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?

Hi everyone,
@andreab just posted a remarkable opportunity tell health care professionals about your ICU experience in order to improve the experience for others. She writes:

"The Thrive Peer Support Collaborative through the Society of Critical Care Medicine has connected Mayo Clinic with a vast network of international sites and experts who are dedicated to improving life after the ICU for patients and families."

Now they want to hear first-hand experiences through a 30-minute telephone interview. Click the link for more details and how to get involved.
https://connect.mayoclinic.org/newsfeed-post/opportunity-to-help/

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Thank you so much for affording patients and their families this opportunity that can help impact current and future critical care (and after-care). Also, just a friendly reminder that we host a monthly in-person PICS support group for patients and family member the 3rd Monday of each month (next group: June 18th), from 6:00 to 7:00 PM, at Mayo Clinic Rochester Campus St. Mary's Hospital, Francis Board Room. This is a great opportunity to share your experience, strength, and hope with other survivors and families, and to exchange ideas on bolstering resilience and recovery, in a compassionate, accepting, supportive environment. To attend, go in the front doors of the Francis Tower. When you get inside, take a right at the main information desk that is just past the elevators. Go towards the end of the long hall and we will have a sign out for the group, and we'll be looking for you! Call if you need help at 507-398-7470. Refreshment are served.

Liked by Annie Johnson

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Where can I read about this disrase.? Intensive care syndrome. Now that I am older, icu CD be a part of my future. However, I do have a signed Do Not Resuscitate

Liked by Annie Johnson

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@mitchwsu

Thank you so much for affording patients and their families this opportunity that can help impact current and future critical care (and after-care). Also, just a friendly reminder that we host a monthly in-person PICS support group for patients and family member the 3rd Monday of each month (next group: June 18th), from 6:00 to 7:00 PM, at Mayo Clinic Rochester Campus St. Mary's Hospital, Francis Board Room. This is a great opportunity to share your experience, strength, and hope with other survivors and families, and to exchange ideas on bolstering resilience and recovery, in a compassionate, accepting, supportive environment. To attend, go in the front doors of the Francis Tower. When you get inside, take a right at the main information desk that is just past the elevators. Go towards the end of the long hall and we will have a sign out for the group, and we'll be looking for you! Call if you need help at 507-398-7470. Refreshment are served.

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Ok I found it

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@oregongirl

Where can I read about this disrase.? Intensive care syndrome. Now that I am older, icu CD be a part of my future. However, I do have a signed Do Not Resuscitate

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Hi @oregongirl Read more about post intensive care syndrome (PICS) on the PICS Page. You'll find it here on Connect: https://connect.mayoclinic.org/page/pics/

Scroll through the blog posts by Annie, Mayo ICU Nurse Practitioner, as she explains what it is.

Liked by Annie Johnson

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I cannot tell you how happy I am to discover this online support group. It's been 5 months since I was intubated, in a coma, in the ICU. The cause: a series of seizures that were completely unexpected and put me on the brink of multi-organ failure. I very nearly died. Now I've learned that it's true that you enter the ICU as one person and leave as someone different. I know I can never get my old life back…for one thing, repeat seizures could kill me (the preferred outcome) or leave me severely brain damaged (the not preferred outcome) and that could happen at any time despite the heavy medication I now take. I find that terrifying.
Alas no one at my hospital (a large medical center in the Northwest) mentioned post ICU syndrome or told me and my family what I might experience once home. So I naively thought I'd bounce back in a couple of weeks. I had no idea how long-lasting my physical weakness would be, nor how exhausted I'd be, nor how much continuing pain I'd experience from a broken back caused by my seizures and undiagnosed for two weeks. Then there's the mental aspect — the brain fog, forgetfulness, confusion. I've self-diagnosed myself with a brain injury. How significant or long-lasting it is I don't know.
However I do feel like I'm improving thanks to time and the Internet. There are no Post ICU support groups where I live and no therapists I can use (under my health plan) who have experience counseling PICU survivors. So I'm working to piece together my own recovery by finding information and help online. It's been a hit or miss process.

