Where do we go while we're unconscious on a ventilator? My experience of being on a ventilator in ICU, Royal Brompton Hospital UK.

[Pmub]

I'm hoping that by writing this post it will give some small amount of clarity and comfort to anyone who has been or who's loved one is currently on a ventilator. I must start by saying this is My personal experience and it will differ for everybody although there are certain experiences about being intubated in ICU that seem to remain constant.

About 3 years ago I had major heart surgery after a 10-hour operation I was put on to a ventilator to help and assist my body's recovery. During this time I was heavily sedated and unconscious as tubes were put into my nose and mouth to feed me and breathe for me. There were tubes everywhere to maintain all my vital functions.

The last waking memory I have was being put to sleep by the anaesthetist. What follows is just a short recount of the experiences I went through while under sedation. I must stress at this point that this was all purely in My mind and due to the side effects of the very powerful drugs that were needed to keep me in a stable unconscious state while being ventilated.

The hospital caught fire! I was transported by a flying canal boat to a empty football stadium where I was loaded into the back of transit van, very badly disguised as an ambulance. The nurse was not real she was just dressed as a nurse pretending to be looking after me me! I decided at this point that I needed to escape and I struggled and fought with her for the whole journey. I woke up in a fake hospital room above a pub in Brighton! They had put tubes into my mouth secured to my cheeks to keep me in the hospital bed, I knew I had to pull these tubes out in order to escape so I would wait until the nurse wasn't looking reach for my mouth and tug on the tubes. The nurse would always catch me and move my hands away, I was transferred to another fake hospital room between the passenger decks of a p&o cross channel ferry. I kept trying to pull out the tubes and flinging my legs out of the bed to make a run for it but every time I was stopped and restricted from doing this by more fake nurses and doctors. I remember pushing a fake doctor away who was trying to to put a mask over my mouth to subdue me with sleeping gas.

I failed to hold him off and when I awoke I had been transferred to a canal boat but there was no tube in my mouth anymore. I laid on the bed gazing out the window of the canal boat planning to leap out of the bed that I was lying on at my first opportunity!

(At this point in REAL LIFE the medical team had decided to perform a tracheostomy on me to stop me trying to remove my breathing tube, they had been trying to bring me back to consciousness but every time I would become aggressive and agitated to the point where they needed to sedate me back to sleep again.)

There were many, many other experiences under this sedation too many to recount in this post. Mine all had the same theme of being held against my will by people pretending to be medical professionals. I remember waking up at one point with my partner next to my bed telling me that I had been asleep for two weeks!! This completely blew my mind, I could not speak because I had had a tracheostomy. Over the next couple of weeks I was very confused and although I was now semi-conscious I was heavily hallucinating and slowly I started to realise that I was in a real hospital. although I did find it a little strange that there were small fairies flying around the ward with pieces of broken mirror suspended beneath them which I thought was rather dangerous for hospital but I was calm and quiet and just spent a lot of time gazing and listening to the goings-on of things around me.

It was difficult to do much else because I couldn't talk and my muscles had wasted away, I was too weak to write down or text what I was going through, but I was calm and that was the main thing.

My kidneys had failed and I was on a filter machine one of my hands had swelled up like a balloon as well as my ankles. I remember facetiming my family and still trying to mouth words even though nothing came out, it was all very frustrating and confusing and distressing as I thought what I would not recover from all of these things that were happening to my body.

At this point I had been one month in ICU and finally my senses were slowly returning. I was transferred to the high dependency unit at this point, what actually gave me some clarity was that the man in the bed next to me who was on high levels of morphine I believe was kicking up such a fuss saying that he was being held captive above a bookshop in muswell hill. They even got his partner on the phone to try and console him but to no avail.

This was the first time I realised what I had been going through and this was the point where I started coming back down to earth.

All the staff in ICU and the hospital in general are amazing people. They looked after me as if I was a member of their family and put up with all my crazy antics as a matter of course. I cannot thank them enough.

I know this story sounds completely bonkers at points but it is what I went through and I hope somehow it will help people recovering as well as their families understand some very bizarre and distressing behaviours a person may go through while under sedation.

So please if your loved one is displaying very distressing behaviour while being intubated or on a ventilator, it is a good sign that they are are fighting and have have a strong will to live and survive.

It took me about 6 months to mentally recover and understand my experiences were all just fabricated in my mind.

It did take time for my body to recover and to build back the muscle that has been lost, at first I was so worried that I would never be strong again.

