I was placed into an induced coma at Christmas after a sudden illness were my Liver and Kidneys started to fail. It literally did come out of the blue. I am fit and health 40 year old, with no health issues.
After 7 days I was doing well enough to start reducing the sedation.
When I was fully awake again I had no recollection of the 2 days prior to the coma. During this time I was making phone calls, and having conversations with family. I had a 2 hour ambulance journey to the specialist liver unit however i don’t remember any of this.
I have been told all of this is totally normal. None of the professionals have ever said anything to me to suggest that I might now have cognitive problems so I’ve not really asked any questions. All my questions have been around how long it’s going to take me to regain muscle strength and the constant fatigue. But i have noticed since December that I am forgetting so many things that I would not normally forget. I have never had any memory issues. my job is very data oriented and this is quality checked all the time so if I was to forgot certain information or input the wrong information i would be picked up on it by a data analyst and this very rarely happens. I am not yet back at work but this is worrying me now as I am noticeing certain things like forgetting words in sentences. I will be having a conversation and I won’t be able to remember the word I want to use to finish what I am saying, or another thing is I can be told something new to me that is new information for example the name of someone I’ve just met and then an hour later I’ll forgot their name, the same goes with seeing someone I’ve not seen in a long time and I’ll forgot where I know them from but I know I know them. Another thing is numbers, I went to call a number written on a letter I received today and it took me 3 attempts as I kept inputting the wrong numbers.
Has anyone else who’s had a similar amount of time on life support suffered with this? I don’t know if I should be saying something to my GP about it or not.
Another thing I am doing that I have never done before is wetting myself! This is because now when I need to go I can’t hold it in long enough to get to the toilet. Again this is something I’m petrified of happening when I’m back at work. I mean I know there’s things I can buy but I’ve only just turned 40 but am I just suppose to get on with now does it get any better? Should I be saying something?
Thank you to anyone who takes the time to reply back and give any advice x
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Wow I never knew that thank you for sharing this information with me i wish there was more information given after that covered these things unfortunately the booklet I was given didn’t include this x
Hello, im from the UK and upon my discharge I was given a booklet which was written for ICU patients which covered how we would be feeling with our recovery and what we might be struggling with. It also had a little information for the relatives of ICU patients too.
Only in England would someone spend a month in a coma in ICU, hooked up to all manner of machines and suffering from untold delusions and hallucinations - tracheostomized and central lined to buggery, to then be placed in a ward to recover and finally go home.
I know its ridiculous there's no aftercare what so ever - I couldn't even get our local community nurses to come and check in on me when I was home. Thank god for my husband and family! My ICU follow up was four months later aswell which I could of done with sooner and then that was it. x
When I came out of ICU after nearly dying I got the square-root of sod all support.
No follow up, no GP letter, no text asking if I was even alive hehe!
And when I reached out to my GP with awful memories of the hallucinations and delusions his reply was simply a condescending 'Of course the doctors were not trying to kill you, they are there to save your life not take it away'
Ignorant bstard thought I was actually questioning his colleagues instead of asking for some sort of mental health help.
He actually intimated that I should have been grateful to be saved and not criticising the medical staff for trying to bump me off and sell my organs to Chinese middlemen.
Numpty.
I could tell of some other horrific and deeply offensive things that same GP said to me on a home visit to my father whom I looked after with his terminal cancer. But I won't otherwise I'll get very, very angry.
Good luck with your recovery and sorry to bang on about mine on your thread
I actually had to recheck your name because my brain became convinced I was reading one of my old posts. Unfortunately it is 7 years later for me from my induced coma which wasn’t over 12 days back in 2018. I was in my early 40’s, had to relearn almost everything, thankfully I did but with impairment that everything you typed out in your comment I experienced and still experience. Please do get blood tests done to check your vitamin D3 / Vitamin B12 and folate/iron levels done. Request an mri of brain and nerve conduction studies be preformed. Not all damaged to brain is detected in mri scans if so small or hidden yet can have significant impact upon individuals. Hidden damage to my brain hasn’t been ruled out.
Absolutely everything in your post was and is the same for me, but don’t despair things do get better, our bodies do try to adapt and I know your post now 8 months old since you posted it so I do hope now you are doing much better and were offered physio.
Memory loss and cognitive issues are both common side effects of ICU sedation. After two years, I still forget common words in conversation. At times I even type the wrong word, such as "hear" instead of "here" or "there" instead of "their". I used to pride myself in being accurate in writing and conversing - always saying and writing what I intended, and never confusing homophones in either case. It isn't always an issue, but enough to be annoying, and require proof reading, and being more guarded in conversations.