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@seanne, I want to extend a heartfelt Welcome to Mayo Connect. I am happy that you have entered this discussion. I had a brief stay in ICU and my memory gap is my bothersome symptom. Nine years ago I was critical with failing liver (on transplant list) and acute kidney failure. It was a very painful time for my family and even to this day, they do not want to speak of it. I had to sit them down and to ask what happened during my times of 'unknowing' . So for me, it has helped to meet others who understand that 'need to know, and to understand what was going on'.
I never thought if it as PICU, but when reading the experiences of others, I have learned that me and my family were affected. I am at loss as to what to say about your experience that might be helpful to you, except to say, "I understand what you are experiencing, and I understand the fear with the unknowing".

I want to share this resource with you where you can learn more about Post Intensive Care Syndrome (PICS).
https://connect.mayoclinic.org/page/pics/
Did you know that there is a Discussion Group – Epilepsy and Seizures that might be interesting. https://connect.mayoclinic.org/group/epilepsy-2bb359/

I will wait with you, and I am happy to chat with you while waiting for others to share their experiences.
Hugs,
Rosemary

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@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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How are you doing today, @rckj Rhoda?

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@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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Rosemary-
I flew off a 4-wheeler and hit my head and broke my wrist. I went to the ER but no CT scan was done just put on pain meds. I do not remember that week. This happened Aug 8th last year, I woke up in the ICU having a breathing tube taken out, that was Aug.21st. The day before they were going to take me off life support. I woke up so confused, no idea what had happened, where I was. I was in the hospital about a month but since then I feel so "disconnected", I remember bits and pieces of my stay, I have flash backs of dreams, Vague weird things I experienced when I was in a coma and shortly after. It is so hard to explain I just feel different. My life is different. I am seeing a counselor, I am now on a transplant list and on Dialysis 3 days a week. I just don't feel " grounded". It is so hard to explain. I am here but not here most days if that makes sense. The whole events that took place are so mind boggling. They had to write in a notebook things that happened , like being flown to the hospital, because I kept asking. I read " good -bye" notes from my boys friends, I was treated as though I died and I struggle with relationships, dreams, flashbacks..lots of things. Jumbled memories,visions. Any suggestions. No one seems to understand

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@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@colleenyoung thank you for reaching out to me. It meant a great deal to me. I would have responded much sooner but had another two hospitalizations, same critical issues. My husband and I are returning to Mayo Clinic in Rochester in the end of August to try to find a way to eliminate or minimize these episodes. Possible there may be an auto immune issue that is kicking off the adrenal crisis. I am hopeful but nervous. Hoping for a better quality of life and elimination of life threatening episodes. Thank you for being there for me and hoping we can stay in touch. Best wishes, Rhoda.

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@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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@windwalker hi Terri. Thank you for your post. I didn’t get back sooner due to two more hospitalizations, all in ICU. Your support means a great deal to me. I am returning to Mayo Clinic in Rochester in the end of August for further evaluation. The hope is to eliminate or minimize the episodes and increase my quality of life. Short version of my disorder is that my adrenal glands don’t produce cortisol any more. Just like a diabetic can’t live without insulin I can’t live without substitute cortisol called hydrocortisone. I take it three times a day, orally and have injectible for emergencies. Any form of stress, particularly infection causes more need for hydrocortisone than I can give myself and I have an adrenal crisis which is life threatening and needs quick hospital treatment. I’ve had a lot of these and the doctors are trying to stabilize me. It’s a life long condition but there is hope for better management of daily symptoms and the crises. It’s a rare disorder but Mayo has people who specialize in it and I am grateful for that. Even though I live in a major east coast city, I couldn’t get appropriate treatment here. Adrenal crises are dangerous and scary for me and frightening for my wonderful husband. You have to get the right emergency meds fast. We wish we could travel but right now the risk is too high. Our local hospital knows what to do but you can’t count on other facilities. I’m hoping Mayo can improve my situation. They did last time but there’s a way to go both with emergencies and debilitating daily symptoms. I hope that gave you some information on the problem. Glad to be going back to Mayo, glad for this site and grateful for your communication. I hope all is as well as can be expected with you. You have all my best wishes. I hope to stay in touch. Rhoda.

