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What causes Post-ICU PTSD? What is it like to live with this trauma? How does it impact life after the ICU? Spencer Freeman shares with us intimate insight into living with Post-ICU PTSD.

Episode Transcription

Kali Dayton 0:27
Throughout the podcast, we have talked a lot about delirium in the sense of what causes it, effects such as prolonged hospitalization, increased mortality rates, cognitive deficits, and so forth. Yet in discussions with providers online, it is continually clear to me that we as an ICU community are very disconnected with what delirium is truly like for those that experience it, many of us continue to insist that sedation is given to prevent traumatic experiences, and that putting patients in medically induced comas will prevent post ICU PTSD, I can understand how we would develop that sense of logic as our patients seem so peaceful and cozy when they’re comatose.

Yet, this reasoning does not harmonize with what survivors and research has been telling us. Truly the only people authorized to teach us what post-ICU PTSD is, what causes it, and how to prevent it, or those that have and still live it. The next few episodes are dedicated to post ICU PTSD. And they were brought to us by those whose sufferings can break through our cultural teachings and bring us the truth. Yet, only if we as an ICU community are open to learning and understanding from patient perspectives.

Spencer Freeman 1:47
Hi, I’m Spencer Freeman. I’m from Atlanta, Georgia, and been here most of my life and lived all over Georgia, went to school in Georgia, went to law school in Georgia, works in Georgia, but all over the state. Originally, I went to college as a broadcasting major. And that’s what I did in high school as well. I was always I was class clown. I was the television show host and MC, the pep rallies and all those kinds of things. I was prom king, all those kinds of things you think of as someone who’s going to be in broadcasting or need attention. You know, an only child really loved the University of Georgia graduated early, started working for a clear channel affiliate in Atlanta, doing a morning show and doing stand up comedy at night, making like almost $1 an hour.

And it was a lot of fun is crazy as young and then I knew we were going to get cancelled. So my then girlfriend, now wife was going to law school. And I thought that would be a good idea. I always did well in school. And I thought I could always fall back on a law degree if I needed to. And if comedy didn’t work out, so I went to law school. Because I was trained in broadcasting, I became a trial lawyer because most lawyers don’t want to talk or argue even though that’s what they say they want to do. And it was really the only thing I was good at. And I got work at it right away. And I did well, and I just sort of failed my way upwards.

I became an in house counsel for accompany. And I did fairly well. Did all the things you would think, but I’ve suffered from generate severe Generalized Anxiety my whole life, along with panic attacks. And oddly, I only sort of felt normal when I was doing the performing, whether it be legally or in radio. But I couldn’t handle the day to day stuff of life. And I also experienced a tremendous amount of death in my family and in my close friends and I lost a lot of contemporaries. And now through therapy, I know it was abnormal, it was atypical.

And so I you know, I had done something like five eulogies by the time I was in my early 20s, and probably written a dozen obituaries. Not just for a job, but for family members and friends. And so it took a toll on me. And one day, you know, the Friday night beers became Thursday night beers. Then it became Friday morning to get rid of this hangover. And you know, a few years later, it became a half a gallon a day alcohol problem. And problem is probably the most under estimating word I could use there. But it was a life life altering problem.

But you know, I didn’t….. It made for an abusive marriage, but really because I was neglectful. I didn’t my wife wasn’t scared of me. She’s just sad. And I isolated in that book. I work 60-70 hours a week and when I was working, I was drinking. And when I was working, I was drinking. So I wasn’t a great son or husband or friend. Thankfully, I never, you know, hurt anybody too badly physically or a DUI or anything like that, but obviously should have.

And then one day in June of 2016, my stomach started hurting really, really badly. I had been trying to stop drinking, because I knew it was such a problem. And had my wife call an ambulance because I was throwing up and throwing up blood, and my stomach was swollen. And I knew something was wrong that I was starting to experience DTS. I didn’t know that’s what that was. But that’s what I was experienced was delirium tremens. And it was bad. And when I got to the hospital, I kind of just said to my wife, and my mom, was, you know, will you love me no matter what, because I knew this was it. You know, this was the jig, jig was up. And I remember being in the hall and being in an amount of pain that was unimaginable, as I now know, pancreatitis to be.

And I remember them saying you’re having having trouble breathing, we need to put you on a ventilator. Because this is bad. And I kept, you know, thinking I need to clear my throat. But I don’t remember telling my wife that I saw Mark Twain and talked to him, that I wrestled an alligator in the hallway, he was trying to get in the room. You know, all these kinds of things that you know, is alcohol withdrawal, and things like that. And those were my sort of last fleeting memories.

And then I woke up a month later, and I’d been in a coma. And I was bad. Woke up with a trach, feeding tube, PICC line, I’d had a swan I think at one point. All the things that critical care medicine has- I got one, if not two of them at some point. So I was strapped to the bed because I’d been a particularly difficult withdrawal. And I had broken several hospital beds. I used to lift weights, and I was fairly strong and compact. And if I didn’t break the straps, I broke the bed. And so they had a tough time calming me down.

And yeah, so the official diagnosis was then it was acute necrotizing, pancreatitis, ETOH. And I was, yeah, in my own world for a long time. And even when I got out, you know, I couldn’t talk and I would be awake for three days straight, and then asleep for three days straight. And it was as difficult as one might imagine. And then slowly, but surely, I started to get better.

But, you know, I remember everything in the coma. I remember, there’s probably about a dozen and a half. We call me and my therapist, you know, you’re having mental health problems, and you have multiple therapists. So I have a regular therapist, who helped me with my addiction, along with my 12 step recovery stuff. And then I have a trauma therapist for the PTSD, who specializes in that.

And we call them “memories” from my coma, because that’s how they feel they’re much more vivid and clear. And then any memories I actually have in my life, I remember them as is more clearly than my wedding day, or things like that. And some of them are hours in length. And some of them are months, weeks and months and traveled to places and you know, I can remember plane flights and what seat I was sitting in, and what music was playing, and what I was eating, and where I was going. Some of them occur in the 80s and some of them occurred in the 60s and ones during World War Two.

