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As a nurse of 22 years, Lynn had been taught that patients were comfortably sleeping while sedated in medically-induced comas. She shares the horrific realities she suffered while intubated and sedated and the months of playing “Truth or Propofol?” after discharge.

 

Episode Transcription

Kali Dayton 0:05
I recently had fascinating interactions online with nurses that had dedicated themselves to entertaining ICU nurses with jokes and memes. I personally love using humor to unite and push through hard things. So these kinds of pages are usually fun for me.

Unfortunately, many of the memes on some of these pages focus on keeping patients as unresponsive as possible with sedation. I believe I was being mentioned by concerned clinicians and the comments, and I caught the attention of one particular meme creator.

I then became the inspiration for many of their memes and videos with my license number and information shared as an invitation to report me to the Board of Nursing for advocating for, quote, unsafe practices, and a quote this content creator had 10s of 1000s of followers and many nurses engaging in discussions about how delirium is not a big deal and responded to ICU survivors comments with quote, “okay, but did you die?” Unquote. before deleting their comments?

It was alarming to see comments from other nurses on these memes saying things like quote, make it snow but always chart arrests of negative two winky face on a quote. It was fascinating to gain the insights this anonymous account was providing into the beliefs and gang mentality behind this culture and even practices. I realized that once you sifted through the apathy, callous and tough exterior, there seemed to be a lot of trauma, frustration, ignorance and fear that was influencing these discussions, beliefs and memes.

It also helped make sense why wonderful nurses like April and episode 156 left the ICU due to this kind of bullying, toxic culture and inhumane practices from other nurses. I do not believe these vocal individuals represent the majority of ICU nurses. But it is amazing to see how large and involve with their following is and how much attention memes that advocate for benzodiazepines in response to a patient lifting a finger can get on my page.

A follower said, quote, “This kind of talk is so common at work though, like no one thinks it’s weird. Yet it’s so messed up to speak this way. These are people it is infuriating. And it tells you everything that a student is the one who said something and reported them. The unit culture probably supports this kind of talk,” unquote.

I asked my audience if they felt that social media influences this culture of joking about sedation and delirium. 94% said, Yes, I asked. Do you think these jokes influenced bedside practices? 90% said, Yes, I said that I didn’t believe most people truly know that they’re joking about increasing suffering and death. I asked if they did believe people knew what they were joking about. 8% said, They totally know. 46% said they don’t really know. And 47% said, they probably have some understanding, and quote, without wanting to inflame the controversy and inspire these pages to make more memes about me.

I did feel compelled to share at least a few dozen studies supporting the dangers of sedation and mobility. And that early mobility and the ABCDEF bundle is in fact, evidence based. It relieved me to see that after that many of the most toxic memes about sedation disappeared off of these pages. It reaffirmed my hope that this culture of joking about dehumanizing patients and lethal interventions are really made in ignorance.

At the same time, it is terrifying to consider that these seasoned and self proclaimed expert nurses that have traveled throughout the country and practice for many years have been absolutely uninformed and unaware of the research, patient perspective and reality of the very medications that they use continually without caution on most of their patients, to see them be terrified of early mobility and believe that it is unsafe and unfeasible.

As they’ve never done it exposes how behind our ICU community still is the fact that this group was reporting me to the AACN This is the American Association of critical care nurses for advocating for early mobility shows how much work we still have to do to really penetrate the mainstream ICU nursing community.

I invited the most verbal meme creator nurse to come on the podcast and share their thoughts, insights and concerns. They passionately declined. Yet for a moment, I was excited by the prospect of having the opportunity to really dive deep into these myths, beer and culture. If you know anyone that shares their perspective that is willing to come on the podcast, and help us sift through what is really going on, please let me know. I think it could be a really productive and insightful episode. Unfortunately, the most powerful way to have a shift in perspective is to have personal experience.

This episode, we’re going to get personal with Lynn, an incredible nurse that is eager to break down the veil of oblivion and share with us her side of being intubated and sedated. Lynn, thank you so much for coming on the podcast. Can you introduce yourself to us?

Lynn Nordhus, RN 5:59
Yes, my name is Lynn Nordhus. And I am a nurse, a wife, a mother, I’ve been a nurse for 21 years, sorry, 22 years now. And I am very passionate about nursing. And I love your podcast. When I found it. It was like, due to like my experience of being intubated.

It was just like eye opening, it was therapeutic for me, that other people had been through what I’ve been through. And it was hard. Like, before I found the podcast, it was hard to find anything, like as far as support, and especially for younger patients, after ICU. So I really learned a lot by listening to you. And, you know, I grew and was able to like, move through some of the emotional trauma and, and those kinds of things by listening and understanding other people’s stories and knowing that I wasn’t alone.

Kali Dayton 7:07
Wow. And I’ve I’ve heard that from other survivors as well. I mean, I started this podcast very focused on clinicians. And I think I still had a lot to learn about the survivor perspective, and I didn’t appreciate how much survivors languish out there by themselves with no validation.

