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Walking Home from The ICU Episode 19: Walking On ECMO Part 2

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In Part II, Tyler and Amber Lintz share with us how Tyler was admitted for severe septic shock, pneumonia, and ARDS and eventually needed ECMO but was still allowed to keep walking. Tyler also shares with us how he returned to being a firefighter 3 months after ECMO.

 

Episode Transcription

Tyler Lintz

The days that I did hard, PT, nice apart, it’s, I walked by 500 feet, or I did the bike too that day, or I sat up in bed, you know, just simple things that people take for granted every day. But sitting up in bed is that was PT.

For five minutes, I was exhausted. But the next day, they’d be like how we, your turned down, your vent- you’re down to 60%. So it’s like, okay, this is just doing something. Right?

Kali Dayton

Yeah!

Tyler Lintz

That reassurance from the staff of saying, your PT is a reflection on your values, lower settings, your ECMO, we turned down your PEEP, solid stuff. Yeah, so those, those little things have been reminding you of your values are getting better, keeps you pushing,

Kali Dayton

I think, you know, nursing 101, we learned that a lot of medical floor and has pneumonia, that they need to get up and walk because I helped her lungs get better. But once someone’s crossed the line and into the ICU, we forget that basic concept that: mobility is medicine. That moving helps the lungs. Um, and I actually haven’t worked with a lot of ECMO. So I just, I underestimate how much it’s still helps even when you’re on an machine, you still you experienced that the more physical activity activity you did, the better your lungs got.

Tyler Lintz

The only thing I didn’t like was as soon as I was done with PT. I have the suction, like every, I don’t know, 15 minutes. This is good. You’re getting all the junk out of your lungs. Right? And then after I was done coughing for an hour, then I felt better. Right? Yeah, you just, you knew your lungs were repairing themselves, essentially.

Kali Dayton

And that’s part of our, …one of our barriers is,… people feel like, patients have to be sedated because they’re going to be coughing and uncomfortable on the tube. When in reality, coughing-mobilize the secretions- So you can actually suction them out, and lungs can inflate more and get better. And so that’s what I see too when patients walk. We suction so much stuff out.

But when they’re sedated and in one spot the whole time, those secretions can just consolidate. They get stuck. They, they’re just they’re lingering longer. And so, yeah, that’s a really important point.

Tyler Lintz

It sucks, but you feel better.

Kali Dayton

It literally sucks. Yeah, that’s a really good point. Um, and it’s still pretty rare to walk on ECMO. Um, you know, if I bring up early mobility and talk about what we do our patients, and a lot of nurses around the country will scoff and say, “Well, your patients aren’t an ECMO- they’re not that sick.” And so now I use your story. And they say, Well, you know, still, the concept still remains. So what does it mean to us now that you ended up serendipitously enough, in a facility where you were awake and walking on ECMO?

Tyler Lintz

It took a while that I heard about ECMO before I got sick, just briefly through co workers fly and deal with ECMO patients, but I didn’t look into it. I didn’t feel the need to research it- it’s is just not my profession. But as I sat there and layed in bed, I was like, “Okay, I’m on ECMO, or does this thing to do? Why am I on it?” You know, it took a while to understand actually what it was. And then I soon as I realized everything, it freaked me out, right. I’m walking with one of the most advanced life support systems out there.

Kali Dayton

Your lifeline.

Tyler Lintz

Yeah. And there’s, I don’t know how many people does it take to get me to walk?

Amber Lintz

It was at least five. Yeah, maybe three if we towards the end when you are a little more stable.

Tyler Lintz

That’s with Amber walking behind me with a wheelchair, okay said you sit down. So, just to know why I was on it, how it works, gave me a lot of anxiety to think that – “This is it. This is what’s keeping me alive. And if it fails, or I throw a clot or stroke..”- which, I did, I had a stroke from it. I had multiple DVTs. So it was it was good to know that we have that here in Utah. We’re lucky we’re fortunate to have it – that we can be home for the family. but there’s definately a lot of anxiety with it. And then they’re telling us that only a few people walk on it. I don’t know, it’s weird. Because I can’t see it all I know is the right side of my head feels heavy, I see tubes to a machine, I tell him like leave take a picture for me. And she was very nervous to show me.

