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

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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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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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?

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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?

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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

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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.

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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.

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Hi Alex -- Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days -- with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression -- and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form -- and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock -- important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

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Hi Alex -- Yes, it's helpful to create your own chronology, and getting your medical records will help a lot. I was in the ICU in January 2018. I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days -- with no memory of it. Then the after-effects were profound. Terrible weakness, confusion, exhaustion, anxiety, depression -- and all completely unexpected.
Thus it was some months later before I was mentally strong enough to face seeing the official account of what had happened to me.
My records were free in electronic form -- and I'm so glad I got them. That's for several reasons. First, they gave me a timeline beginning with emergency intubation in the ER and ending with discharge. Second, they gave me profound appreciation and respect for the medical professionals who round-the-clock really pulled out all the stops to save my life.
And third, they gave me important information I hadn't received when I was discharged. Neither my doctor nor my discharge papers mentioned I'd had severe sepsis and septic shock -- important things to know as sepsis survivors have an increased risk for repeat sepsis. I only learned I'd had near-fatal sepsis (and acute kidney failure and other serious conditions) when I read my medical records. For my own protection I needed to know this.
And also for my own recovery. Like so many survivors I was discharged with scant follow-up. I discovered PICS on my own; I had to craft my own recovery plan because my doctors had no clue about PICS and offered no help for it. My hospital records helped me do that.
(Currently helping me is the book "After the Diagnosis: Transcending Chronic Illness" by Julian Seifter, MD and Betsy Seifter, PhD. It's really good!)
My records also helped straighten out confusing stuff. My poor family and friends had been so traumatized by my near-death that their memories were understandably unreliable to varying degrees. The records helped sort out the confusion of what really happened.
Quite by accident I discovered my hospital kept multiple sets of records. The first ones I got were the abbreviated version. Not a lot of information. Later I learned that I should ask for the complete nurses notes and the doctors notes. I did, and that's where I learned about sepsis. So if you ask for your records, make sure you get the most complete, thorough version. All the medical terms will make it heavy wading, but that's why God created Google, right? Just google the terms and you'll learn a lot.
I have next to no memory of being in the ICU, so I didn't know who took care of me. Thus I had no one to ask for when I screwed up my courage and many months later returned to see where I'd been. I needed to see it for context as I had none. I needed to see it to master the trauma I'd been through. A couple of ICU nurses kindly talked to me and reassured me. Just talking to them and hearing their compassion was so helpful! I'm glad I went back.
Finally, you might ask anyone who visited you in the ICU if they took any pictures. Two of my family members did, but they didn't want to tell me for fear of traumatizing me. I asked to see the shots anyway, and seeing myself intubated and surrounded by so much medical equipment made the situation very, very real. I could see what I went through. And I knew why I had a right to be so very grateful to be alive.
Peace and best wishes for your recovery. It will take a while, but it will come. You will be strong again.

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