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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.

Annie Johnson | @andreab | Jan 30, 2018
In reply to @muriel66 "Almost two years after suffering severe septic shock and nine months after suffering septic shock, both..." + (show)
@muriel66

Almost two years after suffering severe septic shock and nine months after suffering septic shock, both because of the way my body responds to surgery, I again am reading about PICS. I continue to face struggles that affect my days. I finally am writing on this page. I wasn't able to write in the diary that was given to me while in and after I left Mayo intensive care (and went to a room on a different floor). My de-conditioning, my decreased cognitive ability, my immense fatigue, my emotional upset, and my schedule of very helpful medical care... such as dialysis, physical therapy, services entering the room... left me not wanting to do one more thing (not to mention that my physical de-conditioning meant that for a period of time, my hands could not write). I did pray almost continually, listened to all who provided me care, tried to eat, etc.. But my greatest expenditure of energy likely was to eliminate body-waste successfully and regularly; once the bladder catheter and anal "garter snake" (my expression) were removed. Ha, ha!

Almost two years after my 2016 hospitalization, I again am diagnosed with moderate major depression. And, I have sluggish cognitive ability. Because I again am at a point of accepting my emotional-mental state, and my fatigue, I hopefully will post regularly on this site. It helps me when I express myself in writing. Today started as one of my more difficult days. I awoke five hours ago and still feel like I am mostly asleep. Possibly this is because of a change in medication for the depression. However, the change occurred before last week when I gained more energy and even experienced happiness. (Note: I always am thankful... thankful for excellent, insightful, kind, inspirational, steadfast care from the entire Mayo personnel; from my husband, sons, friends, neighbors... and always thankful God's peaceful presence and amazing wisdom!)

Though my depression was less of a fog last week, today the heavy weight returned to my mind and body. I see a local psychologist and last week he cautioned me that this could happen. Writing about the way I feel is helpful, so I will give writing at this site another shot. Also helpful is reading and re-reading the Mayo online information about PICS. I did that earlier today and was reminded that the way I am today (physically, mentally, and emotionally) aligns with PICS. I also am reminded that I will continue to recover as fully as is possible...thankfully! Today is sunny and now it is a little bit warmer in northwestern Minnesota, so I am going outside. I hope that whoever reads this, has as healthy a day as possible. M.H.

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@muriel66 I am so grateful that you are able to share your experiences here with us. It is incredibly helpful for others to know that they are not alone in facing these challenges. I completely agree that writing can be so therapeutic. It forces us to really examine ourselves and when we can share it publicly and know there is an opportunity to help others, the collateral effect is powerful.

Does anyone else have experiences with writing - whether in a real time diary format during your acute illness, or in a reflective way later on?

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MPH | @muriel66 | Feb 8, 2018

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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42 replies
Jo | @jetquack9 | Feb 9, 2018

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

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 9, 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

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Hi Jo,welcome to Connect. I like to invite you to follow the Parkinson's group here: https://connect.mayoclinic.org/group/parkinsons-disease/

I think you might have something interesting to add to this discussion:
- Sleep Disorders & Parkinson's Video https://connect.mayoclinic.org/discussion/sleep-disorders-parkinsons-video/

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rckj | @rckj | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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Sorry I haven’t responded sooner although I greatly appreciate your support. Two days after I posted I again had sudden severe illness which landed me in the ICU. No early symptoms just sudden onset; pneumonia, septic shock and adrenal shock. Ambulance to ER to ICU. Home from hospital now still recovering but also still hopeful. Still made it ten months without having an admission. Very tired, have visiting nurse and physical therapy. It’s going to take some time. Thank you for your encouragement.

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rckj | @rckj | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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Thank you for your support. I would have written back sooner but two days after I posted I was again very ill without warning and went by ambulance to ER then to ICU. Pneumonia, septic shock and adrenal shock. Still recovering but am trying to remember that I had ten months without a hospitalization. Holding on to hope is important to me especially as I recover. I have home services for nursing and physical therapy and terrific family and friends, an especially supportive husband. Lucky in many ways. Very tired but that will take time. Still reeling a bit from the multiple but necessary medical interventions. Any thoughts would be greatly appreciated. Thank you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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@rckj, I am sorry to hear of your sudden development. I am happy to hear that you now home and recovering!
Sudden onset with no symptoms is frightening for sure. You are very fortunate to have been able to receive the immediate care that you mentioned. And you also are blessed with a supportive family:-)
I will add an additional reply, but first, I want to share the following information, in case you want to direct a response or question to a particular individual.

To mention another Connect member:
Type "@" and member's @username.
Select a name from the list that appears.
When you mention a person, they will get an email notification that you mentioned them in a post. It will also create a link to the member’s profile in the message.
When another member mentions you in a discussion, you will be subscribed and will receive email notifications when new messages are added.

Rosemary

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rckj | @rckj | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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@rosemarya, Thank you for the support and the help of how to use the site properly. Hope I did it right this time. I didn’t know! Also still foggy from illness so didn’t see the conventional address form. I am lucky and fortunate to have the resources I have now. The first five years of my illness wasn’t as helpful on the medical end. I have been ill for ten years which still stuns me. The closest hospital knows me quite well and is skilled in handling adrenal crisis and what precedes it. IV acsess is a hard part. I have small fragile veins and dehydrate quickly so often get a central line or picc line. They are gentle and kind but invasive medical procedures are still hard. Also I am often delirious so my memory is off and delirium itself is hard. Yet, you are right. I am much more fortunate than many others. Thank you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

Jump to this post

@rckj
Our paths afterward are/were different but that shock of the sudden unexpected emergency is always there. Holding on to hope, as you said, is important for your recovery. I think it is even more important for your family to see, as they are a huge part of this process. You are fortunate to have their support.
One thing that helps me is to reflect on the immediate blessings of being able to receive such excellent aftercare as you apparently are receiving. Yes, it is hard work, but worth it in the long run.
Take this time to rest and recover. Allow yourself to let go of your normal obligations and focus on yourself. I am unaware of your background, and that does not matter for what I want to share - I learned it from a dear friend - Every day from 12 noon until 3PM I would take a "nap". Sometimes I did not sleep, but I rested without any interruptions while my husband took all phone calls and intercepted any interruptions.
What are some of the things you would like to talk about?
Rosemary

REPLY
rckj | @rckj | Feb 11, 2018
In reply to @rckj "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..." + (show)
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

Jump to this post

@rosemarya, I’m not sure where I’m going with this but the nap/downtime advice is very helpful. I miss my work. I am a psychologist specializing in trauma, physical, emotional, etc. and every episode takes me away from my patients. I have good coverage for them and they seem to still want to see me despite the absences and chronic illness issues. I hope that I am doing right by them. I worry but also must care for myself. There aren’t many psychologists in my area who specialize in what I do so I hope I am not failing my patients. My covering psychologist is good and says they are doing well and devoted to their own work but I know they worry about me and they shouldn’t have to. I tend to try to go back to work too soon and for their sake and mine must guard against that. I guess all of us have this dilemma in one form or another; responsibilities vs self care. Any thoughts? Thank you.

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