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?

@rosemarya

My ICU experience occurred 10 years ago. Currently my family and I are experiencing a situation that is deeply touching each of us. So memories have been reactivated as we deal with this issue.
During my quiet moments, I thought of this discussion group and all of you who have so generously shared. I gain strength in reading some of the past conversations. I want to send a virtual hug to each and everyone of you.

It has been a while since we have heard from some of you. Do you have any updates to share here?

We really do learn from each other and we don't have to be alone. I am eager to welcome any new members.

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As the one year anniversary of my ICU stay approaches, I am both celebrating victories and facing new challenges. I previously shared that I suffered neuromuscular damage that left me using a wheelchair for six months – I'm happy to report that through extensive PT and the passage of time, I've progressed from wheelchair to walker, and now to just a cane! I'm thankful to be able to get around easier and get back on public transit, and to have so much more of the world be accessible to me. However, despite this improvement, I'm seeing an increase in intrusive re-experiencing symptoms (sometimes full on flashbacks) to my time in the ICU with the anniversary coming up in January. On one hand I'm thankful for the new year ahead – and, I also want to remain realistic that my symptoms may intensify as the anniversary gets closer.

Rosemary, I am thinking of you and your family during this challenging time. Thank you for reaching out. I came to this page tonight unsure if I would share, but your words have encouraged me to do so.

Liked by plexiclone

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@alex12119

As the one year anniversary of my ICU stay approaches, I am both celebrating victories and facing new challenges. I previously shared that I suffered neuromuscular damage that left me using a wheelchair for six months – I'm happy to report that through extensive PT and the passage of time, I've progressed from wheelchair to walker, and now to just a cane! I'm thankful to be able to get around easier and get back on public transit, and to have so much more of the world be accessible to me. However, despite this improvement, I'm seeing an increase in intrusive re-experiencing symptoms (sometimes full on flashbacks) to my time in the ICU with the anniversary coming up in January. On one hand I'm thankful for the new year ahead – and, I also want to remain realistic that my symptoms may intensify as the anniversary gets closer.

Rosemary, I am thinking of you and your family during this challenging time. Thank you for reaching out. I came to this page tonight unsure if I would share, but your words have encouraged me to do so.

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@alex12119
Thank you so very much for your response. I appreciate your kindness toward me and my family during an unpleasant experience. The challenging situation for me was that both involved someone else in ICU. There were 2 separate situations, and each involved instances that were too closely related to my past experience(s). One had a sad ending, and the other, (an infant) has a hopeful outcome.
Congratulations on the victories you have achieved and are able to celebrate! I have a sense that you are a very determined individual and that you will not be turned away from a challenge at this point in your journey to your future. With your January anniversary within view, have you thought of any thing that you might want to do to divert your mind from some of the hard times? Maybe by planning something special and looking forward to a special event would be something to look forward to. How do you think that would work for you?

Since we are in the midst of the holiday season, and I am aware that many people were not looking forward to the holidays and celebrations. For a variety of reasons it is not the happy time because memories and sadness don't magically end at a certain point after a major event like a serious illness or a loved one's death. Reminders like sights, sounds, smells, etc often bring back a sudden and unexpected flood emotions. I won't pretend to know what kind of symptoms that you might experience, but I can understand your concern for the flashbacks that are hiding just out of sight. Everyone of us is different so I would like to offer you a link to some people who might have some ideas from their own experiences that might be interesting to you in the Group>discussion>Just Want ToTalk.
Have you taken a look at the Discussion Group>Just Want To Talk? https://connect.mayoclinic.org/group/other/ Join the discussion! Ask your questions, share your story, or just say hello. Here are some topics that could be a good starting point: How about a laugh, (hopefully); Art for Healing; Holidays are not happy family times for everyone; Music Helps Me; What Pets Can Do: Health and Healing.

Alex12119, Have you discussed your fears about flashbacks with one of your doctors or someone whom you can trust? I am here, and Connect is open 24/7. How can i help you?

