dayton 44:38
You absolutely are in it survivors that will bring us to to evolve in the change the data the research is very compelling but your voice your experience your sufferings, had at the heart and really reached to the core of us that remind us of why we’re in medicine and what we actually want for our patients. So thank you so much and stay tuned for the picks for family This episode coming next.

Transcribed by https://otter.ai

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