So I’m so glad that this has also reached survivors and helping bring some of that understanding and clarity and healing and validation. Prior to becoming an ICU patient yourself as a nurse, what was your understanding of perception of the patient experience, while in a medically induced coma?

Lynn Nordhus, RN 7:42
My perception was that they were sleeping, they were comfortable, we were keeping them comfortable. And then it was unnecessary part of being on a ventilator. Now most of my nursing experience is on the floor, like on a telemetry unit, spent very little time inside the ICU. But that was my perspective,

Kali Dayton 8:05
That’s shared in a lot of our ICU is even for those that have practice for decades. What led you to become an ICU patient?

Lynn Nordhus, RN 8:15
I, it’s kind of a crazy story. It’s like a bomb went off in my life. December of 2021, I started to cough blood. And I, you know, it was 51 years old. I felt like I was the healthiest. I had been in a long time I was exercising regularly for like the last five years, dropped 70 pounds. I was like, beginning my career that I wanted to do after my children had left the house. So it was like you’re just doing on the top of the world. And then I cough blood. And that was pretty shocking.

So I went to the doctor. And then of course there’s, you know, the chest X ray and then a CAT scan. And then they said it looks as if you have lung cancer. And I was like how could that be? Like I have no risk factors. And so then, you know, I started going through the diagnostic process. And every single test started kept pointing towards cancer and it was a huge shock like lung cancer. And at that time, I’ve like diagnosed stage three A and that’s pretty serious. Like we were talking palliative care. And yeah, it was just mind blowing. It was just crazy.

So after I’d had gotten a needle biopsy and bronchoscopy biopsies, and they said yes, you came back with no carcinoma. I was devastated. I knew what that meant, you know as far as prognosis was not good. And then I started having complications from the diagnostic process. So I had, you know, a pneumo needed a chest tube that resolved and then I started to bleed more. And so I came to my local hospital. And we did a bronchoscopy.

And when the doctor tried to make it better, it got worse. So they had to intubate me. And then they shipped me from I work in a er, and was patient and work in a local community hospital. So they shipped me to a higher level of care, intubated, so I was intubated. without any preparation. It didn’t even occur to me that that might happen. And then shipped to an unfamiliar place. So it was really confusing, because I have like memories of seeing people, and not understanding why I didn’t know anybody, because my knowledge was that I was at my hospital with my colleagues, my physicians, my nurses that I’ve known for years, and trust.

And so I was trying to figure out who’s looking at me, who’s looking at me with those concerned eyes, you know, masked, and those kinds of things. And I could tell that I was in a pretty serious condition by how they were talking. And so like, the physician was telling the nurse, don’t turn me keep me in one position, that they’re trying to prevent the bleeding that we’re only venting one long.

So these are kinds of things that were, I could hear. And then I was like, Oh, my gosh. So like, the way the memories are of this particular time, especially in the beginning was like, opening your eyes and seeing things and hearing some things. And then the darkness comes so and then I’m left sort of with thoughts. And I’m like, “Oh, my gosh, I’m critically ill. I’m dying. Where’s my family?” So there’s the beginning of a lot to lots of questions.

Kali Dayton 12:03
You can’t ask them.

Lynn Nordhus, RN 12:05
I can’t ask them. I don’t understand why nobody, I can’t communicate to anybody else. I think I didn’t even really understand I was intubated. I just didn’t know what was happening. I just have glimpses of what I think is reality. But then also the, the beginning dreams or are, they can’t be real. So I have memories of other things.

I have memories of, of thinking I was in. This was. So it was during COVID search time. And I thought I was in the parking lot of the hospital where we had set up like a emergency area, just in case we had gotten such a big surge. So I thought I was out there. And I had no call light. And I was trying to get a hold of everybody I could think of because the colleagues aren’t functioning for the people in the parking lot. So it was like half working and half patient.

Kali Dayton 13:02
Like you’re trying to make sense of the isolation you’re experiencing.

Lynn Nordhus, RN 13:06
Yeah, I think my brain was trying to make sense of whatever was going on. And then I was going from, like, reality to dreaming. And lots of memories of things that can’t be true. Mixed in with things that I think are true. Does that make sense? Yeah,

Kali Dayton 13:26
I mean, as far as I’ve never experienced that myself. But I think we’ve all experienced a little glimpse into what it’s like to have a really vivid dream, and then spend the rest of the day like reminding ourselves that it was just a dream.

Lynn Nordhus, RN 13:38
Yeah, that’s very much that’s about as closest as a description can come to what I experienced. So it was, and then I have some very scary, horrific kinds of dreams where, like, I believe that I remember being intubated. And I’m moving like, I’m shaking my head, and someone’s telling me to stay still. But I’m making it worse for myself.

And I’m trying to tell them, this is gonna sound crazy, but I was trying to tell them, you can’t intubate me without my permission. Where is you haven’t given me informed consent. We haven’t talked about the risks on the benefits, where’s my family, what’s happening, and then I just remember them, like sedating me. And then me being angry that they were sedating me.

