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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.

Annie Johnson | @andreab | Jul 19, 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.

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@2011panc There is research out there to support that memory issues could be related to hepatic encephalopathy (HE). It is common to hear that these memory issues are often interpreted as "aging" when in reality the difficulty may stem directly from previous serious or critical illnesses. You may find more directed answers from a gastroenterologist or a provider who specializes in the liver. Many times the recommendation will be to focus on prevention of recurrence of the hepatic encephalopathy through diet, medications, etc. Other times, working with an occupational or speech therapist may be suggested to focus more directly on memory issues. Do you have a provider that you see specifically for this issue?

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MPH | @muriel66 | Aug 6, 2017

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that 'septic encephalopathy' has a 'long-lasting cognitive and depressive disturbances in patients after the sepsis resolves'.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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4 replies
2011panc | @2011panc | Aug 8, 2017
In reply to @muriel66 "I have again entered this site because of ongoing mental and emotional responses to suffering severe..." + (show)
@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that 'septic encephalopathy' has a 'long-lasting cognitive and depressive disturbances in patients after the sepsis resolves'.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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Thank you for coming here to share your story and look for understanding and answers. I am encouraged that you are working with a psychologist and continue to look for answers and solutions for what bothers you. I am not an expert in anything, so I will just share about myself, my thoughts and my impressions. In your case, I believe your current emotional/mental status is directly related to your physical events and ongoing difficulties. I am 6 years post-transplant (only one)and had a difficult first year with diminishing difficulties each year that passes. Your issues have been much more extreme than mine were, so I am not surprised that you are still suffering. My suggestion to you would be to also look into some grief counseling. After all, you have experienced the "death" of your health and a near-death experience, which you probably have not addressed as a loss and something you grieve. I also continue to look for answers, in my case I am trying to find a definition for my loss of brain function. Since I cover mine well, there is little interest in addressing the issue. However, like you, I am curious and want to know. Without a diagnosis I cannot find out what to expect and what I may be able to do to lessen any negative impacts of my mental status.
I use a great many stress-relievers (as well as medications) to manage my stress, depression and anxiety. Here is some of my list: meditation, yoga, prayer, research, journaling, talk therapy, attention to diet/nutrition/physical health, and exercising to regain core strength. I do not use all every day, or for every situation. I try one at a time until I can get myself in control enough to maintain my most 'normal' self.
It is hard. Many people do not understand or know. They do not matter. They do not need to understand, they just need to accept. I had to work hard to accept myself and my limitations. It never goes away, but it does get easier over time. You are now on my prayer list for acceptance, healing and comfort. Blessings on your path.

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Annie Johnson | @andreab | Aug 8, 2017
In reply to @muriel66 "I have again entered this site because of ongoing mental and emotional responses to suffering severe..." + (show)
@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that 'septic encephalopathy' has a 'long-lasting cognitive and depressive disturbances in patients after the sepsis resolves'.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

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I would like to pull in some previous participants to this particular conversation. Specifically @alyric, @spottedcat83, @crhiggins, @rsinger22, @baceman - I feel like your previous conversations have similarities to what @muriel66 has shared with us. Is anyone willing to again share a similar story or a few words on what has or has not worked for them in their experience with recovery from critical illness?

REPLY
MPH | @muriel66 | Aug 17, 2017
In reply to @muriel66 "I have again entered this site because of ongoing mental and emotional responses to suffering severe..." + (show)
@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that 'septic encephalopathy' has a 'long-lasting cognitive and depressive disturbances in patients after the sepsis resolves'.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

