ste is dilerious seeing things that are not there ringing me at times like midnight 1 2 3 am .He has just phoned asking for pants and blankets he saying hes freezing be as quick as i can then when i say ste its 3am he said IS IT then said theres a kettle on the chair burning everything .Yesterday he asked how much did we pay for the train when we went to bolton on Thursday. Never have we been on a train to bolton .Hes been to scotland tenerife and turkey . All this week .The latest is germany in the army and he is adamant all this is true .The ceiling collapsed in the hospital leaking water in his bed turns out he had accident and just as i write all this at 4 am he has rang me "sue come quick i need the toilet right now " i told him ste im at the b and b you need to ring your buzzer he not got a clue its heartbreaking. Once i calm him down and explain to him he then comes back says sorry and remembers he is in hospital .the nurses say this is normal its all the toxins it can take a while .But for me seeing him like this isnt nice I Wasnt prepared for this 😪😪 he had his transplant on 23rd oct
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Lippy42
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this sounds so scary for you both. My partner is pre TX so no advice but I am sure this topic has been discussed on the UK liver transplant Facebook page if you search there. I think others have gone through this as well so may have some advice to reassure you that this does sometimes happen after transplant. I would be led by his team at the hospital, if they are telling you not to worry then try to just take each day as it comes and remember that this will all be in the past soon x
Straight after transplant with the high doses of medication you can get some weird dreams and hallucinations etc. Mine were pretty sane compared to some I've heard, lol. So this too could be part of the issue.
Hi Lippy, this is pretty normal after transplant though no doubt difficult to witness. It is still early days, he's had one of the biggest ops going and the liver and kidneys won't yet have fully kicked in to play so there are still toxins floating about PLUS he will be on loads of morphine and steroids other drugs at present - he's basically tripping. He's still in the right place and they won't release him till he is ready and safe to be let go.
I found an earlier thread on the forum which has loads of patients recollections of their post op hallucinations so it may help to reassure you that this is normal and will pass in time.
All the best, keep looking after yourself ............. hopefully given time you and he will both be able to look back and laugh at all his daft antics though it is hard at the time. My Dad had open heart surgery in February 2020 with a longer time under anaesthetic than normal (valve replacement and aorta repair). Mum & I visiting him in ICU 24 hours later and he had post-op delirium and kept trying to climb out of bed saying he needed a wee, despite being catheterised, he had no recollection that me and mum had visited and thought we'd left him there and hadn't bothered to visit. He was talking all sorts of mumbo jumbo but it did eventually pass and we laugh about it now.
Oh my darling I'm so sorry to read this latest escalation of things. Please stay as strong as you have been and take it hour by hour. As Katie so wisely says one day you will both look back on this and laugh. You know where to find me if you want to chat. xx
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
thankyou so much for responding it is so hard watching him like this but as you say we will laugh one day ..just wasnt prepared for this. His personality isnt him but he is in there somewhere 🥰
sounds scary did not no that happened to you after op i to am just waiting to see my team at QE hospital for a future transplant l let my wife know this is normal all the best for the future hope his transplant went well
He will get through it, medication will be adjusted to help the toxins leave his body & to reduce the effect .
My Gordon used to think spiders were coming to get him & he made friends with one of the little ones as he was laughing & joking with it.
I just used to tell Gordon he was dreaming & that it wasnt real, but to him some of it was - especually being cold & needing pjs & yes the phone calls in the wee hours also happened.
it's quite normal although scary I manged to control mine I had myself flying over mountains trees and forest it was brilliant but I kept telling myself it's just the meds it will wear off I'm over 5 years now and still good back at work I'm 68 so try not to worry
Hi, after my transplant I had horrendous nightmares and hallucinations all due to the pain killers. My brother was trying to kill me, the nurses had a choir and were going round the hospital singing, I had a family sitting on my bed because one of them needed a transplant and wanted my bed they kept leaving their children for me to look after, one night I fell out of bed because of a nightmare. The nurses will be used to it which is why they're not too worried, let him talk about it it's his reality. Perhaps ask the nurses to turn his phone of at night so you can get some rest.
HE is so scary especially when your not told about it, I learnt the hard way t, toxins in the body reaches the brain, my hubby was in taken into hosp and was sedated for 5 days so know how your feeling, glad yours is already in there, hope the iv start working very soon xx
So stressful for you and, obviously he cannot control his actions at the moment. Hang on in there hey, I am sure as they say "Time is a great healer". Early days for you both but my thoughts are with you all. Stay strong although I know it is not easy for you at this current moment in time. 💕
Hi Lippy42. My partner is just over 12 months post transplant and doing very well. He was very delirious after his op and phoned me with all sorts of strange ideas. It's usually the medication and they'll probably tweak it as necessary. The one thing I will say is, make sure you speak to his doctors and tell them how bad it is. The duty nurses and morning rounds didn't really pick up how bad he was and because they didn't really know him it went unacted upon for a while. I won't go into details but he did end up back in intensive care for a while, due to other complications.
I'm so glad he's had this chance of recovery. It has saved my partners life and that's something to be eternally grateful for.
His HE was quite bad beforehand but he's pretty much back to normal these days, whatever normal is...
Sending love and strength and reassurance this will pass xx
They did that for my partner and it showed no issues. It will settle down once they get his meds right. It is very common to have delirium following liver transplant. Good luck to you both 😘
Hi sorry to hear you are going both going through this. I too had hallucinations post transplant and was told it was due to the pain medication. They changed my morphine over to a synthetic one and the hallucinations disappeared. They were really random though, I thought I had a man sat on the outside ledge of my windowsill, threatening to jump. I'd had enough of him at one point and told him that if he didn't jump soon, I'd come out there and jump with him. I also had a nurse curled up in a fetal position, crying in the corner of the room ( although as it was during covid, so this may not have been a hallucination 😬). The worse one however was every time i closed my eyes it would feel like people were touching me all around the bed, just gently but I could feel them. The nurse explained this as a memory from my time on ICU post transplant, as I didn't tolerate it very well, they were continuously having to rearrange the tubes and lines etc. Hence the feelings I was getting. I hope it all doesn't last too much longer for you both.
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