So I don’t know where that whole dream came from. But it’s definitely part of what feels very real. So I don’t know if I was partially alert before they intubated me or what happened during those times.

Kali Dayton 14:46
That all sounds like it could have happened. Right? I mean, it’s just, and I think, you know, I’m looking at this from the clinician perspective and the bedside. And I’m sure I’ve assumed too, I mean, you just datum and then you assume that they’re not aware, the perception is often that it’s better. They’re not aware. It’s better. They don’t know what’s going on. But it sounds like you not knowing what was going on, you’re not being involved in the process was part of your part of the torture.

Lynn Nordhus, RN 15:14
Yeah, I think it was all like part of the shock, too. And then my, like, just my brain and me trying to, like, really grasp any kind of reality that I could. And so there was lots of those kinds of things in the very beginning, where I’m trying to figure out where I’m at. My brain is putting ideas in my head, trying to help me cope with the trauma of what’s happening, and not knowing what’s happening.

And so it was, and then I have some memories that are really good. So it was at the very beginning, it was the probably the first day that I was at the other ICU. And my son was there. And they let me be awake. And the nurse was gave me a whiteboard. And I just started writing. I just started writing everything I could think of, I was looking at my son, and I was thinking, you might I don’t know how sick I am, like, you might not ever see him again.

And I just like, wrote everything I possibly could to him. And you know about how I felt how proud I was of him and my family because I was just so scared. And it was it was a really traumatic time. And then, and then I remember feeling like I was going back to sleep again. And I was like, “no, no, no, no, I don’t want to I don’t want to go back to sleep. I want to stay awake.” And then darkness again. And then that’s probably the last clear memory I have that I know was real because he was there with me. So there was a lot of I don’t know why. I remember that. So specifically why I was so awake then. And then not other times.

Kali Dayton 17:09
It’s really powerful to get patient perspective of what was probably perceived as an awakening trial. And I would imagine that’s a good awakening trial, someone’s awake enough to riding on a clipboard. That’s what we want. Now, it’s unclear why they have resumed sedation, maybe if you are hypoxic and the oxygen consumption from ready but you know in the wake and walk in I see you there is a bone marrow transplant unit in the hospital, very high acuity one pulmonary hemorrhage gene was a very common occurrence and diagnosis that we cared for.

Course, it’s a spectrum of severity. But bleeding, the lungs did not necessitate sedation. So I think I feel like if I would invite everyone to consider if someone’s awake, and writing on a clipboard, and oxygenating through that, continue to ask is there an indication for sedation? Ask yourself ask your colleagues, right do we is are the risks of today in this patient worth?

The whatever possible benefits, right? If they’re oxygenating, if they’re fine on awake, and then talk to the patient, tell him what’s going on. And if there is an indication, you needed to know like, Hey, you’re when you lift a finger, your SATs go down to the 70s we’re going to have to sedate you to minimize that oxygen consumption.

But you will receive no communication it was probably not expected or I mean, it’s great that they gave you a whiteboard, though, that’s a great sign of humanity of seeing you as who you are allowing you to connect with your family. That’s some of the prime elements of the bundle. It’s just unfortunate that that was seen as a temporary thing.

And when we use words like trial interruption vacation when it comes to sedation, this is what happened. Well, you got you got your five minutes of communication like it really feels like you’re in solitary confinement. And then you get some brief family visitation and you have to go back into your, your lonely jail cell.

Lynn Nordhus, RN 19:11
And that’s what a lot of the memories in the very beginning were of that. And then you know, of being awake and my husband being there. And then the dreams sort of get weird, because I thought he wrote me a note on my gown. I was desperate to find that gown when I was discharging, by the way because I thought this was real. So I thought he took a Sharpie and wrote on my gown that I was going to be okay. And that they were here and he loves me. And you know, I don’t he never wrote that note, but I That’s how my brain interpreted whatever was happening.

So saying that out loud. Maybe. Maybe. I mean, he said lots of he talked lots to me before and I guess I thought he wrote it down. But maybe he was just talking to me But those were really important moments to me. And then unfortunately, my husband got COVID During that time, and so I was isolated so that I was isolated for believe it was somewhere around 10 days, and I was intubated for close to 15 days. Due to lots of complications, continued bleeding, I’d gotten a pulmonary embolism. The bleeding was like in my bronchus, intermedius, like, on the right. So pretty high. So it’s causing lots of issues. I got pneumonia.

The I had some left sided weakness, they thought they call a code stroke. And that’s when they found I had or had two Mets to my brain in the prior prior lobe. So they when they found that they were, they were like, well, that’s probably the cause, which actually doesn’t make much sense. But anyways, we’ll talk about that later. So I gave them kind of a hard time. Yeah, medically.

Kali Dayton 21:08
Alright. And then what was, I mean, you were also having delirium on top of it. So it looks like a weakness can also sometimes when you can’t coordinate motor planning and things like that, it can be really confusing neurological assessment as well. How long did you have delirium even after the sedation was off? Do you know?