Amber Lintz

And when he walked on ECMO, the first time, I was like, we’re walking through the halls and you know, it’s a busy, I see a floor. And all the nurses aren’t even like caring, not caring, but not even, like second guessing him walking on ECMO, where I’m just like, “Look at him! Look at him! He’s walking!” and they’re just like, probably see it every day. And that’s true, they probably just see that every day. So to them, it wasn’t anything, but to me, it was just like, “Oh, my gosh, see those huge tubes, like he’s walking with that.” And but there was also nice to know that he was exactly where it needed to be.

Kali Dayton

Um, so after your, how long were you on ECMO for? Two months?

Tyler Lintz

No, December 16 to January 4.

Amber Lintz

Okay. And then he, after that, he did rehab till January 31. Then came on.

Kali Dayton

So, um, you were a firefighter before- extremely physical, mental, um, statistically, about a third of all ICU patients, that aren’t even as sick as you, are not back to work 60 months after discharge? Where are you at now? And how did that happen?

Tyler Lintz

I got home on January 31. Started doing PT just to the outside facility and at home, and then around probably the end of February…fortunate to have my work have a day position come- five days a week, eight to five, right, just doing desk work.

So I was able to do that for about two months. They still very helpful with getting my appointments, going to pt. And then we have a department physical that we have to pass once a year. And, of course, they were concerned with my pulmonary function, and my ejection fraction.

I passed everything else- my blood work was fine. And they were concerned about being on a blood thinner, right. So I was able to get off the blood thinner. My ejection fraction at that time, when I passed it, which was in May 2019 was 45%. So it was just basically the cut off to go back to work. My pulmonary function when I was healthy, which was a year ago from that date, I was at 110% for my age, gender, weight. So I was above normal. And when I did it that day, I was at 80%. So I lost about 30% function, but I was still eligible enough to go back to work. So I went back to work in  May-ish of 2019.

Kali Dayton

So you’re back to being a full firefighter four months after from rehab. And what’s your position now?

Tyler Lintz

I am a station captain, which is just basically supervisor over a crew.

Kali Dayton

What kind of cognitive demands does that have?

Tyler Lintz

It’s the same, it’s the same because before I was a paramedic, firefighter, so I was running the medical calls with the with the crew and making decisions and, you know, dealing with time management, all that issue. So it’s basically the same thing. I’m just responsible for five people. Just the stress of that, that comes with the position, you know, so… I knew you were going to ask if I have a cognitive issues.

Amber Lintz

You had them before you… you have them now. *Laughter*

Kali Dayton

But but, you know, for an ARDS survivor, I think you know, anyone, all ARDS, it’s not just those that have ECMO all ARDS, even those that weren’t as sick as you got 40 to 80% have severe cognitive deficits a year post discharge. Do you have any cognitive deficit?

Tyler Lintz

I don’t feel like it. Like they started talking about that stuff when we’re at the you, especially after I had my stroke. The neurologists that constantly were checking on me and doing CT scans and MRIs and just making sure things are changing even worse. Part of my brain that would be the cause issues was going to be my sense of direction. So my north, south, east west and cardinal directions, they said, probably going to have some issues with that. But I never have… I haven’t ended up in Ogden for some strange reason. So that cleared up within, I don’t know, two months.

Kali Dayton

What role do you think occupational therapy played? Or cognitive therapy?

Tyler Lintz

That was, it was interesting to go through that because I wasn’t expecting to do any of it. Right? Especially in speech therapy, too, but that’s different. So the pt, pt was the physical part was normal for me, but to do the occupational, the cognitive skills were, “Hey, you’re gonna stand at this table, and we’re gonna play dominos.” I’m just like, “Why are we doing this? Okay!” *laugher*

And then I would play the Wii game system, do virtual reality things, I would do puzzles that our six year old does. Like, what? Then they explain, “You just got to keep your brain going- keep it functioning, not sedentary.” And so it made sense. You know, because…. I don’t know where I’m going with that.

Kali Dayton

What do you think that means for your life now?

