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In this episode, Kali talks with Jim and Cheryl Rettinger about what it’s like to be sent to LTAC with no expectations of returning home and what happens when patients have not moved for weeks+. What does their journey to recovery looks like? Plus, they discuss the psychological effects on survivors and loved ones.
Episode Transcription
Kali Dayton
Today, I have Jim and Cheryl on with me. Jim is an art survivor. And we’re so excited to hear about his journey. Thanks for joining us, guys. Thanks, Jim. Can you tell us about your ARDS journey?
Jim Rettinger
Yes, it started in December 2018 2018. Me and my wife both got sick. She went to a doctor I didn’t. At the time. I tried to get over it myself. And it never happened. Then it got worse on when we went to local ER. I was there for half the day, spent the night there. And then they it was beyond what they were capable of. So they sent me to Burlington, a better er in Burlington, Iowa. And the last thing I actually remember is being wheeled into that, er, everything else. Next thing I can remember I was waking up about two months later. And Des Moines, Iowa, in recovery facility.
Kali Dayton
Wow. Is that time completely lost to you? Or do you do have other experiences during that time?
Jim Rettinger
My wife tells me that I was actually awake during for the first day or two. I don’t remember. No, no. I don’t remember any of it. I think it might be part PTSD. My mind just kind of blanked it out. But it was I don’t remember anything besides waking up her there to help answer some of the questions of of those couple days where I don’t remember.
Kali Dayton
So Cheryl, what was going on during those two months?
Cheryl Rettinger
Well, he said he was awake for first few days in Burlington and that he was just so bad and couldn’t get any oxygen levels high enough to maintain that they had to induce a coma. And then they began to do the proning. flipping him back and forth basically every 12 hours, well, 12 hours on his stomach four hours on his back. The first couple days he was awake before they started the protein in the the induction of the coma. But he was just really out of it. I mean, he’s just every bit of his energy was just trying to breathe. His pneumonia was very bad. It was covering pretty much 100% of his lungs.
Jim Rettinger
Yeah, I had double pneumonia, H1N1 which led to the ARDS, right?
Cheryl Rettinger
They didn’t they couldn’t identify the the influenza A or the h1 in one It took about, I don’t know, five weeks before they actually got a test back that confirmed what was it was causing all the illness. They had taken five tests before they finally got positive.
Kali Dayton
Wow.
Cheryl Rettinger
Yeah, so it was a lot of did really didn’t know what was going on. They knew that he had developed ARDS, they knew that he has severe pneumonia, and that he had something in his system that was knocking him down really hard. They just couldn’t identify it for a long time. We had the disease specialists, and every specialist you could think of in the ICU.
So once uh, so he was on in Burlington for about three weeks. And then our doctor said he was going to be leaving for his rotation. And he said it was a good time to transfer him and they continue, they didn’t prone him anymore. But they started trying to take the sedation off a little bit at a time for a couple hours every day, and trying to get him to wake up and just a constant battle of trying to get his oxygen levels to a place where they could feel comfortable letting him be awake a little bit. Because he was basically every ounce of his energy was being used and when he would move with his oxygen levels go down. We would call or if they moved in any movement at all his oxygen levels would drop. I think the lowest he got was in the 60s.
Kali Dayton
Yeah, I mean, I I’m not a huge fan of sedation, but ARDS can become that one of the big exceptions in which oxygen consumption is really difficult in that situation when he cannot oxygenate his body. So that was it.
Jim Rettinger
I don’t think I would have made it if I didn’t know wasn’t put into the coma because it was just so bad. And actually they only gave me they only gave my wife you know 30% chance that I was going to make it anyways.
Kali Dayton
Yeah, that’s so difficult. Cheryl, what was it like for you to have him in a coma?
Cheryl Rettinger
It was hard. Um, you know, you just we just didn’t know more than anything. The hard part was we didn’t know what was going to happen. We didn’t know if we’d ever wake up again. We didn’t know if when he did wake up that what life would be like for him because they said, you know, there had been some he had been deprived of oxygen at points. And so they didn’t know how it would affect his cognition. Mm hmm. So and they’re, you know, they started trying to wake him up a few times, he’d wake up just a little bit. He didn’t know where it was at or what was going on. So it took it took a good three weeks of him waking up a little bit here a little bit there. Before he even realized who he was or who we were. He didn’t recognize us. He didn’t know where he was. I was very confused. It was difficult.