It has been 3 years now since that experience my body has recovered and I can honestly say that I am physically well & mentally stronger than ever before.

Thank you for reading my story, I hope that somehow it will give people the strength to keep going and the belief that things will get better.

Mike

[Sepsur]

I had to smile at some of this ( in recognition) . Broadly, no matter what took you to ICU, we all seem to experience a very similar pathway back to life.

[Woo2]

Thank you so much for this post.

Many of the themes of your sedated nightmares and hallucinations are similar to those I had.

Journeys, being kidnapped and trapped, being killed, fake nurses and hospitals, conspiracies etc...

I did have some benign ones in amongst the terror though:

Christmas in Yorkshire with all the family..

Helping the ICU team to vaccinate chickens against Covid at poultry farms.

The hospital had various wards which reconstructed healthcare through the ages, and which the participants were recorded for a Radio 4 programme.

Real nurses and celebrities role played doctors, nurses and patients. I went from the Victorian ward (fierce nurses, smoking doctors) through to pre-NHS (nurses taking payment for treatment) to the 1970s (DJs in bed, broadcasting between. coughing fits - lots of beige). I asked to be taken back to the modern ward and we went up a secret lift to it, pushed by a porter who wasn't allowed to speak.

The waking hallucinations were equally as freaky!

[Pmub in reply to Woo2]

Thanks for the reply Woo2 it did make me smile reading about your experiences it all sounds so familiar. I found it really helpful during my recovery to read about other people's experiences and realise that it was due to the powerful side effects of the sedation and painkiller drugs etc.. it's been three years since my experiences in ICU and yet I still remember them like it was yesterday but in a positive understanding way now. I'm glad you made it through this terrible virus and wish you all the best on your road to recovery.

[RockRunner]

Thank you for this. It’s so helpful to hear from those who have been through it. I’ve been unable to see my husband due to CoVid and he has been on a ventilator 53 days now, he is awake but, whilst can mouth words, can’t yet speak as not strong enough to have speaking valve on tracheotomy. His delirium seems to have passed and he is now responsive and calm but down. He will continue to be on the ventilator for many more weeks and it seems his kidneys are permanently damaged and he will lose his thumbs and some or part of other digits. So this will be life changing physically and then we will have the mental impact. But he is still fighting which is the main thing

[Sepsur in reply to RockRunner]

I’m sorry to read what has happened to your husband. You never know what the final outcome will be. I was warned that I might never gain use of my hands & fingers again, and although they can be stiff on occasion & I get trigger finger etc etc, I have use of my faculties fine. I was told that my lungs would probably never recover from severe ARDS, I have minimal scarring on my left lung. Staff weren’t sure if my kidneys, lungs or heart would recover. Whilst undergoing immunotherapy treatment for leukaemia, my nurse mentioned how healthy my heart was, I left ICU with my resting heart beating at 130 per minute - a year later it was 49.

My kidneys & liver are functioning really well - again there was real concern they wouldn’t work well.

I became diabetic thanks to steroid treatment of leukaemia - this all puts pressure on system.

You won’t know for a little while what are the long term effects for your husband. I wish you both well.

[RockRunner in reply to Sepsur]

Thank you that is good to know, glad you’re recovery was better than expected. My husband’s thumbs and fingers are black so like frostbite he will lose them, but he will adapt I’m sure. Once he is ready to leave ICU (still a way to go) he will be discharged to a renal ward in another hospital so will be a long time before he is home. I am hoping at some point we will be allowed to see him but no visitors allowed or planned in the near future.

[Mccarthy0702]

My dad is day 50 , he’s getting a little stronger every day . FaceTimes is becoming difficult as he also not well enough for speaking valve , becoming frustrated. He does look very down and we have had tears .Last three calls his delirium seems to have calmed down tho.

It’s such a long road and he’s still weaning off ventilator , he’s asking for a cup of tea every call now and it’s so cruel to say “no” they must be so thirsty after all that time .

Just trying to remain positive and be grateful how far he’s come , he asking to go the toilet and stand up he’s nowhere near doing that but shows us he’s going fight this all the way to get there .

Your experience does explain why my dads refused to sleep for over a week , he must definitely was experiencing something similar to yourself . Thank you for sharing .

[Pmub in reply to Mccarthy0702]

Thanks for your message I was hoping it would give some clarity to some people on both sides of this recovery process.

