Post-Intensive Care Syndrome (PICS) - Let's talk

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@hopeful33250

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, “neruocognitive rehab” in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

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I will try to find neurocognitive rehab. I live in the Seattle area. None of the medical people I’ve seen have known anything about Post Intensive Care Syndrome, though the neuropsychologist was very helpful and knew I was in distress.

@jamienolson

@spottedcat83 and @elhirsh, I would like to add my welcome to Teresa’s- I think this will be a great place for you to connect with others who have also experienced something similar to what you have been through. In my experience, part of the “healing journey” is to keep sharing and connecting.

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Thank you!

So I’m dropping back in to give you all a bit of the back story.

I was in my late 40s at the time and had always been a relatively healthy person. I’d never been really sick, to where I’d needed to be hospitalized.

I had a very stressful spring and summer in 2014. I took on a new job, and it didn’t work out. I went back to working part-time, but I had a hard time at that too. In the fall, I went to visit a good friend of mine. Her son has emotional problems, and my visit was rough on me, because he was acting out quite a bit while I was there. When I flew home, I got a sinus infection. It got worse, to where everything just smelled… bad. I went to a doctor, and he agreed that I had a sinus infection, but thought it was too early to give antibiotics, and he advised me to make another appointment if the infection didn’t go away. That was Monday, I think. By Friday, I was really quite sick, and on Saturday, after talking to a consulting nurse, I called my brother on his cell phone and asked him to come home and take me to the ER.

I was diagnosed with pneumonia, and the ER doctor was considering sending me home, but decided to keep me overnight for observation. But while I was in the ER, I asked to lie flat because my back hurt. (Not a good idea, in hindsight.) Then I got a wave of nausea, and I vomited, and I aspirated some of the vomit.

I remember leaving the ER for a regular hospital room. I don’t really remember arriving at the room, but a nurse I talked with later told me she remembered I only take pills with food, and I did have a suggestion of a memory of that. I also remember talking with my good friend on my cell phone, but only after she reminded me that she and I had talked.

When my brother dropped in to visit me Sunday evening, he found me to be, in his words, “completely out of it.” He called in the nursing staff, and they began to take my pneumonia seriously.

On Monday morning, they transferred me to the ICU and sometime that day they put me on the ventilator. I was in some kind of a bed where I was face-down for ten hours, then face-up for two hours. This pushed the framework of the ventilator into my face and left flat scars, one on each cheek. They also put some kind of a device that monitors blood pressure and some other things in my carotid artery. I had a blood transfusion for that. I also had some kind of procedure where the lung doctor went in and… well, I know it’s not called vacuuming out the lungs, but that’s what it reminded me of when I was reading the bill for my hospitalization later. I didn’t remember any of that, though. My brother had to tell me all this, or I discovered it months later on the bill (which was very long).

The hallucinations were terrifying. I was trapped in some kind of a world with rather triangular dimensions, and it was short, so I couldn’t stand upright. It would flip, and I would think I had escaped. But no; I was still there. This happened over and over.

When I woke up (sort of) on the following Monday, my brother (who had been there every day when I was out) had reached the end of his emotional strength and stayed home that day. It was the worst day he could have had such a thing happen. The first nurse I remember told me I was in the hospital and that I’d been sick. She was gruff. She obviously didn’t like me. She was wearing very heavy, orange-ish makeup, and she scared me. I was instantly convinced that I was being held prisoner. The other nursing staff were pleasant, but the damage was done. I tried, in my drug-induced state, to figure out how to escape. I somehow worked off the “puffer stockings” that are supposed to keep blood clots from forming. I don’t know how I thought I was going to get free of all the tubes, but I was really out of it, so I thought I could wait until nobody was paying attention and crawl away.

Then the next day my brother showed up. I wasn’t being held prisoner after all.

Then I had to get on with the reality of healing.

Wow, that was long and detailed. If you read through it all the way, I give you 5 brownie points!

🙂

@spottedcat83

So I’m dropping back in to give you all a bit of the back story.

I was in my late 40s at the time and had always been a relatively healthy person. I’d never been really sick, to where I’d needed to be hospitalized.

I had a very stressful spring and summer in 2014. I took on a new job, and it didn’t work out. I went back to working part-time, but I had a hard time at that too. In the fall, I went to visit a good friend of mine. Her son has emotional problems, and my visit was rough on me, because he was acting out quite a bit while I was there. When I flew home, I got a sinus infection. It got worse, to where everything just smelled… bad. I went to a doctor, and he agreed that I had a sinus infection, but thought it was too early to give antibiotics, and he advised me to make another appointment if the infection didn’t go away. That was Monday, I think. By Friday, I was really quite sick, and on Saturday, after talking to a consulting nurse, I called my brother on his cell phone and asked him to come home and take me to the ER.

