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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 | Aug 22, 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 nice to hear from you! The protocol varies depending on how I feel and vital signs. Just out of the hospital is lots of rest then physical therapy on a walker to help me regain strength. They come to the house with visiting nurse, which helps enormously. Sometimes I have to take additional medication to avoid a crash. It’s complicated for everyone in my life and me. I’ve slept a lot today but have also been working with physical therapy. I don’t want to be completely debilitated but it’s a careful balancing act! Rhoda

REPLY
rckj | @rckj | Aug 22, 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

@windwalker even when tired, it’s nice to chat. I feel less alone with all the daily problems and decisions. Even though I have an amazing support system and a wonderful husband, it is still sometimes hard to cope. I will always keep fighting for my health because it’s in my nature but it does feel overwhelming sometimes. If I’m too tired to chat I’ll let you know, if I disappear for awhile it’s a good bet I’m in the hospital. I don’t know how to do private text on this site don’t know if it’s needed? But anyway, many hugs and thank yous Rhoda.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 22, 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 Are you home now?

REPLY
rckj | @rckj | Aug 22, 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

@windwalker yes finally! I have visiting nurse 3 times a week home Physical therapy 3 times a week doctors appointments twice a week, my husband flushes my pic line every day and nursing changes the bandages on it. Whew! Lots of medical support and emotional support. This last hospitalization was hard especially the ICU part but everyone knows me now and it’s a good hospital which helps. Glad to be home with my husband, friends, cats etc.!!!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 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 Great! I am glad that you are home now. You sure have a busy schedule! May I ask what they are having you do for physical therapy? Are you so glad to see your kitty cats?

REPLY
rckj | @rckj | Aug 23, 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

@windwalker hi Terri, so happy to be with the kitties (4 of them!)and my husband and friends. The home care service tends to keep a close eye on me because of the suddenness and severity of the episodes. Also we are fighting deconditioning and trying to keep up my muscle strength. Physical therapy at this stage is exercises for core strength, walking around the house with the walker, practicing the few steps to get in and out of the house for doctors appointments. I have to raise my hydrocortisone dose for exercise so everything has to be paced so I don’t get tired or ill, another balancing act. Later on when I’m a bit better, we will do the long staircase to my office, walk outside, maybe exercise bike. Swimming is out because the pic line can’t get wet. It’s hard after each episode to get strength back but I have a great physical therapist. We always have to balance to make sure it’s not too much for the adrenal insufficiency. I used to be really fit before this illness and hope to gradually get more strength back. Thank you for all the support. It’s hard sometimes. How are you doing? Rhoda

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 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 I am doing great right now. So good in fact, you'd never guess I had any illness. I am infection free at this time and trying to remain that way. I have to be on antibiotics indefinitely to keep mirorganisms from invading my lungs. I was out of town for two weeks so I am enjoying being home and picking up my hobbies again. I am currently making jewelry to sell at a big artisan street fair in October. (I sold out last year). So, you have FOUR cats? I LOVE cats but cannot have them due to my lung issues. I have a 5 lb teacup poodle. She is adorable and smart. Your exercise regimen sounded good until you mentioned a long staircase! I have a two story home and I tell ya, my staircase is going to be the end of me! I have 37% lung function, which isn't too bad until one goes up and down stairs all day. I invariably forget my cell phone etc. It's always something.... My optimistic self says "that's exercise baby!" Your excercise sounds like a delicate balancing act. Get your strength up so you can get to the Mayo next month. I want you to know that I think about you often and just know that there is a gal in South Carolina that is rooting for team Rhoda!