Kali Dayton
Was that stressful for you to see him be so confused?
Cheryl Rettinger
Oh, it was very stressful. It was scary. Um, it just kind of changes your whole world. We didn’t know what was gonna happen. I mean, yeah.
Kali Dayton
And did you did you know what was going on? As far as did you know, he was going to be delirious?
Cheryl Rettinger
I had done a lot of research I was I’m the kind of person that wants to know everything. And I was fortunate with the doctor, Burlington, I told him, you know, tell me everything, I want to know exactly what I’m dealing with. And he was very upfront, I had to fight really hard and I was city to get information. And then deploying, it was probably one of the worst hospital experiences I’ve ever had. They didn’t keep me informed or anything, I had to just keep fighting for everything. Um, they didn’t give him good treatment in the morning, as far as I’m concerned.
Kali Dayton
How really traumatic for you.
Cheryl Rettinger
So I, I quit my job. Um, and when it basically I tried to be there every as much as I possibly could, I’d come home for a day, go back for three or four days and then come back home for day to you know, kind of check in on the house and yeah.
Kali Dayton
Jim, what was it like to wake up after all of that?
Jim Rettinger
Well, I had some really good coma dreams. So it was hard for me to wake up actually waking, waking up for me. Felt like I was waking up in the dream. It was the it was the reality was, was more dreamlike to me than my dreams were was hard. The first thing I remember, was my wife, asking me, you know, tell me where I was asking me if I knew what was, you know, if I understood what she was saying at the time? I didn’t? Yeah, it was it was tough.
Kali Dayton
When I had asked the survivor group about their PTSD, commented that your PTSD came from the disability that followed, not being able to move, can you tell us what that was like?
Jim Rettinger
Yeah, it was horrible. And I couldn’t, I couldn’t adjust myself in bed, couldn’t sit up, couldn’t hold my head up. They put, they put me to a sitting position. And I couldn’t even hold my head up from sitting position made have to hold me up. So you know, otherwise, I’d fall down. And what made it even worse, was my cough. Because every time I moved, that I would start coughing. And I would call for an hour, hour and a half straight. My oxygen would just plummet. It was really a pain. For me, especially when I was able to start getting up and trying to walk around it was I mean, they’d give me up on my feet, and I’d start coughing, and they look at my oxygen. And they said, let’s try this again later. Down. So it took me I say, at least twice as long as normal to get up and moving around.
Kali Dayton
And you woke up in a long term care facility, right? Yeah. And so you already had a tracheostomy?
David Burrows
Yeah, the trach?
Kali Dayton
Um, how long did it take for you to be able to be on your feet or to move your arms?
David Burrows
It took a long time.
I would think maybe up to four weeks just to be able to sit up, sit up, and that was with help.
Cheryl Rettinger
And after he left a long term care facility, went to nursing home he still wasn’t able to walk or anything on his own. It was all mostly using a wheelchair. He didn’t really start walking on his own so probably April.
Kali Dayton
Yeah, with a walker. That was how many months?
Cheryl Rettinger
April so even after he woke up
Kali Dayton
another five months from December. Well after you woke up. They woke you up in February, into February but it was April. Before you were able to walk with a walker… so about two months. And that was walking with a walker. How long were you in? How long were you in the LTACH for?
David Burrows
I think was five weeks. Six weeks? No thanks. It was six weeks,
Cheryl Rettinger
I guess six weeks? Yeah.
Kali Dayton
And then how long were you in the nursing home for?
David Burrows
About five weeks?
Kali Dayton
What was that? What did that do for you psychologically.
David Burrows
I was scared to come home, I wanted to come home because I was so tired of being cramped up in a hospital. And especially when I was in Des Moines with the winter that we had, I’d look at look at the news. And, you know, we don’t have normal winters in Iowa, we have rain, turning to ice turning to snow. And we had that almost every day. And here’s Cheryl trying to drive back and forth and, and everything else. I was so desperate to get home, then I was scared. Because we have some steps. I didn’t know if I’d be able to get up into the house. I didn’t know if I was gonna be able to, you know, get able to lay down and get back up on my own. Get to the bathroom on my own. And all that stuff is it was scary.
Kali Dayton
How old were you at the time? 50 Yeah. 51? Um, what did? What did it mean for you to lose that kind of independence?
David Burrows
I’ve always been proud of being able to take care of myself that was a big was a big step back for me is just, it was really hard for me to realize that I couldn’t do the simple, simple, simple day to day things. It was tough. My wife did a lot. She still does a lot. I’m still in recovery.
