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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 20, 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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@dawn_giacabazi I’m so sorry for your struggle and very appreciative of your kindness to me amidst your own battle. I will keep you in my thoughts and wish only the best for you. Rhoda

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 20, 2018

Hello Rhoda, @rckj

I do wish you well! I am sure that your clients miss you and want you back with them as soon as possible. I find it incomprehensible that there is no warning signs nor any lifestyle changes that you can make to prevent these episodes. I can imagine what you mean by being "hypervigilant." This must seem like PTSD for you.

Teresa

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rckj | @rckj | Aug 20, 2018

@hopeful33250 Teresa, we and the local doctors have tried everything but it still happens suddenly. Right now they are keeping a pic line in, high dose antibiotics and hydrocortisone. We’ve tried everything but the pic line which is really there for easy IV access in case of emergency. If they do diagnose an immune issue when I can get out to Mayo then there are medications. I hope. It does feel like I live with fear but I can’t let it take over my life. Thank you so much for the support. Rhoda

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 20, 2018

@rckj Rhoda:

So we will wish you a quick recovery from this last episode so that you can get to Mayo and get the needed diagnosis and medication.

You are wise to work at not letting fear take over, it must be hard in this type of situation, but you sound like a strong person. I admire that!

Teresa

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1 reply
rckj | @rckj | Aug 20, 2018
In reply to @hopeful33250 "@rckj Rhoda: So we will wish you a quick recovery from this last episode so that..." + (show)
@hopeful33250

@rckj Rhoda:

So we will wish you a quick recovery from this last episode so that you can get to Mayo and get the needed diagnosis and medication.

You are wise to work at not letting fear take over, it must be hard in this type of situation, but you sound like a strong person. I admire that!

Teresa

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@hopeful33250 Thank you Teresa! Best wishes! Rhoda

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 20, 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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@rckj Hi Rhoda! I am so happy to hear from you! I see you have been through another tough spell and still dealing with it. If I could give you a hug, I would. Please get better enough and hurry yourself to the Mayo Clinic. I have faith that they can give you back some quality of life, and less worrying about your next 'crash'. How are you doing tonight?

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rckj | @rckj | Aug 21, 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 I’m really glad to hear from you too! Hope all is well with you. Your support and others on this forum and in my life is incredibly precious to me. I was supposed to go to Mayo in about a week but both Mayo and the doctors here don’t feel I am medically stable enough plus I still have a pic line in. We had it all arranged and am now canceling everything and waiting for my body to heal. I seen to be having these episodes every 4 to 6 weeks now. That is what we are hoping to prevent. I am worrying both last night and this morning and trying not to! I guess I’m scared of the disease I have now. I don’t trust my body to support me. We live close to a hospital that knows me and the disorder and knows what to do but each episode is life threatening. Now I have to work hard to get my strength back. I will of course but each time is a fallback and having to fight my way into strength, only to have another crash. Frustrated! I didn’t mean to complain so much. I have a great support system and medical care. I just wish we could figure this one out. Thank you for your virtual hug. So appreciated! Hope for your wellness and sending back a hug. Rhoda

REPLY
Texas Freedom | @oregongirl | Aug 21, 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

All I have to give you is a prayer to the Great Doctor. Your Father Jesus. I prayed a simple prayer.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 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 Dear Rhoda, you are still here, that speaks volumes about your inner strength! Will text you more later tonight. Sending prayers and healing energy your way.

REPLY
Becky | @beitel | Aug 22, 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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Thank you so much for the great advice. I am sitting at work and started the breathing exercises, it really did feel good! I will try the others when I get home tonight. I struggle with relaxing so I am looking forward to trying something new.

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