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@alex12119

As the one year anniversary of my ICU stay approaches, I am both celebrating victories and facing new challenges. I previously shared that I suffered neuromuscular damage that left me using a wheelchair for six months – I'm happy to report that through extensive PT and the passage of time, I've progressed from wheelchair to walker, and now to just a cane! I'm thankful to be able to get around easier and get back on public transit, and to have so much more of the world be accessible to me. However, despite this improvement, I'm seeing an increase in intrusive re-experiencing symptoms (sometimes full on flashbacks) to my time in the ICU with the anniversary coming up in January. On one hand I'm thankful for the new year ahead – and, I also want to remain realistic that my symptoms may intensify as the anniversary gets closer.

Rosemary, I am thinking of you and your family during this challenging time. Thank you for reaching out. I came to this page tonight unsure if I would share, but your words have encouraged me to do so.

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@alex12119 , I am thinking about you. Now that the festivities of the holiday season age drawing to an end, how are you doing as you approach your annual ICU anniversary? How can I help you? I am here, and I am listening because I care.

Liked by plexiclone

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The recent news stories about PICS have been fascinating and sad for me to read. I am glad that awareness is being brought to this syndrome, and I am sad that there was little to no awareness of this syndrome when I was experiencing it.

About two and half years ago I spent time in the ICU—about five days on a ventilator and a few weeks in care without a ventilator. I have spotty memories of this time. I received zero support from the hospital staff about the mental experience of this illness. When I was “crazy”, my dear friend and my brother figured out what was going on. I recall nurses being angry with me and one specifically saying what a waste it was that a young woman was now “retarded”. I had a hospitalist get frustrated and refer me to psych because she wanted to know why I was uncooperative. I had no idea what was going on and why I was so confused. Finally, I just “woke up” one day and felt like I could communicate and express my needs. Shortly after that I was released from the hospital.

I experienced cognitive issues after my release and spent time online trying to understand what was going on in my brain. I had a lot of trouble with spatial reasoning, memory, and anger. I still have memory deficits—I forget words and and struggle with math. The spatial reasoning has improved. I still have a shorter fuse than I did before. I often feel sad about all that happened. It is very validating to know that I am not crazy and that others experienced the same issues. I hope those that survive time in the ICU from Covid-19 will get the support they need.

Bless you all for sharing your experiences. It is healing to me read them.

Michelle

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@howemb

The recent news stories about PICS have been fascinating and sad for me to read. I am glad that awareness is being brought to this syndrome, and I am sad that there was little to no awareness of this syndrome when I was experiencing it.

About two and half years ago I spent time in the ICU—about five days on a ventilator and a few weeks in care without a ventilator. I have spotty memories of this time. I received zero support from the hospital staff about the mental experience of this illness. When I was “crazy”, my dear friend and my brother figured out what was going on. I recall nurses being angry with me and one specifically saying what a waste it was that a young woman was now “retarded”. I had a hospitalist get frustrated and refer me to psych because she wanted to know why I was uncooperative. I had no idea what was going on and why I was so confused. Finally, I just “woke up” one day and felt like I could communicate and express my needs. Shortly after that I was released from the hospital.

I experienced cognitive issues after my release and spent time online trying to understand what was going on in my brain. I had a lot of trouble with spatial reasoning, memory, and anger. I still have memory deficits—I forget words and and struggle with math. The spatial reasoning has improved. I still have a shorter fuse than I did before. I often feel sad about all that happened. It is very validating to know that I am not crazy and that others experienced the same issues. I hope those that survive time in the ICU from Covid-19 will get the support they need.

Bless you all for sharing your experiences. It is healing to me read them.

Michelle

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Hi Michelle, your experience sounds very similar to mine – both the time (about 2.5 years ago) and the PICS issues. I don't remember any of the time being on the vent but immediately after being taken off is when I have memories. I often wonder if some of my memories were hallucinations. I thought the hospital staff was out in the hallway laughing and celebrating New Years (it was 12/31 when the vent was removed) and I swear I was yelling out for help and no one would come help me because they were too busy celebrating. I also thought a nurse was trying to trick me with the time because she thought I was asking for too much pain medication.
All of the articles coming out regarding PICS has re-validated some of the feelings I have and issues that I experience. I too hope the survivors will get plenty of support by being encouraged to join groups like this one and to read the articles that have been written.

