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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.

rckj | @rckj | Jul 24, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@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.

REPLY
Becky | @beitel | Jul 24, 2018
In reply to @rosemarya "@seanne, I want to extend a heartfelt Welcome to Mayo Connect. I am happy that you..." + (show)
@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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Ron Rubenzer | @user_cha272278 | Jul 24, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@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.

Jump to this post

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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 24, 2018

@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?

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@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

Jump to this post

@beitel, With all that you have been through, it is no wonder that you feel different. So much confusion and unanswered questions is, from my experience frustrating at the very least. I have posted some information about PICS in another reply to you. As a transplant recipient, I will be checking in and listening as you provide some details to Kanaaz.
Becky, How old were you when this happened?

REPLY
Becky | @beitel | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@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

Jump to this post

After my accident and hitting my head I do not remember that whole week. I was on pain meds and I was not myself all week I guess, vomiting and such and then they did surgery on my wrist a couple days later and I just never recovered. They sent me home and the next day my family said I was out of it and not waking up. They called the hospital and said I maybe had to many meds. I got to the ER and it was there I became unresponsive and they put me on a ventilator and airlifted me to the hospital in ICU. I was treated for TTP/aHUS, a rare blood disease where your blood cells burst into chards , that is what damaged my kidneys. They do not know how or when I got it. I was getting 30 bags of plasma a day and blood transfusions when I was in a coma

REPLY
Becky | @beitel | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@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

Jump to this post

Rosemary I am 43, 42 when this happened, I am coming up on my 1yr.

REPLY
Texas Freedom | @oregongirl | Jul 24, 2018
In reply to @rosemarya "When I spent 5 days in ICU with sepsis, dehydration, acute kidney failure, and endstage liver..." + (show)
@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

Jump to this post

Oh my goodness. That is horrible. I pry they can control this for you. I am praying for you.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 24, 2018
In reply to @muriel66 "It has been ten days since my last statement about the way I am. I become..." + (show)
@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.

Jump to this post

@rckj Thank you for the update Rhoda. I am glad you are out of the hospital now; it sounds like it was quite an ordeal. I cannot imagine having to manage that kind of a disorder, I really feel for you. I am so glad that you are being seen at the Mayo next month. They are the go-to place for the out of the ordinary maladies. As for me, I am doing alright. No energy now mostly due to the heat and humidity. Been in hibernation mode due the fact that I cannot breathe when I step outside. Ok, now back to you...I would be very interested to hear what Mayo docs have to say after you've seen them. What about now? Do you have energy to do things?

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