I am new to the group and see how supportive it is. I think this is especially important at a time when many NHS hospitals, like mine in North London, are unable to provide a face to face cardiac rehabilitation service because their rooms have been repurposed.
I was diagnosed with heart failure earlier in the year and underwent open heart surgery just over 3 months ago. I had a tissue aortic valve replacement, radio frequency ablation and left atrial appendage exclusion. Unfortunately I developed post operative delirium and spent 6 days in ITU as a consequence. Before I was transferred to the ward I was told that this is common in this type of surgery but I can’t say I had ever heard of it! It was a horrible experience and I still remember many details. Has anyone else suffered this?
Thanks, Norma
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After my OHS I had two nights in intensive care unit (ICU) which was much of a blur of weird dreams and hallucinations, then one night in high dependency unit (HDU) which was horrid, bad dreams and an overwhelming feeling of being too hot. Then one night in my own room, but the next day I was back in ICU. Horrid dreams again, but I felt it was the anaesthetic rather than much else. What weird dreams.
The main thing is that I recovered well and, after three and a half months I felt very well indeed.
I got no rehab and I think this is a shame.
I did huff n puff every day and I still do . Then I walked. What is required is a gentle walk, chatting whilst we walk, every day. Perhaps half an hour. This is crucial.
Thank you Colin for your response. It’s really helpful knowing you’re not alone.
Hi Norma,
I was unfortunate to have many complications in my second OHS. I was in ICU and HDU for 3 weeks, during which I had bad dreams, hallucinations, I used to shout and sort of sing out loud, thinking I was in a coma and I could wake myself up.
It didn't help that I was hooked up to a crash machine throughout, had an infection, and had a temporary pacemaker attached to my neck. I didn't think anything was real until a nurse, hitched me up in a wheelchair one day and took me for a tour of the hospital to prove it was real. They told me afterwards I was suffering some out delirium, and at one point thought I had brain damage.
I had surgery again 4 months later, which went better, but, the hospital staff made a point to make sure I was in a different ICU ward to avoid bad memories.
It was a horrible experience, which I rarely talk about.
Thank you for your reply Heed. Your experience sounds horrific. I wonder if more people should talk about such experiences or would it just scare others?
Thanks Norma, I must admit I'm very careful about what I write on here, for the reason of not putting doubts into people minds. I've had many positives, namely my 1st and 3rd ops which I'm happy enough to share, but I tend to skirt around the 2nd as if it didn't happen. I should talk about it more, but, I'm not sure that this is the place.
I had a cabg about 3 years ago because I had a hign calcium score. I had felt no effects from that condition ! After three days my wife (who had been staying near the hospital) was asked "Is he always like this ?? " When I asked her what they meant she said ... uncooperative .... stroppy ...... unhelpful .... I didnt remember a thing and now don't loose a moments sleep over it. Now I feel fine but have no idea whether my calcium score is high or low.
Thank you so much for your reply. I’m glad you don’t remember anything about your uncharacteristic behaviour! I guess if you are worried about your calcium level you should ask for it to be checked but maybe it’s not bothering you if you are currently well.
Yes, ICU delirium is relatively common. I had an aortic dissection with 6 weeks in ICU afterwards, 4 of those in an induced coma. I had a whole load of hallucinations which I can still remember today, 4 years later. Delirium is hallucinations, which you do remember, as you've found out, not dreams, which one forgets.
The hospital staff will be used to it, especially as one unfortunate side effect is that you can ne convinced they are trying to do you harm (I had this, or at least I was not convinced their actually excellent care was that). Relatives will be understandably upset, but it is a result of drugs and so forth.
The organisation ICU Steps (icusteps.org) has a booklet a little way down their home page.
I've always loved re-reading another's experiences - see kotaku.com/the-dreams-of-a-... It's weird, Japan came up a lot in my hallucinations, too!
Thank you so much for replying. Your experience sounds horrific and your resilience sounds remarkable.
I thought I was in a completely different reality during my delirium, inspired by what I now realise was a very rogue (and non-existent) edition of the Guardian! I was certainly paranoid through the episode and started refusing medication, scary for relatives until the consultant decided to knock me out. I probably won’t forget the experience but am just glad it was short-lived.
It was comforting reading your survival and for sharing.
My father had a tissue aortic valve replacement at St Bart’s - 17th Feb currently has post op delirium. I’m petrified he’s so angry, out of character, thinks we are all trying to harm him. I live 2.5 hours away from London but have been going every other day to visit and speak to him numerous times on the phone a day. I’m so scared he’s not going to get passed this and he said to me today he’s scared.
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