Intensive care

Hi LellyNelly,

I am really sorry to read that you are going through PTSD from your time in intensive care. Thankfully I didn’t need to go to intensive care, but I have suffered from PTSD following long hospital stays. What are you struggling with at the moment? If there’s anything I can do to help from a more general PTSD perspective, I would very gladly help.

Greg

Hi there. For part of my time in ICU I was in a coma but after I started to regain consciousness and they took my ventilator out I was still there for around another week (I’m not sure exactly), and was in hospital fo almost another 3 weeks. I went to ICU because I had Cytokine release syndrome after CAR-T treatment, including neurotoxicity, seizures, pneumonia, influenza A and kidney damage. I am having some quite traumatic memories. I remember the nurse trying to shove something in my mouth and I was fighting her off and trying to keep my mouth shut, i remember being told off several times by a nurse for uncovering my legs because I was hot and she kept covering them up again. I remember being in a large victorian room and during the night when it was quiet I saw a nurse giving a patient across the way a hand massage and I couldn’t speak to say I wanted one. I remember looking at my machine and seeing my bp at 179 and the doctor asking if I’d had high blood pressure before. I remember seeing nurses going in and out of an outside door and coming in smelling of smoke. I remember being told several times by a nurse that I couldn’t possibly have soiled the bed because I had a ‘poo poo bag’ and as a result getting incredibly sore and excruciatingly painful broken skin due to lying in faeces. I know some of these memories weren’t true, for example nurses going outside for a fag, because I was on the 5th floor, and also I know the ward isn’t Victorian, it’s a modern high rise. I know some things were true because my husband has confirmed them, like the skin on my backside being incredibly sore. And my bp being high. He wasn’t there all the time though. I feel like I need to know exactly what happened and in what timeframe and which bits happened before or after other bits. I need to get it straight in my head before I can move on. I don’t know whether this is due to my autism. Certain sounds remind me of being there too. This all happened in Dec. I had a CAR-T infusion on 26th November and I remember very little after that. I know I was in a coma and went to ICU around Dec 4th. Because I was told. I know my family came down to London to say goodbye on Dec 12th because I was told. I went back to the main ward on Dec 23rd and was discharged on Jan 10th. 

You poor soul, some of those images/memories, even if not true, are really traumatic and as such they will be hard to deal with or rationalise. I guess the only way to process this is to 'parcel it all up', not to block it out but to recognise that some may be legitimate while others may be fragments of memory that your mind has played tricks with in trying to rationalise. This will be a time to get some professional help and soon, to deal with all this, too. It's got to be a severe type of PTSD.

Sending you a big hug xxx

Hi LellyNelly,

Your experience sounds truly horrific, it must have been truly horrendous and my heart goes out to you at what must be a difficult time. It is absolutely no wonder that you are suffering, so go easy on yourself, that experience is going to take a while to rationalise. I agree with Moomy, some sort of professional help is definitely the way forward, they will be able to assist in helping to breakdown any negative thoughts you’re having and helping you to work through a way to move forward with them.

I didn’t have to go into ICU, but I had a fairly traumatic experience post my allo SCT. Around Day 50, I had a sudden onset of acute GvHD which necessitated going back into hospital for another 47 nights. The bit that I think made me suffer mentally was that I was completely aware of my surroundings, and strangely physically fit, yet I wasn’t able to eat and was having regular diarrhoea. It was a long slow road to recovery, and I was left with negative eating habits for quite a while and a genuine fear of going to the toilet, which took me a couple of years to get over. I had panic attacks for a period of time at the thought of going to my check-ups because I couldn’t deal with visually seeing the hospital. I can only equate the experience as the slow destruction of the self, such that there was a period of time that I didn’t feel like a human being. I had some very dark thoughts during that time and so became very scared when I begun to process what had happened to me. I also remember having up to 5 or 6 nightmares most evenings for a good length of time. 
Whilst my experience was in no way as intense as yours, I thought I would jot down a few thoughts that helped me when I was suffering the most, and I really hope these in some ways might help you as well:

- a recognition that the past will not repeat itself - the experience you have had cannot and will not repeat itself

- the memories / nightmares are your brain trying to process what has happened to you and to try to make sense of it. It is a natural process which might take some time to sort itself out, but they can’t and won’t last forever - at some point they will subside or become less intense

- if certain senses remind you of being there, then try to expose yourself to them more (in a safe way). This might sound counter-intuitive, but I found that the more times I experienced a sense (whether it be sight, smell, taste, touch, sound), and it was attached to something positive or at least not horrific, then I found the next time I experienced the sense, then the memory was less intense as the negative memory was drowned out by more positive, or benign ones. This worked for me with the sight of the hospital - the more times I forced myself back and had a positive or neutral experience, it lessened the impact of the negative experience.

- desensitise your present existence - be kind to yourself, go easy on yourself, try to limit your day to day stresses - your brain is processing a huge event, it needs to be as empty as possible in the present - distraction is good to get your brain to focus on a task in hand - a jigsaw, a hobby, it doesn’t matter really, just something simple and active that the brain can focus on.