I was craving orange juice or any drink really, it was all I could think about along with the frustration of not being able to talk. At this point in recovery I didn't realise that the inability to speak was only a temporary thing so it might be useful to assure him of that but I'm sure someone would have told him that already. It's a really good sign that your dad wants to get up and start doing stuff. I remember as soon as I was able to speak trying to convince the matron to let me go out for a walk in the park across the road and I promised that I would come back!

It's great that your dad is awake again as his body can now start regaining control day by day. I know it's hard to do but try not to worry too much your dad has already come a long way.

[DrARDS]

Wow. What a great insight into delirium and the mind in the comatose phase.

I’m so pleased to hear you are making good progress after such an ordeal!

Your dreams/delirium sound so detailed and captivating. I hope they still don’t haunt you. Do you sleep well these days ? What measures did the doctors give you to help on this front?

[Pmub in reply to DrARDS]

Hi DrARDS, I'm glad you could grasp how completely bizarre this delirium can be. Unlike dreams which are largely forgotten almost instantly after waking, these different scenarios were played out in my mind in real time. I could hear consultants talking, members of my family at times as well (I guess this was when when they were visiting my bedside).

My eyes were closed most of the time but in my mind I was maybe being taken somewhere on a helicopter and I could definitely recognise familiar voices from members of my family.

I spent months after my experience in ICU trying to grasp what actually happened to me, I even drove to one of the locations (which was in my hometown) that I believed I had been held captive in just to confirm that it was all in fact fabricated in my mind (Obviously this house didn't even exist!) But I still had to just clarify that, just to be sure. Seems completely mad thinking about it now but it did help the recovery process, separating what is real and what was imagined in a delirium.

I'm not sure if all the ICU's do it but the intensive care nurses start a diary after you have been in for more than a week which you get given a few months after going home and in it they would just write a paragraph or so about how you were getting along, whether you were calm or agitated, that you could make responses by squeezing their hand etc.. The diary was so helpful as it fills in some of the gaps between initially being sedated and being discharged from ICU four weeks later.

The hospital called me back a few months later to be evaluated by psychiatrists and various heads of departments who explained a lot about how the mind copes when put under these stressful situations. I also got to meet a lot of the people who had looked after me and revisit the ward and even shown the bed that I was looked after in. This was also very helpful as I could now orientate my imaginings with the reality of where I actually was being looked after. Thanks to this extra help and aftercare I didn't have nightmares about my experiences as I was able to talk about them in-depth with friends & members of my family. This all helped me to put my bizarre experiences into perspective.

I found the website "Icusteps" and read about patience experiences and this helped a lot, which is why with so many people unfortunately being put into ICU and intubated on ventilators I thought my post might be helpful to both patients and family.

[Bronze]

ICU Delirium is very common and most people make a good recovery but for some it can lead to PTSD so never be worried about seeking help from GP post discharge. Many ICU's invite patients back about 3 months after discharge to discuss their stay , memories and progress - sometimes seeing the ICU helps to put the feelings into context . Some units keep a "Diary" for you that both family and staff can write in to help you understand the lost weeks however I think with the Covid-19 time many units just did mot have the time or staff to do this . Good luck & nice to hear about your progress .

[mylko]

i experienced similar themes to this during my 6 weeks in a coma on a ventilator / trachea; travelling on an aeroplane in my hospital bed with my american family whom i haven’t seen in 6 years, adopting my baby rabbit from my hospital bed (i must have been semi conscious and able to hear people at this stage because in my dream the vet said i had ‘aspirated’ the rabbits fur when in reality i had aspirated on my own vomit), being moved from ward to ward but they were odd wards (one was an outback shack of one of the doctors and his young family of training doctors, another one was an animal veterinary ward inside the hospital ?!), i kept thinking my sister had managed to sneak onto the ward and dressed in the masks to see me (she’s a nurse so this made it more convincing in my head - i can assure you she did no such thing) to my final hallucination before i woke up properly. i thought the nurse on my 1:1 was attacking me and the doctor wanted to inject me with poison so i kept trying to get out of bed and even tried biting this poor nurse...thankfully she accepted my apologies a few days later when i realised she wasn’t attacking me and it was all just delirium.

i’ve been awake for 5 weeks now, out of hospital for 3 days, and i can now identify what i was seeing was hallucinations / memories from my life.