I wish I could tell you these will improve, but only time will tell. I've had to readjust my expectations for conversation, remembering tasks, and how I approach my work. It is annoying at times, but it is what it is. We survived, and that's the most important thing. The rest is just a minor burden to bear by comparison.
It can be passed off as normal if it doesn’t overly impinge. For me it significantly impinges and feels like my brain has been significantly scrabbled in several very difficult frustrating ways and I am since my coma now much slower. My voice can still go on me turning very hoarse and quiet. Walking issues, memory issues, recall, whole body shaking and more. 7 years and 2 and a bit months ago I was placed into my induced coma for not over 12 days, 9 or 10 days or 8 or 9 days but no less and no more. Placed into it 18 jan 2018 and left hospital way to early because I was losing my freaking mind on the incompetent ward they had finally placed me onto from icu I was discharged from also far to soon but at my own request which I really came to regret as the icu level of care I definitely needed and on the awful ward I was placed on no understanding of out of coma patients was available and my recovery severely hampered by that ward’s incompetence and lack of awareness that a higher than usual level of care was required. Patient in next bed ended up being my carer bless her heart of gold despite her being significantly poorly herself. I left that ward on 2nd feb 2018 very unwell on the day and the nurses not wanting me to be discharged that day due to how unwell I was feeling but the doctor who lost my medical notes and another one who wrote lies in my file and was made to remove those lies later refused to listen. They dumped me without any aftercare, failed to ensure proper care was provided for me on my discharge day and that so many people have falls in our UK hospitals during and after treatment does not surprise me at all. It actually mortifies me looking back on the lax level of care received after icu discharge and how my life then became dangerously at risk from lax care. Discharge day from the ward I was dumped in the discharge lounge unable to barely walk feeling incredibly poorly and left for over 5 hours or more my bags dumped around me unable to get to the toilet and the discharge lounge was actually closing and nobody had arrived to collect me. They hadn’t properly informed my Mum and had given her scant details of where to find me, the lounge had fairly recently been moved, it wasn’t signposted, nobody my Mum asked within the hospital knew where it was and even a paramedic with my Mum trying to find it couldn’t either. It was the staff in the lounge who were closing it up for the night who knew were it was went on the lookout for my Mum and the paramedic. I had been in that lounge from early afternoon, my parents lived only 10 min drive max from hospital and I finally left that lounge at about 9:30/10pm and then with the paramedic pushing my wheelchair in the freezing cold dark in snow and ice it took another 30-60 minutes to locate my Mum’s car as she was so stressed and battling something herself we suspected but Mum was in denial of herself at the time that Mum couldn’t remember where she had parked the car and it being so dark and cold made matters worse. It was horrendous and no way without that paramedics help would my Mum have found me, been able to push me in the wheelchair chair herself and locate her car without us both having come to dangerous harm due to the conditions/cold and my health still being so bad and my Mum struggling too. If my Mum had fallen outside in the dark on the ice and that paramedic hadn’t been there I wouldn’t have been able to help my Mum because I could barely walk. Full on disgusting disgraceful lack of patient and family care. I wasn’t discharged until I received my discharge notes and those alone had taken hours to arrive in that lounge. The staff in there were mortified for me and had no idea I was still there until it came to them closing up the discharge lounge for the night. I had actually felt like I was going to do in there! And thank god I did have a drink and some sweets or chocolate on me. I was depressed for the toilet and did manage to get myself into the disabled toilet but it was to low and to slippy on the floor and I fell but not completely ended up not reaching because of missing the toilet not making it and ended up wet and very cold and had had to hold on to my desperation for a wee with an extremely weak bladder until the staff started their process of closing up the lounge. My bladder was weak from the catheter during coma and infection from it as they forgot about it on the ward and really it should have been removed as soon as I arrived on that ward but it made it easier on them leaving it in longer because then nobody on the ward had to help me to the toilet unless it was the other needed that’s not wee. It was convenient for them but put me at high risk of infection and fever and that happened with agonising pain and they forced me to wait ages in horrendous pain and agony moaning in fever and pain squirming until a doctor arrived to remove it. Once removed the pain and agony was immediately gone but the fever and infection weren’t. ICU were mostly amazing though and completely different to substandard nurses and doctors on that particular ward I was on. Found out it had a horrendous reputation and upon further hospital admissions I requested never to be placed on that ward again.
