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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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 1, 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

Jump to this post

@mouse355, Welcome to Mayo Connect. Thank you for sharing your experience with us. On Connect we share our experiences and we learn from others who have similar experiences. We are here to listen and to support each other.
Your story and your determination are remarkable. Your body has a lot of recovering yet to do. It can be a slow journey. As far as the memory part, you are not alone. It is indeed frightening and bothersome. I believe that in time, as you continue to heal and become active that they will slowly drift to the background of your daily thoughts. My experience was 8 years ago during organ failure pre transplant. I have been able to fill in some memory gaps by talking with family members, but they really don't like to talk about that painful time. I was able to fill in some information through my medical records. I cried a lot early on. Even today, after 7 yrs, I still get emotional.
I send you peace and a hug, and strength for healing,
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 1, 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

@baceman, Welcome to Mayo Connect. You are in the company of others who are experiencing similar emotions. Here on Connect, we share our experiences, and we learn from each other. We support each other and offer hope. And we cry, too.
I have experienced the memory gaps from my time in ICU while critically ill. My family and loved ones are reluctant to discuss the events because , I believe, it is too painful for them. I think that while I was the patient, I was also 'out of it' so I was not really aware of much. On the other hand, they were very much there 24/7. They were the ones responsible for the difficult decisions, and the stressful waiting.

I hope that you and your counselor will be successful in achieving some relief for your fears and nightmares. I hop that you will be able to move toward a more normal life.
Sending you a hug and peace and strength,
Rosemary

REPLY
Liz1 | @elizabethbryant | Apr 1, 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

It is good you are talking to someone about it. I have not been through that much talking to others to much the entire situation makes everyone avoid they are not trained to help you. Best to talk to counselor or therapist to help you work through it as long as
they share the Christian faith. You need someone to allow you to cry, I did have my surgery and you have been
through a great deal of fighting for your life traumatic situations. You need to talk and its o.k. to get it out and
know that this is a normal reaction to what you have experienced.
Elizabeth

REPLY
Annie Johnson | @andreab | Apr 1, 2017
In reply to @andreab "After you or your loved one was transferred out of ICU and no longer considered “critically..." + (show)
@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?

Jump to this post

@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?

REPLY
Annie Johnson | @andreab | Apr 1, 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

Jump to this post

@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.

REPLY
Annie Johnson | @andreab | Apr 1, 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

@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

REPLY
Annie Johnson | @andreab | Apr 1, 2017

@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.

REPLY
qsam61404 | @qsam61404 | Apr 1, 2017

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.

REPLY
JK | @contentandwell | Apr 1, 2017
In reply to @andreab "After you or your loved one was transferred out of ICU and no longer considered “critically..." + (show)
@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?

Jump to this post

@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

REPLY
JK | @contentandwell | Apr 1, 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

Jump to this post

@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

REPLY
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