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?

@heartbreaker

I was aghast that I knew about PICS but the ICU staff and D/C planner did not. The hospital where I was in ICU could not provide resources to help me. About a month after open heart surgery, when I was no longer worried I'd survive, I began having painful flashbacks and reliving the painful and prolonged extubation, as well as the pain every procedure and tube caused. I had to call the suicide hot line to speak with someone about my mental anguish. That did help, but why didn't the ICU have this on their radar?

Jump to this post

@heartbreaker I am sorry you had such a difficult time during your recovery. To physically survive what you went through only to then be left with the intense emotional difficulties seems entirely unfair. However, you are certainly not alone in this. Feeling this way, having flashbacks and nightmares, is very commonly shared among people who have survived critical illness/injury. Post ICU syndrome and the experiences that people have following critical illness/injury are really just now getting the attention from the critical care world that they really deserve. I do want to assure you that there are collaboratives and teams around the world who are coming together to help raise awareness of this issue and who are working to help people not only survive the ICU but to survive and heal in a complete way which allows them to regain as much of their pre-ICU life as possible. Thank you for adding your story to this very important conversation.

REPLY

Here is a link to our newest Blog post that relates to this original post! Feel free to share with us the story of your transition out of the ICU…
https://connect.mayoclinic.org/page/pics/newsfeed-post/beyond-the-icu-discharge-from-the-icu/

REPLY

I wish I would known that a mucous plug could develop after spending 8 days on life support. A couple of days after leaving ICU I would cough and my airway would be blocked for a few seconds – very scary. One night it lasted longer than a few seconds, I coded and went back to ICU on life support for another 24 hours. It was very hard to explain 'I can't breathe' to my medical staff because once they arrived after I pushed the call button I was already better. I was still pretty foggy after being in ICU and 'I can't breathe' was all that I could think of to say. Of course when you're talking to someone and say 'I can't breathe' they're going to tell you 'you are breathing, you're fine'. A year after my illness, a friend's husband had an extended ICU stay. I told her about my mucous plug incident and to make sure her husband stayed on top of the breathing treatments and to use all coughing devices provided – pickle, incentive spirometer, etc…. She was thankful for my advice as he did end up getting a mucous plug.
I have a long list of things that still surprise me 18 months post septic shock/ICU…that's just one that stands out the most.

REPLY

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

REPLY

I was not in ICU but was in a coma Jan 2019, for 5 days. High ammonia levels, my Meld was 26. I had a lot of hallucinations and paranoia after I woke up. It took almost a week to feel better. They attributed my cognition to a high ammonia level. 24 day of lactulose worked but caused me to have the runs nonstop.

REPLY
@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

100% correct. We hope the Mayo N.P.'s take note of this trauma, which I also experienced, and start a program to educate clinicians in the U.S. Something good will then come of it. Offer CEU's. Otherwise, no one will read the literature.

REPLY
@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

REPLY
@alex12119

I am new to this community and to connecting with others who have survived the ICU. Reading other's experiences has been so helpful, so thank you all for sharing. I feel so much less alone. Similar to what others have shared, what surprised me most was the lack of education on PICS upon discharge, and the continued lack of awareness from my healthcare providers. While I was still in the ICU, the psychiatry team told me my experience could be accurately described as trauma. That was the first and last time anyone checked in about how I was doing beyond my lab values and organ function. There was no follow up from that conversation, no post-ICU clinic, and most surprisingly, I had to discover PICS through my own research and bring it up to my doctors, despite presenting with flashbacks, nightmares, and other intrusive re-experiencing symptoms of my time in the ICU, in addition to having ICU acquired neuromuscular weakness that has left me using a wheelchair. I couldn't believe that all of this, including the emotional and physical effects are not only named, but common! How is there not more awareness? I'm doing my best to educate the people around me as I heal and process my own experiences, hoping that maybe I can help someone else.

Jump to this post

It is very frustrating when you trying to piece it all together. Then to top it off trying to just heal inside and out and try be normal again. I have not had nightmares or hallucinations but i find im battling understanding the physical side after icu.
But i was also not told a thing for what to look out for or what to expect when i get home. I was lucky though to had made friends with the icu nurses, so i msg them to sometimes put pieces together. I do hope u get more answers

REPLY
@colleenyoung

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

Jump to this post

Why is it that people dont understand the long and short term? Why are people so blind to the fact that you might not even be here anymore. My family were called to come say there goodbyes to me on the 17th june and yet it feels pretty much like now i am expected to be 100% physically and emotionally. I dont get the nightmares, but i often burst into tears in realizing i might not have ever seen my 2 sons again

REPLY
@colleenyoung

Welcome, @alex12119. I appreciate your advocacy with respect to PICS. More people and professionals need to understand its short and long-term impacts of people's lives. You may also be interested in these discussions:
– Post ICU Nightmares / Hallucinations https://connect.mayoclinic.org/discussion/nightmares-hallucinations/
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

How long ago was your ICU experience? Is the acquired neuromuscular weakness reversible? How (and where) have you found support and help in managing the long-term effects of PICS?

Jump to this post

I was in the ICU in January of this year, and was discharged from the hospital in February. As for the neuromuscular weakness, we expect that it will be reversible with intensive PT. I've already come a long way in my healing, although I've also had some setbacks that factor into the weakness I still experience – in February, while still in the hospital, I fell and fractured my tibial plateau, which complicated my recovery as I couldn't bear weight on that leg. I'm starting to transition out of being in my wheelchair full time and to using a walker part time, but still have a ways to go. I have found help from the mental health treatment I was already seeking for PTSD unrelated to my PICS (that I do believe made me more vulnerable to PICS). I've received both outpatient and inpatient help in managing my psychiatric symptoms as I physically recover.

REPLY
@cindyvag

It is very frustrating when you trying to piece it all together. Then to top it off trying to just heal inside and out and try be normal again. I have not had nightmares or hallucinations but i find im battling understanding the physical side after icu.
But i was also not told a thing for what to look out for or what to expect when i get home. I was lucky though to had made friends with the icu nurses, so i msg them to sometimes put pieces together. I do hope u get more answers

Jump to this post

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

REPLY
@alex12119

Thanks for your response and for sharing your experience. I'm sorry that you've encountered some of the same barriers. That's great that you have some connections to the nurses who cared for you. I find myself wishing I could talk to mine. As far as getting answers, I'm currently working on writing down everything I remember. I'm considering obtaining my medical records and asking a close friend who came to visit what she remembers to help me put those pieces together, like you said.

Jump to this post

Thats great if you could find your records even go chat to nurses they actually very accommodating. Experiences where you dont remember is the absolute worse… i find i am in lala land so to speak trying to just figure my emotions out. The physical is even harder and i do pray you get answers and heal

REPLY
Please sign in or register to post a reply.
  Request Appointment