They’re just all the craziest things you can think of but they are very vivid and they do feel very real. And I have one of them almost every night when I sleep still four years out. I still have those dreams and they manifest present themselves during the daytime as well when I’m awake. So I hear the changing of a banana bag or I hear grounding up of pain medicine or you know, oxygen monitor, set you know reading 90 starting to get someone’s attention I hear all that during the day. I smell and taste saline and Dilaudid and all those other medications. I sometimes even see nurses walking around see doctors in my peripheral vision. But it’s mainly the smells and the tastes and the sounds.

Then sometimes I totally disassociate. I go into it and I’m gone for I don’t know how long. So I’ll be in one room and I’ll find myself throwing up in the bathroom. Because my my gut-brain and my Brain-brain, my surgeon, at the Medical University of South Carolina, tells me are wildly connected now because of this trauma. Totally new nerve ways, pathways, so they react to each other.

So if my brain thinks something’s happening, then my gut brain will start to try to get out, whatever’s in there, or my pancreas will start to spasm. And that’s very painful. Or I’ll eat something I shouldn’t have eaten, you know, some ice cream or something, something particularly fatty, and then my brain will start to go, “oh, we must be back in the ICU”. Then all of a sudden, the ice cream tastes like tastes like saline, and so that that’s rough. Then obviously having to go back in the hospital as much as I do. I’m re exposing myself to the trauma.

So it’s, it’s different in the sense that it in for me anyway, my experience is that it didn’t just happen to me. And then I was out, because my condition is now chronic. I’ve spent probably about five months of the last four years in either the ICU or the hospital. And then I had a pretty significant distal pancreatectomy and splenectomy and gallbladder removal, and you know, all the activities, I like to say that I had in Everything Must Go sail my stomach, a bunch of tumors that had developed from the drinking. And it was bad. It was supposed to be an islet cell transplant, but I drank away all the islet cells. So I just had the head of my pancreas. But that was a week plus in the hospital and is a very painful surgery. But every exposure

Kali Dayton 11:48
During your other admissions to the ICU? Did you also have to delirium during those? Always?

Spencer Freeman 11:56
Two, two, yes, two mainstays in the ICU. So the first ICU stay was about six weeks, then I went to an LTACH rehab facility for less than a day. It didn’t go well. I’m not a fan of those facilities, particularly the ones in Atlanta, they’re underfunded and understaffed and poorly run. And, yeah, I had one, my attending physician at this particular facility, told me that I shouldn’t worry about getting the medicines that were supposed to be transferred over with me from the ICU to the rehab facility. Because they were coming in even if they didn’t come, I was a Christian, so I was going to be fine. Essentially saying to me, “If you die, you know where you’re going. So it doesn’t matter whether or not you’ve got the Ativan or Dilaudid, or antibiotics that you need.”

Because, you know, it was just… horrible, horrible medicine, especially in context with the people who had just spent day and night, saving me and making me comfortable, and caring for me and caring for my family on top of that. Anyway, I went back to the ICU for another five to seven days, and the delirium was there again, I mean, it, it was just…. like I hadn’t skipped a beat. But I think that’s partly because it never went away. I think I was gone for so little, that as soon as I woke up from the coma, that just stuck with me, and things like time and the passage of time, and location, all of that kind of went funny.

So if you had asked me what day and time it was, I could have told you, but if you’d asked me how long it had been since the nurse came in, I would tell you some exorbitant amount of time. Like, you know, nobody’s been in here since yesterday, when in actuality, it’s been 15 minutes or something. So but if you’d said to me, what time is it? I could have easily said it’s, Oh, it’s 1:45 on Monday, and that I would imagine present is incredibly confusing. But that nonetheless, that’s sort of where I was. And the delirium was always there. No one I got to step down, it improved. And I was still on fentanyl and oxycodone and Ativan and, you know, so it’s, I think it’s been my experience that if your scenery doesn’t change, and your medicines don’t change, and your food doesn’t change, it’s very hard to get the delirium and the PTSD to change, because all the input going into your body is identical. Yet you’re trying to tell it something that it has no evidence of.

Kali Dayton 14:54
That is such a good point because I think you clearly had the perfect storm For delirium, you had septic pancreatitis, alcohol withdrawal, you were on a ventilator, you were in a medically-induced coma. So you’re getting all the sedation, which alone causes delirium, yet you had all these, you had so many factors to contribute to horrific delirium. And yet, things like fentanyl, Ativan, those alone can cause delirium. And you probably won’t weren’t mobile at that point when you want to step-down.

And so it makes it really hard to clear out delirium. So you make a very good point that it doesn’t just go away. And I think sometimes it’s easy to chart and out times for when someone can say where they’re at and what day it is. And yet, one thing I like to do is a mocha score, have speech therapy coming into mocha score, and it gives us even further insight into what’s really going on cognitively beyond simple questions. And so I’m sure you wouldn’t have had a good MOCHA score at that point, you were not yourself. And maybe that wasn’t very clear. But also, maybe there wasn’t an aggressive focus and clearing out your delirium and getting you functional and back on your feet yet.

Spencer Freeman 16:16
Absolutely. I mean, that 100% the case. I mean, you know, the nurses and PAs and doctors that did believe in me, even they knew the odds that were stacked against me. So, you know, sort of higher, aspirational goals weren’t really as as important. And I understand why, because it was still such a critical situation for me. But there were a few that were there with me in my mom and my wife engaged me in a lot of that, and because the nurses allowed them to push me.

But you know, the nurses would hear me, once I got out, they would hear me talking. Because I immediately started going back to what was comfortable to me. Once the trach was out, my therapy came back, I started immediately reading the books that I read when I before I got sick, so they would see me reading philosophy, and they think my brain was fine. But you know, that would be no different than somebody just rocking in the chair, I was just doing it because I was so familiar to me. It wasn’t as though my brain or my activity was really reflective of that kind of high thinking. It was going through the motions.