Tyler Lintz

I appreciate it. You know, it makes it makes complete sense that it’s just as important as the physical. Because in reality, that place being in there- confined for two, three months, it’s just mentally draining,

Kali Dayton

Staring the same walls…

Tyler Lintz

The same window, the same people. You know, there was one day that we were able to go outside for the first time. It was like, the middle of January, and it was cold, and the weather was bad, and I didn’t care, I just need to get outside. And I was in shorts and a T shirt, and they were all bundled up. And I was like,” I don’t… I just want to be out here.” mentally like ….that day I remember so well. Gosh it felt good to get some sun. Just mentally.

Kali Dayton

Um, and this is a high percentage of survivors have PTSD. You know, the rate fluctuates so much, I think because we not everyone gets trapped or diagnosed with it. But you know, 40 plus percent have PTSD. Do you have PTSD?

Tyler Lintz

I haven’t been, like, told I have it. But just knowing with my profession, dealing with, you know, our patients that we see as PTSD, and then just researching, because we’re always getting asked if, you know, after traumatic calls or dealing with issues at work, you know, we’re very aware of what PTSD is.

I, I’m pretty sure I have it now. You know, I can’t say I don’t have it. Yeah. Because every day I think about it. Every patient we go on that has a severe cold or infection. I’m like, “I don’t want to get that.” – Right? Because I don’t want to go back to the hospital.

It is a fear of mine to get sick again. And be in the hospital again. Yeah. But at the same time, I’m so appreciative life now- even more than it was before. I’m not depressed and not suicidal. There’s some anxiety with it, right? Like triggers are when we get a patient that is being intubated. I don’t want to be involved.

You know, when we go on a patient, it’s having severe respiratory problems. I want to help them so bad, you know, I want them I want to get rid of the anxiety because I know what they’re going through. So those patients I feel more, more attached to just help them get them feeling better. But, you know, with the PTSD thing- it’s occasional flashbacks of just zoning out for a minute and replaying a scenario that happened at the hospital. Or something, right? Where there was a procedure or just walking on ECMO, or, you know, just dealing with any issue that happened. It happens a lot. Yeah. I don’t know how much it affects our family life or work life, but I feel like things are good. You know? For the most part, it’s just a constant every day. Reminders.

Amber Lintz

I feel like it’s still so new. I mean, this week is our like, year mark from you being discharged. And I just feel like we talk about it so much. Daily. Just me and Tyler that it’s still Such a constant thing for us to talk about. And I feel like eventually, that will fade away, that we won’t be so engulfed in it still. But I think there’s little things like even for me, like the sound of a beeping or something that makes me even like, I don’t want to think about that. But like, I don’t want to anymore for whatever reason, there’s so many memories.

Kali Dayton

Yeah, and PTSD in family members is real, too.

Amber Lintz

Yeah.

Tyler Lintz

And speaking of that, it’s when we go on calls, right? My my crew deals with the patient directly takes care of them. And my family can be liaison. And for the most part are we’re really good with keeping the family informed and things of what’s going on. But now I feel like I’m really involved. I want to tell them everything that’s going on. But no, we’re doing everything the best we can just keeping them up to date, because it’s so important to Amber. I don’t have time she’s told me a few guys just keep your up to date, giving her the truth of expectations and the reality of it.

Kali Dayton

We started an ICU diary. I didn’t know how sick Tyler was gonna get and he was sick at that moment. But he was 32 and healthy. And I just logically, I knew I just thought he would just turn around and walk out in a couple days. Yeah. But I remember having the distinct impression that you had to have an ICU diary.

Amber Lintz

Yeah. And it was an awesome gift that I think benefited Tyler, but it also benefited us family because I enjoyed writing or everyday it was like my journal. But there was also like healthcare workers like you and a few doctors and other nurses that would have written something in it. And it was nice because your guys’s terminology compared to mine was like, he appreciated your guys’s stuff so much more. Remind was just like, the kids miss you. I miss you today’s hard. But I think he enjoyed reading back on what you guys had to say because everything was, you know, precise. And exactly in medical terms were mine was mumble jumble. And I appreciated every nurse or doctor that wanted to write in it because it was actually really meaningful.

Kali Dayton

It was therapeutic for you. Did you feel like you were communicating with him?

Amber Lintz

I did a lot. Like everything is that I wrote was geared towards him like he was gonna read it that night or something. And looking back, it’s hard to read because it’s very much was like my journal, but everyone that came into the room would sign it. And it was pretty awesome to look back for him. He didn’t know a lot of people visited. And then he would read what they wrote. And I was like, oh, yeah, like a messiah.