Speaker 1 21:29
Well, they had to bridge me with Precedex So because I was just I guess I was, I know in my chart everywhere, it says agitated, agitated, agitated. And I don’t remember a lot of those times. But they did have to do that. And I was pretty confused. I’d say for days afterwards, until my daughter got there. And then things started to get clearer, like having my family present was huge for me, I was still pretty confused.

Speaker 1 22:04
And I had a lot of like, still was having a lot of like, like visual hallucinations. So when my daughter was there, I thought there was these, like, beautiful birds that were living outside my window. And there that didn’t exist. But I told her like, you can only see them at night. And then during the day, they’re gone. So that’s why you don’t see them. And I do. I had like lots of different. Strange, I woke up thinking certain things were real. So I thought that I had already gone to rehab. And so when they end that I didn’t, and I didn’t like it there.

Speaker 1 22:42
So I had a whole experience in my head of going to a rehab. And it was not suitable. Like, as far as I concerned, it was like bad conditioning. I wasn’t getting care. They were ignoring me. And I thought they’re holding me captive. And I was trying to call my husband and my son to come get me, like, meet me outside. This is not the place for me. So when they started talking about sending me to rehab, I kept saying, “No, I’m not going there. Like I’ve already been there.” And it was terrible. I’m not going there. Oh, my gosh, I know. And my family didn’t understand because the rehab they were sending me was some place that I really, really have a lot of respect for. So it was just,

Kali Dayton 23:28
It was very like…. in your mind it…. You’d already been there. And it all made sense to you. That all made sense to me. And how mortified I mean, you’re so weak, you’re with a bunch of strangers, you’re so vulnerable. And you’ve been voiceless now for weeks. And now you are being forced to go to this place that you feel like has already mistreated you.

Lynn Nordhus, RN 23:52
Yeah, that has lots of moments of me trying to advocate for myself thinking that something was real. And then, like, it’s not or, you know, it’s part of my delusion, and part real. Like, I thought that none of the nurses wanted to take care of me anymore, because my husband had posted something on Facebook about. I wasn’t receiving the kind of care that I would have given to one of my patients.

And so I thought none of the nurses would take care of me. And they all hated me now. And I was really angry with him. And one of the very first interactions I had with him after being intubated was via zoom. And I was telling him you need to go take that post down right now and apologize because these nurses don’t want to take care of me. So I don’t know what you were talking about. He had no idea what I was talking about.

And I don’t know if I heard like staffing shortages kinds of things or, or any of those things, but it was very clear to me that no one wanted to take care of me they didn’t have enough staff and then I have a hallucination of my, one of my nurse colleagues being there saying, “I’ll take care of you. These other nurses won’t take care of you.”

Kali Dayton 25:07
You were looking for her.

Lynn Nordhus, RN 25:09
I was looking for her, I was looking for all kinds of people that weren’t there. And I couldn’t understand why I was with these people, I don’t know. And like things must have happened. So I had several bronchoscopy is when I was there. And one of my very clear, like delusional memories I suppose. I don’t know how much is real or, or delusion sometimes, is that they couldn’t find a respiratory therapist to attend.

So they couldn’t do my bronchoscopy. And so I was like, Well, you gotta call Jeff, you, I have his number. It’s in my cell phone, go get it, he’ll send someone down here. He’ll, you know, it’ll, there’ll be someone here. He’ll be here. If no one else can be here, kind of thing. So I don’t know, if those things happened. And then my brain went a next step further. But I’m trying to like, help myself. I’m trying to

Kali Dayton 26:05
You’re communicating with everyone around you. When in reality, you’re probably laying their eyes closed, intubated, lifeless.

Lynn Nordhus, RN 26:12
Yeah.

Kali Dayton 26:13
And you’re cognitively jumping into the conversations.

Lynn Nordhus, RN 26:16
Yeah, And then bringing some sort of, you know, of whatever I know, from my own hospital trying to bring it they’re like, oh, call this person call. So and so from, you know, here, whatever department, because that’s all I know. And that’s all I know, to advocate for myself, right. So I know some people said, “Wow, you probably look like Sleeping Beauty.” And I said, “Well, I may have looked like Sleeping Beauty, but I was at the Mad Hatter Tea Party.”

Like, it was just, it’s just like these memories are, there’s so many of them that are just on like continuous play. During this whole time, I felt like I experienced a whole different reality in my brain than what happened. And then some of the outside things leaked into my dreams. That and then I took them to other places.

Kali Dayton 27:15
And that’s so much of what survivors are saying they’re like that this is not sleep and that it’s it’s you live a whole nother life that you never really lived.

Lynn Nordhus, RN 27:27
Yeah, it’s not sleep. And it continued for a really long time. So the inability to understand like what was real and not real. Like went on for a long time. Like, past when I went to rehab paths when I had come home. So much so that my family and I like call it a game. We call it “Truth or propofol”.

