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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 19, 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 sorry so long to get back to you. I was hospitalized with another adrenal crisis, pneumonia, septic shock. Mayo trip is postponed until September as I am too medically unstable to travel. The cortisol test is hard because I have to hold regular medication and then be given meds which tell if the adrenal gland came be pushed into working. It disregulates all my careful medication with hydrocortisone and I usually feel very sick. It’s scary and I worry if it sometimes pushes me over into an adrenal crisis. It gives valuable information but it disregulates me for days with adrenal symptoms. Weakness, fatigue, nausea, body pain, light headed, low blood pressure, etc. I’m not sure if I need these tests as much as the diagnosis is becoming clearer but it does help decide what and how much medication I need, I guess. Still scary. So nice to hear from you. Hope you are as well as can be expected and hope we can stay in touch. Rhoda

REPLY
Dawn, Alumni Mentor | @dawn_giacabazi | Aug 19, 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
Hi Rhoda!!
I am quite intrigued by your diagnosis and symptoms you speak of. The adrenaline system it’s quite complicated and often misdiagnosed because of the lack of knowledge of how to treat the issues. I have found over the past 2 years that many doctors focus on treating the symptoms
(because of the urgency and complexity) they lose focus on the root cause. As you have listed many of your complications above the list is still a mile long. I have been through hundreds of tests and mis diagnosis and just as many failed treatments. But at the end of the day I take a little comfort in know that someday others will have the right treatment quickly as a result of my many failed ones. I will certainly keep you wrapped in prayers as you continue to search for a healthier you.
Blessings
Dawn

REPLY
rckj | @rckj | Aug 19, 2018

@andreab @colleenyoung Rhoda here @rckj on this forum. Again seeking some support from Mayo Connect. I have had four episodes since February of pneumonia, sepsis with delirium and adrenal shock. All ICU admits. I was supposed to go to MAYO from the east coast, in August, but I am still too medically unstable and have a picc. line in for easy IV access in an emergency. I will always continue to fight for health and have wonderful medical and personal supports. But, I am so tired, ill and truthfully, discouraged. Still trying to get my thinking back post ICU. MAYO has to be postponed until I am medically stable, September or later. I am so tired. Still working hard to get better but forcing the energy to work with rehabilitative and support services. My husband is great but I can tell we both are scared about my future. I try to find comfort in all the care and love around me but I am scared. Until MAYO weighs in regarding an auto immune diagnosis and treatment, I am in a holding pattern. I would appreciate any feedback from anyone on the forum regarding my situation and as always hope I can be supportive to others. Best wishes to all. Rhoda.

REPLY
rckj | @rckj | Aug 19, 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

@dawn_giacabazi Thank you for all your support. It is incredibly precious to me. I feel like I am in a holding pattern between acute episodes. Everyone, medical staff included feel like they are holding their breath and waiting or trying to help me avoid the next episode. Hope to come back to MAYO soon for re-evaluation and treatment plan. Too unstable medically for the travel from the east coast. I too hope for a healthier me. Thank you again and I wish you all the best. Hope to stay in touch. Rhoda

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 19, 2018
In reply to @jetquack9 "My name is jo quackenbush. And I actually have had no serious illness except for Parkinson’s..." + (show)
@jetquack9

My name is jo quackenbush. And I actually have had no serious illness except for Parkinson’s disease. So I have had a version of this lack of sleep since my mid twenty’s and I am currently Sixty five

Jump to this post

@jetquack9

Hello Jo:

I see that you posted several months ago. As Colleen did, I would like to invite you to the Parkinson's Discussion Group. We have had many discussions about sleep as Colleen mentioned.

Will you join us and share with us some of the challenges you have faced with PD and what has worked well for you?

REPLY
Dawn, Alumni Mentor | @dawn_giacabazi | Aug 19, 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
After years of complications and continuous episodes of hypertension crisis, severe fatigue, muscle cramps, muscle waisting (a few trials) & numerous ER visit and hospitalizations and lots of trips to Mayo Clinic, finally ended up with emergency surgery to remove my left Adrenal gland. I am in one of many recovery stages. My right Adrenal gland still has a tumor growing in it. At some point will need removed. The horrific flank pain is gone on the left side but lingers on the right with short bursts of flare up.
I to pray for a time of rest as I’m weary.

Stay strong and know we are here for you!

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

@rckj

Hello Rhoda,

Thank you for touching base, it is good to hear from you! I am sorry to hear of your hospitalization and your continued problems. I hope that you become stable again so that you can make it Mayo.

How are you feeling right now? What are your most troublesome symptoms?

Teresa

REPLY
1 reply
rckj | @rckj | Aug 20, 2018
In reply to @hopeful33250 "@rckj Hello Rhoda, Thank you for touching base, it is good to hear from you! I..." + (show)
@hopeful33250

@rckj

Hello Rhoda,

Thank you for touching base, it is good to hear from you! I am sorry to hear of your hospitalization and your continued problems. I hope that you become stable again so that you can make it Mayo.

How are you feeling right now? What are your most troublesome symptoms?

Teresa

Jump to this post

@hopeful33250. Hi Teresa. Thanks for your post and your support. Much appreciated! Worst symptoms now are pain, nausea and weakness, all adrenal and post hospital ICU symptoms. Also mental foggiest and some feeling of being hyper vigilant. I’m always afraid when the next episode will happen and there are no warning signs. I think that’s why they left the pic line in. It insures easy IV access if I get sick again. I’m hoping to stabilize enough to get back to Mayo for treatment plans that can prevent the episodes. They are so dangerous and between them I’m fighting to get strength back only to get hit by another. I wish for a more normal life. I have amazing supports, especially my husband, friends and the in home and hospital treaters but I so want to get back to work. I’m a psychologist and have my own patients. They are covered by colleagues but I want to go back and can’t just yet. Thank you for asking and I wish you only the best. Rhoda

REPLY
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.

Jump to this post

@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

REPLY
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

REPLY
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