Hi. Wow this was like I was writing the post. Unfortunately this is exactly what I’ve been like and others are suffering from, since coming out of ICU with being intubated and having tracheotomy, pneumonia, kidney dialysis, for AKI etc etc. delirium was bad after one and a bit months in coma Jan-Feb 2023 and on ward then home. Learning how to talk, eat, move, personal hygiene, washing, doing things around the house making tea etc.
Cognitive issues:
I was a successful engineering manager, running a team of engineers and multimillion pound projects. Before going into ICU I was coming to the end of renovating my house, which ment I had and still have things to complete. I have had to wait until this year to make a start on those jobs, with fatigue and muscle lose and trying to exercise. But when it comes to measuring and cutting wood or other material ms or having things made it’s a nightmare. I measure then measure again and again and still sometimes I get wrong, I’ve been an engineer for 40 years so so frustrating. Also I have to use my phone as my Aide-mémoire for everything names appointments little things.
Conversations are hard like you mention, mid flow and I’m stumbling for the right words, or starting a conversation where I babble along until I remember.
You will have found that ICU are the top of their game in terms of keeping you alive and technical knowledge, you move to ward and they are just there to get you home, they really don’t know what’s happened to you, and your doctor has even less idea of what you have been through, and what you are now going through, and how to treat you appropriately unfortunately. You need to talk to specialist for each of your ICU related issues. You sound like you’re suffering from ICUAW, ICU PICS, etc look them up, it will explain a lot. Get as much help from your ICU rehabilitation team if you have one? and you’re psychiatrists if you have one You don’t mention delirium which dose affect a lot of your daily activities
I’ve now lost my train of thought so will stop. But ask questions here anytime if we can help we will
Thank you for taking the time to share a little of your storey.
This forum has helped me alot. I did suffer with Delirium but didnt mention it as I didnt think it would be connected. My delirium was mainly around being held against my will which I can only describe as being trafficked.
I am definitely suffering with the ICUAW, and quite possibly the ICUPIPS by the look of it, at least i now know more than what i did a few days ago.
I can imagine how hard its been for you especially after being sedated for over a month and a half. You must have been on a high dependency unit for quite so time learning how to do everything again. Its frustrating me the length of time its taking and all these things that im now having to get use to. You can tell yourself "be thankful your are still alive" and yes of course we are all very thankful but it doesn't take away the fact you are always going to compare "how you use to be". Luckily I have physiotherapy for the muscle in the right buttock, but I have to learn to deal with the achy muscles in my thighs and knee joints. I do have nerve damage to my right big toe which is quite numb now, but at first would feel like i had a tie wrapped around it! So many strange things and they still cant even tell me what happened or why it happened which scares me alot.
Ive been discharged from the ICU team now, back to the care of my GP whos checking my bloods every three months. My Liver and Kidneys are both back fully working and are in great shape so its one of life's mystery's.
I wish you all the best in your recovery and hope that your house isnt too far off now from being finished.
Sedation for intubation seems to be the cause of delirium and severe nightmares, memory loss, and nerve damage, since so many of us experience it, regardless of why we were in the ICU. Of course weakness from muscle loss is going to happen when sedated for several days or weeks.
Fortunately, most does improve with time. Just as one example, I had double vision (damage to an optical nerve), and numbness in my right thigh from hip to below the knee. Both have recovered to about 95% or so. After two years, I still have some side effects with vision and some numbness from time to time above my knee, but both are just slight annoyances rather than hinderances. Physically, my stamina is around 80-90% of what it was when I was running and hiking previously. However, I'm in my late 50s, so age of course has a significant impact on recovery. I think there was a commenter here in their 30s that was back running within a year, so there are no absolute rules.
Be patient with recovery, and take time. It is great news that your liver and kidneys are in great shape! I know that is a huge relief!
And you are right, just being thankful to be alive doesn't diminish the impact of what we've been through. It is a life-changing event, regardless of any lasting physical reminders. I didn't mean to sound dismissive or pollyanna with my previous comment that "we are alive, and that's the most important thing." That's just what I tell myself when I can't see straight after a long day, can't remember what I walked into the room to get for the second time in 10 minutes, feel exhausted after a weekend of running errands and being out among people, and have to sleep 11-12 hours the next day to make up for it; or wakeup from a dream, confused as to whether it was real or not (I am guessing our minds take a bit of a hit dealing with the nightmares and delirium that seem more real than the ICU world we woke up to).