Kali Dayton
Yeah, where are you at now? Do you still have any physical impairments?
David Burrows
Yeah, I’m still on oxygen. My lungs are all scarred up from the from the ARDS. So they don’t they don’t inflate and deflate like they’re supposed to. Every time I try to do anything physical, I start coughing even talking, you can hear me every once while cough. I really can’t do much.
Cheryl Rettinger
He’s limited is like, I mean, he’ll try to walk through like Walmart. And he’ll walk maybe halfway through and have to go back and sit down in the car because he just that’s just too much. Um, the physical exertion just wears them out. He’s not getting oxygenated like, I can’t say like he’s supposed to. Also his heart rate. When he does do anything physical, his heart rate shoots way up to like 147
Jim Rettinger
So then they get my body’s not getting my body’s not giving enough oxygen. So my heart tries to work harder to get that oxygen out to to my body. Wow. And I’ve been in physical therapy, several physical therapies. You know, since being out there’s just not much change, not much change at all.
Kali Dayton
And how long has hasn’t been since this started?
Cheryl Rettinger
Since the since he went to the hospital? It’s been over a year since he’s woke up and come and it’s been? Oh, let’s see months. Eight months? Yeah.
Kali Dayton
Have you been readmitted to the hospital?
Jim Rettinger
Yeah, about a month ago, I got sick again. And my wife threatened to call the ambulance if I didn’t go to the doctor. So I went because I was still I’m still under the impression you know, I’ll just get over it. My body will heal but my immune system shot that’s another another thing that’s happened so ended up with pneumonia. And I was in the hospital three days
Kali Dayton
For three days.
Jim Rettinger
And that’s when I when we got there. On the drive. I told my wife you know if it comes down to it, I’m not sure if I can do this again. If it comes down to it, I didn’t know if I could go through the recovery in the coma and everything else. So and then get into the hospital changing into the gown. It all started hitting me I was very nervous.
Kali Dayton
Um, what were some of the thoughts going through your head?
Jim Rettinger
Well, I was still struggling with if I was going to fight it or not turns I didn’t need to, they just been there a couple days. They gave me the company full of antibiotics and for three days and let me go with a couple more prescriptions. It’s another thing I got about 20 Just prescriptions that I got to take.
Kali Dayton
Well, I’m glad that that didn’t get any worse.
Jim Rettinger
Yeah, me too.
Kali Dayton
Do you feel like you have some PTSD? From ARDS?
Jim Rettinger
I think so. I haven’t been diagnosed. I haven’t talked to anybody about it yet. I think my wife does, too. Because I was I was I missed most of it. Like I said, I was asleep.
Kali Dayton
And Cheryl, what were some of the thoughts or feelings that you had driving to the hospital again?
Cheryl Rettinger
Just, you know, fear thinking, we, we thought all this and we got there. And we’re going to do it again. And, you know, how was I going to? I don’t just how was I going to do it this time driving back and forth? And just, I don’t know, just thinking, what if? What am I going to do? If he dies? Does the whole process going through your head again, it’s, it’s pretty scary. Jim has always been kind of like the the, I don’t know, the main guy in the house. He’s taking care of everything for you know, us, we both worked, but that’s just the way our life was. And then it’s just everything’s flipped upside down now. And it’s, it’s a whole whole nother world now.
Kali Dayton
Yeah, we were starting to do more studies on the burden on caregivers, after ARDS, because your life does change? How has your life changed since coming home?
Cheryl Rettinger
Well, everything is I mean, I don’t like, you know, he was extremely independent before, you know, we just kind of both did our own things. And now it’s, you know, I don’t like to be gone for very long, or I need to stop and think when we go to the store, you know, to get in and get out fast. But he doesn’t, he’s not waiting on me too long. And then trying to find ways to get him out of the house, trying to find ways to help him keep his independence and not be too overbearing on him.
But yet, trying to keep him from doing things that aren’t safe, like going outside of shoveling or clean out, trying to clean off the glass off the windows off of the car, when it’s zero degrees out, you know, trying to get an understand it’s not worth the cost, you know, we’ll, I’ll take care of it. So it’s just kind of a lot of roles have shifted, which is fine. It’s just it’s adjustment. Um, and I think the hardest thing is getting other people outside of our house to understand it. They a lot of people, especially his previous employers, they just had this idea that everything was just going to go back to normal and then okay, is he ready to come back to work is you know, and when they hear him cough, or see how hard he’s trying to get through things, they can’t understand. And they just, they’re just waiting for them to bounce back and they can’t comprehend what’s really going on.