Kali Dayton 27:51
I’m laughing but it would be so frustrating for me, right? Like I just know that I’d be like, No, that happened. And at some point. So I have a history of sleepwalking when I was a teenager. And I would beat the horses I would drive I would go to my parents room have full conversations and it was really scary for everybody. And they would try to tell me the next day, this is what you did. And I’m like, “I don’t remember that.”

And I asked him to stop telling me because it was weirding me out because I’m like, “I do not remember that”. But that happened and it’s like the opposite for you. You’re like, I remember this happening. And the time you know, you’re crazy. It didn’t happen. Yeah. Or it didn’t happen that way. That’d be so frustrating and unsettling. It’s and how do you trust yourself?

Lynn Nordhus, RN 29:44
Yes, especially like during sleep that’s when it tends to be the biggest problem you know, for me anyways still to this day. Going to sleep sometimes is it is some disturbing like just as far as waking up in the middle of the night where I’m, “what’s going on?” “Oh, you’re at home kind of thing.”

It has a different feeling to it. Now, you know, like when you wake up and you don’t know where you are, that happens a lot to me. To this day it less than it used to. So it’s gotten better. But it’s, it really took a long time and a lot of help from, like my therapist and my nursing friends, especially the ones that know about ICU delirium and believe about its effects and after, because even after even when I went to rehab after my hospitalization, and they tested my cognitive level, and it was in the 10th percentile for my age group.

I couldn’t perform a simple puzzle, like a six piece puzzle. I couldn’t put it together. I couldn’t draw the dementia clock. I couldn’t. I couldn’t I knew and I just cried. I was like, What is wrong with me. And thank goodness, I had some really good nursing friends that were saying, “You have ICU delirium. This is from propofol and being intubated. It’s gonna get better just, you know, keep doing the therapy.”

Even the speech therapist, the outpatient one, kept trying to bling, my will, she would kept telling me that the reason why I cognitive problems was because of my metastasis in my brain, but those were in the parietal lobe. So yes, for higher level of functioning, but for performing a simple puzzle, or, you know, some of the left sided weakness that I had, it just didn’t make sense.

Kali Dayton 31:46
And they were there before you were ever intubated, and you were functioning fine. Yeah, suddenly happen from those meds within two weeks.

Lynn Nordhus, RN 31:54
And they were very small, the six millimeters and four millimeters. And, you know, even it was just, I don’t know, just a lack of awareness of why they were treating me and I finally stopped. I was just like, I’m not going to try to tell them that this is not from that.

Kali Dayton 32:13
Yeah, as a speech therapist, how do you really treat post ICU syndrome if you don’t understand what happened in the ICU? And what delirium actually does? That’s, and thank goodness, you had knowledgeable friends. So many survivors come out with this kind of scenario, this kind of presentation. And so many question marks?

Like, can you I just can’t even imagine not knowing why is it frustrating enough that this is happening, that this is your reality, but then I have no explanation for it would just drive me insane, and how many of our survivors are left alone without any kind of validation or like guidance, or hope that this is going to recover? Right, that this is where you’re at right now, your brain is still recovering and healing from it.

And also some realistic expectations. I think that’s part of the frustration if they expect to go right back to work. No one’s there saying “You’ve had a brain injury, you may not be 100%, but you’re not going to still be at 20%. And next few months, you may get up to 80%,” or whatever, just some realistic expectations and timeline. How long did it take you to go back to work? I mean, you you had chemotherapy and all sorts of things to do, right?

Lynn Nordhus, RN 33:22
We should probably tie that up with both so. So during so I didn’t get let’s see. So I had my biopsies. We knew it was I know carcinoma by I found out on like New Year’s Eve. And then they’d sent it for genetic testing. And I got it I did while I was in rehab. So after my hospitalization, I was I was in the hospital from January 7 to the 27th. And then I went to rehab.

And in February, I found out that I have a genetic biomarker for my type of adenocarcinoma, and it’s called ALK. Positive. So that has a target. So I take what’s called an ALC inhibitor or a TKI. And I avoided chemotherapy. And within a couple months, you couldn’t see my Mets in my brain anymore. And, yeah, and to this net, and now, you can’t see any of that cancer. There’s no evidence of disease. For Yeah, that’s amazing. It’s incredible how far we’ve come in oncology. I mean, this is now become a treatable disease.

It’s not curable, but it’s treatable, and we still have a long way to go because at some point your body like or your cancer gets smart and it works around that TKI but there’s pee People who’ve been living with this out positive lung cancer for 16 years. And so the median age is getting longer and longer. Right now it’s around seven years for survival. So I’m very fortunate.

Kali Dayton 35:15
Congrats!

Speaker 1 35:17
Yeah, thank you. It’s very common for non smokers to get this type of lung cancer, or I mean of lung cancer patients, typically non cancer, non smokers get this type.

Kali Dayton 35:31
So you were able to leave the ICU and not have to jump into the whole oncology world as intensely as others. You still had post ICU syndrome to deal with after being intubated for 15 days?