Hopefully our accounts here are encouraging at least to know you aren't alone; that these symptoms are common, and usually do improve with time. All that aside, there is no mistaking that our lives have changed. We adapt and move on in our own ways, over time. But without a doubt, we can't simply ignore the trauma and impact and "get back to normal" as if nothing ever happened. In a sense, being an ICU survivor has become part of us - not to dwell on in fear or regret, but it does shape how we approach life - perhaps a bit more slowly, and/or with a few limitations - but also hopefully with a bit more appreciation, especially for family that stood by us.
Hello Lux95 aww I shed a tear reading that everything you said I could relate to. I owe so much to my family and those few friends who went above and beyond- without them I would not be where I am now. I definitely have more appreciation for life and look at things so differently now. I've always been told from the beginning that Its going to take around 18 months for me to recover and I'm only in my 7th month- don't get me wrong there's already a massive difference from how I was, its like you said we are who we are now and it will always be apart of us and I think for our family aswell its important to remember that they have their own trauma too - my family where told I may not survive the night and then if I did and a Liver donor became available it would be a 50/50 chance I would survive the operation as I was so weak. I do believe I am living proof miracle's do happen as my Liver took a 360 turn and started to repair itself and after 3 days I was taken off the Super urgent transplant list. xx
Nothing further to add apart from I was in ICU Dec 22 out of the blue like you ...not intubated or ventilated but unconscious for several days after seizure and CPR. No memory of 5 days before ICU or any of time in ICU. Short term memory shot ...talking to people exhausting as struggling to find words and concentrate ...and yes wee holding a problem which has come on more recently . Just knowing it's normal helps but it's also scary if this is as good as it gets.
All these out of the blue ICU admissions are scary -I have heard so many now to the point where i dont think of it as uncommon, and the health professionals they see it alot. Ive had people question me as if I was hiding something as they couldn't fathom that I started with a cold/flu like illness and ended up the way i did. Yes this forum is a good way of finding out if what you are experiencing is normal or not. When I first came home I was always on and off all the time and all night, my bladder was very weak however i have seen a change in that slightly im just not very good at getting there quick enough its like my brain only tells me i need the toilet when its abit too late x
This surprise admission to ITU is bonkers isn’t it! I was the same- fit and healthy 32 year old running 10k and doing Pilates… got what I thought was an awful cold and then I’m waking up in hospital after a 9 day induced coma!! Although I don’t seem to have the long term memory side effects, I have the same problem with not remembering the 2 days before hospital. My husband has filled in the blanks but he could be telling me anything cos it is just GONE. It’s so strange. The only the thing I’ve managed to get back is having to bum-shuffle down the stairs in order to get to the ambulance.
I would 100% have a chat to your GP about it if you’re worried. Hopefully you’ll get called back to hospital for a critical care follow up appointment and you could mention it then as well? My drama was in Feb and I’ve just had a follow up.
It really is bonkers isnt it. But from what I can see now and the more I talk about it the more im hearing it isnt quite out of the blue for this to happen to people. To this day I dont even know why or what caused it, i was abit of a mystery to the consultants and i did have a critical care follow up in April and guess what? out of all the questions i had the cognitive stuff i forgot to ask about - how ironic lol
Hi Sorry just remembered what my train of thought was.
Yes I also don’t remember two days before I went into Hospital it’s a total blank although I am being told all I could say to my partner in those days and apparently in the ambulance talking to her saying I love you continuously. Total blank.
Approach your brain functions like your physical ones and train them like you would at the gym. I would look at web sites for people who have had strokes or head injuries for methods and techniques. If you learn and practice memory techniques, building up concentrating and focusing etc. you certainly can't do any harm. Get going with quick crosswords and sudoku or any other word and number things. As has already been said it take a long time for the battered and bruised nerves and blood vessels in the brain to recover, regrow etc. so it will be hard to know what will heal and recover and what you will have to find ways to work your way around. You are identifying and acknowledging the problems which is a painful and vital step.
Ditto with the peeing. You are going to be doing something consciously that has always been on automatic. If you have a drink you know that in 20 minutes or so you will need a pee, go and have one. If you are out and about and pass a public loo go and have a wee. Think about when you drink so that you minimise the likelihood of being 'caught out'. And practice strengthening the sphincter that holds back the pee - not sure how a man does this but someone will know.
Much of what is written above is very familiar to me. The lack of support upon discharge was staggering (but it was during covid in late 2020). The physical recovery was hard enough but the psychological-cognitive recovery was in many ways much harder. It made the return to work extremely difficult - I simply could not process stuff (I have quite an academic/cerebral job) and the consequent loss of confidence was hard. I think I still suffer this but it's certainly a lot better for me now, almost 4 years on.
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