Post ICU feelings

[Davscot]

After being in ICU and almost dying with IGAS is it normal to be still thinking about this and all the possible outcomes?

[Lux95]

Yes - absolutely normal. An ICU stay is very traumatic given the severity of the illness that sent us there, and the treatment required. If you were sedated, you might have experienced terrible nightmares that seemed all too real, and when waking up, quite a bit of delirium, and then a slow physical, cognitive and emotional recovery. Either way, facing death can be life altering. It's been 3 years for me, and I still fear the next cold or flu turning to pneumonia and ending my life.

If the ICU or a family member kept a diary, that can help you connect the dots of what really happened, and put the fears of what might have, in perspective. Talking about it with other ICU survivors (posting here, or better, in person) helps too.

[Davscot in reply to Lux95]

Thanks for your reply. Im glad others also feel the same way as i do about my time in ICU. I was sedated and venterlated as well as tubes all over my body. When i was woken it felt like i was drunk and unable to do even simple tasks like remove a sticky pad from my arm.It was the first time ive had to stay in hospital and its left me with damage to my lung, being unable to remember anything from arriving in a&e until i was woken 6 days later.

Its the mental side that i cant get over and have been told ive got PTSD from my stay.

I wish there had been a diary kept but my local ICU department had not restarted it after covid and my wife was never told this might help me understand what happened. I feel like ive a 6/7 day memory gap where i cant remember anything.

I also fear getting the cold/flu and worry if i do will it turn into strep A again like last time.

Thanks for your comment and im glad its not just me who has these problems.

[Lux95 in reply to Davscot]

You are most welcome! It can be difficult at times, but be patient with yourself. What we experienced isn't trivial, or something we just "get over" in a few weeks, months, or even years.

It feels rather lonely sometimes, knowing that we've changed, while others think everything is fine and expect a quick return to normalcy from us.

Memory loss during a stay is common, and some have problems with short term memory after as well (I have). I don't remember the two weeks before going to the ER, or the two weeks while sedated and then waking up. My wife was told I might not be the same person after waking up. She didn't keep a diary either, but did have a few notes, and a few facebook posts, but there are significant events missing and gaps of several days. I talked through a bit with my wife, and that helped. But there is only so much she can take - it is hard on family.

Sedation takes a toll on us physically, but also seems to alter or damage some neural pathways that can affect memory, cognitive abilities and/or behavior. Sometimes it is just temporary. I noticed that I can't multitask the way I used to. It was something I intentionally practiced for years, and now it's pretty much reset back to zero. Short term memory is not what it used to be, and I prefer to be alone most of the time now.

Somethings might return to normal, but others may not. Adapting and learning to deal with those changes can be difficult, but you most definitely are not alone. You are younger than I am, so you might restore some normalcy more easily. Post updates and/or ask questions anytime! It's all part of sorting through the huge life-altering detour that is an ICU stay. There is also a drop-in online group someone from the UK can post a link to for you to look into.

[Davscot in reply to Lux95]

Thank you. I do have the short term memory loss with even the most basic things my wife asks me to remember i forget.Im also short tempered now far more than i used to be along with sometimes just wanting to sit watch tv etc and not go out.

Please i would love that link and its something else i can read, listen and speak to people about this.

[Lux95 in reply to Davscot]

I found this link to the online support group in another thread: cc-sn.org/

Also, this PDF on delirium that might be informative: icusteps.org/assets/files/i...

[Davscot in reply to Lux95]

Thank you for these links. I can relate to the icusteps link and it descripes what i did in ICU.

[Sepsur]

I had a Strep A, avian flu, double pneumonia that led to sepsis, septic shock, multiple organ failure and severe ARDS - I say this to illustrate that not matter what takes you into ICU, we all seem to experience pretty similar consequences.

Weakness & muscle loss - ICU acquired weakness

Cognitive dysfunction - poor memory, poor concentration and inattentiveness verging on remoteness

We can feel intense anger, sense of loss, we can have anxiety and terrible insomnia.

We might feel detached and alone, plagued by dreams, guilt and remorse.

I found speaking with others that had experienced similar immensely comforting - at last my experience was normalised by others - I found everyone else was too eager for me just to be well without understanding the deep life changing trauma of almost dying ( without really having been there - my body had but I was in a coma).

I found PICS described everything I’d endured.

[Davscot in reply to Sepsur]

What you said about post ICU is what i feel just now almost 2 years later. I ended up in tears 1 day in ICU just thinking about what my wife would be doing if i had died, silly i know but i still think about these things as well as all of the other issues ive been left with.I also have found that my family have expected since i look better i must be fine and life moves on. They have like you said normalised what i went through but no one stops to ask if im ok etc.

What i remember happening is not what did happen which is also hard to deal with on top of the life changing trauma of Strep A. It was only after i went back to thank all the staff for there efforts that i got speaking with some of the staff who directed me towards ICUsteps and also said i had PTSD from ICU, also they fast tracked me to the metal health team and the person who deals with recover from ICU.

Im glad after getting replys from you and others that i know what im feeling is normal after being in ICU and that im not alone in this battle.

[Sepsur in reply to Davscot]

We meet every Thursday night at 19.30 on zoom - a warm & diverse group from 8yrs post ICU to left a month ago cc-sn.org

[Signingfun]

I spent most of 3 months in the ICU in a coma because of acute pancreatitis caused by gallstones. My body started to put me into a coma before I was seen by a doctor in the emergency department. Three days later I was in multiple organ failure. Acute pancreatitis changed to necrotizing pancreatitis with pseudocyst and reoccurring sepsis. I went into the hospital 14 years ago this month. Once I woke up, it was difficult to do everything. Because of complications, I spent the next year in and out of the hospital. After my last surgery, I became physically disabled. It has taken years to recover emotionally and physically. I have had many conversations with my husband and with others who have been in a coma. I would say, staying positive helped me, even though it was difficult at first. Also, focusing on improving, no matter how small the improvement. My life has completely changed since that emergency department visit, but I have found life in the slow lane.

[Sleepalotmore]

It is absolutely normal! I'm almost 5years out of icu, where I had respiratory failure and then pneumonia and family were warned 4 times that I wasn't going to make it.I still, even now, think of what could have happened and how I might have been worse than I am now.

Even at my daughter's wedding last year, I got tearful at the thought that if things had been different, I would have missed her big day.

So please don't feel you shouldn't have "what if" thoughts it's understandable snd a way of processing the experience.