- try to write down your experiences and see what comes out on the page. I decided to write a book, it started out as a work of fiction about a young man who believed he was swapping places with Hitler in his dreams. The more I wrote the book, the more it helped me to process the difficult emotions. I look back on the book 4 years down the line and I can see how it was not a work of fiction at all - it was all about feelings of yearning for the past, not trusting your mind, impending doom. All things I was struggling with at the time.

I really hope these help in some small way LellyNelly. I haven’t had your awful, traumatic experience, but I have had the experience of a very out of control mind, so I hope you see something in this that you might be able to take this forward for yourself.

Please keep in touch.

Greg

Hi Lellynelly, having had several family members in ICU and visiting daily for months with one I fully understand what you are posting knowing what that family member said when they finally came out of their coma. The drugs do cause all sorts of thoughts and it takes a while for the body to rid itself of them very much like chemo, so do seek help and you may want to contact ICU and see if you can go back and talk to them as one of our family members did that and it helped, they explained what happened and what they did to help her survive and then recover and what the drugs are and what they can do.

Hope you find a way forward that works for you

ps the fighting pushing something in to your mouth could be one of 2 things - a toothbrush as they would clean your teeth several times a day and the little sponge lolly pops they use to give moisture to your mouth, but also they use them to clean the gunk out to especially on the roof of the mouth. When we did that as part of the care it was always a battle. 

Hi Lellynelly, you have received some great support from all my virtual friends.

I was holding back on posting as I wanted others to share from their shared experiences first.

During my second Allo Stem Cell Transplant I was also rushed to ICU on two occasions and can totally understand most of what you are sharing but I have to say I must have got off lightly.

Yes, some very crazy dreams or were they dreams!! Friends standing by my bedside during the night who at the time where 100s miles away. Seeing some bizarre things going on around me....... It was like one of those dreams where you are drowning and you wake up suddenly glad that it was just a dream.

I have no real recollection as to what actually went on around me. My wife, bless her was staying in the hospital for the 4-5 weeks so she witnessed the daily routine and she said that nothing out of the ordinary did actually happen.

So we have chosen to put everything I remember or think I remember on a very high shelf and move on with this new life I have been gifted.

This was over 4 1/2 years back now and I have to say the memories of this time don’t show their face that much. The one challenge that showed its head a few years back was survivor guilt as we have had a few friends pass away with cancer and I was still around doing very well. So a few visits to see the psychologist at out local Maggie’s Centre helped unpack that from my rucksack of ‘stuff’ that I carry around.

At the SCT unit I was treated in, as part of the package we were assigned a dedicated family psychologist who worked with us before, during and for a year after my two SCTs.

I think that her input during the process was the main reason that we came through the journey in one piece, with little or no baggage to deal with.

My friends have given you some good suggestions and do push some doors so the you can start to file some of these memories in a less accessible place.

We are always around to listen. 

Sorry to hear you're going through this. I was in ICU on a ventilator for five weeks in Jan/Feb with PCP pneumonia, parainfluenza and what we now think was Covid. 

I was in a medically induced coma for three weeks and coming round I had ICU induced psychosis which the consultants explained to me afterwards occurs in 75% of ICU patients. I had very real and frightening hallucinations- I thought the nurses were trying to poison me, I dreamt up extra children I had, I ran over a baby in my car, I stole a baby, I had to go on witness protection, my room was full of koalas... There was loads more,  it sounds crazy but it was all so real at the time and I can still remember it all as though it actually happened. I also had very weird premonitions about there being a flu pandemic and it has been slightly unnerving watch the coronavirus situation unfold since. 

Mentally I do actually feel ok though but I do have awful dreams and problems sleeping - this seems to be when it all comes to the fore. When i left hospital they told me I'd be invited back in a couple of months to see a specialist nurse who would talk through my experiences with me and go through the diary that the nurses and my visitors kept for me while I was unconscious. Unsurprisingly this hasn't happened but I was also given the details for an ICU outreach nurse to contact if I did start to feel traumatised. So this is obviously something they anticipate and I do wonder if at some point further down the line when life is a bit more normal and I start to process the experience then I might face some problems. 

I had absolutely no idea what it was like to be an ICU patient, I've spent many months of my life in hospital this past four years but ICU is a completely different thing. I hope you can get some help and very happy to talk more if you'd like.  X

hello everyone, hope everyone is better than yesterday even if not 100%.

I thought your recall of ICU is interesting. Although I wasn't in ICU I had hallucinations about 3 days after my BMT. I had ulcers in my mouth and throat and they wanted to look at my lungs and when the doctor and nurses tried to get a camera to look at how far the ulcers had gone I had a vision of my husband coming into the room with a silver case in which kept our camera's and portable printer. I remember speaking to him asking if he had come with to stay and he said no I have brought John with me (my step son's partner ) so I thought I was dying. I heard the doctor call for the crash team (which probably wasn't right as we were in France but he was speaking in English). I can't remember anything else but woke up later in the afternoon everyone had gone but I did have a catheter in. My husband said he never came in the room although the red light did go on and he said it was busy. He never brought anyone with him and didn't speak to me that day. The doctor told him it was normal. That night I dreamt I was tied to the front of a train.  Strange times indeed. 

Stay safe.