And I was always this verbose, verbose, but it didn’t make any sense. My wife, and you know, my wife, and my mom knew what my baseline was. But these doctors and nurses didn’t. So when I said, I’m suffering all these symptoms in my brain function is a typical, they, the many of the providers took it as a sign of arrogance on my part, and I totally understand and empathize with them. But it wasn’t, it was just my baseline was different. And where I could communicate and they, and the ones that did believe in me, were so worried about saran-wrapping me literally and metaphorically, that, you know, I remember the struggle, I had to had to get them to allow me to drink water and just rinse it around my mouth and spit it back out. Because they didn’t want me to swallow water.

Kali Dayton 18:36
Yeah.

Spencer Freeman 18:36
And I had been such a difficult patient in the coma, that they didn’t believe me that I would spit it right back out. My wife and mom kept saying, “When he’s awake, he’s a different person.” And how do I say to them things like, “I promise I’ll spit it back out.” When I’ve just learned to read and write again. That’s a very high functioning conditional statement.

If you give me water, you can trust my promise that I’ll spit it right back out and not give myself pneumonia all over again. They’re like, “No way, dude, you just gonna have to be uncomfortable. ”

Kali Dayton 19:10
Yeah, that’s hard.

Spencer Freeman 19:12
Yeah, and like things I remember…. the battery was dying on the clock across the end of my bed. And it would take off five and 10 second increments. So if you add that to, you know, Dilaudid, ketamine and Ativan and a temperature of 104 and not leaving a room, you know, and being awake for three days. I just kept telling my mom, “Time is broken. Time is broken.”

But what I meant was. “Will you check the battery on that clock? I think it’s messed up or something.” but that, you know, the nurses would hear me say, “Time is broken”, and they would think, “Oh, that’s delirium. Like, he’s expressing that things don’t work out.” But it the nuance that it was there was very difficult. So I empathize with, particularly the nursing community, trying to distill all of this information. It’s a tremendous amount of information that’s coming at them, especially when you have blood on you and vomit on you.

And you know, the, the patients are difficult and one of them might have just died on you, and you’re just a human being, and maybe you’re fighting with your spouse at home or your kid got a bad score. And now all of a sudden, his patients asking you to practice medicine at an incredibly high level. You know, this isn’t a dislocated finger. You know, this is this is complicated stuff. And so I think the training and the the investment in helping nurses, particularly, but also PAs, and doctors, hear from the patient as a part of the ABCDEF bundle is paramount. It’ll save lives.

Kali Dayton 21:09
Oh, you’ve hit so many nails. It is such a high level of medicine. To discern delirium, sometimes it’s completely obvious, right? If a patient’s thrashing, kind of pull out their tube, I mean, it’s very clear that they are not in the right mind. As a nurse practitioner, I feel like I rely on my nurses, a lot to discern from delirium. I love the CAM score, and we use it every couple of hours in the ICU, truly. But sometimes there can be kind of false negatives, where people can pass a CAM score.

So I had a patient once. He was a physician, very high functioning. And you’d ask question, like, does a rock float on water? And he say, depends on how salidic it is. Right? Yet he ever he was still hallucinating. And he was still delirious. And so I think the culture and the understanding of delirium fluctuates so much from unit to unit. In some places delirium as a big focus as far as preventing, treating, helping patients get over delirium.

And nurses, certain nurses that I work with, they can smell it from a mile away. They can see patient’s eyes just gloss over just a little bit, but the patient can be completely appropriate, but they can smell it coming. And yet in other ICUs that I’ve worked in, patients can be totally out of it and they’re like, “that’s just who they are.” And there’s kind of an apathy to it.

But I think it’s because they don’t understand what it’s like for the patient. And especially they don’t understand what it is like for them afterwards. What the repercussions of delirium are. And so you two powerful story. I mean, like I said, you have this terrible storm of delirium, sedation or not, you are going to have delirium. But when you describe it as being more vivid than your normal memories, or experiences, that that horrifies me, now that I’ve talked to survivors in an episode, I think it’s 5, where they talk about those, I don’t even want to call it “nightmares”.

They’re not nightmares, it’s more vivid than a nightmare, and I’ve never experienced it. But what you as survivors tell me is that it is explicitly real. And so when I hear that, it makes me shake when I see patients start to check out when they start to go into delirium. And NOW I know I didn’t before. Now I know that that is not just for the moment. That is going to carry with them for the rest of their lives, potentially. And so when I talk to other providers, other nurses online, and they say that they give sedation to prevent post-ICU PTSD. They’re afraid of patients being traumatized by the ventilator or by being critically ill in the ICU. It doesn’t quite match up with what I hear from you and all the other survivors I’ve talked to. So as you suffer with PTSD years later, what do you feel your PTSD is from?

Spencer Freeman 24:21
That’s such a great question. And I, I get so I tried so hard not to get choked up, because I hear you talking about that stuff. And it… I, it’s right underneath the surface, That trauma is there all the time. It doesn’t go away. It doesn’t lessen and so even when I get to tap into it in such a positive environment in this way, it’s still an incredibly violent experience is very, the word I use is bright. It’s very, very bright.

And that’s a good thing. But like anything, in moderation, you know, if you stare at the sun too long it, it hurts. But it’s good. It’s better now. But that’s why I use the word memory for the stuff that happened in the coma, we me and my therapist, we call them memories. And, you know, it’s so critical, I think for people to, to, as quickly as they can get into some kind of a trauma diagnosis or therapy for the PTSD, because one of the things that makes it worse is denying it or ignoring it. And so I had, well, meaning providers, you know, give me bad advice about dealing with the PTSD or, or simply ignoring the PTSD.