REPLY
1 reply
rckj | @rckj | Aug 28, 2018
In reply to @windwalker "@rckj I am doing great right now. So good in fact, you'd never guess I had..." + (show)
@windwalker

@rckj I am doing great right now. So good in fact, you'd never guess I had any illness. I am infection free at this time and trying to remain that way. I have to be on antibiotics indefinitely to keep mirorganisms from invading my lungs. I was out of town for two weeks so I am enjoying being home and picking up my hobbies again. I am currently making jewelry to sell at a big artisan street fair in October. (I sold out last year). So, you have FOUR cats? I LOVE cats but cannot have them due to my lung issues. I have a 5 lb teacup poodle. She is adorable and smart. Your exercise regimen sounded good until you mentioned a long staircase! I have a two story home and I tell ya, my staircase is going to be the end of me! I have 37% lung function, which isn't too bad until one goes up and down stairs all day. I invariably forget my cell phone etc. It's always something.... My optimistic self says "that's exercise baby!" Your excercise sounds like a delicate balancing act. Get your strength up so you can get to the Mayo next month. I want you to know that I think about you often and just know that there is a gal in South Carolina that is rooting for team Rhoda!

Jump to this post

@windwalker hi Terri! Sorry it took me a bit to get back to you. I had a few tough days but managed to stay out of the hospital. On high dose IV antibiotics through my picc line for another infection (sigh...), hydrocortisone and watchful waiting. I seem to be slowly improving which is good. So glad you are able to do what you love and I agree those staircases are exercise! Fortunately I can mostly stay on one floor unless I need my clinical office. (I’m a psychologist) but am on medical leave right now. I miss my work but I’m not well enough yet. It helps to have an office in the house in terms of returning to part time work. Hey I had a teacup poodle when I was a child! They are wonderful. We used to call them pocket poodles. And yes we are the crazy people down the street with all those cats! It’s a large house and they all get along so it works. House doesn’t smell like cat which I would hate due to good cleaners but I know Mayo pulmonology is not happy about our troupe of adoptees. I can’t bear to let them go so the compromise is frequent cleaning of the house. Exercise is for me a delicate balancing act to get stronger, less deconditioned without pushing myself over into adrenal shock. Can and do premedicate for adrenal function, which helps. Hoping for Mayo soon but the doctors are conferring on when and what can be done so I wait slightly impatiently but I do need time to gain strength. So glad to be talking with you and wish you only the best from this gal in Massachusetts! Talk to you soon, I hope. Rhoda

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gloriajean | @gloriajean | Sep 3, 2018

hello - thank you for raising this important issue that I believe is vastly underestimated and not dealt with in a timely and effective way! There are many "horrific" and unexpected happenings when you have brain surgery that is not addressed
Like when the first time they take your surgical bandage off to let the 34 staple wound be open to the air - and you go into the washroom on your own - wash your hands and look up at your face in the mirror
UTTER shock - I almost passed out. In researching and reviewing the symptoms of PST, I truly believe that I suffered from that
And yet, NO professional help was given to me to help me.get through the most difficult period in my life. 8 days in hospital has major recurpussions.
So.again thank you and I look forward to hearing from others in this discussion group

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eileena | @eileena | Sep 10, 2018

This is a good forum. Glad it is here.

I have been in ICU only once in my life and could hardly wait to leave. It was when they woke me in the middle of the night following my heart bypass that made me anxious to leave. While I was awake a nurse not assigned to care for me entered my room and asked the nurse who was assigned why my case was of such importance (paraphrased). My nurse replied he did not know that fact. The next night the assigned nurse (a different one) came to my button push and took the call button away and put it out of reach on a shelf above my head. Having had surgery only 2 days prior I was in no shape to get up and get the call button so the nurse could come quiet the monitor that kept screaming its lungs out and disturbing my sleep. The second day after my open heart procedure I got out of bed and walked the entire distance to my room so I could get out of that place. Of course I had a nurse(different one) accompanying me and I pushed the equipment in the wheelchair, it did take me about 10 or so minutes, but I'd never have wanted it any other way. I'd say it was good riddance to that place.

I believe these are part of what almost every patient who will join this forum will recall as part of why they hated being in the ICU.

Eileen

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