I was diagnosed with pneumonia, and the ER doctor was considering sending me home, but decided to keep me overnight for observation. But while I was in the ER, I asked to lie flat because my back hurt. (Not a good idea, in hindsight.) Then I got a wave of nausea, and I vomited, and I aspirated some of the vomit.

I remember leaving the ER for a regular hospital room. I don’t really remember arriving at the room, but a nurse I talked with later told me she remembered I only take pills with food, and I did have a suggestion of a memory of that. I also remember talking with my good friend on my cell phone, but only after she reminded me that she and I had talked.

When my brother dropped in to visit me Sunday evening, he found me to be, in his words, “completely out of it.” He called in the nursing staff, and they began to take my pneumonia seriously.

On Monday morning, they transferred me to the ICU and sometime that day they put me on the ventilator. I was in some kind of a bed where I was face-down for ten hours, then face-up for two hours. This pushed the framework of the ventilator into my face and left flat scars, one on each cheek. They also put some kind of a device that monitors blood pressure and some other things in my carotid artery. I had a blood transfusion for that. I also had some kind of procedure where the lung doctor went in and… well, I know it’s not called vacuuming out the lungs, but that’s what it reminded me of when I was reading the bill for my hospitalization later. I didn’t remember any of that, though. My brother had to tell me all this, or I discovered it months later on the bill (which was very long).

The hallucinations were terrifying. I was trapped in some kind of a world with rather triangular dimensions, and it was short, so I couldn’t stand upright. It would flip, and I would think I had escaped. But no; I was still there. This happened over and over.

When I woke up (sort of) on the following Monday, my brother (who had been there every day when I was out) had reached the end of his emotional strength and stayed home that day. It was the worst day he could have had such a thing happen. The first nurse I remember told me I was in the hospital and that I’d been sick. She was gruff. She obviously didn’t like me. She was wearing very heavy, orange-ish makeup, and she scared me. I was instantly convinced that I was being held prisoner. The other nursing staff were pleasant, but the damage was done. I tried, in my drug-induced state, to figure out how to escape. I somehow worked off the “puffer stockings” that are supposed to keep blood clots from forming. I don’t know how I thought I was going to get free of all the tubes, but I was really out of it, so I thought I could wait until nobody was paying attention and crawl away.

Then the next day my brother showed up. I wasn’t being held prisoner after all.

Then I had to get on with the reality of healing.

Wow, that was long and detailed. If you read through it all the way, I give you 5 brownie points!

🙂

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Wow!

@hopeful33250

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, “neruocognitive rehab” in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

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@spottedcat83 Please keep in touch with us. We would like to know when you find some help for your cognitive issues. Teresa

@spottedcat83 What a terrible, horrible experience. Thank God it is history. I hope things are much better for you now, but what memories! You must have nightmares about that time.
JK

@hopeful33250

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, “neruocognitive rehab” in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

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@spottedcat83 I’m glad to hear that the neuropsychologist was helpful and knew you were in distress. That is a great clue for you. Have you considered calling that neuropsychologist and asking for a referral for neurocognitive rehab? Teresa

@hopeful33250

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, “neruocognitive rehab” in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

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@spottedcat83 – I sent you a personal message in your account that you might find helpful!

@spottedcat83

I’m having a desperate time of it right now. Well, actually all the time, not just right now. I was in the ICU in 2014, on a respirator for eight days, I think. I had vivid hallucinations while I was on it. When I was coming out from under the anesthesia, my brother wasn’t there that day and I believed for over 24 hours of terrified semi-wakefulness that I was being held prisoner somewhere. I make jokes about it now, but it was no joke then.

When I started recovering, I couldn’t walk. I’m right handed, and my right hand wouldn’t function. I lost so much muscle, my thigh looked like it had a cute little waist.

I couldn’t remember the date, or even the year, for several days while I was recovering.

What’s causing the desperation now is the shape my brain is in. I’ve had significant memory loss. I had neuropsychological testing done twice, in 2015 and just this spring in 2017. Both tests showed mild cognitive impairment. I am working part-time, and the only reason I can do that job is because it’s twelve hours a week and very flexible. The depression monster and its friend the anxiety monster are constant companions for me. My brain won’t work for me anymore, but adding to the problem is that…

I
look
so
normal.

