1. < Intensive Care (ICU)

What did you find most surprising once you were out of the ICU?

Posted by Annie Johnson @andreab, Nov 5, 2018

Being in the ICU as either a patient or a family member is a difficult experience for most people. However, transitioning out of the ICU can be challenging as well. When either you or a family member no longer required critical care and were transferred out of the ICU, what were some of the things that surprised you the most?

MODERATOR'S NOTE
The knowledge exchange shared in this discussion helped to create this article written for the Mayo Clinic app. Knowledge for patients by patients and beyond Mayo Clinic Connect.
- After the ICU: Advice from people who've been there https://www.mayoclinic.org/CPT-20514168

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

kathylee | @kathylee | Dec 11, 2021
In reply to @alex12119 "I was touched to see this article come out, and to receive the email that my..." + (show)
@alex12119

I was touched to see this article come out, and to receive the email that my words were included. I'm now almost three years out from my ICU stay. I go through different phases of how I try and work through the symptoms. Sometimes I need to withdraw from spaces like this because it's too painful to engage, and other times, I feel up for sharing and connecting with others. Anniversaries are tough for me, particularly the ones around my ICU stay. The whole experience has been on my mind more frequently as January approaches. I'm doing a lot of thinking about holding space for my grief this year, and for all the ways in which my life changed as a result of my illness. I have found healing in watching my body regain some strength (I'm still amazed at my ability to walk down the street), and in gaining some distance from that time in my life. However, there are harder days, and I really feel that a lot of the people around me expect me to be "over this" by now, so I tend to speak about it less than I did initially. I confide in my closest friend, who I am overwhelmed with gratitude for. And I thought I would reach out here too, and maybe try to be a bit more active. I'm sending support to all of you, and grateful to have this space to return to after all this time.

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Thanks for sharing a bit of your story alex12119! It is such a personal and intense experience it often feels overwhelming. I'm 17 months out from the ICU and still struggling with mobility and a sadness that is difficult for others to understand. I was alone in the ICU due to the Covid restrictions. I truly needed my family to help me deal with the pain, hallucinations and paranoia, but it was verboten. Once I was off the ventilator, I relearned how to use my cell phone I could at least hear from them. It was a blessing! Until I met my new internist a year ago, no doctor had validated my PICs experience. He ordered physical therapy and I am able to walk a quarter mile or so now (using a walker, but up and moving). My life has changed, but I am grateful for each new day. I am able to volunteer at a food bank, cook a meal, play with my dog and give thanks for the wonderful people in my life.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2021
In reply to @alex12119 "I was touched to see this article come out, and to receive the email that my..." + (show)
@alex12119

I was touched to see this article come out, and to receive the email that my words were included. I'm now almost three years out from my ICU stay. I go through different phases of how I try and work through the symptoms. Sometimes I need to withdraw from spaces like this because it's too painful to engage, and other times, I feel up for sharing and connecting with others. Anniversaries are tough for me, particularly the ones around my ICU stay. The whole experience has been on my mind more frequently as January approaches. I'm doing a lot of thinking about holding space for my grief this year, and for all the ways in which my life changed as a result of my illness. I have found healing in watching my body regain some strength (I'm still amazed at my ability to walk down the street), and in gaining some distance from that time in my life. However, there are harder days, and I really feel that a lot of the people around me expect me to be "over this" by now, so I tend to speak about it less than I did initially. I confide in my closest friend, who I am overwhelmed with gratitude for. And I thought I would reach out here too, and maybe try to be a bit more active. I'm sending support to all of you, and grateful to have this space to return to after all this time.