And then I was embarrassed, because I didn’t feel like I got mine in an honorable way. You know, I wasn’t in the Marine Corps, and my grandfather, you know, I didn’t take Omaha Beach like my other grandfather, I drank myself to death. But that’s not the way my family and my providers wanted me to look at it. And so I’m very fortunate, but there was a few in the minority of physicians, and providers, just like any, any profession, I think less of it in medicine, but there are some difficult situations and people out maybe to be doing other things. But that, that lack of just talking about it in being around it, in helping with it makes it worse. And the way it presents itself, the reason I call it “memories” is because they’re with me all the time. Every time I go to sleep at night, re-experience one of them. And I don’t “reimagine” it, I don’t “dream” it, I literally re-experience it.

Kali Dayton 27:04
What are experiencing things clearly from the ICU or the hallucinations that you had?

Spencer Freeman 27:09
Both. Both of them, both of them. So what happens when I’m asleep is one of two things, I’ll either have the coma memory, verbatim exactly how it went. And it will be something like, in one of them, my wife and I got a divorce. And we met in a mall. And we talked about it. And I encouraged her to move on. Because I was not going to be a good husband, I was drunk. And she needed to move on. And I was happy for her while being personally devastated. And I remember that conversation.

And then she moved to a whole other country and married someone else, and adopted a sweet little girl like yours. And I remember all of that. And I remember that the little girl passed away. And I flew over to Japan, to come for my wife and to speak at the funeral because she asked me to. So I remember all of that. So I’ll go to sleep, and that whole thing will play out. And then when I wake up, I realized that that hasn’t happened.

But what I then start to hallucinate is that I’m back in the ICU, I can’t figure out how I got from the dream back to the ICU to then in a matter of moments, or minutes, or hours, my what’s real in quotation marks will start to blend back in. So I’ll start to smell my own bedroom, or my dogs have become very, very close to me throughout all of this. So they’ll wake me up licking my face. And I’ll think, “If I was in Japan, and now I’m in ICU…. why, why are my dogs here?” And I can interact with them. But my touching, my smell, will be them. But all I can see is ICU and all I can hear is ICU.

And so it’s sort of like falls away in stages, and sometimes quickly, sometimes slowly. But that’s what happens at night and then during the day, if my pancreas spasms it’ll sort of pinch and be very painful. And then I’ll get a flood of input that is inaccurate. It’s you know, saline smells or Dilaudid tastes or metallic taste or I can feel the PICC line in my arm. And I can feel medicine going through an IV and I’ll wake a lot of times I wake up from scratching myself. Trying to pull stuff out and screaming, or my wife wakes me up, and it is very, very scary.

I’m very fortunate that I’ve learned some grounding techniques, and some breathing exercises that are very, very helpful. You know, go outside in fresh air, my backyard, or sometimes then there’s no way around this. I have to take, you know diazepam or oxycodone to help with the pain. And I tried to…. I’ve gotten better. You know, the levels of opiates, for instance, I take are a 10th of what I take when I left the hospital. But that’s its own battle, you know, because I didn’t make that deal. I never had a choice with the opiates, they were given to me when I was in the coma.

And you know, the fact that I’m an add an alcoholic, was just a calculated risk, and they just hoped that I’d be able to deal with that. And luckily, I’m not cross addicted. But I’m hyper vigilant. You know, I go, my anesthesiologist gives you the medicine, and this is how many I have and some drug tests I have, and I write everything down. Because you never know. And the reason I bring that part up is when the trauma is so bad. And medications that can mask the symptoms are right there. It’s a very difficult position to be in, especially when when you left the hospital. No one told you that was going to be a problem, anyway.

Kali Dayton 31:20
Your point about the opioids is so….. it’s kind of new to me. One, in the “Awake and Walking ICU” , we don’t give high doses of opioids, as a standard. Though, when people are medically induced comas, usually there’s going to be a fentanyl drip running with propofol or whatever the sedative is. And so it is normal to give high doses of opioids with medically induced comas.

Spencer Freeman 31:50
I was in a ton of pain.

Kali Dayton 31:51
Oh, yeah, no pancreatitis is horrific.

Spencer Freeman 31:53
It wasn’t as though there was an option. Yeah, like I don’t begrudge it saved my life, those meds, yeah. And I’m so thankful I have them. And I didn’t get to, you know, it wasn’t informed decision on my part, my wife and my mother had to make that decision for me. And I’m so glad they did. But it’s something I’ve had to deal with and still have to deal with and very much hope that there are alternatives in the future for me, that I can get with doctors for.

Kali Dayton 32:24
No, and you’ve taken it completely the right way. I think something that we underestimate, though, when we give this high dose opioids is the dependence that it can create. I think, in your case, sedation was likely essential. Opioids were essential. Sometimes we cause these storms when it’s not necessarily entirely essential. And so we had another survivor that talked about how much he hated coming off the opioids, how hard it was.

And then though he had a little bit of pain, and they would immediately offer opioids, he would refuse them once he was able to speak for himself. Because the coming off of them was so difficult. So I think that is an important insight into the storms that we can create for people, and that when we understand how hard it is to come off, or the risks that we run, then we can triage better. Whether or not that’s really essential, in your case, it was. Sometimes it’s not, and we get we habitually and usually out of compassion, give copious amounts of opioids, but it contributes to the delirium, and then it causes a battle later on down the road. So that’s a really interesting insight that you give us.

Spencer Freeman 33:34
In the ketaminev and the the disassociative medicines- the benzodiazepines, those medicines as well. Coming off the benzos was harder for me then coming down the opiates. Those withdrawals are horrible, and there’s less my experience was there’s less medications to help with the side effects of that, and it lasts longer, the benzos, you know. The opiates is 24, 48,72 hours, something like that.

And the ketamine while you know that, that’s one that I wish there was more work with, because that allowed me to be present. But apart from what I was experiencing, and you know, it has sort of amusing stories, like I remember one time, they were being loud in the hallway, because there was a code blue, and it was getting on my nerves. But it’s a code blue, so I didn’t want to complain about it. But I was strapped to my bed.

The ketamine, I think, my uninformed patient opinion, but my experience was that I thought to myself, “Oh, you can just get out of your body and go close the door, and then just come back into your body. It’ll be there when you get back because it’s strapped in.” And so that’s what I did. I remember it. Now obviously, that didn’t happen. Obviously, that didn’t happen.