Lynn Nordhus, RN 35:42
Yeah, And I had a second, I have a second lung cancer, and that’s a salivary gland type. Like a mu coital can’t know Muco pearloid is what it’s called. But that’s the tumor that was in my right bronchus that caused all the problems. So that problem, child, that big tumor is what made me cough blood and how we found my other type of cancer, which the salivary gland cancer that was in my right bronchus is less likely to met and very slow growing.

But the only the only treatment for that is surgical removal. But because it’s in my right bronchus, we can’t remove that, unless I do an entire laminectomy on the right. So option, but so instead, while I was intubated, they did a lot of debulking. And then I did radiation for six weeks of radiation for that cancer. So So I did do some radiation, but I did not ever do chemo. Wow.

Kali Dayton 36:48
That’s still a difficult and crazy recovery.

Lynn Nordhus, RN 36:52
Oh, yeah. It took me months. I didn’t go back to work until August. So I was out for? I don’t know, six months. Wow, seven.

Kali Dayton 37:01
And when did you start feeling cognitively intact? How long did that take?

Lynn Nordhus, RN 37:06
Will took, I’d say it took until I started sleeping normally. And that took about a month and a half, two months to actually sleep normal periods of time. So sleeping was hard afterwards, I could only sleep. I think I slept for days when they first excavated me because I don’t remember anything. And then, except for the glimpses but and then I remember lots of people trying to work with me saying, “Oh, I know you’re just tired, but sit up and try to swallow this kinds of things.”

And so I know I was exhausted. But then this weird sleep came where I would like fall asleep at like 5pm and wake up at like 10pm and then be awake for a significant amount of time. So I think sleep, having my sleep pattern normal was the first thing. I think, you know, as far as being fully oriented, I was probably pretty oriented.

By the time I got to rehab as far as I knew where I was who I was all that good stuff by the time I got there. But just higher level of thinking was harder. So just like trying to figure something out, like, like I couldn’t have, they didn’t, I couldn’t have driven then I couldn’t have followed a recipe. I couldn’t have done anything more complicated than that. Than just ADLs. And plus, I was exhausted.

Kali Dayton 38:35
Right, you had lost so much muscle mass and your body has been through so much. And there’s hypoactive delirium, you know, this is just, I can only imagine what it’s like. But the ICU side, we don’t get to see that part. So the ironic thing is that we’re give sedation, believing that “we’re giving patients peaceful sleep”.

When reality we’re disrupting the brain activity so severely that there is no real sleep happening while that medication is running, and until it metabolizes out of the body. But I think what I especially underestimate is how much we disrupt the sleep for months after discharge. This still is preventing you from whether it’s from the trauma or just the brain disruption. You’re still not back to normal sleeping pattern, right?

Lynn Nordhus, RN 39:22
Normal sleeping pattern came months later.

Kali Dayton 39:27
So wild.

Lynn Nordhus, RN 39:28
Yeah. And I think it was a combination of things right. Like, like you said the trauma was one of them was probably a big part of it. And then, you know, just I don’t know just like having your sleep cycle so disrupted you can’t get back to normal was was really, really hard. And then it just like cycles.

Now you’re sleep deprived again, and you’re trying to like recover and the physical recovery like I couldn’t believe how we I actually was. So like I had said, In the beginning, like I was running, cycling, lifting weights and doing those, those kinds of things.

And after being intubated, just for a couple of weeks and being in bed for probably three weeks total. I couldn’t dangle. They had to hold me up, had no trunk support at all. When they first tried to get me up. And yeah, and then, you know, I couldn’t walk at all. couldn’t walk to the the first time I walked to the bathroom. After when I was already in, like in the regular room.

I was outside of the ICU. I was in the bathroom and the aide, then don’t get up. And I said, “I won’t. But will you go get me a washcloth?” So he hesitated. And then he’s like, “but you won’t get up, right?” And I said, “No, I won’t.” And so he went to go get me a washcloth.

And I, this is really embarrassing, but it’s just the way it was. I just tried to tilt so that I could wipe myself and I slid off the toilet onto the floor. And I was like, “Oh my gosh,” he came back in running. I think he could hear that I had fallen and I was like, “I am not on the floor right now. I did not fall.” And he’s like, “Yes, you did.” I’m like, “Oh, no. And now I’m a fall. Now I’m a fall. Now you have to write all….”

Kali Dayton 41:34
It was just from tilting, like how much of that is just our normal nature and ofin second, we’re potty trained as two year olds your whole life you just been like tilting a little bit. It just I interned imagine for myself trying to convince myself that I can’t tell the can’t shift isn’t my core is too weak to even maintain my own body weight, like you’re not even safe to sit it!

Lynn Nordhus, RN 41:54
I was not even safe to sit. I just didn’t know it. I was just…

Kali Dayton 41:59
You were still in delirium.

