I was rushed into A&E when I was away from home on a weekend trip for Easter (17/04/22) and was diagnosed with necrotizing pancreatitus. I remember being in the bed in A&E and them saying I needed to stay in a few days.
Fast forward to 02 June 2022 and there I am surrounded by strangers in ICU unable to speak and having no clue what had happened.
I then was advised my lungs collapsed 19/04/22 followed by kidney failure 3 days later. I'd spend 38days fully sedated on life support with 3 weeks of that on dialysis... I had no idea what had happened but in my head there were about 4 interlocking stories between me being missing, my parents arguing about a divorce, trying to escape a hospital as the doctors were trying to kill us and a cult of baby farming! It's ludicrous now to think of it all but it felt so real and I still get flashbacks.
I'm home now bit feeling like I'm going through so much and as I've been discharged and awaiting appointments for surgery, I feel like I'm in limbo and have no one to speak to.
I feel weak as I'm still unable to walk a distance unaided,I'm still using a stool in the shower and a wheelchair if I need to go outside.Is this all normal?
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Just to add there were also 3 attempts at a tracheostomy as one fell out and the second was the wrong size. I'm still struggling with damage to my throat...
Strange vivid dreams in ICU are very normal, and flashbacks to them. Dreams of being in a strange hospital seem to be very common too. Muscle weakness after being in ICU is common. Throat damage after a trachy also. Been there, done that got the scars.
We survivors have been through a lot.
Having no-one to talk to is sadly also common. That's what this site is for.
If the hospital did an ICU diary, or you can get hold of your notes, people seem to find that helpful sorting out what really happened and what was a dream.
They did a diary for the first ICU I was in but I'm not ready to read it yet. It is mice to know I'm not alone, it feels like I'm exaggerating when I talk to people about it though, but I'm not. Some of what was in my head was quite harrowing. Still getting to grips with post trachy scars and it feeling tight... plus a lot of glue-like saliva
What you are experiencing is all very normal to those of us icu survivors. Distressing, unsettling and often painful. But believe me, you are far from alone. People on this site are so helpful and understanding. The tracky scar will heal, I still have a small scar 2½ years on but its faint. I call it my survivors medal 😊.
For you, it's still very early days. Give yourself time to get stronger. Although also be prepared to be weak for a long time. I'm still weaker than I used to be and tire easily. Again, all normal post icu .
It sounds like you've been through so much! This is definitely not unusual though. I was taken to hospital with Pneumonia and woke up a week later thinking I'd been kidnapped as I didn't even remember going to hospital (in spite of being awake and lucid at the time). I also had lots of strange dreams and hallucinations (thought one nurse was trying to kill me!), even after I woke up (I was in ICU for a month), and flash backs - even 18 months later. As Kit10 above says as well, weakness is very common because of muscle wastage from being in bed. Hopefully, you'll get some physio for that. I had a trachy as well - I was initially intubated orally and they thought I was getting better and took that out but then had to intubate me again via trachy. It took about 6 weeks to heal. I know how nerve-wracking all this can be but I hope it helps to hear that you're not alone and that others have been through more or less similar experiences.
BTW, I had a lot of what felt like mucus after I got home as well as feeling like I had a lump in my throat every time I swallowed. that took about 6 months to disappear completely.
Anyway, I do hope this helps and that you are getting some support x
There is nothing normal about being in ICU and what you are going through is completely normal. It does help to talk especially to others who have been through the same as you. Critical Care Support Network cc-sn.org/ provide drop ins on zoom every Thursday at 7-30. In addition on Tuesday at 8 there are drop ins for relatives. They also provide a range of exercise classes and mindfulness on most days.My hallucinations were complex and integrated, they don’t cause me any problems any more but I can remember them very clearly. They were so real. As far as I am concerned I lived in another world was in a coma. Quite lucky really 🤭
Waking up in ICU is confounding - everyone else knew me and what had gone on but I knew nothing - didn’t even remember being ill enough to be blue lighted to hospital as all my organs were failing.
I had no way of asking questions with a trachy but I also didn’t want to look stupid ‘ like I didn’t have a clue’.
I had terrible dreams like you - it’s called ICU delirium - I’m still unsure about what was real and unreal ( subtle things not the obvious 😜)
I had ICU acquired weakness and needed a frame on the loo to raise it & a shower stool & I used a wheel chair when I couldn’t do anymore.
A normal adult male uses 2.5k calories a day, when you are in ICU, the body can use 6.5k calories - stripped from the protein in muscle hence the muscle waste & weakness.