So I know that some of my memories you know, my nurses being difficult with me might have just been then going, “Spencer, if you keep flailing, you’re going to hit one of us in the head. And what you know, this is not gonna be helpful to anyone.” or, “You just broke a $30,000 bed, you got to calm down.” But to me, it seemed, I immediately remember feeling guilty and embarrassed, I remember one nurse saying, “You’ve got to stop hitting your emergency button.” And I talked to her after the fact that she’s very polite, very pleasant, and very attentive. But at the time, I was embarrassed for months about that, I carried that guilt with me that I had been a horrible patient. And when I went to apologize to her, she didn’t even remember it. She was like, “All I remember is, you know, how sick you were, and how much we were trying to help you.”

And so the same situation, two incredibly different experiences of it. With neither one being right or wrong, per se, hers is probably more accurate, because she wasn’t, you know, hyped up or, you know, hopped up on all these medicines. But I think that what I love about what you’re talking about, what’s happening here is that empathy is the guide for all of this. And, you know, you guys can’t let the patients run the hospital. But having their input, you know, as people talked about, like, I think on 36 of your podcast, where the the board, dry erase board can be a passport, is a great analogy. Because you don’t have to use the passport, you got it to travel, if you need it, it is the only way to go.

And when I started to be able to write on that thing, it changed everything. And the nurses who filled out the thing each day about themselves, and asked me what my favorite show was and what I liked. And, you know, what was my favorite thing to do? It was completely different. And that human aspect is everything. And I fundamentally believe that if medicine is going to fundamentally change, it’s going to come from the patients and the nurses. I think that’s the only place that it can come from, because I think that’s where there’s just the most empathy. And you can’t change stuff. By doing the things that have always been done.

Kali Dayton 37:23
I love that. And that’s been one of the main themes, I think, in the podcast is, it’s not all on the nurses. But nurses are so powerful, that if we’re going to humanize the ICU, and change patients long term outcomes, it’s really going to be from the nurses. And when they understand what the reality is, for patients, during and after the ICU, we’re just gonna have to get out of their way, because they’re going to revamp everything we do in the ICU to accommodate for better long term outcomes.

I think every nurse that I’ve ever met and ever talked to about these kind of things, they have gotten into the ICU, or into medicine in general, because they want to help patients. There are some cultural barriers to some of this delirium/ PTSD discussion, because we’ve always been taught that we have to sedate anytime anyone’s on a ventilator. And nurses deeply believe that that’s going to spare them PTSD. Which makes sense that I feel is not a good experience. But what we don’t understand is what you actually are experiencing when you’re delirious.

Spencer Freeman 38:38
Yeah, you know, it’s so funny you say that, because when I would first go back to the hospital for my pancreatitis, the chronic nature of it, I would routinely request even though I knew it wouldn’t get granted, for me to go back to the ICU, because that’s what was comfortable for me. That’s what was familiar. And that’s what I knew. And they would say, “Why in the world would you want to go back there?” like that means, by definition, things are not going well for you. And I say, “Yeah, but those nurses don’t have time to mess around. They get it done. And they get it done quickly in right, because they know that the margin of error is so small, and that I would rather be under that kind of medicine in that kind of a situation.”

And I think the things that are fascinating to me that I’ve heard you talk about is sort of two things. One truth I know is that it’s rare for nurses to make a career out of the ICU. So you have people who aren’t going to be there forever. That so you have an experience issue, right? You have people who are in there for a year, two years, three years, four years, but there’s not a lot of my experience and what I’ve read, people have been there for 15, 20, 25 years, a lot of people cycle in and out because of the nature of it. So that’s hard. You’re re educating people all the time. And then the second thing is what you’ve brought up, as nurses aren’t taught to communicate with patients like this, especially when they’re in a coma, or sedated, or whatever it is, and how is that? How do you make up for that just by hard work and dedication to the profession? Or belong or care? What are you continuing education? Like, how does that work?

Kali Dayton 40:22
I think it’s creating the culture that new nurses come into. That was my experience, at least in the “Awake and Walking ICU”. I was taught that patients are human, and that we should expect them to communicate with us. So I was never trained to just knock them out. That was never my expectation. So it was really abnormal for me to go to a different ICU later, and have everyone be comatose. And these were similar diagnoses that I was used to taking care of, but they were completely different patients, because they were, they were just bags of potatoes in the bed. It did. It didn’t feel right to me.

So I think my perspective and my training came from a culture that was been built by nurses that had been there for 15, 30 years. And I think those nurses especially stayed there, and especially in that ICU, because they felt so fulfilled, because they connected with patients, because they saw them as humans. And these, these are the kind of nurses that took a culture and things that were normal and an ICU community, and asked, “Why?”, “What if we change this?”, “What if we let patients be awake?” “What if we walk them?” and I saw the difference that it made, and that’s what made them so dedicated to staying in the ICU.

And then every time they have bring on new nurses, they just treat it like it’s normal. They’re like, “welcome to this ICU. This is what we do, we are going to have our patients be awake, walking as much as they’re able, and we’re gonna make sure that they walk out of here.” So that’s, that’s I think some of the barriers is nurses don’t know what’s possible. A lot of nurses don’t even know it was possible to have patients awake on the ventilator, let alone walking. I don’t know if I would really question it either. If I hadn’t been “born” into that kind of culture. You kind of are the product of what you are taught and experience. And that there’s a level of convenience when patients are sedated.

But I think that’s because, like you explained, delirious patients are very difficult. So when we sedate people start them on sedation, then wake them up. They’re delirious, they’re a lot of work. It can be dangerous. And so no one wants to take off sedation. And so part of my my goal is to say, “What if we don’t start sedation and don’t make people delirious?”- you had a lot of exceptions. You were a very difficult and high risk patient. You were going to have to learn no matter what.