[Pmub]

I have to say your post did make me smile in recognition, even after 3 years the scenarios sounds so very similar to my own and just as though it all happened only yesterday. I still find that reading posts of people's bizarre experiences while under sedation somehow still help in my own recovery. It's good news to hear you are finally out of hospital, I found recovery and proper grounding came a lot faster at home. I hope they also do for you.

[Sir_vivor]

Thank you for your post. I had the same experience of trying to escape from the fake doctors and nurses who kept me tied to the bed, and I kept telling my family that there was nothing wrong with me and they needed to help me escape. Later, my daughter told me the doctors and nurses tied me to the bed because I kept trying to pull out the tubes, trach, etc.

Also, thank you for letting me know, I will eventually get my strength, and muscle tone back. I have had two bowel resections in the last nine months which has really affected my entire body. I have been so worried about it. And, thank you everyone for letting me know my hair would grow back. It's finally coming back. I'm so thankful.

[Pmub in reply to Sir_vivor]

Thanks for your reply, it still makes me cringe at the thought of pulling tubes out of ourselves. I honestly don't know how the nurses put up with it all, I'm glad you could get some encouragement from my post as to getting back your muscle tone etc... I used to haul chainsaws up trees to take off dead limbs and then suddenly I couldn't even lift the weight of my own hand.

I heard the muscles waste twice as quick when you're being ventilated, thankfully the human body is amazing at self recovery. I'm so glad the hair is growing back as well, these things are really important to us and our peace of mind.

[Marjay]

Thank you for sharing your story, my partner is currently in the royal Brompton, ECMO was stopped on weds due to him making progress, I’ve sent songs, words for the team to read to him daily, pictures, I only hope that helps with the delirium and hallucinations, I live in hope 🙏 all of your journeys are so encouraging and keep me going daily and I thank you for sharing them, such a supportive site for us x

[Pmub in reply to Marjay]

That's so nice that you're sending the nurses things to read to your partner. In my experience I was aware of a lot more more sounds and voices around me than I think is realised.

I can't say enough good things about the royal Brompton and your partner is in very good hands.

As for the delirium it did tended to come and go quite a bit after being taken off the machine. Everything did come back in time though and I'm sure your partner will have a lot of tales to tell when you are both reunited.

I'm sure you know this already but one day at a time is the best way to go when there is a lot of stress and worry. Sometimes even one hour at a time if things get really tough

[NDFan65]

Thank you for sharing! It is interesting to read your story so I can try to understand what my Dad may have experienced. Since he’s been awake and more alert he’s been telling us stories that he is so convinced are real, but we know could not have happened. Nothing scary or bad, mostly about people or situations.

He told us about entering the rehab hospital and they gave him a metal ball to hold to test his strength. He said he was so weak and could not hold it so he fell flat on his back. The PT said my Dad has told this story a few times, but it never happened. My Dad also told my sister that his former secretary was the head nurse in ICU and was very strict. He was so sure that she was there.

He remembers asking to call my Mom who passed away 8 years ago. Later he explained that the nurses kept referring to his current girlfriend as his wife and in his confusion he forgot how long my Mom had been gone. He also says that he flew to the moon on the space shuttle. Fortunately, he didn’t have to pay for it. 😊

My Dad is 6 weeks off the ventilator. It’s actually a relief to hear you say it was about 6 months before you felt you mentally recovered. He’s making slow progress physically, but continues to have good and bad days mentally. This gives me hope that things will get better.

[Pmub in reply to NDFan65]

Thanks for your message, I'm glad your dad has memories which are not so scary. It is such a bizarre state coming off that medication and slowly untangling what's real and what's fabricated in our minds.

I remember being in that in between state (where I guess your father is now)

Sometimes my partner would visit me wearing hospital coats, and take over administering drugs to me which I thought at the time was a bit odd but quite plausible 🙄 One time I decided that I needed to go to McDonald's and I promised the matron in charge I would come straight back!

At this point I couldn't even lift my hand off the bed much less go off wandering round the streets of London looking for a McDonald's.

The physiotherapist's are brilliant, they'll know just how to get your dad's muscles working again and the mind fog should hopefully lift just as quickly. I'm so pleased for you that your dad is off the ventilator, for me at least, that was the really tough part. I wish you both all the best in the coming weeks and hopefully he will be home again soon.

[NDFan65 in reply to Pmub]

Thank you! I appreciate that you shared your experiences. It’s such a frightening time for our family (and so many other families) so it’s good to hear from people who made it through. Please take care.