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?

@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, Thank you for sharing your story. It is not uncommon for people to not remember their ICU stay. So much happens during a – usually – short period of time. I am glad that it sounds as though your recovery is going well at this point. Did you work with Physical and/or Occupational Therapy either during and/or after your hospital stay?

@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 glad you found this conversation. Your description of your experience is essentially the definition of post-intensive care syndrome or PICS. We have started a page for PICS with more information added often that you can find at https://connect.mayoclinic.org/page/pics/
You went through so much. It can take months to years to process the events surrounding your critical illness. This forum, and all of us are here to be ears, hearts, and support for you.

@baceman

Wow… a year ago I suddenly developed severe nec pain and lost all feeling in my left arm. Saw an orthoneurosurgeon ad was found that I have a disease that turned my spinal Ligament to bone forcing the discs to crush my spinal cord.

Surgery was scheduled for the following week but I never lasted that long. The pain was so great and the condition so bad that I lost function of my left arm and leg and that was the last thing I remembered for a month. Wife took me to the ER and they did surgery the same night… for six hours.

After surgery, I started to bleed after the removed the breathing to to the point where they couldn’t put the tube back in and they performed an emergency tracheotomy to save my life. During that, they ended up resuscitating me for the first time. Off to the ICU and now am totally paralyzed. Two days later I start bleeding again and theybtrsucitate me for the second time.

I was in the ICU for 3 1/2 weeks. Don’t remember any of it. My issue is I am a clinician who practiced in the ICU so when I came to, it all hit me. I cried for weeks,

I am a year out and still partially paralyzed on my left side. I can’t stop talking about my issues to people. Even perfect strangers. I cry at the drop of a hat. I went back to work full time only to find that I cannot physically do the work due to the pain.

My wife just wants me to stop talking about it but I am consumed with it. I know that I have t fully dealt with it. Now I’m staring down the barrel of having to have another surgery and I am scared to death (pardon the pun). Can’t talk to my wife about it and my family and friends are tired of me talking about it.

I am seeing a counselor (just started). The ring that bothers me the most is this gap in time and memory. And the residual paralysis and pain is t helping. I’m afraid of losing my job and the change all of this means in our lifestyle. Scared only scratches the surface… the nightmares have pretty much subsided and I am filling in the gap in time with fantasy. I just make it up. I don’t know what else to say…

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@baceman, thank you for being here and starting your conversation with us. Your critical illness and the events surrounding all of it have definitely been life-changing for you. We have started a page for post-intensive care syndrome (PICS) with information updated often which you can find here: https://connect.mayoclinic.org/page/pics/#/!tab=newsfeed. I think you might find some very helpful information posted. It is so normal to be very emotional following the intense experiences you have gone through. Seeing somebody for this can be an essential part of recovery. If needed, you can bring information from our Page with you for these conversations as it is always helpful for other professionals to have some background information on PICS. Please continue to follow with us on this forum. We also have an in person support group available if you are local in Rochester, MN. More information on that can be found here: https://connect.mayoclinic.org/page/pics/#/!tab=resources-50

@mbau, No you are not “going crazy”! I just posted on this topic on our Page. You might find it interesting: https://connect.mayoclinic.org/discussion/am-i-alone-in-this/
Thank you for joining our conversation! I hope you can find what we all share together here helpful in your story.

@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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Hello,
I have had 4 surgeries at the Mayo Clinic and following each surgery I had vivid nightmares, similar to what you have described. I served in Iraq and have spent many years working in law enforcement, but have never experienced what I would consider PTSD. However, following each surgery I would have flash-backs that were vivid and seemed real. I could not sleep through the night because of how horrific the nightmares were. I went to a psychiatrist and he prescribed 20 mg of Paxil per day. Within a few weeks everything went back to normal; three of these surgeries were in 2012. March 8th of this year I had surgery again for a permanent end ileostomy and was admitted to ICU. Unlike the previous surgeries the nightmares and flash-backs started before the surgery. I went to a Psychiatrist and he prescribed 20 mg of Paxil per day, which stopped the nightmares and flashbacks, but didn’t help with the depression and anxiety, so a went to a therapist. The therapy sessions helped get my depression and anxiety under control. After the surgery the nightmares came, but were not as severe; probably due to the Paxil. I have continued my therapy sessions since the surgery. This week I have had no nightmares and I am feeling mentally and physically better than I have in about 2 years.

@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

@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

@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

Liked by qsam61404

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.

@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!

Liked by qsam61404

@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

@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.

@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

@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

@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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