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?

@plexiclone

Yes, October of 1999. I remember a lot of it. When I go to the same ICU with patients my heart rate goes into the 90's. There is a lot of things in our daily lives that never go back to normal. Accepting that and moving on to your new place in life can be difficult after you get out of the ICU. Most of us are terrified of being that sick again and we will do anything to not wind up in the ICU ever again. It can be doubly frustrating for your spouse because you can't do things at the same speed you used to for at least a few months. It's like being a child again as you re-learn things and work on your memory. Spouses and family members get as frustrated as you do when you aren't up to speed.

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You are correct, we remember it like it was yesterday. AND again you are correct, it takes months for a return to a "normal" state in health after a visit to the ICU.

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@colleenyoung

Hi @rsinger22 @tdes19 @ceci2814 @rook @1959 @dawn_giacabazi @mkf1 @soul @02121949 @mom2mba, I’d like to invite you to the new discussion group about Post-Intensive Care Syndrome. It’s a space where we can share the experiences of critical care, honestly and openly without judgement. Whether you were in ICU yourself or caring for someone who was in ICU, please join us. Pull up a chair and tell us a bit about yourself.

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Can I get added to the group. Going through this now with my dad and want to share as much info as possible w both my parents

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Welcome to the group, Melissa. I am happy to meet you. Can you share some information about what your dad is going through? What kind help can I help you with?

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@melissa3243

Can I get added to the group. Going through this now with my dad and want to share as much info as possible w both my parents

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To echo @rosemarya Welcome to the group @melissa3243. All you have to do to be included is start a conversation just as you have done! Also just make sure to click "Follow" on this Group so you get the latest updates. If you would like to share your story please feel free to do so. There have been many people who have joined this conversation and we can frequently connect you with others who may share similar experiences. It helps to know that whatever you are going through, you're not alone!

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@melissa3243

Can I get added to the group. Going through this now with my dad and want to share as much info as possible w both my parents

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Welcome to this group. Having a sick dad is not fun. Hope you can draw what you need from any and all of us.

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@andreab

To echo @rosemarya Welcome to the group @melissa3243. All you have to do to be included is start a conversation just as you have done! Also just make sure to click "Follow" on this Group so you get the latest updates. If you would like to share your story please feel free to do so. There have been many people who have joined this conversation and we can frequently connect you with others who may share similar experiences. It helps to know that whatever you are going through, you're not alone!

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We have been here at Mayo for two weeks! Six nights in the ICU! Now on on floor six Domitello (hope I spelled that right). We almost lost my dad last Wednesday when our local hospital failed to tell us for 24 hours after they knew that he was septic and had MRSA in his joints. We fought to have him moved knowing that they could not handle his situation. Dad is non weight bearing on both legs so now that the infection is under control we are dealing with bed sores and the fact he more than likely won't walk for a year. Any advice would be great. They want him transferred to acute level 1 care and we really don't have a clue. They put in a pic line and he will be on antibiotics for at least six weeks 🙁 ICU trama is real for us and him. We have been living in an Airbnb for two weeks (my mom and I). Just looking for supportband advice!

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@melissa3243

We have been here at Mayo for two weeks! Six nights in the ICU! Now on on floor six Domitello (hope I spelled that right). We almost lost my dad last Wednesday when our local hospital failed to tell us for 24 hours after they knew that he was septic and had MRSA in his joints. We fought to have him moved knowing that they could not handle his situation. Dad is non weight bearing on both legs so now that the infection is under control we are dealing with bed sores and the fact he more than likely won't walk for a year. Any advice would be great. They want him transferred to acute level 1 care and we really don't have a clue. They put in a pic line and he will be on antibiotics for at least six weeks 🙁 ICU trama is real for us and him. We have been living in an Airbnb for two weeks (my mom and I). Just looking for supportband advice!

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Melissa, You and your mother are to be commended for your determination in getting your dad to top level care. He is fortunate to have you at his side, and you and your mom are fortunate to have each other. That is a major blessing for you to be thankful for.
When I was transferred to ICU in an emergency situation, the medicl care team was focused on one thing only – to keep me alive. I was not even aware of all that was going on. My husband and sons, however, were living in each moment faced with strange medical equipment, medical terminology, and very real possibility of the dreaded outcome. It was hour-by-hour, day-by-day for them and it sounds to me like that is what you are going through now.
Now that he is moving out of ICU, talk to the doctor and the nurses. We found that by talking to my care team, and asking questions, that we were able to understand the whats and the whys of what was happening.
I'll be in touch later.