But not all patients have to suffer what you’ve been through. And I think that we assume that they’re going to be that coma, wake up, go to attack, get back on their feet and move on with life. And like you’ve been explained, that’s not the case. And I don’t think we understand what there was like, during, but I don’t think we have any idea of how much impacts your life years later. So you’ve talked about what the PTSD is like, but how has that impacted the rest of your life, all the other aspects you were lawyer, broadcaster, stand-up comedian. So how has your life been living with this kind of PTSD?

Spencer Freeman 43:31
It’s night and day was totally different. So as I said, when I got out, they were very clear about the likelihood that I would live, you know, more than 6,12,18 months or and if I did, the quality of life would be not very good. And then when I got better, it was well, “You’ll never be able to do this.”

And eventually they just stopped setting goals for me because I kept doing them. So the basic things that a lot of people struggle with came very quickly to me, I think partly because of my age, I think partly because of my stubbornness. And in, in in large part because of the support I had, because the providers in my life were so good. That PA that I discussed was a my life really constantly. And so she knew she just took an interest in me that was above and beyond the call of duty. And she is an angel to me and and that changed a lot. And I had a lot of help.

But the first probably 18 months of my life was nothing but physical and mental recovery. That’s all I did all day long. I worked on walking again. I worked on building my strength back up again. I worked on long-term exposure, going back in the ICU and just sitting there with the smells and trying not to freak out. Because that the delirium is like a combination of the worst anxiety, the worst fear, and the worst physical pain you can think of.

And so, you know, if I’m a nurse, and the patient says… like, I know, for me, giving blood is really difficult. And if the phlebotomist is clumsy, it causes a meltdown in my body. And they’ll just think, “Oh, everybody hates giving blood”. And that’s not what I’m experiencing… That’s not what this is. And so what you know, if I was a nurse, and I had been taking blood for 20 years, and some patients said to me, “I’m special, you know, this is hard on me.” I’d be like, if I did like, “If I did that for everyone that came in kid, this would take forever.” And so I get that too.

But that’s one thing, you know, when you’re talking about knowing what it’s like, that’s what it’s like. Afterwards, it’s all that same stuff. It’s just muted. And, you know, then when I have to go into therapy and talk about it, or when I’m in 12-step recovery, talking about it, it brings it all back up again. So it’s very hard to there’s a lot of sleepless nights, there’s a lot of not eating and then eating too much. There’s a lot of, you know, binging in sort of all aspects of your life, there’s a lack of patience.

I remember the first few weeks and months I kept, you know, everything I did, I sort of reverted to kind of an alcoholic way of doing things where it’s like, “If one is good, and two is better, and three must be even better than that.” And that’s great, to a point. You can overwork yourself in physical rehab. And so I had to cede a lot of control to the people who took care of me in my life. So I was blowing in a breathalyzer three times a day for my wife. I was writing down everything I ate. I was writing down all the medicine I took, when I took it, pain level, temperature, blood pressure, anything you can think of. Then Christmas came and went, and I was still here. And I’d lost 45 pounds and my hair grown back out and the scars started to heal, you couldn’t even see or my trach was as much and started talking about surgeries and things like that.

And then the the surgeries went really well. The first few didn’t, because they went in and the cysts are everywhere. And all the your, I guess, nerve pathways. I know I’m butchering that. My gastroenterologist would just, he’s the sweetest man ever. He’s so smart, he’d be like, “I’ve told you so many times”- but they told me how all that works. And it’s just been all rewired because of the trauma.

And so a stomach ache for me, triggers all of that it’s incredibly painful. I remember I had what’s called an omental infarction, it’s when the little sack that is around your intestines gets pinched, happens all the time, kind of a painful thing goes away in a couple of days. It kept me in the hospital for six days, they couldn’t figure out what was wrong, until my surgeon got my MRI and said, “Oh, this is what it is.” And the doctor said, “Omental infarctions aren’t this painful.” and he said “Well, ou know, for him they are. And so it. what it’s been like is unique.

And I think that would be the sort of theme of anybody who’s coming out of something like this is there are themes and there’s commonalities, but each person’s is is a little bit different. And so I remember probably a year and a half ago, I called my disability company, I said, “I’d like to try to work. I want to try to practice law.” And I knew some people that would pay me to handle cases for them. And as soon as I stepped back in the courtroom hallucinations started immediately. I started hearing hospital and spelling everything.

And so it was almost as though as soon as my anxiety went up the delirium or the PTSD, the trauma, and I sort of think of them like ICU delirium and post intensive care syndrome, and PTSD is all under this big banner of like, post hospitalization, trauma, you know, and, like you were so well put it really unavoidable in my situation. So I hate to, like speak out of turn about other people’s situation, because the doctors just, I mean, above and beyond in my situation. I mean, they just just miraculous what they did. And I never be able to thank them enough, other than by doing things like this and talking about it. But still, you know, I have scars from it.

You can’t perform surgery on someone without causing scars without changing them fundamentally. And, you know, I tried to go back and I did it for two weeks as a test run. And my therapist talked to my GI doctor, talk to my surgeon, and I got sort of a second intervention and they said, “Look, we didn’t get you better to send you right back into what got you sick in the first place.”- So I’m no longer practicing law.It doesn’t work anymore. I still help people, like pro bono, sometimes giving them advice and things like that. But now I write, and I do really what I did when I got out of college. And I’m, I’m fortunate enough that there’s no immediate demand for me to get back to that I sort of did well enough, and I’m in a good enough position to have recovery be my focus. But I had to really practice radical acceptance to come to terms with a whole new life for myself that my sleep patterns are completely different. My you know, it takes me 12 hours of trying to get six hours of sleep.

I used to lift weights and do all these things before and that was very humbling, to not, you know, be able to do that. And I write a lot and I do a lot of stuff. But like, during this COVID, I haven’t been anywhere since Valentine’s Day. I was having some procedures, which are stellate ganglion blocks. I don’t know if I’ve heard you talk about that on here before but it’s a it’s a, it’s a parasympathetic nerve block.

