Hi I was in a coma 19 months ago with double pneumonia, suffered horrendous dreams and hallucinations and physically I'm not the same person now, am very weak and fatigued. I have decided I want to revisit the icu to try and gain some closure,I have a date booked in a couple of weeks where I'll also be able to speak to a consultant and icu psychologist. Am wondering if anybody here has revisited and did it help you? Thanks
Revisiting the icu: Hi I was in a coma 19 months... - ICUsteps
Revisiting the icu
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Raising8
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I know loads of people struggle with ICU & I don’t want to be contentious or belittle anyone else’s experience BUT… ICU was ok for me 57 day coma 33 days conscious in ICU. Don’t get me wrong - there was lots that was horrendous, immobility, delirium, suctioning of lungs, no shower, NHS razors, hair falling out, bad reaction to drugs, withdrawing off meds, boredom - piecing together that I’d almost died numerous times & that I had cancer, bone marrow biopsies, lumbar punctures, constant blood taking, drains, catheters, trachy, coming to terms with the impact critical illness had had on my family…..loads of shit BUT, still I felt safe there…now the wards were a different story - they were like the Wild West.
When I discharged from hospital, I went home via ICU - to say good bye to the people who’d saved my life & at the time I’d bonded with some of them on such a deep & bizarre level. 8yrs on when I see any of them, it’s still the same. That’s just my experience….me visiting ICU confirmed that it was still a safe and tranquil space.
Thankyou. At the time due to the delirium I was convinced they were all trying to kill me but I am grateful that everything they did was to save my life
lol, I thought they were trying to kill me too at times. During the night a nurse would take blood and I thought she was injecting poison but I couldn't move. Was in icu for two months, mostly in a coma and then in a general ward for a month then in a rehab hospital for another month. (Heart failure, general organ failure, sepsis, pneumonia) ICU Delirium is terrifying when it is happening but I had a good psychologist at the time. I told the ICU nurses that the next time I saw them I would be walking. About a year later I showed up walking with a cane and there was a completely different staff and nobody knew me. The nurses at the ICU desk wouldn't even allow me in. It was really depressing. I had tried so hard to walk to impress them. A central London teaching hospital. Its good you made advance arrangements.
During the day the ward was run by Pygmy South American nurses carrying Kalashnikovs, at night, ISIS imposter nurses were murdering all the other patients & staff that wouldn’t convert. Meanwhile, the hospital I was in was a Hebrew Hospital just outside of Caernarfon- floating on the sea.
when like @garycom - I returned to ICU, (I’d left in a wheelchair) I was determined to walk. My wife wheeled me in as before. I washed my hands and then dodderingly walk the entire length of ICU, unlike @garycom’s experience - they all knew me - some even wept - no-one had ever seen someone survive from where I had come from. I was described as the miracle - now I know many of us share that dubious title - I’d recommend anyone to revisit ICU but I would arrange it and go with a loved one. 💙
Some of my hallucinations were horrendous but very real to me including thinking I was pregnant by 3 doctors there then they told me the babies were spring onions and not viable! My sister said when I came round I was very distressed and kept saying I don't want to go back in the swimming pool,there was plenty more. Well done on your recovery
That's the first time I've heard anyone say that! That's just how I felt about ICU ....I was safe and relatively comfortable despite lots that went on that I wasn't aware of. The ward, as you say, a different matter ...and still gives me nightmares 14 months on....
Def do it!! The psychologist was a huge help
Thanks I think it will help too
I went back 6 months after I was discharged. I couldn’t remember it at all - well nothing that I knew for certain as was very confused at that point!!
I found it really helpful to see the environment and some of it was like I had seen in my delirious state so that helped piece bits together for me. I got to see some of the nurses who looked after me and their faces in some cases were again recognisable from my confused state!
I went with my husband and he probably found it even more helpful than I did. He has PTSD from the experience (I came out unscathed from that perspective). He found it helpful to be in there with a happy and healthy me, managing to have a laugh about things from then and being able to see my progress.
Hope it goes well for you too 😊
Hi Raising8
I completely concur with Sepsur, I to had a lot going including death, yes the delirium is horrendous, I was in an Indian mud hut Hospital people all speaking Hindi I could smell the food and the heat of the sun on the building and also in the mountains of Himalayas, an American roadside garage with someone armed with a chainsaw ready to chop me up, escaped from there, then in the ICU with nurses coming up and whispering in my ear what they had in store for me Etc.
