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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.

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Replies to "I am new to this community and to connecting with others who have survived the ICU...."

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.

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?

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