There’s gonna be doctors and nurses being like, “Not saying that, right…”- But it’s a nerve block. It’s a nerve block. And it, it treats it used to treat traumatic spinal injuries. And then a doctor started using it for severe menopause. I didn’t know how bad menopause could get. For some women, it can be debilitating, and give them this block. And there’s one woman said, By the way, my PTSD, I guess she was a trauma of a domestic abuse survivor. She said, it’s gotten like 50% better.

And so he called his other buddy who was a doctor for now he was a Navy Seal and a doctor and said, You ought to give this to your guys and see what it does for them. And 60 minutes ran a story about it. And it’s kind of the hot new thing, but my anesthesiologist gives me a shot in the neck. And I go to sleep, and I don’t drink. And I don’t feel so pessimistic anymore. i All these things change. And so it’s really experimental. We had to fight with, we’re still fighting with insurance companies. And the Department of Defense is doing a thing. And so that’s really what my life is, right?

Talk doing stuff like this. And 12-step recovery, sobriety stuff is a lot of my life, obviously, because if I, you know, I think most people who listen to this will understand the impact of I started drinking again. One or two drinks might cause me to go septic or cause real meltdown in my body. And so I’ve got to stay on top of that. And I focus on that, but you know, I can’t sit at the desk for 14 hours and do legal writing and research. I can’t have a two week trial. That’s not I mean, I could do one, maybe, but at what cost? And, you know, nobody can pay me a retainer to have me start throwing up and spasming on the floor, if it starts to go wrong, and my wife would, you know, if I survived it, my wife would kill me. So that’s sort of what it looks like now is it takes it’s a full time job. Staying Alive, essentially, is one way to put it.

Kali Dayton 53:44
And not just physically but now psychologically.

Spencer Freeman 53:46
Right? That’s the hardest part that’s been by far the hardest is that is getting to a point where I felt comfortable enough telling people I hallucinate, I disassociate, I have nightmares that don’t feel like nightmares. Because I, I was ashamed. And I felt guilty. Because I had been given such an opportunity to live again, you know. The girl across the hall from me was 27, with liver failure, and family members were sneaking her and alcohol. And she got the order where you’re not allowed to have anybody come see you. And then she died.

And they brought her by my room, and they stopped. And they said, If you keep it up, this is what will happen to you. And she was gone. And so, um, that that sounds particularly harsh. But, you know, that’s one of the things that helped save my life. And so I had to understand that I had to fundamentally change all of the things I did in my life, to make sure that I didn’t put myself in a situation where the idea of drinking sounded like a good one.

Kali Dayton 54:57
But extra trauma doesn’t help that that scenario or just kind of add some more barriers?

Spencer Freeman 55:04
I guess I don’t know that one’s one I sort of think was the right thing at the right time sounds. It sounds terribly shocking. And it’s horrible for her and her family. But man that stuck with me. That really stuck with me. 27 years old.

Kali Dayton 55:21
Yep. And I think all of our ICU nurses and doctors and anyone in the ICU we see it way too much. And I personally the your diagnosis necrotizing, pancreatitis, and alcohol withdrawal and septic pancreatitis, that all makes me shudder. Because, yep, that’s when we end up doing massive fluid resuscitation, open abdomens, and, yes, sedation and the recovery is terrible, and the delirium is awful. And it is heartbreaking. And usually, it’s with younger people.

So I’m so glad that you’ve made it out, and that you’re willing to share with us this incredible insight, but it also is very vulnerable. I’m so grateful to survivors that are willing to share and I, I know that what you’ve shared, is going to help survivors too. There’s a lot of validation and relief. I think that comes to them when they hear that they are not the only ones.

You mentioned that no one talked to you about PTSD that talked about some of the physical debilitation and not drinking again, as you were leaving the hospital. But I think because we don’t understand what’s to come, we don’t prepare patients for what’s to come. So anytime a patient’s had delirium, I tried to explain. You may have cognitive deficits, your brain may not work the same for a while or in the long term. But you may have PTSD. And you talked about the Vanderbilt support group, what does that meant to you? And how has it helped you?

Spencer Freeman 56:48
Oh, it’s it, I given up hope that I would find people like me, you know, I had, I had read how rare rare it is for people to survive comas that are more than a week or two in when they do they’re so profoundly verbally and cognitively diminished, that, you know, I just had, and I had gotten so many, “No’s”, or “Thank you, but we’re not interested”, or, “That’s not really what we do, you should try this person.” And then they’re retired. And it was just all coming to nothing.

And, and I didn’t know how to search. I didn’t know what it was called. So I had Google, but I didn’t know who to reach out to it’s like, you know, I try the way I would analogize it is, you know, people know certain legal principles or ideas. But if you were just sent out there in the world to figure out all your legal problems, and attorneys just sort of didn’t want your case or would never tell you anything. You might not ever find your solution where if you talk to an attorney who was interested and understood, they could give you an answer in 15 minutes, or tell you who’s doing it, who’s working on it.

And so I had really given up hope. And I told my doctor, my surgeon in Charleston, I said, “The thing about being an alcoholic is so wonderful is you get this built in community of people that say to you, ‘me too’, you know.” That’s why I relate to this “Me too” movement so much. Because I know what it’s like for someone to validate you on something you’re embarrassed about but wasn’t your fault.

But then you don’t know when you question yourself and then all of that stuff for me to have another alcoholic say to me, I drink just like that. I did, I withdrew. I did you know, I was a butthead. It’s okay. You just don’t do that anymore. And I’ll teach you how to apologize and how to be sober and more importantly, how to be happy about being sober. And I just sort of thought, I’m so fortunate to have that in my addiction, that to ask for it in whatever this thing is, is just being selfish, just being greedy.

And then when I got it, when I heard people, for the first time, say to me, “Oh, I had those memories that were wild. I thought I was like, in the 15th century, or I thought I was being attacked by the furniture. Or I had a nurse that I thought was harvesting my organs.” And you know, just this awful stuff- And it was a nurse trying to give him a bath. And so, you know, to hear another person say “Yeah, me too”.

