Hello Everyone. I am new to this discussion and all I can say after reading many of the posts is WOW! I have read many posts about knowing anything about PICS or having medical staff that know or understand PICS. You have been the trailblazers for patients like me that now get some information upon discharge. And to have the ICU Follow-Up Team with @andreab to introduce me to this discussion and help me start to cope with things. I have not been critically ill before my scary night of struggling to breathe nor have I ever had any chronic illnesses. Like many of you, I am struggling with not being able to "snap back" to normal within days of being released from the hospital. I have been back home for almost 6 weeks now and while I am doing well with my recovery some things are still affecting me.

For me the biggest thing I still struggle with is the fear and anxiety that it will happen again. I had Adult Respiratory Distress Syndrome (ARDS) and got sick fast with no warning. In less than an hour I went from feeling normal to not being able to breath. It is also hard for me to accept that some things like climbing stairs still makes me winded.

Adding a response to the original post on this board, I also found the transfer from ICU to a normal hospital room was a big change about the level of activity going on around you. I can say a comparison would be when I worked Black Friday in retail (ICU) to my current job quietly sitting at home working remotely on a computer all day (non-ICU). I was sedated my first couple days in the ICU so I was not awake for the worst of the it. And after I was no longer sedated, my whole ICU team was very calm and level-headed, there was still a sense of fast-paced activity.

The transition from hospital to home for me was that everyone around me was one extreme or the other. Either they treated me like I was no longer sick and "back to normal" since I was out of the hospital, or they treated me like I was so sick I couldn't do anything for myself.

Once I got home, I was not at all prepared for waking up in the middle of the night thinking I was still in the ICU. It took me about a week to be able to wake up and know I was at home. One thing still happening that I am struggle with is that I feel like I am actually losing my memory of what happened while I was sick. I am finding out more information that sometime contradicts my memories so I don't really trust my memories of that time any more. And I am realizing that the memories I do have do not accurately reflect time. It is things like thinking I was only in the ED (emergency department) for a couple of hours before being transferred to the ICU when in reality the line between what was the ED and what was the ICU is completely blurred (or missing) in my mind. I remember being loaded into the ambulance but don't remember being rolled into the ED. I remember being taken for a scan of my lungs but don't remember getting back to a room. I remember being placed on a c-pap machine but don't know if it was the ED or ICU. This was all on a Sunday. I don't have any other memories until that Wednesday. They told me I was sedated but that for 2 days they would bring me out of sedation for a little bit through the day. I have zero memories of that. I actually felt bad when someone who helped move to out of the ICU told me she was there on Tuesday and I had tried to write someone down and ask her something. I had to admit I had no memory of doing that.

Thanks again to everyone who is sharing their story here. I hope to be able to come back to here and post more and read more as time passes.

Jennifer

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