xxoo,
Pam

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@psd0972

Hi Michelle, your experience sounds very similar to mine – both the time (about 2.5 years ago) and the PICS issues. I don't remember any of the time being on the vent but immediately after being taken off is when I have memories. I often wonder if some of my memories were hallucinations. I thought the hospital staff was out in the hallway laughing and celebrating New Years (it was 12/31 when the vent was removed) and I swear I was yelling out for help and no one would come help me because they were too busy celebrating. I also thought a nurse was trying to trick me with the time because she thought I was asking for too much pain medication.
All of the articles coming out regarding PICS has re-validated some of the feelings I have and issues that I experience. I too hope the survivors will get plenty of support by being encouraged to join groups like this one and to read the articles that have been written.

xxoo,
Pam

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Hi Pam,

Thanks for responding.

We must have been in the hospital at the same time.

Do you wonder why nobody tried to explain to you what was going on with the delusions and confusion? I clearly remember the night I was taken off the vent. Someone kindly explained why I was tied up and shouldn’t struggle. I understood. After that I definitely had a lot of delusions. I also had moments of lucidity that I remember. It seems like if they had explained why I was having strange dreams and scary delusions that it might have sunk in and been less scary.

Thanks,
Michelle

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@howemb

Hi Pam,

Thanks for responding.

We must have been in the hospital at the same time.

Do you wonder why nobody tried to explain to you what was going on with the delusions and confusion? I clearly remember the night I was taken off the vent. Someone kindly explained why I was tied up and shouldn’t struggle. I understood. After that I definitely had a lot of delusions. I also had moments of lucidity that I remember. It seems like if they had explained why I was having strange dreams and scary delusions that it might have sunk in and been less scary.

Thanks,
Michelle

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I wish someone would have explained the delirium and maybe they did but I don’t remember. Or maybe the delusions were so real to me that I didn’t know I was experiencing them until later. In rehab part of my daily dr visits was a psychologist. I did not understand why he was a part of my quest to learn how to walk and shower again haha! But now I get it. I’m not sure I was ready for talk therapy at that point. I was tired and I felt like crap. I was still pretty ill.
After being released it was recommended I see a therapist but I couldn’t figure out why. It took me a over a year to see one and talking it thru has helped a lot.
I believe this will now become an important part of the recovery process. Especially after so many people will experience PICS.

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Hi, my name is MJ and was in intensive care for 4 months after after catastrophic necrotized pancreatitis. I was on life support on and off for the four months and then moved into my own room for a stay of 7 months. I got out of the hospital last July and have lately been struggling with some of the hallucinations I had in the hospital and am also having cognitive issues. I have been told it takes your body a long time to recover from An ICU stay. Has anyone else had experience with this?

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I am two and half years out from my ICU and hospital stay. Mine was only a month—nothing compared to your ordeal. I still have nightmares sometimes, and I have problems with memory and spatial perception. I am navigating the aftermath and expect I will for a long time. Talking with others who have endured the ICU experience has been helpful.

The Covid-19 epidemic has brought me more stress and anxiety as I read about the ICU stays many patients experience. It has made me think about my time in ICU more and sometimes gives me nightmares.

Your body does take a long time to recover physically, but I don’t know if it ever recovers emotionally or mentally.

I wish you healing! Be well.

Michelle

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Thank you for sharing your story, it does help talking to someone who knows what you are going through.

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@mjkrr2

Thank you for sharing your story, it does help talking to someone who knows what you are going through.

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@mjkrr2, @howemb, For me it was 11 years ago that I had my ICU experience. I had a critical week with end stage liver failure and acute kidney failure and was aware that hospice was being discussed as my only option. A most wonderful change of events began on day 7 with an air transport to Mayo, and eventual transplant.
In the time after ICU and critical condition, I was confused by what had happened as well as the gaps in my memory/awareness of time. For months and even years afterwards, I kept asking my husband about "what" had gone on. It was painful for him each time I brought it up because he lived those awful moments, too. It took me a long time to accept that there were things he did not know, for example details about procedures and people where he was not in the room with me.
Over the years, I have had conversations with friends who have had stays in ICU for a variety of reasons. They, too, are experiencing hallucinations and memory issues as you have mentioned. And they always say that their loved ones think they should just forget about it and move on. I will say to you, as I have said to them, "I understand; I get it" It helps to know that you are not alone, and it helps to have a place to talk about it. I am happy that you have joined us.
Have you been able to talk to anyone who was "there" about any of the situations related to the hallucinations?