Kali Dayton
Yeah, and I think even in the medical field, we have some ignorance about the process of recovery. You know, that until I started talking to survivors, when patients rolled out our ICU doors, I had no idea what faced them. And, you know, in Jim’s case, he moving really affected his oxygenation. So he had to be paralyzed and sedated. Right, in some cases, you know, when people have pneumonia and different other situations when they’re on the ventilator, they get sedated. Right, my question is always was that worth it? Jim had one of the strong exceptions for needing sedation but I’m always I just think it’s so important to explain Jim’s perspective what it was like to not be able to lift your head up and to spend months trying to just be able to be on your feet again.
Cheryl Rettinger
And thinking that he could get just get out of bed used to always “I’m leaving, I’m going to the Dairy Queen” and tried to slide what thinking he was trying to slide his legs out of the bed to go and I’m like “You’re not going nowhere, dude, you can’t walk” and he couldn’t even swallow.
So I mean, it was like you know, you have to go every single time to have to re explain you have to go through a swell test you have to learn how to eat and drink again and and so he had to just had to relearn everything and even though his cognition hasn’t been impacted severely, it has been impacted because things don’t come down. He’s he was super super smart with numbers and math and and those things just don’t come to them like they used to come in. So it’s it that’s a challenge.
Jim Rettinger
I have a hard time stringing sentences together. I have a hard time remembering certain words. It’s still frustrating as I call it, my “new normal”.
Cheryl Rettinger
He doesn’t remember things too. Like when we Halloween, I was putting the Christmas the Halloween decorations. And the Christmas decorations out this year. He’s like, “Oh, when did you buy that?” Like, we’ve had it for several years. You know, so there’s just there’s gaps in some of the things he remembers.
Kali Dayton
Jim, have you gone back to work?
Jim Rettinger
No. They held the job for me as long as they could. I just there’s just no way. I can’t. I mean, just taking a shower. Something as easy as taking a shower, I can get it done. But then I’m in bed with oxygen on coffin for half hour. Trying to kind of get over that. This, I’ve just not enough energy to do it. Yes, it was a 45 minute drive each way and a 10 hour drive, you know, 10 hour day.
Kali Dayton
What was your profession? Previous to this admission?
Jim Rettinger
I was in sales for like industrial pipe valves and fittings to the industrial market. And HVAC equipment, and plumbing supplies. I mean, they they did treat me good. They held the job. As a matter of fact, I actually told him, you know, there’s, it’s been over a year since I’ve worked there, and it’s going to be at least another year. In the foreseeable future. That’s the thing we really don’t know. All I know is I’m not getting better than I am now.
Kali Dayton
Sure. Oh, have you gone back to work?
Jim Rettinger
I started went back to work part time, I’m starting to look for a full time job right now actually have some interviews coming up this week to start back full time. Um, but it’s within the context of them knowing that it has to be flexible, because I need to be able to go to important doctor’s appointments if necessary, or kind of stuff. So yeah.
Kali Dayton
So so this has impacted your your career?
Jim Rettinger
Oh, yeah.
Kali Dayton
Cheryl, do you feel like you have PTSD?
Cheryl Rettinger
Sometimes? Um, I think when people want to talk about it a lot. I mean, I’m fine right now. But I think when I start thinking about or talking about it, then it does start to get to me. If I start to watch certain TV shows that I watched a lot while he was in the hospital, I think going to hotels is really hard for me because I spend so much time in hotels. The cold weather is a reminder of everything. So it there are some Yeah, that I mean, I’ve talked to my doctor about it.
Jim Rettinger
It was hard for her because I had a lot of questions. What I what I woke up, and it was hard for her to talk about it. But she, she talked about it and answered a lot of my questions.
Cheryl Rettinger
I have a background, my degrees in psychology, and social work. So I have a lot of background and all of that. So I kind of I know what I need to do and what I need watch for so that helps.
Kali Dayton
I think we, um… At least I was very unaware of the toll on caregivers afterward. I really just didn’t know what the journey was like. I think because in the ICU, we are disconnected from the life after the ICU, we tend to fail to prepare our patients for what’s to come. Do you feel like you were prepared for the journey that waited for you outside of the ICU?