And to then be feel comfortable enough to share that was life changing. The same thing about finding your podcast. Hearing medical professionals engage this and say, “These are the things we do well, let’s do more of it. These are the things we don’t do that we should try. And this is what we do that we shouldn’t be doing anymore.”

And that’s so validating and provides so much optimism for me that it has Um, my wife says, I’m like, you know, a kid in an arcade. That all of a sudden is like, I’m back now. She’s like, it’s like the first few months of you’re going to 12-step recovery, you’re just like, you just won’t use so talking so fast, and I can’t keep up with you. And she’s like, “you’re saying all these things in Latin, and I can’t follow. And you know, I don’t read and write Latin like you do. ”

And so it feels very, I don’t want to say “miraculous”, but it feels very numinous. It feels very magical. To hear someone else another person tell you, they had the same experience when you know, that when you’ve heard so many times that you’re either “mis-remembering it”, or you’re being “deceitful”-, and by people with white and blue coats on.

And that’s very scary, because those people are the magicians. And they’re the ones who have all the power. And they are so wonderful and great. But it’s a an uphill battle that they’re fighting. And I’ve always felt the better patient I am, the better care I get. And if I go and read what you guys read and write, if I read the books that you learn from. If I go and get the peer to peer support that I need, then when I come back to you, I’ve done my part. And it helps with my guilt and my shame to be around these people. In the you know, the Vanderbilt ICU, delirium takes group there.

These doctors that are just like you that say, you know, “This is a thing”. Now you’ve got these COVID people that are basically an ICU delirium chambers. It’s like, they don’t get to see their family, they’re isolated, because no one wants to get what they have, we don’t fully understand that condition. So we can’t treat it as best we would like. And, you know, it requires sedation and ventilation, and all of these things, and they’re going to come out, and I don’t know that people are going to say to them, “you need CBT. You know, you need some a therapist to talk to you into hear you. Not because you’re defective, but because you deserve it.”

And that’s what it feels like, I start to feel like I deserve this help now. As opposed to just an alcoholic, who’s terminal. That’s what’s happened. I’ve changed. I’m not, you know, a former drunk trial lawyer, who, who took for granted his blessings. Now, I’m that person and this person who will be vulnerable about their mistakes, who will be honest about how they got better, and how they accepted help, and be grateful to these medical practitioners, who often put their own lives on hold, to fix other people’s and at their own risk at their own peril. And I get to be both of those people now. And I, I think that the suicide rates with this are high for a reason, is because it’s hard to be both of those people, if you’re never given the chance to be the second one.

Kali Dayton 1:03:15
And now you get to be an advocate for everyone that suffered before you and those that will suffer after you. And I think especially the COVID generation will change the attention that we have to post ICU PTS, we’re going to have a lot of people coming out of COVID. ICU is asking, “What happened to me what happened to my brain? What did I experience? What am I still experiencing?”

And so you are going to be a sounding voice to bring clarity to the medical community in the ICU, medical community outside of the ICU. And the masses of survivors that are going to be asking these questions. And I think good can come of anything, I think one of the good that will kind of COVID is that we will start to really have pressure to recognize, prevent and treat delirium, and then have resources readily available for those that have experienced it and suffer from it years after. So thank you so much for sharing. And maybe we’ll have your your contact information for those that want to reach out and also the resources for Vanderbilt.

Spencer Freeman 1:04:19
That’d be great. I’ll give it to you all, I would love to hear from people. And I think that finding me, you know, is is such a healing tool. And so anybody that wanted to reach out to me, you know, night or day I’d be happy to be available and with all the like social change that’s going on. I remember thinking and no way comparing myself to this at all, because I know people who have been through way as crazy as it sounds. I know people who’ve been through way crazier things than me, and doctors and nurses who are out there, risking their lives to make this better for people they don’t know.

And I’m a tiny, tiny part of it. But I remember seeing a video recently of Emmett Till’s mother at the funeral. And she’s over that casket, and it’s an open casket. And she’s saying, the world needs to see what they did to my boy. And I thought, “I don’t think that this was a situation that was intentionally inflicted on anyone like that. It’s not the result of hatred, in fact, is the result of the opposite of hatred.”

Kali Dayton 1:05:32
Right.

Spencer Freeman 1:05:33
But the world needs to see what happens to people that go through this medicine stuff. And I’m not talking about just the result of malpractice, or just the results of uninformed medicine. I’m talking about the results of best practices, and hard work that still like in my situation, create problems that has to be dealt with and acknowledged, and people can reach out to me anytime.

You know, it’s Dr. Ely and Dr. Jackson at Vanderbilt, Dr. Lesson-green, and there’s just a bunch of them in this, this post ICU care syndrome group. And there’s, you know, almost 40 of us, 35 of us, we’re all available. I’m here anytime. And as far as you know, in this podcast.

Yeah, this is, I am so floored by you, and wish, you know, I could give fly out there and give you a hug. Start moving packages for you. I mean, anything like I could do this is this is so touching. That you’re doing this in your free time, and that other nurses and doctors are on you’re talking about this. And you’re still working, being a mom, doing all this other stuff. And I think, yeah, because that’s what nurses do. That’s exactly what nurses do. And I’m, I’m so grateful. So if I can be an example of how not to live, if you’re, if you’re an addict, and you need help you to ask for it, because you deserve it. And if I can be an example of best practices, and some of the things not to do with a patient that would make all of this worthwhile.

Kali Dayton 1:07:13
I think you have a lot of work ahead of you. And there will be a lot of people reaching out for support from you. And thanks for being willing to be that pillar of strength. And this podcast wouldn’t be possible without people like you that are willing to share such hard and intimate things with the world. And I’m so grateful for you. Thanks for being willing to share these things with us and we’ll be in touch.

Spencer Freeman 1:07:34
Of course I look forward to it. Thank you so much.
Transcribed by https://otter.ai

 

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