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@rosemarya

@seanne, I want to extend a heartfelt Welcome to Mayo Connect. I am happy that you have entered this discussion. I had a brief stay in ICU and my memory gap is my bothersome symptom. Nine years ago I was critical with failing liver (on transplant list) and acute kidney failure. It was a very painful time for my family and even to this day, they do not want to speak of it. I had to sit them down and to ask what happened during my times of 'unknowing' . So for me, it has helped to meet others who understand that 'need to know, and to understand what was going on'.
I never thought if it as PICU, but when reading the experiences of others, I have learned that me and my family were affected. I am at loss as to what to say about your experience that might be helpful to you, except to say, "I understand what you are experiencing, and I understand the fear with the unknowing".

I want to share this resource with you where you can learn more about Post Intensive Care Syndrome (PICS).
https://connect.mayoclinic.org/page/pics/
Did you know that there is a Discussion Group – Epilepsy and Seizures that might be interesting. https://connect.mayoclinic.org/group/epilepsy-2bb359/

I will wait with you, and I am happy to chat with you while waiting for others to share their experiences.
Hugs,
Rosemary

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Hi Rosemary, not sure if people are still on this group?

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@muriel66

It has been ten days since my last statement about the way I am. I become more and more in touch with the ways I experience PICS after severe septic shock (2016) and septic shock (2017). I hope I am not repeating myself when I say that frankly I am cognitively and emotionally worse than I was before I experienced the second incident of septic shock. My concentration certainly is worse, as is my depression. Of course, depression can diminish concentration and diminished concentration can exacerbate depression.

It is positive that I finally accept that my depression is substantial and thus, I am more patient with myself and less judgmental of my cognitive disfunction. (Pat me on the back, please.) The uneasiness that I have is not knowing if in the future, I will return at least to the level of cognitive/emotional healing that I experienced before the second experience of septic shock. In other words, I am concerned about whether or not I will be able to function in a more ‘normal’ fashion. (Please pray for me.)

Tonight my brain is weary. I need to rest… and that is a subject about which I later will comment. My dreams seem long and complicated. I wish they were simple ones. Anyway, I continue to be thankful to be alive and as very-well as I am! My dear husband and I laugh about some of the silliness in my changes and our adjustments. Thanks for listening! M.H.

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I was in ICU for five weeks in a coma, after that 3 more weeks in the hospital brain/spinal cord injury ward. ( 8 weeks total). After about 600 days, I made a partial recovery. I have compassion for you. What do the Mayo doctors say is causing your insomnia? Dr Ron Rubenzer

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@rosemarya

When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver disease, I was in and out of awareness. I was sometimes halfway aware of my surroundings, or activities happening to me and around me (only if I was moved, or a sudden noise). I have a partial recollection of the people and of the procedures. But I had no context time.
I have a vague recollection of being flown to another hospital. And arriving there. Although not in ICU, I was on the transplant floor at Mayo Methodist, and for the first few days, I continued to be in and out of awareness.
Later on, when I asked my husband, who is my caregiver, to explain to me what had occurred, I was shocked. So much had occurred that I didn’t even realize. And on top of that , my memory of it, was all jumbled. For a while this really bothered me. But now, as time has passed, (8 years) it is not a concern to me, anymore.
Rosemary

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Hi @beitel,
Welcome to Connect. With all that you've been through, your comment about, "I am here but not here most days…" makes complete sense! I'm confident that @rosemarya and other members in this group will return to welcome you, but in the meantime, @beitel, would you share a few details? Were you in the ICU due to kidney-related or other issues (since you mentioned transplant and dialysis), or after the accident?

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@beitel, Hi Becky, Yes, I am still here on this group. I do pop in from time to time, but mostly participate in the transplant group. I read your previous post and I want to assure you that you are not alone. If you read thru this discussion forum, you will see evidence of that.

The symptoms that you have described in your 1st post about the accident, memory, ICU, bad dreams, confusion are more common than even previously identified by even the medical community. So it is not surprising that your friends and family are also unaware. I want to share some information that I think will provide you with information about Post Intensive Care Syndrome (PICS). I want to suggest that you share this with your family and friends, and even your counselor.
https://connect.mayoclinic.org/page/pics/
Becky, what is the state of your physical healing as a result of your 4 wheeler accident?

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