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

Posted by @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?

REPLY

I am looking for others who have been on a ventilator and were able to get off and how their life is now. I was on a vent for a month, had a trache inserted after ten days which remained for an additional month àfter i got off the vent and am having several complications from the experience….foot drop, peripheral neuropathy in both feet, and nightmares. I posted more info on my wall if you want to read it. I am hoping there are others on this site who can relate to what I am experiencing now.

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.

Dear Rook, I am sorry to hear what you are going through. I have had several hospital stays that included ICU, but not nearly for the amount of time that you have been through. I do have nightmares at times that are so real and vivid that I am back at the hospital and no one can help me, I am constantly searching for my specific doctors but they are not there. They are frightening when they happen. I will read more about your experience. Thank you for sharing it.

I’m so glad that mayo clinic connect has created a space to talk about the stresses and consequences of being seriously ill. I have been personally affected by two family members that had ICU admissions. My grandmother is still struggling with physical debility and memory issues since her ICU stay – even years since her illness. My husband had a very brief stay in the ICU after a major health scare and I can tell you, even as a healthy young man, the stay traumatized him and affected him psychologically long after he recovered physically – it is something he will never forget.

I’m looking forward to hear others’ experiences, what works well to cope, and personal struggles and triumphs. No one plans for a stay in the intensive care, but those that find themselves there have to deal with how life changing the experience can be.

@kariulrich

Dear Rook, I am sorry to hear what you are going through. I have had several hospital stays that included ICU, but not nearly for the amount of time that you have been through. I do have nightmares at times that are so real and vivid that I am back at the hospital and no one can help me, I am constantly searching for my specific doctors but they are not there. They are frightening when they happen. I will read more about your experience. Thank you for sharing it.

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Kari, are you woken from these dreams and still feel the fear once you are awake? How do you deal with them? Have they become less frequent over time?

@ssrn

I’m so glad that mayo clinic connect has created a space to talk about the stresses and consequences of being seriously ill. I have been personally affected by two family members that had ICU admissions. My grandmother is still struggling with physical debility and memory issues since her ICU stay – even years since her illness. My husband had a very brief stay in the ICU after a major health scare and I can tell you, even as a healthy young man, the stay traumatized him and affected him psychologically long after he recovered physically – it is something he will never forget.

I’m looking forward to hear others’ experiences, what works well to cope, and personal struggles and triumphs. No one plans for a stay in the intensive care, but those that find themselves there have to deal with how life changing the experience can be.

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Welcome to Connect, Stephanie (@ssrn).
Were there any programs, support groups or counseling offered to your grandmother, husband or family post ICU? How has the experience affected you as well as your husband?

I wonder if you might have something to add to this discussion on Connect. Pat is concerned about cognitive decline in choosing surgery.
– Anesthesia types and effect on cognitive function in elderly persons http://mayocl.in/2jJpbZw

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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Rosemary-
Thank you for sharing part of your story. It’s reassuring to hear that the chaotic experience has faded some over so many years. How is your health since then? How is your husband doing? I’ve heard that memory loss and time gaps are common in people who are so seriously ill. Other than the passing of time what helped you get past it all?

@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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@ssrn, Welcome, and thank you for your reply.
Stepanie, I am happy that by sharing my experience that I can offer you some reassurance. That is the purpose of Connect.
First, my husband. He is still very emotional about this. He had tears in his eyes tonight when I had him proof read my entry. You, see, for him I believe it is more difficult. He had to stand there, helpless, and watch me as death became a real possibility. While I was so sick that I did not fully comprehend.
Me, I am doing exceptionally well. I had a different experience than most. I needed a liver transplant and the complications from my condition led to my hospitalization that I refer to. I did get my liver and kidney transplant and now am living a full healthy life.
One thing that really helped me get thru the memory thing is the Mayo patient portal; I have access to all my medical records. I have spent many evenings, reading my medical history that occurred after the air transfer to Mayo. And I have soaked many Kleenexes with my tears during the process. I do not have any medical records from the first 5 ICU days, and that does bother me.
I think that as I become involved in other activities, that I don’t feel a need to “go back there”. I do continue to my quiz husband, or my 2 sons who were with me at various times. And my sons are very uncomfortable with that, too.
I do have some new issues with my memory, and with processing information. I seem to get confused or off task more easily. So I keep lots of lists! I really don’t know if that is from surgery, or from medication side effects, or age.
Stephanie, How long ago has it been since your husband had his time in ICU? How are you doing?
Rosemary

@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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@ssrn, Stephanie, I want to share this with you.
This is what has happened to me after my reply yesterday: My well-thought-out-reply has stirred up the dust, so to speak, in my mind. Today I have experienced a “firestorm” of memories and flashes of events that occurred relating to my severe condition around the time and during my ICU care. My mind is racing everywhere. And tears are ready to flow. I thought that I was in control and had this all behind me, but my mind and emotions are telling me otherwise. This has not come on like this before. I wonder if this is anything like your husband has experienced or is afraid of experiencing.
Hugs and Strength,
Rosemary

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn’t start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

@elizabethbryant, Thank you for entering this discussion. The situation that I talked about was 8 years ago. I think that I, too, cried afterward, for no apparent reason. Then I would get my husband crying, because we had been through such an emotional event. I had always heard, from other people, that the drugs and trauma were part of it, but I really don’t know. Liz, how long ago was your surgery? Do you still have crying spells?
Sending you a hug, Rosemary

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn’t up for the situation
as he became confused and we think he had a stroke during my surgery days he won’t eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. “We light each others candle” with hope and helpful medical information.

@rosemarya

@elizabethbryant, Thank you for entering this discussion. The situation that I talked about was 8 years ago. I think that I, too, cried afterward, for no apparent reason. Then I would get my husband crying, because we had been through such an emotional event. I had always heard, from other people, that the drugs and trauma were part of it, but I really don’t know. Liz, how long ago was your surgery? Do you still have crying spells?
Sending you a hug, Rosemary

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I spent 33 days in the ICU in 2006. I had some more stats during the last ten years too. I still have a hard time when I sit and think about it or when other people talk about theirs or family experiences. I too am very emotional and will cry out of nowhere. I feel like no one understands and. Ow people do not even ask

@elizabethbryant

Sending you a big hug. My surgery was in April and I cried for no reason, the drama of it all and more surgery the doc said to come.
Then two weeks before Christmas my husband abandoned He wasn’t up for the situation
as he became confused and we think he had a stroke during my surgery days he won’t eat or drink. I turned to my faith in desperation. By the grace of God I was able not be moved emotionally when I had lunch with him and my grandchildren during Christmas. When you walk through this with the
ones you love, we are blessed. Sharing on this site. “We light each others candle” with hope and helpful medical information.

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@elizabethbryant, Thank you for the big hug that you send to all of us who read this message. And I send you a sincere thank you for sharing your powerful testimony of your faith and the strength that it has provided for you during your difficult journey.
I especially love what you said: ” Sharing on this site. “We light each others candle” with hope and helpful medical information.” That is our goal for our Connect conversations. We can share with others freely, without judgment. I am happy that you are part of our discussion. Rosemary

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