I know that I am disabled. I know that I ought to be on disability. But Iook so nicely normal, and I sound normal much of the time. I need help, and I know it. But getting help is almost impossible. I’m supposed to be seeing either a… what’s it called? Occupational therapist. And a speech therapist too. But how am I supposed to do that when my insurance sent me a letter saying that all but one of the therapies was denied? I’m supposed to call them back and see if they were approved. Then I can maybe do something if they’re not approved. But I can’t remember to call them back most of the time. And even if I did, the mental fatigue is making me want to crawl back into bed, fall asleep, and just not wake up. No, I’m not suicidal; I mean literally, I don’t want to wake up. I just want to sleep, where I don’t have to deal with all this overwhelming stuff.

I need help with disability stuff, but since I look normal, or maybe because social workers don’t have time for people who look normal on the outside, or something, nobody is offering to help me. I don’t even know who to ask anymore.

Are there specialists somewhere to help people like this? My life has been pretty much ruined, and yet I’m supposed to just get myself together and get myself a full-time job so I won’t be worrying about living on $600 per month or less.

I feel like I’m being pulled under. I have a very few friends, but they’re not close enough to help. I share a house with my brother, but he has his own set of problems. (We come from a family with at least one depression monster, or one anxiety monster, or one PTSD monster, and often multiple monsters, which complicates anything that comes our way.)

Help?

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Yes! There is a group from Harborview hospital who are members of our THRIVE collaborative through the Society of Critical Care Medicine. Here is the website for THRIVE for more information (and other resources as well!): http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx

Let me know if you want more info!

Has anyone that has been in the hospital, or ICU suffered from delirium? I would like to hear from you as I had delirium for 4 days while I was in the hospital having a knee replacement. It was awful and I would like to share it.
Marie (marield65)

@marield65 Marie, for some reason your name is not popping up in the drop down so I hope I have the spelling correct.

I too suffered from some delirium after my knee transplant in June 2013. Mine was only on the day of surgery. I tend to have to urinate frequently and when my husband was there I kept trying to get out of bed saying I had to go to the bathroom. He would remind me that I couldn’t and I realized that, then shortly after we would repeat the whole thing. I was overall a bit confused too. Thankfully though, mine lifted by the next day. I believe that everyone’s body is different and that those effects are from the anaesthesia which for some people takes longer to clear out of your body. Other medical conditions can contribute to being more susceptible I know.
It really is horrible to suffer from delirium. I had it prior to transplant because when your liver is not functioning well and filtering like it should toxicities can get to your brain and cause serious delirium. It was very depressing and having participated in a couple of these message boards I have come to realize that many people had it much worse than I did. I still shudder to think of how awful it was. I hope if you have to have any other surgeries that this won’t happen to you again.
JK

@spottedcat83

So I’m dropping back in to give you all a bit of the back story.

I was in my late 40s at the time and had always been a relatively healthy person. I’d never been really sick, to where I’d needed to be hospitalized.

I had a very stressful spring and summer in 2014. I took on a new job, and it didn’t work out. I went back to working part-time, but I had a hard time at that too. In the fall, I went to visit a good friend of mine. Her son has emotional problems, and my visit was rough on me, because he was acting out quite a bit while I was there. When I flew home, I got a sinus infection. It got worse, to where everything just smelled… bad. I went to a doctor, and he agreed that I had a sinus infection, but thought it was too early to give antibiotics, and he advised me to make another appointment if the infection didn’t go away. That was Monday, I think. By Friday, I was really quite sick, and on Saturday, after talking to a consulting nurse, I called my brother on his cell phone and asked him to come home and take me to the ER.

I was diagnosed with pneumonia, and the ER doctor was considering sending me home, but decided to keep me overnight for observation. But while I was in the ER, I asked to lie flat because my back hurt. (Not a good idea, in hindsight.) Then I got a wave of nausea, and I vomited, and I aspirated some of the vomit.

I remember leaving the ER for a regular hospital room. I don’t really remember arriving at the room, but a nurse I talked with later told me she remembered I only take pills with food, and I did have a suggestion of a memory of that. I also remember talking with my good friend on my cell phone, but only after she reminded me that she and I had talked.

When my brother dropped in to visit me Sunday evening, he found me to be, in his words, “completely out of it.” He called in the nursing staff, and they began to take my pneumonia seriously.