Lynn Nordhus, RN 42:00
I was still in delirium, there was a lot of weakness involved. It was surprising surprising to me. One of the biggest things as a nurse that really sticks out is that in those early days, I could not use the call light. I couldn’t physically get it or find it. And when I could, my hands were still really weak.

So pressing the call light was like such a huge task. It was so hard. And that like has really stuck with me. I was like, I’ve been teaching people to use call it for 20 years. And I can’t use it myself. I mean, just how scary is that? And I just felt very isolated to like, “Where where’s everybody? Like, why am I why am in this room all by myself?” And I can’t use a call light.

Kali Dayton 42:50
You’re so helpless.

Lynn Nordhus, RN 42:51
I was so helpless. It was, you know, I was trying to like, “How am I going to tell them I need to go to the bathroom?” Like, it’s just, you know, and then so here’s I don’t know if these two times go together. Because it’s still very blurry. But I noticed I had a virtual sitter, you know those amateurs, and and they’re new, they were new at the time at our hospital, or we were just getting them.

And so it was like, “Well, if I tried to throw my leg on the hospital rail, like on the bed row, they’ll probably think I’m trying to get out of bed and they’ll come get me.” And sure enough, it totally worked. It was able to like, throw a leg and wiggle around enough that they thought I was getting out of bed. I never made it to the rail, but I tried. And they were like, “Do you need help?” I’m like, “Yes, you need to go to the bathroom.” It’s just so it’s you’re so helpless.

Kali Dayton 43:48
Wow, you know, we we have this fall culture, which is going to be a whole nother episode focusing on how when we’re so focused on keeping patients in bed, strapped to the beds that don’t fall in the ICU at least that doesn’t mean we’ve kept them safe. From falls, we’ve set them up to fall on the floor and rehab l tack. And this is a perfect example.

And then the stress of you know, the senator calls the nurse and says “hey, they’re trying to get out of bed” and they come in running and panicked and disrupting everything instead of it’s like, “Okay, they have to the bathroom or that I know what they need. And I, I know that it’s okay, they’re safe,” and I can… not that you’re gonna delay going in, but it’s a different level of stress.

But when you’re now perceived as a patient trying to get out of bed, now it’s going to be more stressful, and they’re probably going to be less willing to move you because you’re a fall risk because you’re so impulsive. But really, you’re just desperate for help and to communicate.

Lynn Nordhus, RN 44:39
Right? I mean, who was going to leave me up in a chair. I mean, you know, and then who has time to sit with me if my family wasn’t allowed? So I totally get how, you know, you get into these situations with patients where you feel like they need to mobilize but they’re not safe to because we don’t have enough time to make sure they’re safe. And then that’s just a, you know, a cycle of weakness for the patient. Like, now they’re in bed longer because nobody will get them out of bed and then they just become progressively weaker.

Kali Dayton 45:12
You stay on the floors longer, LTACHs, SNFs- they’re full with your previous survivors, you can’t get them discharged home, you can’t get into the care facilities. Now it just everything adds up to the floors fill up, the ICUs stay full, ICUs can’t get the patients out. Like we perpetuate this pattern.

And with our staffing crisis, now we’ve, we’ve zapped all of our resources. So like, I tried to help hospitals understand that having a sitter in the ICU is going to play a part in preventing needing a sitter on the floor. And having a sitter helps avoid delirium, so and then avoid sedation so that patients can mobilize in the ICU, it’s going to decrease this whole scenario of having patients be so weak and so delirious that they’re sitting on the floor for far longer with less resources.

But right now, we just have everything really twisted and backwards. And we’re thinking that we’re keeping patients safe in the ICU, when we’re just making them more vulnerable after the ICU. How has this impacted your perception and your practice as a nurse?

Lynn Nordhus, RN 46:19
Well, I just, you just feel like I want to advocate for all of our ICU patients. Like I just want to talk to all of my medical friends about how important it is to get people off sedation as soon as possible. How life how life, disrupting ICU delirium is it is traumatizing, is just, it just took me so long to recover. I feel like I’m still working on it. Like as far as I’m still not back to the same person I was before.

And maybe I never will be not in the differences are small. But it just really wants me to I really want to let everyone know how important it is to prevent delirium. Like it is an actual, like extra diagnosis that I got that I didn’t need. On top of what I was already dealing with, you know, in it just you know, having to deal with that on top of, of stage four cancer is was just hugely debilitating.

And I just want everyone to know, just to prevent, try to prevent this, because it’s just, it’s just Gailey. I’m sorry, I’m just like, without words, I don’t even know. Like, I try to insert it every time that I is relevant, what to the classes that I teach, because now I’m a nurse educator. So it’s not at the bedside anymore. So it’s harder to advocate that way. But it’s, it’s pretty, it’s a big subject. And so it’s hard to just drop a few bits here in there. And so I think in the way that it’s changed me as a nurse is just It’s opened my eyes to the harm that we do, that we don’t realize that we’re doing.

