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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.

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.

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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

REPLY
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?

REPLY
Texas Freedom | @oregongirl | Jul 24, 2018
In reply to @elizabethbryant "I burst out in tears like of and on for 7 months after my surgery and..." + (show)
@elizabethbryant

I burst out in tears like of and on for 7 months after my surgery and care at John Hopkins, it was so morbid. It took 7 months for me to stop
and the crying didn't start immediately after leaving the hospital. I wonder if it is a combination of the drugs and trauma

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You might want to do some research on this Kari... In case u need surgery or drugs again. My husband had terrible frighting visions while on Morphine. He called me from hospital and said are you coming? It was middle of night. He saw bugs everywhere on walls. No more morphine

REPLY
Becky | @beitel | Jul 24, 2018
In reply to @rosemarya "@beitel, Hi Becky, Yes, I am still here on this group. I do pop in from..." + (show)
@rosemarya

@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?

Jump to this post

As far as the 4-wheeler accident I seem to be OK. My wrist has heeled and feels good. It is my memory and other psychological and emotional issues. I am currently on a transplant list and like I stated I am on Dialysis 3 days a week. I started back to work part-time which has helped me emotionally .

REPLY
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