Cheryl Rettinger
Um, no. I mean, I think more than some other people because I’ve worked, worked in the system. And I’ve worked with people with disabilities and I help them find services. So I kind of had some background information on what was might happen.
But on a personal level, no.
Jim Rettinger
Plus, she asked a lot of question.
Cheryl Rettinger
Yeah, I do.
Jim Rettinger
We actually had trouble getting into a nursing home, or a nursing home for the rest of the recovery because everybody was booked.
Cheryl Rettinger
And well, they didn’t want to take them this case when he felt that his situation was too difficult for them to manage.
Kali Dayton
Hmm. Yeah. Because of the lack of mobility.
Cheryl Rettinger
Yeah, and oxygen. I mean, when we go to the even at the hospital, but LTACH and the nursing home, when he would have a coughing attack the nurses and the aides would get pretty stressed out because they didn’t know what to do or how to handle it. And so a lot of times they would just stop whatever they were doing with him and leave and go you know, leaving come back in 10 minutes check on him come back in 10 minutes, you know, like he’s still coughing, because nobody’s really could figure out why he’s still coughing and having those such long coughing attacks.
Jim Rettinger
Yeah, that was that was irritating to me. Because I would try to warn him you know, they were trying to get me up. You know, you need to sit up to eat your your lunch like I can try. I’m going to start coughing Do you want me to choke on my food? No, just just give it a try. So I do it. I try. And I start coughing, and then they leave. Yeah. I told you I was gonna call.
Kali Dayton
Speaking of eating, how long after you left the hospital were you able to eat?
Cheryl Rettinger
He he was eating while at the LTACH, he’d had to do that before he could leave. So he was eating for a good couple weeks before they released him.
Jim Rettinger
Yeah, I had to start from scratch, have the start with the waters and in the jello’s and the puddings, and then gradually work my way up to real food. And, and prove that I could do the X rays while I was chewing and swallowing and, and all that good stuff. It was, you know, basically from scratch.
Kali Dayton
Well, I’m so sorry for all that you both have suffered? Um, thank you so much for sharing all of this with us. Is there any thing that you would tell us ICU providers that we should know, from your experiences?
Cheryl Rettinger
From my from my side of it with the ICU, I felt very good about my ICU doctors and nurses in Burlington and pretty much I was city. I think that I was city they there was such as a school environment. There wasn’t as much communication with me and, and didn’t really want to give me information as much. They tried to just sugarcoat everything.
Um, the LTACH, that was probably the most challenging because nobody knew anything. Nobody talked to me. I couldn’t get information. I think that is a huge part for families. We need information, we need to know what’s going on. We need people to be real with us. And you know, because I didn’t know when we came back from when which would doctor follow up in Burlington after he’d been released. And they told us that when they release them to the LTACH, and then to the nursing home, they had no anticipation of him ever going home.
They sent him there thinking that that’s where he was going to be for the rest of his life. But they didn’t tell me that.
Kali Dayton
Wow.
Cheryl Rettinger
Yeah. So there’s just things like that. I feel like, you know, I’m entitled to know, and I should have known and, you know, and what else I could do to help. I mean, I, I really am an advocate for people. So I was able to advocate for myself and for him. But for people that I seen there without an advocate. I felt very bad for them.
Kali Dayton
Yeah, Jim’s very blessed to have you and vice versa. But but that is such a good point that you touched on about educating families and open communication, something for us all to take big notes on.
Cheryl Rettinger
Yeah, that’s that’s the biggest thing from my perspective.
Kali Dayton
And, Jim, what would you have us understand about recovering from a coma?
Jim Rettinger
It’s hard work, you guys. I mean, you got to start act like act like a newborn child. You have to prove everything again. And the best thing for me is you got to have communication. They can’t kind of communicated to me pretty well, about what it was going to be like when I got home, especially at the the nursing home. But when I was in Des Moines, it was very little communication. The doctor was in five minutes a week and say, hi, he remember me. Okay, bye. No, no, no information. But yeah, being in a coma. It was. it was… I wouldn’t do it again. I don’t think.
Kali Dayton
Yeah, that’s a… that’s really impacted your life. And I appreciate you sharing that with us. I know. That’s, these are hard things to talk about. But they’re such good points for us as ICU providers to learn from. So thank you so much for joining us.
Cheryl Rettinger
Thank you.
Transcribed by https://otter.ai
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