Kali Dayton

So like a guest book!

Amber Lintz

Yeah.

Kali Dayton

What it means to you, Tyler, to have that ICU diary?

Tyler Lintz

It was very good knowing that how much support had while I was sedated and just not able to function. It was hard to read to like “Wow, I was really sick”. Like I can’t imagine being on Amber’s side of it and going through all of that… that I have no idea what’s going on. Right? Like if we switch spots, I don’t think I can do everything she did.

Kali Dayton

She was amazing. Yeah. Yeah. I was a witness. She was amazing.

Tyler Lintz

Just to run life at home and in the hospital. Just there’s no way like it was it’s unbelievable the support system she had with awesome our friends and family so and to read it from the healthcare worker point of view too. My medical background knowledge is awesome to read about like, I just was not getting better.

Like, why wasn’t I getting better? Then there were days where like I was getting better. And then the next person I came I was like, “Well, you had a good night. But now you’re not having a good day. ” And it’s like, we just don’t know. This was really interesting, just to just a grasp everything because there’s that period of time, you know, the 16 days I was out. I on of the co workers were like, “You were…. 16 days of your life was just gone. You’re… like you weren’t here. And life functioned without you and things kept moving. And you just weren’t here now you’re here.” Like, I don’t know what to say to that. You know.

Kali Dayton

Some survivors say that part of their PTSD is from that lost time.

Yeah, like it’sjust, I can feel it. Like it just feels weird. Like, I missed out on something.

And that still bothers you?

Tyler Lintz

Not bad. It’s just the thought of like, it’s just so weird, right? Like, you sleep for eight hours and it’s just another night gone. But this was 16 days worse.

Kali Dayton

Right. And it could have been weeks more, right? Yeah. I have to ask even patients while they’re intubated, would you rather have been sedated the whole time?

Tyler Lintz

It was like… when I first woke up, and I realized there’s a tube in my throat, I could feel my tongue and I’m just like, things are not good. “Why? intubated?” You know? But then I was like, “Okay, I gotta be, I don’t know if this is just from my medical background, like, I told myself, things aren’t good, but stay calm. Whatever is going on, they’re taking care of me.” You know.  But I still had anxiety about it. And I think that’s where it came to me talking to you about, I’d rather have those anxiety meds than the pain meds. Because the pain meds are just so hard coming off and getting almost high dose narcotics just make you feel horrible. Okay, just the small dosing of things like anxiety meds I mean, it’s just eased everything.

Kali Dayton

Yeah, it’s one of my favorite things to give actually, just this small dose, just put the edge off, but not so much that they’re sedated. Because once you give them too much anti-anxiety, then they can’t walk and their progress decreases. And also, I don’t know, if you experienced what are walking do or mobility, do fear anxiety.

Tyler Lintz

They really did. Just like the studies say, if you’re stressed out, go work out all that tension out of your body and you feel better. And that’s how it was. It kept your mind off of what was going on. And you just felt better afterwards.

Yeah, I had a patient say, you’re saying that you had anxiety. And we’ve kind of dissected it. She was anxious because she was tired of looking at the same walls. 24/7.

Yeah. Change of scenery is needed.

Kali Dayton

And then she realized, since she wrote down on paper, she said, I don’t need meds, I need to walk. And I said, Let’s do it. You know, we’ll do it.

Tyler Lintz

Yeah, that’s the other thing that I had was, I don’t know what her job titles was. But she would come in every week or so and say, “Would you like a magazine? Would you like to play the Xbox? Do you want some board games?  Deck of cards?”-  just to change the atmosphere. Because sitting on that bed day after day, minute after minute, it’s mentally draining?

Kali Dayton

Yeah,

Amber Lintz

They changed his room. We changed it once. And we had three room changes, which I think helped. Helped me, helped you. And that was nice to be able to get a different view and space.

Kali Dayton

That’s good point to the in the cvicu. Did they change rooms? For a reason, or just for the purpose of…

Amber Lintz

for the purpose of giving him a different area.

Kali Dayton

Oh, they’re good.

Amber Lintz

Yeah,

Kali Dayton

we’re gonna interview them later, too.

