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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.

JK | @contentandwell | Apr 3, 2017
In reply to @janicepike "I guess all the tubes still inserted. But they are extraordinary spectacular at getting you moving,..." + (show)
@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 just googled it with your term, and you are right, just the spelling is incorrect. It is a "Peripherally Inserted Central Catheter", PICC line.
Thanks. 🙂
JK

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Annie Johnson | @andreab | Apr 3, 2017
In reply to @crhiggins "I found myself in ICU following a laparoscopic Hystorectomy back in January 2010. What I thought..." + (show)
@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 have you found anything in particular that has helped with either your sleep or memory difficulties?

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Annie Johnson | @andreab | Apr 3, 2017
In reply to @mbau "I am so glad I found this forum/thread! I thought, until now, that I was the..." + (show)
@mbau

I am so glad I found this forum/thread! I thought, until now, that I was the only one who suffered from this! And it's such a relief to give it a name, instead of thinking that I am going "crazy"!

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@mbau, what were you able to relate most to on this forum? Has there been any resource that you have found that has helped you with your difficulties?

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Annie Johnson | @andreab | Apr 3, 2017
In reply to @baceman "Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my..." + (show)
@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 a year might sound like a lot of time, but when it comes to recovery from critical illness it really is only a minute in a lifetime. It might be helpful for you to able to connect with others with similar experiences. Have you tried a peer support group or considered attending one?

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Annie Johnson | @andreab | Apr 3, 2017
In reply to @mouse355 "Hi everyone. For seven months now I have been searching for something and I just don't..." + (show)
@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 want to make sure you know you are not alone with what you are experiencing following everything you've been through. I've recently posted on that exact topic at: https://connect.mayoclinic.org/discussion/am-i-alone-in-this/. It can also be very helpful to meet others who share similar stories. Have you ever considered attending a peer support group to help you work through some of this?

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mitchwsu | @mitchwsu | Apr 4, 2017

All, as humbled as I am with the stories of pain and loss, I am even more moved by the hope and resilience embedded within your experiences. We are attempting to get a PICS support group started where folks can share their experience, strength and hope with each other in person. We will be meeting at The Pantry at Kutzky Market (Forager), 1005 6th St NW, Rochester, MN, the third Monday of each month from 2-3 pm. Coffee and refreshments will be provided. I hope to see you there!

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rsinger22 | @rsinger22 | Apr 4, 2017
In reply to @baceman "Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my..." + (show)
@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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Unfortunately I can relate to your story. I had an operation and ended up on a ventilator in the ICU. Spent 33 days there. This was 11 years ago and still haunts me. Possibly because I had several operations since and still worry it could happen again.
I have been going to therapy the last year and it has really helped. I feel like people that do not go through do not get it and it used to frustrate me. Now I try and control what I can. Any advice is appreciated

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suzyann | @suzyann | Apr 4, 2017

Hello,

I'm considered a trauma patient. December 2013, I was on my way to work and was hit head on by a sleeping Drive (MVA). I do not remember much and was flown by helicopter to a Trauma 1 medical center. I was in a coma for a month and in rehab facilities for 9 months. My injuries were extensive. Broken pelvis, TBI, damaged abdomen/bowel, many broken or fractured bones, blood clots, and many issues. This was three years ago. After many surgeries, rehab, and now back in rehab to walk without a walker. My biggest issues have been retraining of bowel and bladder and I'm still going from one extreme to another in this area. Other issues are with family members not understanding the severity, which I'm trying to overcoming issues with counseling. They were there in the beginning and now are estranged. I'm trying to rebuild my relationships with the ones I can. I still at times have some memory loss. Doctors consider me a miracle, while the daily pain and struggle remind me of where I'm at today.

REPLY
2 replies
Annie Johnson | @andreab | Apr 4, 2017
In reply to @baceman "Wow... a year ago I suddenly developed severe nec pain and lost all feeling in my..." + (show)
@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...

Jump to this post

@rsinger22 There isn't any set time limit on recovering from critical illness. Especially when you have repeat health issues that bring you right back to the worst times. A physician who I work closely with likes to refer to post-intensive care syndrome as "PTSD of the ICU". Having to undergo multiple follow-up procedures and/or surgeries can definitely cause anxiety and worry. You mention that you have been going to therapy. What do you find to be the most helpful from therapy?

REPLY
Annie Johnson | @andreab | Apr 4, 2017
In reply to @suzyann "Hello, I'm considered a trauma patient. December 2013, I was on my way to work and..." + (show)
@suzyann

Hello,

I'm considered a trauma patient. December 2013, I was on my way to work and was hit head on by a sleeping Drive (MVA). I do not remember much and was flown by helicopter to a Trauma 1 medical center. I was in a coma for a month and in rehab facilities for 9 months. My injuries were extensive. Broken pelvis, TBI, damaged abdomen/bowel, many broken or fractured bones, blood clots, and many issues. This was three years ago. After many surgeries, rehab, and now back in rehab to walk without a walker. My biggest issues have been retraining of bowel and bladder and I'm still going from one extreme to another in this area. Other issues are with family members not understanding the severity, which I'm trying to overcoming issues with counseling. They were there in the beginning and now are estranged. I'm trying to rebuild my relationships with the ones I can. I still at times have some memory loss. Doctors consider me a miracle, while the daily pain and struggle remind me of where I'm at today.

Jump to this post

@suzyann I am really glad you found this conversation and am so inspired by your strength to be where you are at today. You bring up a point that @rsinger22 mentioned "I feel like people that do not go through do not get it ". Unless you have personally experienced critical illness/injury, it is difficult to maybe impossible to fully be able to empathize with the person who has. This is such a common conversation that previously critically ill/injured people are having. Once the physical injuries of the trauma are improved, many people think you are all better. But there are injuries that one is unable to see - and those can be very long lasting. Have you participated in support groups, counseling, or anything else to attempt to make this connection with your family members?

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