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Good to hear from you, Alex. Can you tell me more about how you “hold space for your grief” especially as anniversaries approach?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 15, 2021
In reply to @crmerwar "In Jan.2020 I spent five days in the ICU following surgery for an intestinal obstruction complicated..." + (show)
@crmerwar

In Jan.2020 I spent five days in the ICU following surgery for an intestinal obstruction complicated by my age ((91), and a cardiac co-morbidity. I had the full-blown ICU syndrome which was one of the worse experiences of my life. The acute manifestations receded after several weeks, but residual symptoms have persisted now for over a year and a half. I know my age and my cardiac problem obviously contribute to my bad feelings. However, I feel strongly that lingering PICUS is responsible for a very significant part of my symptoms. What I continue to experience is, in most ways, almost identical to those experienced by the Covid "long haulers." I have never had any indication of Covid before or after my hospitalization and doubt this the similarity is only coinsidence.
I have tried all the commonly recommended treatments (PT, social contacts, mind exercises) without improvement.
I am discouraged but not depressed; simply tired of the way I feel,.
Charles

'

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Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo ICU nurse practitioner and fellow PIC-Family sufferer @andreab ?

She wrote a series of blogs called "Breaking it down" that helps to explain PICS. Sometimes understanding what's going on can help recovery. Here's how to find the series.

1. Go to the PICS blog https://connect.mayoclinic.org/blog/pics/
2. Enter "Breaking it down" into the blog search. (see attached image).
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3 replies
crmerwar | @crmerwar | Dec 15, 2021
In reply to @colleenyoung "Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo..." + (show)
@colleenyoung

Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo ICU nurse practitioner and fellow PIC-Family sufferer @andreab ?

She wrote a series of blogs called "Breaking it down" that helps to explain PICS. Sometimes understanding what's going on can help recovery. Here's how to find the series.

1. Go to the PICS blog https://connect.mayoclinic.org/blog/pics/
2. Enter "Breaking it down" into the blog search. (see attached image).

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All the information posted has been helpful. Thanks to all who have contributed. Sad to hear from others with experience like mine. Saddest is that few doctors prepare their patients for PICUS. I am a long- retired physician who discovered that I had a clinically definable complication by surfing the internet. I had severe, recurring hallucinations during my ICU stay. You have said that their severity predicts the duration of the complication. Next months for me it will be two years despite following the prescribed therapies.
Charles.

helpful info. thanks to all

REPLY
1 reply
kathylee | @kathylee | Dec 15, 2021
In reply to @colleenyoung "Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo..." + (show)
@colleenyoung

Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo ICU nurse practitioner and fellow PIC-Family sufferer @andreab ?

She wrote a series of blogs called "Breaking it down" that helps to explain PICS. Sometimes understanding what's going on can help recovery. Here's how to find the series.

1. Go to the PICS blog https://connect.mayoclinic.org/blog/pics/
2. Enter "Breaking it down" into the blog search. (see attached image).

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Thanks Colleen! I have appreciated what each person has dealt with. Great information to expand understanding.

REPLY
kathylee | @kathylee | Dec 15, 2021
In reply to @crmerwar "All the information posted has been helpful. Thanks to all who have contributed. Sad to hear..." + (show)
@crmerwar

All the information posted has been helpful. Thanks to all who have contributed. Sad to hear from others with experience like mine. Saddest is that few doctors prepare their patients for PICUS. I am a long- retired physician who discovered that I had a clinically definable complication by surfing the internet. I had severe, recurring hallucinations during my ICU stay. You have said that their severity predicts the duration of the complication. Next months for me it will be two years despite following the prescribed therapies.
Charles.

helpful info. thanks to all

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Charles, I know what you mean about the lack of physician awareness of PICs. My oncologist came to see me nearly everyday during my 10 day ICU and consequent hospitalization. He didn't understand my delirium and hallucinations. To this day I am sure he's unaware. Thank you for bringing up this important point.

Kathylee

REPLY
crmerwar | @crmerwar | Dec 16, 2021
In reply to @colleenyoung "Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo..." + (show)
@colleenyoung

Hi Charles and @kathylee, have you seen the Post Intensive Care Syndrome (PICS) blog by Mayo ICU nurse practitioner and fellow PIC-Family sufferer @andreab ?

She wrote a series of blogs called "Breaking it down" that helps to explain PICS. Sometimes understanding what's going on can help recovery. Here's how to find the series.

1. Go to the PICS blog https://connect.mayoclinic.org/blog/pics/
2. Enter "Breaking it down" into the blog search. (see attached image).

Jump to this post

Colieen,
I have and thank you.
Charles

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