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

Posted by Colleen Young, Connect Director @colleenyoung, Jan 13, 2017

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.

JK | @contentandwell | Aug 19, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@rosemarya Rosemary, I am still having trouble with certain names, for instance I just did a response to @marield65 and that was not picked up.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 19, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@contentandwell, JK, I see a response that you made right above your 'still having trouble' post. Is there another one?
Sometimes there is a time lapse before it shows up. Get back with me, if issue continues.

REPLY
JK | @contentandwell | Aug 19, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@rosemarya Rosemary, when I put the name in it did not appear as if it was being recognized but I see above that it did put it in blue so I assume that marield65 has gotten it or will get it. Usually when I put the name in the name appears below the response box.
JK

REPLY
Marield65. Marie | @marield65 | Aug 19, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@contentandeell, this is Marie (Marield65) I hope I did this right by putting your name with the @sign.
I wish we could date our replies because I see your replies and that I haven't picked them up because I try to stay on top of my mail.
I have been ill the past 2 weeks but I think I kept up with the mail, but I thought I had a virus and it would run its course, but of course with me, nothing is easy. I would feel good then I would do something and then feel so tired I wanted to just lay over and die, and this went on for 9 days, then on the 10th day I went to the doctor. I have a sinus infection but it started in my stomach and worked its way up to my chest and sinuses. Im starting to feel better but I tried to ride it out but I have a low immune system and have a hard time fighting infection. If you are into medical terminology what I have is a big word but with me just a minor problem. The name is hypo gamma globulin anemia. It means low white blood cells. It is the white blood cells that fight infection.
But I want to thank you for getting into your delirium with me, it probably was not an easy thing to do but I appreciate it so much because I always felt so alone with it and no one understands what I am trying to say that I went through.
I just watched the live show of Jimmy Buffet at the xfinity center in Mansfield Massachusetts and now I am very tired but I wanted to get this email to you because it is still a little confusing to make sure that you get this. I wish we could be notified when The receiver gets the reply.
If I have any more questions regarding the delirium I will let you know. Thankful to you for offering.
Marie.

REPLY
Marield65. Marie | @marield65 | Aug 20, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@rosemarya Rosemary, i don't know if I did it right,but I just sent a content and well, a long post and I didn't see her name in blue and I want to make sure she gets it. Can you please check it ? Thank you Marield65 Marie

REPLY
Marield65. Marie | @marield65 | Aug 20, 2017
In reply to @2011panc "@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is..." + (show)
@2011panc

@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.

Jump to this post

@2011panc. This is Marield65. What does HE stand for. Thanks. Marield65

REPLY
Kate Heise | @katherinejhe | Aug 20, 2017
In reply to @2011panc "@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is..." + (show)
@2011panc

@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.

Jump to this post

@marield65 Hepatic encephalopathy in this case.

REPLY
Marield65. Marie | @marield65 | Aug 20, 2017
In reply to @2011panc "@andrehab, can HE damage the brain so that certain memories (though known) cannot be stated? Is..." + (show)
@2011panc

@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.

Jump to this post

@katherinejhe, Kate. This is Marie Devlin. Thank you for answering my question. Marield65, Marie Now I know what HE. Is.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 20, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

Hi @contentandwell and @marield65,
You are both using the @mention function correctly. The blue hyperlink only appears after you post your reply. If the name is spelled incorrectly, it will not link. By @mentioning another member, you can be assured they will get an email notification that you mentioned them. If they are participating in this discussion, they will get a notification even if you don't @mention them, but it helps to address the person when you are specifically talking or replying to someone.

Marie, the messages are dated. If a message is timestamped with minutes, "22 minutes ago" or " 3 hours ago", then that message occurred within the past 24 hours (today's date). Over 24 hours old and the message will have a date.

REPLY
JK | @contentandwell | Aug 20, 2017
In reply to @marield65 "Dear Content and Well: You are my answer to my prayer. Since April I have been..." + (show)
@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.

Jump to this post

@colleenyoung Thanks Colleen, what I was actually was referring to is that when you put the @ sign in and then the member's name the matching names appear below, which to me is sort of a reassurance that you have spelled that name correctly.
I realize that they would get notified anyway but sometimes when the responses are many it helps to look first at the ones that mention you specifically.
Also, just because some people may not realize this, you do not need to identify yourself in your message, the person who posted it is mentioned above the text.
JK

REPLY
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