Tyler Lintz

And I appreciated, I figured out the nurses schedule, right. Nurses schedule, the doctor schedule, who was on and off, and they communicate with you really well, I would have the same nurse. Morning nurse and night nurse for three or four days. Right? It was there. So I have the same nurse, which is awesome. Because I guess he knew where I was or where I wasn’t. So that was awesome. Because I would have different hours every single day.  We’re just how do they know what’s going on?

Kali Dayton

Oh, that’s such a good point. I I’m a big believer in continuity.

Tyler Lintz

Yeah.

Kali Dayton

I’m with my own schedule. I feel like I take the care of people when I actually know them. But especially for nurses too.

Tyler Lintz

I would be a sigh of relief.  No, sometimes it’d be their forth day, but they just spent with me then they’d say,  “Well, I’ll see in next week on Tuesday and be six days “Boy, oh, really? Can’t you just stay? ”

Kali Dayton

But oftentimes, those are the kind of nurses that are texting their co worker saying, “Hey, how’s room 32 doing?” because I genuinely caring. And when you can interact with a patient, you feel more connected with them, obviously. But when someone’s totally sedated, or totally delirious, you don’t know who they are. So I think they’re always concerned how hard it is to care for a patient that’s awake. But once you get over with delirium, your story shows that you can really be calm, cope, understand what’s going on, work with it, and then you connect with staff. At least my coworkers say how much they appreciate actually getting to know patients, but their work means something because they know who they’re taking care of. Any other thoughts?

Amber Lintz

Something that I wanted to add was things that meant a lot to me were when you and other nurses and staff gave me an example not a like a detailed example just when he was getting prone. And you sat down and said you know he’s very sick. This is, you know, the reality of it. But this is helpful. This has been proven to show, you know, people come out of this and it’s better and it helps, and this is the right way to go. And I needed that example.

And when we were on ECMO, I was able to sit down with a patient that was actually doing like a, you know, like a, I don’t know, what would you call it? He was tutoring or something, one of the physical therapists, but he was an ECMO survivor. And he had a story identical to Tyler’s, and he was there that week only, and I was like, he is here for a reason. So he sat down me and just told me his whole story, and gave me hope. And then his, his outcome was just like Tyler’s, and there was a few nurses that would sit down and say, This is gonna be okay, you know, this is we see this, he can do this, they just gave me hope. And even if it was false hope, in a sense, even if they have, like, some type of story of any past patient that they can give, to give hope, I feel like it’s needed, even if the family doesn’t ask for it.

Just give it because I like lived for those things. You know, I just needed something in my mind to say, okay, that person did it, tell I can do it, or, you know, this guy he was same way, just Tyler, you can do it. And it’s just, I don’t think healthcare providers realize, like, how easy that is to do. But how beneficial is. And so if I give, like, give any advice for them, is to just give hope, you know, and I mean, they still have to give the reality of it too. But if you just give both, I think, because when he was prone, it was such a hard day for me to find out why you’re doing that, you know, but you sat down and laid it out for me. And after that, I just felt completely like, you know, it’s gonna be okay. And so I feel like, that’s the biggest thing that I would say, to, you know, a nurse or a doctor or anybody is to give hope.

Kali Dayton

I love that. It’s like I do more bad bidding than giving hope. So that’s good to hear.

Amber Lintz

Well, it’s nice to hear you know, the reality. Because you want that to you don’t want to think that everything’s perfect. But you just have to have something to hold on to just some type of situation where you say, Okay, this isn’t impossible. This isn’t, you know, like, never gonna happen.

Kali Dayton

Um, that sounds like an cvicu that they were talking about discharge things. About possible cognitive deficits, PTSD. I mean, did that help? Did you feel like you went home prepared for what was to come?

Tyler Lintz

I don’t know if you could be fully prepared to be ready to take care of yourself at home. Even prepare Amber to deal with it. We were adults when we got home, right. I think there could have been a better job with that, even with the PTSD portion of I think there should have been more counseling sessions one on one during the ICU visit, right? Oh, you have your respiratory therapists, you got your nurse, you got your your PT people, but I only talk to a counselor maybe once or twice out of rehab. Right when I can talk with my speaking about. I just wonder if having an educator counselor in there just to discuss like, “Hey, let’s talk about ICU delirium. Let’s talk about PTSD. Let’s talk about hallucinations. Let’s, how are you feeling today? What’s your anxiety? What’s your depression?” Like? There’s all those things I just would sit there… “Am I okay?”