On Monday morning, they transferred me to the ICU and sometime that day they put me on the ventilator. I was in some kind of a bed where I was face-down for ten hours, then face-up for two hours. This pushed the framework of the ventilator into my face and left flat scars, one on each cheek. They also put some kind of a device that monitors blood pressure and some other things in my carotid artery. I had a blood transfusion for that. I also had some kind of procedure where the lung doctor went in and… well, I know it’s not called vacuuming out the lungs, but that’s what it reminded me of when I was reading the bill for my hospitalization later. I didn’t remember any of that, though. My brother had to tell me all this, or I discovered it months later on the bill (which was very long).

The hallucinations were terrifying. I was trapped in some kind of a world with rather triangular dimensions, and it was short, so I couldn’t stand upright. It would flip, and I would think I had escaped. But no; I was still there. This happened over and over.

When I woke up (sort of) on the following Monday, my brother (who had been there every day when I was out) had reached the end of his emotional strength and stayed home that day. It was the worst day he could have had such a thing happen. The first nurse I remember told me I was in the hospital and that I’d been sick. She was gruff. She obviously didn’t like me. She was wearing very heavy, orange-ish makeup, and she scared me. I was instantly convinced that I was being held prisoner. The other nursing staff were pleasant, but the damage was done. I tried, in my drug-induced state, to figure out how to escape. I somehow worked off the “puffer stockings” that are supposed to keep blood clots from forming. I don’t know how I thought I was going to get free of all the tubes, but I was really out of it, so I thought I could wait until nobody was paying attention and crawl away.

Then the next day my brother showed up. I wasn’t being held prisoner after all.

Then I had to get on with the reality of healing.

Wow, that was long and detailed. If you read through it all the way, I give you 5 brownie points!

🙂

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@spottedcat83 I just read your post – what an incredible experience – I’m so glad to hear that you healed can share it with us. Teresa

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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@marield65, I did find this link from Mayo Clinic Patient Care and Health Info / Disease and Conditions. I think you will find it interesting reading. You might want to share it with your family members.
http://www.mayoclinic.org/diseases-conditions/delirium/basics/definition/con-20033982
Rosemary

@marield65

Dear Content and Well: You are my answer to my prayer. Since April I have been trying to find someone who went through the delirium. All I heard from were people who were caretakers, and my family, to tell me what people do when in delirium.
You don’t know what a Godsend you are because this is something that one has to go through for anyone to believe it. I GOT mad at my husband for not coming to visit me in the hospital, but he was there everyday, I just didn’t see him when I was in this state, or remember it, but he said I talked to him and answered all his questions and I was very upbeat and happy (hyper-delirium) and all I wanted to do was get out of bed and walk. And I wouldn’t believe them when they said I had a knee replacement, I told them I had back surgery. (I was in denial that I need knee surgery, and I had 5 back surgeries, one of which was 4 months before the knee replacement). I don’t remember this either.
I do remember falling. My feet got tangled up in the sheets when I climbed out of bed when a nurse yelled at me, and I fell on my knees to the floor. They took xrays and I was ok. This woke me up from the delirium but mind was all jumbled. They were going to tie me to the bed, which is the worst thing to do for a delirious person because they are scared to begin with, but they had a nurse with me 24 hrs round the clock.
A lot of funny things happened in my mind and what I did, but when I came to, it was the most God Awful thing that has ever happened to me.
Now I might have to have more back surgery and I don’t know what to do. I am learning everything I can about this, and at the hospital, they think it was the DiLaudid they gave me for pain, and the older you get ( I am 70) the less you can metabolize the medication. But I think it was the anesthesia also. I have all my records and will inform the Doctors involved, and the hospital, what meds I took, and what kind of anesthesia I had, so this doesn’t get repeated, but you cannot stop it from happening again, all you can do is inform and learn and keep yourself healthy. I was also anemic at the time, and maybe dehydrated.
I’m so glad you wrote to me, keep writing if you feel like it, and maybe we can help each other. Thanks for reaching out.
Marie
By the way, how did you find me ? I been writing to all the sites to find someone who has had this. Thanks so much. God Bless.

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@marield65 You were in the updates that I get in email, that was how I found you.

Your delirium was much worse than mine after my knee surgery. When my husband would remind me that I couldn’t get up I would sort of laugh — sort of a “what was I thinking”, but then a bit later we would go through the same thing.

I can totally sympathize with you though because your delirium was more like what I had with HE from cirrhosis. That has left me so shaken that I have a constant fear that I might be early Alzheimer’s. I don’t think I could deal with that diagnosis.

I have been told that there is a lesser anasthesia than General Anasthesia and while I had cirrhosis I was hoping I could get my knee done but if so I had requested NO GENERAL ANASTHESIA. The ortho surgeon said that would be fine.
JK

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