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?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

@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

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@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

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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

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

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@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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@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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@rosemarya Thanks Rosemary. That is a topic I would like to pursue also. Will do that when I have more time, I am blasting through these messages because I have a lot to do right now.
JK

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@baceman

Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night... for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn't put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don't remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can't stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I'm staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can't talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I'm afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface... the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don't know what else to say...

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@elizabethbryant Hi Elizabeth, I just realized that it has been a while since we heard from you. How are you doing? Teresa

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@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is there any way to recover or treat this type of deficiency? Since my episode of HE I have recovered much of my verbal communication skills, yet my speech is slower and at times I cannot come up with the word I want to use. My PCP dismisses this as aging, but I am sure it has more to do with the episode of HE. Can you help me find resources to research, identify and possibly treat my situation? Thank you for any help you can provide.

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@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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I might have to have back surgery and I will bring it up to the doctor about the NO General Anesthesia. I will let you know how I make out. I am scared to death to have another surgery.
Thanks so much. Marie

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@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, @rosemarya sent you a great resource about delirium. I am going to attach some additional links to resources that I think you might find valuable:
https://connect.mayoclinic.org/newsfeed-post/post-icu-syndrome-tedx-talk/
http://www.icudelirium.org/patients.html
http://www.myicucare.org/Thrive/Pages/Find-In-Person-Support-Groups.aspx

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