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@melissa3243

We have been here at Mayo for two weeks! Six nights in the ICU! Now on on floor six Domitello (hope I spelled that right). We almost lost my dad last Wednesday when our local hospital failed to tell us for 24 hours after they knew that he was septic and had MRSA in his joints. We fought to have him moved knowing that they could not handle his situation. Dad is non weight bearing on both legs so now that the infection is under control we are dealing with bed sores and the fact he more than likely won't walk for a year. Any advice would be great. They want him transferred to acute level 1 care and we really don't have a clue. They put in a pic line and he will be on antibiotics for at least six weeks 🙁 ICU trama is real for us and him. We have been living in an Airbnb for two weeks (my mom and I). Just looking for supportband advice!

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Melissa, This was postd 7 hrs ago.
Breaking it Down: Post Intensive Care Syndrome Wrap Up
https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

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@rosemarya

Melissa, This was postd 7 hrs ago.
Breaking it Down: Post Intensive Care Syndrome Wrap Up
https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

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Melissa I hated to leave the conversation the other day, but Oi needed to be somewhere away from my computer.
How are you and your mother doing?
I also want to ask how is your dad doing? He is the one that I can most relate to. I spent 5 days in ICU in Kentucky, and another 12 in critials conditiion at Mayo. For most of the first 10 days I have very little memory of what happened. Mostly random memories if events (sudden noises, being moved or lifted, needles and strange equipment, hushed voices/parts of conversations, faces that i still cannot identify, etc) After my hospital release while I was recovering, I asked my husband what had occurred during those 3 weeks. I remember how difficult it was for him to tell me about it. It was even more difficult because he and I had gone thru the same situation, but from different perspectives,. And it caused him much pain as I kept asking over and over again.
Have you considerd keeping a list of the events, the procedures, the people, the places tat your dad has had contact with during this time. If he ever asks, you will be able to provide him with it. A little peace of mind could be a huge gift for him.

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My husband has recently had numerous admissions to ICU following a cystoprostatectmy and missed paralytic ileus requiring subsequent emergency surgery for a pelvic abscess and peritonitis. He is now 16 weeks post initial surgery and now suffers from a pseudo obstruction resulting in frequent loose stools and excessive flatus with significant weight loss, weakness, anorexia and his quality of life is majorly effected. We cannot be sure if there is any chance this may ever resolve completely. He has become very depressed and anxious. It is difficult for him to remain optimistic and I believe he suffers from the PIC symptoms described. If you have any suggestions on how this may be dealt with it would be greatly appreciated. It has been a nightmare to date.

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@rosemarya

Melissa I hated to leave the conversation the other day, but Oi needed to be somewhere away from my computer.
How are you and your mother doing?
I also want to ask how is your dad doing? He is the one that I can most relate to. I spent 5 days in ICU in Kentucky, and another 12 in critials conditiion at Mayo. For most of the first 10 days I have very little memory of what happened. Mostly random memories if events (sudden noises, being moved or lifted, needles and strange equipment, hushed voices/parts of conversations, faces that i still cannot identify, etc) After my hospital release while I was recovering, I asked my husband what had occurred during those 3 weeks. I remember how difficult it was for him to tell me about it. It was even more difficult because he and I had gone thru the same situation, but from different perspectives,. And it caused him much pain as I kept asking over and over again.
Have you considerd keeping a list of the events, the procedures, the people, the places tat your dad has had contact with during this time. If he ever asks, you will be able to provide him with it. A little peace of mind could be a huge gift for him.

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@melissa3243

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@martha7979

My husband has recently had numerous admissions to ICU following a cystoprostatectmy and missed paralytic ileus requiring subsequent emergency surgery for a pelvic abscess and peritonitis. He is now 16 weeks post initial surgery and now suffers from a pseudo obstruction resulting in frequent loose stools and excessive flatus with significant weight loss, weakness, anorexia and his quality of life is majorly effected. We cannot be sure if there is any chance this may ever resolve completely. He has become very depressed and anxious. It is difficult for him to remain optimistic and I believe he suffers from the PIC symptoms described. If you have any suggestions on how this may be dealt with it would be greatly appreciated. It has been a nightmare to date.

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Hi martha7979, Welcome to Connect. I have not experienced any of what you are describing for your husband. But, I think that I can understand his feelings of depression and anxiety because of the length of time that he has continued to struggle post surgery. I can understand the fear of the unknowing if this will ever be resolved, because it reminds me of our (husband and me) pre-transplant state of mind.
Where is your husband now? Is he home? In hospital of care facility? What are the doctors telling him about his ability to regain any of his quality of life?