Jump to this post

Thank you, Rosemary. Your suggestions assist me. After the first experience of septic shock, I grieved. After the second experience, I have anger and lethargy. The stress relievers you mention are ones I utilize. When I was at Mayo in 2017, I was asked in occupational therapy to list all the ways to nourish well-being.
The hardest part for me is accepting my limitations. Because I was a very motivated person prior to two experiences of septic shock, it is difficult for me to accept my weariness. I feel as though I am in an empty waiting room for an endless amount of time. I do make a point of seeing weekly each of my closest friends. My husband is the best daily companion in this journey.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 17, 2017
In reply to @muriel66 "I have again entered this site because of ongoing mental and emotional responses to suffering severe..." + (show)
@muriel66

I have again entered this site because of ongoing mental and emotional responses to suffering severe septic shock after surgery in March 2016; and septic shock after surgery in April 2017. My 2016 Mayo hospital summary indicates i experienced metabolic encephalopathy.

I wonder if my mental/emotional experiences are related to septic shock and/or to post-intensive care syndrome. I have read that 'septic encephalopathy' has a 'long-lasting cognitive and depressive disturbances in patients after the sepsis resolves'.

I have heightened depression and heightened anxiety while recovering. For a year I saw and now continue to see a psychologist. The psychologist is very insightful, but I am not sure he is educated in the affects of severe septic shock on the brain and in post-intensive care syndrome. Thus, I wonder if this website can provide me with additional insights.

Basically, I am having difficulty adjusting to changes in my general sense of well-being since March 2016. Recovery was complicated by the reality that the severe septic shock resulted in my sudden retirement, since my physical recovery is extensive. My general well-being also has been affected
by the second experience of septic shock.

M.H.

Jump to this post

@muriel66, I am pleased to read that you are finding some ways to move forward with your life. It is difficult to accept limitations that we can be burdened with. I would like to thank you for your kind words, and I wish I deserved them, but I believe that @2011panc is the one who responded with those helpful suggestions. She is an amazingly strong person, just like you are.
Hugs,
Rosemary

REPLY
Marield65. Marie | @marield65 | Aug 17, 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.

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To content and well. This Marie (Marield65). What did you have when you had HE from cirrhosis? What is HE? I have more questions but I won't hit you with them all at once. Thanks...

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 17, 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.

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@marield65, When you want to direct your question to a particular individual. you can highlight @name. Then copy it into your text reply. That way he/she will get a notification about the post.

@contentandwell, I want to be certain that you see the above question from Marie.
Rosemary

REPLY
Marield65. Marie | @marield65 | Aug 17, 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

Thank you for your help to add the @with the name to make sure it notifies who you want the message to go to. That a big help. Marield65 

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

@marield65 Marie, during the worst episodes I would be confused, extremely so, and non-sensical. I would put clothes on backwards, get a glass of water and then a few minutes later get another glass of water with the first one still there, lots of things like that. Even when I was having an episode that was did not leave me confused I was not myself. I lost my appetite and just wanted to sleep. I remember trying to figure out how to use the TV remote -- it was a brand new TV so part of that may have been unfamiliarity still. Thankfully none of my episodes came on quickly without warning. If I was out and felt the slightest possibility that I might be getting one I would get right home. The vast majority of times I was fine but at least once I did the smart thing. I picked some friends up at the airport and was supposed to go to dinner with them but my stomach hurt -- always a pre-episode symptom with me -- so I dropped them at their home and went home myself. Sure enough a few hours later I started getting confused.

The absolute worst episodes left me totally out of, one time I was unresponsive for hours which caused my husband to get an ambulance and have me brought to the hospital (I would not go willingly, I probably would have been a problem if the two of us were in the car). When I was in the hospital they would ask me questions to determine how my memory was functioning, like who is the president (I answered Bush, wrong of course) and what day it was. I had no idea what day it was but as I told them I was brought to the hospital totally out of it and put in a room with little or no outside input so of course I had no idea! I learned to check my Iphone in the morning to see the date and day, so I was with it enough to know strategies. I also was with-it enough to be aware of things, like the EMT said something and I corrected his grammar! Of course I would not do that normally simply because it would be rude, but at least I was aware enough to recognize his error.

Please just ask if you want to know anything else.
JK

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