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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.

Texas Freedom | @oregongirl | Jul 25, 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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Terri, you have something, I truly would not want. You are so strong to be able to deal with this. But, then what choice do any of us have. I will keep you in my prayers and thoughts. I have never heard of your disease. I am so thankful you have your husband at your side. That is one thing, I miss. My husband, whom I loved so very much has been gone for 10 years. It can get lonely when you are dealing with medical issues alone. God Bless Terri

REPLY
Annie Johnson | @andreab | Jul 25, 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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@beitel I am so glad that you found this conversation. You will find by reading through the posts here that you are absolutely not alone with what you are experiencing. You have been through so much and have multiple reasons to be having the feelings and symptoms that you are. I really encourage you to also read through a blog I have been posting called "Breaking it Down" that explains the details of Post Intensive Care Syndrome. I hope you will find the information helpful. Please continue to reference that site as well as engage in continued conversations within this group. Here is a link to the site I mentioned:
https://connect.mayoclinic.org/newsfeed-post/new-breaking-it-down-series/

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Becky | @beitel | Jul 25, 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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Thanks for the heads up . I have been feeling really anxious and out of sorts. Lots of memories flooding my mind.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 25, 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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@beitel - you can direct your message to a particular person by adding their @name. They will get a notification in email that you have addressed them.

To access the link that Anne included, just click on it and you will be able to view it.
Does it help the anxieties and memories by jotting them down to “file” for later. Or can you find a level os calm by doing something that you enjoy?

REPLY
Ron Rubenzer | @user_cha272278 | Jul 25, 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

When I was in ICU for 5 weeks in a coma - (and near death at one point) I was on what I called a “NOT SO -Merry Go Round, inside my head“. Since Your executive functioning part of your brain is shut down, you do have AN idle mind - hence the devils playground (figuratively speaking). You have NO FILTERS. What do all these weird dreams mean— it means your brain, (which needs 20 percent of your body’s entire Oxygen) is being starved.

Same with drugs used in surgery, pain relief etc. They shut down part of your brain

. After my second neck surgery, I woke up in the recovery room, face up, but I could have sworn I was facedown (the position I was in (face down) during my broken neck repair surgery) .

Feeling is NOT BELIEVING! I would have bet every penny I had that when I woke up in the recovery room, I was STILL facing down like during surgery. It was a complete shock when I opened my eyes in the recovery room, and realized I WAS face up (even though I felt that I was face down.). My take-away from this - don’t always think something’s true because it is your experience, and two- don’t under-estimate the power of drugs on your mind. Hang in there. Ask for a different type of drug (there’s a new one every day :-). Dr. Ron

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Ron Rubenzer | @user_cha272278 | Jul 25, 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

Dear Rosemary- you have such wisdom. I have attached my small story- that basically says - hang in there, things will get better if you hang on to HOPE like a life preserver. After just 7 short years, all the lights in my mind, have finally turned on again. Never quit. Have a great week. In friendship. Ron. Make Today Count.

Please share- if feel the only reason I was spared was to share.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 26, 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, Rhoda, why and how does the cortisol test make you sick?

REPLY
Becky | @beitel | Jul 26, 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

@rosemarya -- Thank you. I have never tried doing that. I try to block things out and the busier I am the better. It is hard for me to find " calmness " or relax. I actually bought a Kayak hoping that would be some sort of relaxation. I have noticed I am feeling more depressed lately and tears just show up. My mom said that she is having a hard time also with the one year coming up, so are my kids and other family members. We are all grieving differently. Will this go away after the 1 yr mark? Our lives have changed so drastically.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 26, 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

@user_cha272278 Your story says that you are a survivor. What you have experienced and your desire to remain focused on positive outlook, are an inspiration. Hanging on to hope is like a life preserver, I like that phrase!
You bring up an interesting point about the reason for being spared. I also asked "Why" after my life was spared by a liver and kidney transplant. I have discovered that the experience gave me an entirely new perspective and awareness of the fragility of life. And an understanding that everyone is different in how they manage their own trials. I also like to use my experience to help others by sharing and listening.
Amazing, isn't it, that looking back you can say '7 short' years. Not so at the time though. Happy for you that you have overcome through your positive outlook. Keep on sharing:-)

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