Kali Dayton

Is this normal?

Tyler Lintz

Yeah.

Kali Dayton

Should it be like this?

Tyler Lintz

The constant worry. Maybe I’m just thinking too much. So. And then at the same, there has to be somebody who is very familiar with ICU life, right? When I talked to a counselor when I was in rehab, she has no idea…

Kali Dayton

What you just went through.

Tyler Lintz

Right? She’s, as far as I know. She’s just a counselor that deals with everyday issues and talk about things. You just nod your head about some things on paper, and I was like, do you really know what goes on in ICU?

Kali Dayton

“Do you know what I’ve been through?”

Tyler Lintz

So I think it has to be somebody who’s educated, has lived and worked in ICU to understand.

Kali Dayton

Yeah, I’ve heard from survivors that when they talk to therapists and primary care providers on the other side that they feel very misunderstood. And sometimes they’re not validated. They almost have been treated like they’re crazy or shouldn’t feel that way. I think so many survivors feel like they can’t talk about the things because they should just be grateful that their life.

Tyler Lintz

Yeah.

Kali Dayton

But it’s okay to recognize that this changed your life.

Tyler Lintz

Yeah.

Kali Dayton

Granted your outcomes to be able to be not only back to work, but now be chief firefighter and doing all the physical things and the mental things. I mean, just where you’re at a year later, is incredible for an art survivor that required ECMO. And yet, it changes your life. And that’s okay.

Tyler Lintz

Yeah. Yeah, I cannot imagine still dealing with it. I still have issues. You know, I’m not 100% I still have things going on. But I can’t imagine dealing with still being on oxygen. Wearing it at night. Like I I had oxygen just for two months at night. You know, and I just finally got off my beta blocker. Right? There was a milestone for me like, I need to get off this thing. I can’t imagine those people that are still dealing with issues, it would be such a mental draining thing.

Kali Dayton

Yeah, it’s it’s… now that I’m interviewing survivors and hearing what it was like to have delirium for weeks to months and what their life was like after that. It’s, it’s pretty insightful- which makes your story even more amazing. So thank you so much for sharing. Any other last thoughts?

Amber Lintz

I’m sure I’ll think of one tonight. *laughter*

Kali Dayton

I love it. And I’m just honored to be with you and thank you for your vulnerability and sharing those deeply personal and hard things. But we need your insight. So thank you for sharing and being willing to make a difference.

Amber Lintz

Thanks for having us.

 

Transcribed by https://otter.ai

 

 

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About the Author, Kali Dayton

Kali Dayton, DNP, AGACNP, is a critical care nurse practitioner, host of the Walking Home From The ICU and Walking You Through The ICU podcasts, and critical care outcomes consultant. She is dedicated to creating Awake and Walking ICUs by ensuring ICU sedation and mobility practices are aligned with current research. She works with ICU teams internationally to transform patient outcomes through early mobility and management of delirium in the ICU.

LEARN MORE

As an RN in the Medical-Surgical ICU at the hospital I work at, I began my interest in ICU Liberation through an Evidence-Based Practice project.

While I was initially grabbed by what the literature has to say about over-sedation and patient outcomes, it wasn’t until I discovered Kali’s Walking Home From The ICU podcast that a culture of sedationless ICU care sounded tangible. The group I worked with on the project was both inspired, devastated, and intrigued by the stories Kali illuminates on the podcast, and we were able to bring her to our hospital for a virtual Zoom Webinar, where she presented on the practices in the Awake and Walking ICU.

This webinar was an incredible way to draw attention toward this necessary culture shift as Kali shared stories of patients awake and mobile in the ICU despite the complexity of their illness. The webinar inspired our final draft for the new practice guideline on analgesia and sedation management in the ICU, and since then we have seen intubated COVID patients playing tic tac toe on the door with staff members on the other side, taking laps around the unit, performing their own oral care using a hand mirror, and most importantly, keeping their autonomy and integrity while fighting to leave the ICU to resume the life they had before coming in.

Nora Raher, BSN, RN, MSICU
Virginia, USA

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