Kali Dayton 48:30
That’s a hard thing to recognize as a clinician. It’s been hard for me to look back at my years of being a travel nurse and going with normal culture and practices. But what a hard way to realize that I mean, to be the patient to yourself, but your perspective is so valuable to say I’m a nurse, I understand the clinician perspective. I know how hard it isn’t there.

Here’s what I believed. But here’s the real reality of it. Thank you for educating nurses about this. I mean part of this, and thanks for being willing to share this here on the podcast. What kind of feedback have you gotten as you share this with your colleagues? Do they do you think they really understand or believe it when you try to tell them?

Lynn Nordhus, RN 49:08
Oh, I think they believe ICU delirium. I just don’t think that they and I think that it’s hard for them to really grasp the idea of patients being not sedated while being ventilated. I think that that is a really hard concept for a lot of my colleagues, not all of them. But they do understand ICU delirium, quite a few of them, which is validating, like I said, even the people that were treating me at rehab, really didn’t talk about it. It was my friends, my ICU nurse friends that really knew what was going on with me.

Kali Dayton 49:52
And thank goodness, I think if you only ever start sedation then try to take off later. And patients come out thrashing…

Lynn Nordhus, RN 50:02
right.

Kali Dayton 50:03
It’s constantly reinforced that patients cannot be awake on the ventilator, that they will always be thrashing, that the agitation is just for the endotracheal tube, it’s inhumane to leave them like that.

And what we’re really working towards is preventing that whole scenario, right preventing the true cause of it, which is oftentimes ICU delirium, but there’s so many causes that we just mask with sedation, but you have been awake, you were awake, you were writing and you were connecting with your son.

You know what it’s like, and you wanted to stay that way. I tried to beg to stay awake. But there was just, it was just auto set to just resuscitate you, because that was your break. That was your interruption. That was verification. And that was that that’s the only connection you got with your son.

Lynn Nordhus, RN 50:45
Yeah. And it was, it’s very clear to me memories of being awake and then starting to go to sleep again. Like sort of like the blackness is coming. And I’m saying no, no, no, no, no. Like, no. And I didn’t know I am I die. Why can I not see what’s happening? Like it was all so very confusing and terrifying.

Kali Dayton 51:11
As a nurse, I would imagine was like, “Okay, she needs a break.” Because we hear I mean, I’ve heard from people – revolutionists, that have had their patients awake during their shift and all the things. Then the next nurse comes on and the nurse says, “Okay, they need to sneak they need to sleep now. They need a break, they need a rest.” And they just go in and do it. So I’m sure it may not have even crossed their mind to say, “We’re going to re-sedate you again.” But yeah, that they that just sounds like a classic fit into like, “time’s up!”

Lynn Nordhus, RN 51:41
Yeah,

Kali Dayton 51:43
“We’re done talking to you!”

Lynn Nordhus, RN 51:44
I mean, they didn’t, you know, there was I was, I was kicking a lot. Apparently, that was one of the things that I did, I kicked with my right leg quite a bit. When I wanted stuff. And I remember doing it, I actually remember kicking my leg trying to get because of what I really wanted was swabs and I could see the ICU nurse outside the window.

And I like with her workstation on wheels, right with her well, and I was kicking because I wanted to find my labor I was my mouth was dry, and I was cold. And she would she came in this is my memory, who knows if it’s real? And she said, Why do you keep kicking? You’re like, Why do you keep doing that, and then just left again while you were intubated. And then and so then my son said that the nurse that gave me the whiteboard had gotten report that I was agitated all night and kicking my leg. And they didn’t know why.

And so one of the very first things I said on that whiteboard was oral care, and blanket. So it’s just the basic needs that get taken from you. That makes something like this so devastating. Like you know, Maslow’s hierarchy of needs. I didn’t have those. I didn’t feel like I had control over any of that kind of thing. So I think that’s why it’s so incredibly traumatic. Absolutely.

Kali Dayton 53:13
My heart just breaks listening to that, because I am very used to being in control of my environment, and I’m the doer of the busier I just get things done and to have that taken away from me and then not to have a voice I just that I think would be very traumatizing to anybody, but especially the nursing type. Yeah. Right. You know what needs to be done you’re like I can go get the swab myself except I can’t!

Lynn Nordhus, RN 53:36
yes!

Kali Dayton 53:39
But when we really practice the bundle, we put the reins back in the patient’s hands as much as possible. And when we understand how devastating this is to patients during and after the ICU, that’s when we can really start turning this around. So thank you so much for sharing your insight to this difficult journey.

Thank you for coming back to nursing. It’s amazing how well you’ve recovered help her that that same level of capacity for all students arrive survivors, but it doesn’t always happen that way. So congratulations on all of your progress. And I hope you continue to recover those parts of you that have been lost still. Thank you.

Lynn Nordhus, RN 54:16
I appreciate you. Kali, what you’re doing out there,

Kali Dayton 54:19
I couldn’t do it without survivors. Thank you so much.

Lynn Nordhus, RN 54:22
Thank you.

Transcribed by https://otter.ai

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