I want to invite you to take a look at the Discussion Groups on Connect – https://connect.mayoclinic.org/groups/ – because that is a good place to meet others who experienced similar health conditions as your husband. It can be comforting to talk to someone else who has gone thru a similar surgery. If you don't see one that is similar, you can begin a new discussion. That way others will be able to see it. If you want help to post a new discussion, let me know and I will help you.

How are you doing with all of this stress and uncertainty? On Connect there is a Caregiver Group where you, too, can meet others who are caring for their loved ones in a variety of difficult circumstances. I know that you will be welcome there.

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I just need to hear some experiences of life after Post Intensive Care Syndrome…please tell me I will be able to move forward from this someday! I have no history of depression at all and I just feel this terrible anguish that is consuming my inner life. It is so hard because on the outside, it looks like I am back to normal…but I am totally on autopilot, living out only one hour at a time. It is so painful to have people say, "looks like you are back to 100%" and "looks like you are doing so well" when I feel like a total mental and emotional mess. I have a hard time looking ahead and making plans, even a couple of days out. I just can't seem to find anything to look forward to. How did others in this group who lived through PICS find joy in their lives again? I have so much to be joyful about and grateful for, but I just don't feel joy. I have four young children that are counting on me for emotional support as they navigate life, but I am just barely surviving myself. Any advice?

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@amandacgrow

I just need to hear some experiences of life after Post Intensive Care Syndrome…please tell me I will be able to move forward from this someday! I have no history of depression at all and I just feel this terrible anguish that is consuming my inner life. It is so hard because on the outside, it looks like I am back to normal…but I am totally on autopilot, living out only one hour at a time. It is so painful to have people say, "looks like you are back to 100%" and "looks like you are doing so well" when I feel like a total mental and emotional mess. I have a hard time looking ahead and making plans, even a couple of days out. I just can't seem to find anything to look forward to. How did others in this group who lived through PICS find joy in their lives again? I have so much to be joyful about and grateful for, but I just don't feel joy. I have four young children that are counting on me for emotional support as they navigate life, but I am just barely surviving myself. Any advice?

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Amanda,

You can only live life one minute at a time. Some times what you feel is from escaping a near death experience as many who have put a post here have done. Just walk as much as you can and do somethings you love doing to relieve the depression. It takes time to heal, for me it was well over a year after my Quad bypass before I began to feel better.

I'll never forget when I was awakened during the first night and being asked to do things like write my name and indicate where I hurt. While I was awake for those few m minutes a second nurse stood at the foot of my bed and asked the first nurse what made my case so important and the first nurse told that other one he did not know why I was such a priority. I was laying there thinking this "Cuz, I was about to die you ID10T" but being intubated I could not shout at him to go about his own business. I was put back to sleep and my right hand was re-restrained so that tI did not attempt to remove the tubing from my mouth.

I went back to work after 3 months and wished I'd had far more time to recuperate. I just didn't have enough sick or vacation leave to stay home.

All of life is lived one minute at a time. One day you will suddenly notice the depression is gone. BUT…let your doctors know of your depression problems.

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@rosemarya

Hi martha7979, Welcome to Connect. I have not experienced any of what you are describing for your husband. But, I think that I can understand his feelings of depression and anxiety because of the length of time that he has continued to struggle post surgery. I can understand the fear of the unknowing if this will ever be resolved, because it reminds me of our (husband and me) pre-transplant state of mind.
Where is your husband now? Is he home? In hospital of care facility? What are the doctors telling him about his ability to regain any of his quality of life?

I want to invite you to take a look at the Discussion Groups on Connect – https://connect.mayoclinic.org/groups/ – because that is a good place to meet others who experienced similar health conditions as your husband. It can be comforting to talk to someone else who has gone thru a similar surgery. If you don't see one that is similar, you can begin a new discussion. That way others will be able to see it. If you want help to post a new discussion, let me know and I will help you.

How are you doing with all of this stress and uncertainty? On Connect there is a Caregiver Group where you, too, can meet others who are caring for their loved ones in a variety of difficult circumstances. I know that you will be welcome there.

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Thankyou @rosemarya ,
My husband is at home. His Dr's are unable to guarantee his problems will resolve. They tell him it will be 6 – 7 months before/IF he is likely to get anywhere near where he was prior to his complications. I have made an appointment today for him to see an Holistic GP with an interest in GI issues as fear given his ongoing loose stools and distended colon I suspect he may have malabsorption problems as he is having problems gaining weight. He remains rather anorexic althòugh that is improving slowly.
I shall check out the other groups.
Many thanks for your response and suggestions. X

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