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.

@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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@andreab I'm not sure if your response was to my post or to a different one, but I did have some PT in the hospital, followed by PT at home, then PT at a physical therapy place. Medicare allows PT in the home if the patient is "housebound" so I stopped that after a couple of weeks, I wanted to get out and the physical therapist agreed that I was overdue to get out and start doing things again.
The outside physical therapist is great, I went to him once before for my back. I didn't see him for long either because he would not have been able to justify more visits to Medicare.
I think I was offered OT but turned it down. I am not ever sure what they do in OT but I thought it was something I did not need.
JK

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@mouse355

Hi everyone. For seven months now I have been searching for something and I just don't know what it is. I had an elective surgery on Sept 7 that went horribly wrong. I'm still recovering, if that's what this is. I live at home with TPN each night to keep me alive. My abdomen is still healing with a wound vac from my seventh surgery since my original elective one. I was septic starting on Sept 8. I don't remember ever waking up from the first surgery. I don't think I ever did. I don't remember any of the rest of the month of Sept. There are bits and pieces, but I don't even know if they are real or not. I should be dead. That's what the Drs said. They had written me off....Left they room at one point and told my three young daughters I would not make it. They, along with the rest of my family, were in the room as they were trying to revive me. I don't remember any of it. Thank goodness. All I remember is darkness. Nothingness. When I became aware finally, I was paralyzed still from the meds. Couldn't walk or talk either because of the tubes in my throat. No one told me what happened so I was very confused as to where i was and why. Every organ in my body shut down, except my heart. That went into overdrive and they couldn't even slow it down.i guess I had several reasons to live. I still have many health issues, not even close to recovery. But, I can walk and talk again and I'm just now trying to make sense of it all. I was in the hospital initially for 68 days. Then again, off and on, since then. A week here. A few days there. Still confused. Still cry all the time. I have scars all over my body. They'll never fade. I'm still trying to make sense of it all.
Mouse355

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@mouse355 I am so happy that things are improving for you. You really have been through so much but it sounds as if you are now getting through it, thankfully. It's not always easy to be strong and to be hopeful but it sounds as if you are both.
JK

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@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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@qsam61404 First, thank you for your service.
I can only imagine how difficult it must be to have recurring nightmares. I was having occasional nightmares before my transplant. They would wake me up and my heart would be pounding. I wouldn't be able to get back to sleep for hours. They were so real too. One night I was sure someone was pounding on our front door but my husband never heard a thing. It scared the life out of me.

Thank God that this past week you have been feeling better. Hopefully you are beyond that hurdle and things will just continue to get better and better.
JK

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I found myself in ICU following a laparoscopic Hystorectomy back in January 2010. What I thought would be a brief stay at the hospital, ended up being almost three months hospitalized. After being taken to ICU,I was intubated, two days following surgery, my health was declining quickly. Kidney failure, sepsis, Pulmonary embolism, are amongst some of the complications. I was taken into surgery again, nine days after the initial surgery. I have struggled with sleep issues every since. I also have had pretty significant memory loss.

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@crhiggins

I found myself in ICU following a laparoscopic Hystorectomy back in January 2010. What I thought would be a brief stay at the hospital, ended up being almost three months hospitalized. After being taken to ICU,I was intubated, two days following surgery, my health was declining quickly. Kidney failure, sepsis, Pulmonary embolism, are amongst some of the complications. I was taken into surgery again, nine days after the initial surgery. I have struggled with sleep issues every since. I also have had pretty significant memory loss.

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@crhiggins, sleep and memory loss are very common amongst patients who have been critically ill. What you are experiencing seems to encompass more of the "cognitive" effects of post-intensive care syndrome or PICS. Memory loss and problems with thinking following critical illness can greatly affect a person's quality of life. Occupational therapists (OT) are very skilled at helping people work to regain cognitive function that might have been damaged from certain events - like critical illness. Working with an OT might be something worth mentioning to your primary care provider. More information on this and other topics related to PICS can be found at our Page: https://connect.mayoclinic.org/page/pics/#/!tab=newsfeed
In addition to this forum, we also hold an in person support group here in Rochester, MN if you are local. You might find it helpful to meet others who struggle with issues related to critical illness. More on that can be found here: https://connect.mayoclinic.org/page/pics/#/!tab=resources-50
Thanks for sharing your story with us!

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@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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@qsam61404, Welcome to Mayo Connect. Thank you for joining this discussion and sharing. I know that there are others who will benefit from reading this. It helps when we learn that we are not alone in dealing with these memories.
I hope that you continue to improve in health and in relief from the flashbacks and nightmares.
Rosemary

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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I did not have PT or OT following my transplant. I don't even remember having it in the hospital. Either my caregiver or the nurses were always available to assist me in walking, which was the only approved "exercise" for quite some time. Once freed to exercise I restarted my at-home program as much as possible.

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@andreab

After you or your loved one was transferred out of ICU and no longer considered “critically ill,” what was the one thing that surprised you the most?

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@2011panc I guess that was pretty much all they did with me too, along with making me go up and down the stairs. I have a two floor house so perhaps they do that only then. She was really good though and the following physical therapists I had, first at home and then at a physical therapy center were both absolutely wonderful.
JK

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@janicepike

I guess all the tubes still inserted. But they are extraordinary spectacular at getting you moving, and sitting up, eating, and going to the bathroom / with assistance.

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@janicepike I had something coming out of my neck. To me was like an IV but they called it something different. My sister and her husband came to visit me and I found out afterwards that she was stunned at it and asked her husband if he thought I know I had something coming out of my neck! I guess by then I had just gotten used to it so thought nothing more about it.
JK

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@janicepike

I guess all the tubes still inserted. But they are extraordinary spectacular at getting you moving, and sitting up, eating, and going to the bathroom / with assistance.

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For the life of me,now I can't remember the proper name . It's not a picline,but .....

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