Because of the minimal help I received- a few of us set up a charity called cc-sn.org
We try and help people help themselves to get back as much as they can. I know one of our members had exactly what you had ☺️
Thank you all so much for responding. I remember in my hallucinations that I was in hospital bit in a foreign country and no one understood me plus I had no voice. I was convinced my best friend (2 x cancer survivor and who has had a fill hysterectomy) had given birth, I also thought it was 2023 and for 4 weeks post sedation was convinced the Queen and Charles had died and I'd watched their funerals... Not having a voice because of the trachy when I woke up didn't help, but I must've seen people qhen my eyes were open (apparently I did that a lot) as the main Doctor of the ICU and the elderly lady in the bed opposite me were in my hallucinations- it was good to know upon waking that the Dr wasn't selling me and others off for body parts and he was actually really nice. But the other things that happened seem so daft yet so real a d I still question somethings.
The muscle weakness I'm coping with, even the loss of hair - a buzz cut suits me - but it's the not wanting to feel a burden on my partner when even simple tasks make me so tired or he still has to watch me shower so I don't collapse. I'm so independent and all this is a strain on that. But I'm alive after my parents were given a 15% chance of me making it so I am grateful- the care I recieved was amazing.
TW : It's a weird one to ask, but was anyone else told they nearly didn't.make it a d temperature having timers or situations that gave you a limited time to escape? I had three and ea h time I fought like hell for a solution out of something.... it feels like a knew I had to survive...
I was told much much later that I had less a than 1% chance of survival - which is sort of weird, I don’t know how they qualify or measure level of ‘near deadness’ - anyway I survived and fought tooth and nail to be independent again - I certainly didn’t want to be a burden since my partner was nursing both of her parents at the time…ultimately they became much more reliant on her.
Hi. I had the dreams and was all over the world but mainly Scotland, Cyprus, and France. Often in hospital situations , but mostly near death experiences, with even nurses trying to kill. I thought people I knew had died, and other patients were also dying. It was not until I woke up in ICU and one of my nurses said that I had been here all this time and no one had died did I realise I had been in a very long nightmare. I dont have these dreams anymore, but remember most of those I did have.
My next of kin were told on more than one occassion to expect the worse and I would likely not pull through. But I somehow I did survive both stints in ICU, and the dr's said I must be incredibly strong. What they did say is that they may not be able to intervene in similar ways again as my body wouldn't be able to cope again with the trauma.
Anyhow 2 years later I am still fatigued and have permanent kidney damage, but currently doing regular program of exercises which has helped improve my mobility, balance and fitness. Meeting up with friends has helped get over any emotional effects of 14 weeks in ICU.
Hi, hope your doing better now, completely normal…. I was in ICU four months, 1 month in an induced coma!…. Your bodies been through so much, the hallucinations were awful, my partner went abroad and adopted a child called Mia, my house had bubble wrap around it and they made a pool and the ICU staff was there, I was on a boat where awful stuff happened, family members passed, son trained to be a dr and was trying to kill me and a lot more….your mind does strange things, it took me a while to understand that this wasn’t real, I wrote a blog when coming home about my experience and I think that helped me. I had to learn to walk and when come home I was exhausted, unbalanced and could only walk short distances, Couldn’t bend, needed to be lifted in and out bath and escorted up and down stairs and suffered with vertigo and had a B12 deficiency!
The flash backs could be PTSD, or where the medication hasn’t had a chance to release from your body - it took me over a year to feel slightly as if I was me again, your bodies been through a lot, I wish I’d found this group for support, to know that this was all normal, obviously speak to your doctor if worried.
Keep writing things down, talk about what you have been through!
Only those of us who have been long term ICU visitors can really understand.
I know nothing of the original illness thankfully but everything else that you say, including the collapsed lung and the kidney failure and the tracheostomy are things that I would almost expect.
Also the crippling weakness.
Everyone told me that it would take me two years to recover and I thought NAH I’ll be better quicker than that. And guess what, it has taken me that long. As I said I can’t comment on what else is happening medically but all of the post ICU stuff will sort itself out and the fact that you have written here shows that you know that all,of the crazies are just that.
Don’t even bother trying to make sense of them. I worked out that there three categories of things that happened.
1 things that definitely happened
2 things that definitely didn’t happened
3 Things that I really wasn’t sure about.
The third category could be divided into two Ones that were crazy and could be safely committed to the same place as childhood bogeyman dreams, the toilet monster never did jump up and bite me on the bum. And the more interesting category of things that I only experienced through one of my senses because the others were disabled. Because I might have only heard something I interpreted it in ways to do with my past experiences rather than having the fallback of all of my senses to add up all of the experience and make a sensible assessment of what was going on.
The weirdest one was being convinced the Queen had died and I'd watched her funeral (and strangely King Charles's too!?!?) so the passed few days have been surreal....
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