But as Sepsur says I strangely felt safe, on reflection and even more weird i some times wouldn’t mind being back there because of that feeling of being safe. 🤷♂️ I feel lost now
But I had two visits while with my psychiatrist and I returned for my first year anniversary in Jan this year, but they were very busy and I couldn’t get to see anyone. Did going back in help? ummm not really only from the point that things were not as I had imagined them to be, my bed area / computers and desks were never there and a lot more beds than I thought and definitely no coffee shop next to my bay where I thought I could hear people ordering coffee and pastries etc and making a lot of noise. lol
I hope you can put you’re demons to bed ,pardon the pun, and do what you need to do
Good luck
hi, I did go back and visit, saw bed I was in , spoke to professionals . It did help in one way to get some questions answered but in another way didn’t as I remembered the icu totally differently to the way it was set out, due to my hallucinations so didn’t recognise any of it. Consultant was shocked that I had not heard of icu delirium and it wasn’t discussed with myself (that I can remember) or my family.
Personally I do think it is worth a visit and hopefully at least some part of your stay will start to make sense . I also obtained all my hospital records of my stay and although I didn’t understand a lot of it, some of that helped too.
Good luck and I really hope it helps you
Thanks,a couple of people think I'm mad going back in but unless you've experienced it they'll never fully understand
Who are these people? Have they experienced what you have ? If not then they have no idea if will help or not, you’ve seen what we are all saying we e been there. 🤷♂️
I agree, I wanted to just to try and make sense of everything. I personally don’t think it can do any harm and as you say, someone who hasn’t gone through it could never understand
No one can really understand, but that's ok. We have to do what we need to in order to heal and/or make the most of where we are now. I went back to see the nurses in the ICU twice - once a couple of months after release, and a couple of weeks ago (2 year anniversary of getting out). They had been very supported of my wife as well, so it meant a lot to her too.
Thankyou,the only thing is the icu where I was has now moved to a new building next door so it won't be completely the same but I'm still going to do it
hi, i was in a coma in the icu due to meningitis last month, i was told by my doctors i would be able to look through my records and a diary they made whilst i was there but i haven’t heard from them since being discharged. how did you go about getting your hospital records? thank you
Hi they should of given you the diary when you were discharged. I'd give them a call
Hi, I too am going on Monday. I was only in ICU for 3 days with no ventilation or sedation (severe asthma attack) but it was definitely my most scary asthma attack....never ended up in ICU before. Like some of the others have said, funnily enough, ICU is where I felt safest, despite everything going on, and the ward was much more 'aaaggghhhh '. However my brain can't stop replaying everything so I've an appointment to go back, just to help me process stuff a bit more. I really hope your visit helps!!
Dx
For me, visiting the ICU was a healing experience. I visited at three months, six months and three years. On my first visit it was emotional to meet and to hug some of the nurses who had been involved in my care, particularly the nurse who had watched over me during the first critical 48 hours. It was painful in that I could barely remember them. The ward was completely different from how it appeared to me in my delusional state. The corner where I had been bedbound was empty on my first visit and it was poignant and touching to see that vacant space with the sunny window which played into my many dreams and delusions.
I hope you find your visit as cathartic as I found mine.
Best wishes.
Thankyou. I didn't realise you could go back more than once if needed
Absolutely you can just liaise with you’re rehabilitation team or ICU contact when you want to go. 👍
The ICU department had very helpful outreach nurses. I recalled after posting that I had an official follow-up at 12 months, the other visits were my own initiative, arranged in collaboration with the nurses.
I think I would have quite liked to have gone back to see ICU. It was two years ago for me. Whilst I can't remember anything of my time in ICU (except the delirium), I do find it hard to forget about it. A bit PTSD like.
For those that do go back I hope it helps them make sense of things 😀
Inspired by this thread and also the madonbrew thread
healthunlocked.com/icusteps...
thread, I have popped off an email to the ICU outreach team that I had involvement with a couple of years ago. 😀
They got back to me the very next day and we arranged a visit very shortly after.
I'm pleased I did go back. It helped me fill a fair few gaps in my knowledge. Despite the length of time since I was in there, the staff were great and very sensitive to how I felt especially when they took me to the beds that I had stayed in and all of a sudden you could hear the beeping of the machines (you never forget that noise, it cut straights to your core!).
They also explained some of the treatments I had undergone as we went through the timeline of events and cross referenced them to the delirium dreams that I had. Quite emotional at times.
I was in ICU for most of 3 months. I was in ICU through Christmas, so I would return each Christmas with a small Christmas gift to thank them for their hard work until COVID. Some workers remembered me and/or my husband, but not everyone. I had long elaborate dreams while I was in the coma. I've had long discussions with my husband to determine what was real and what was a dream. These conversations have helped me to cope with my time in the ICU. Since all my muscles atrophied, I was in rehab for another 3 months learning how to walk, eat, move again. All I wanted to do was return home.
I hope all goes well with your visit.
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