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@rosemarya

@mjkrr2, @howemb, For me it was 11 years ago that I had my ICU experience. I had a critical week with end stage liver failure and acute kidney failure and was aware that hospice was being discussed as my only option. A most wonderful change of events began on day 7 with an air transport to Mayo, and eventual transplant.
In the time after ICU and critical condition, I was confused by what had happened as well as the gaps in my memory/awareness of time. For months and even years afterwards, I kept asking my husband about "what" had gone on. It was painful for him each time I brought it up because he lived those awful moments, too. It took me a long time to accept that there were things he did not know, for example details about procedures and people where he was not in the room with me.
Over the years, I have had conversations with friends who have had stays in ICU for a variety of reasons. They, too, are experiencing hallucinations and memory issues as you have mentioned. And they always say that their loved ones think they should just forget about it and move on. I will say to you, as I have said to them, "I understand; I get it" It helps to know that you are not alone, and it helps to have a place to talk about it. I am happy that you have joined us.
Have you been able to talk to anyone who was "there" about any of the situations related to the hallucinations?

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Thank you. I have a wonderful husband that kept detailed records for 7 long months, he was there by my side constantly and when he wasn’t our son was able to be there. I realize how lucky I was, I cannot imagine if COVID19 had been around last year when I was in the hospital. I have a fabulous family doctor that kept in touch daily and once I got home came a visited me a few times a week. Just recently I have been referred to a psychiatrist who specializes in ICU patients.

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@mjkrr2

Thank you. I have a wonderful husband that kept detailed records for 7 long months, he was there by my side constantly and when he wasn’t our son was able to be there. I realize how lucky I was, I cannot imagine if COVID19 had been around last year when I was in the hospital. I have a fabulous family doctor that kept in touch daily and once I got home came a visited me a few times a week. Just recently I have been referred to a psychiatrist who specializes in ICU patients.

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@mjkrr2, I'm so glad that you've been referred to a psychiatrist who specializes in ICU patients. I don't think there are many around. I'd be very interested to hear how things improve for you.

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Good Morning-
My name is Jon . I am a Covid Survivor. I went in the hospital on March 27th and was on a vent for 2 weeks in an induced coma. I was in ICU for another few days after then in a step down room. I was released on April 19th. I realized I experienced very vivid and lasting experiences while in the coma that I can't seem to stop thinking about. Anyone else experience this?

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@jheitmann

Good Morning-
My name is Jon . I am a Covid Survivor. I went in the hospital on March 27th and was on a vent for 2 weeks in an induced coma. I was in ICU for another few days after then in a step down room. I was released on April 19th. I realized I experienced very vivid and lasting experiences while in the coma that I can't seem to stop thinking about. Anyone else experience this?

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@jheitmann – Hi Jon, Welcome to Connect. Your experience and your survival are something that I have not experienced. And I am happy that you have come to Connect to talk about your coma and ICU experience.

I was not in a coma during my ICU experience with liver failure and kidney failure, but I experienced lapses in time where I was not sure what was happening around me and to me. It caused me much concern and was troubling to me for period, and that went away over time as my family was able to fill in the details for me. However, I don't think this is what you are experiencing. I am going to invite some members who have also shared their nightmare/memory experiences after their ICU and coma experiences. Jon, When did you begin to experience these? Are they night time, or anytime?
@howemb, @psd0972, @mjkrr2 – I invite you to share your experiences. How might you lend support to @jheitmann

Jon, Are you experiencing any other post COVID-19 symptoms? Here is a discussion that I want to share and I invite you to post your question in this discussion where other COVID-19 survivors will see it. https://connect.mayoclinic.org/discussion/covid-symptoms-lasting-30-days-plus/

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