Post transplant delerium

[Dawnejoy]

Hi I’m new to posting tho have been reading a while. I’m 3 months post transplant, had an infection and post surgery issues with bile but I was put on bile salts for a few weeks which sorted that issue but caused kidney issues, all resolved now tho and have just moved to monthly check ups which is great. My problem now is dealing with the issues caused by horrendous delerium which caused me to be aggressive and verbally bile to those closest to me as I totally and utterly believed I had been abandoned in India along with others that had me believing that all wanted me dead to steal my liver. There were many more all along same theme. Although I know these are false memories, they are memories with real emotions attached to them and I’m really struggling with that. Anyone else had similar issues? Be nice to know I’m not alone with this. Spent 8 days in ICU and was under sedation etc for 5 as they tried to wake me up then would put me under again due to aggression and I wonder if that’s why I’m strugglinh. Just a thought.

[carmik]

Dont worry my hubby did exactly he same.

Wrecked the ward.told me he wasnt who i thought he was.had been flown in from buenos aries the night before. Refused treatment.wouldnt allow the ward

sister near him.

Sent psych to see him.

Decided in the end he was allergic to morphine.

Now has to wear red band so yhey dont give him it anymore.

Dont worry he insulted me something terrible but it wasnt him

Thar ws 6 years ago.he still sane

Dont worry about it just ge better.good luck.

[carmik in reply to carmik]

Sorry predictive keeps citting in

[LAJ123]

Hi,

Thats a long time to be in the intensive care department.

I only had 36 hours and I found it terribly disorientating. My medication had to be changed because of the amazing / dreadful hallucinations.

The only suggestion that I have is for you to contact your transplant coordinator and as you are only three months post transplant, you shouldn't be too far from your next scheduled clinic appointment.

In the meantime, you might find the following interesting.

bbc.co.uk/news/av/health-15...

Take care and let us know how you get on.

Jim

[LAJ123]

This group was mentioned in the interview with David Arronovich.

icusteps.org/

[jojokarak]

Hi I was in a coma 4 years ago after throwing blood up. I was in it for 3 weeks and the dreams I had stayed with me for a very long time, even now I can remember them like they actually happened but I know they are not real. It is quite early for you but I can promise you over time they will fade .. don't feel guilty your family know you wasn't well and it we wasn't you who was responsible x

[LAJ123]

This is from the icusteps website . There is a guide from the site for people in or affected by a period in ICU.

"You may also have felt some paranoia as you tried to make sense of things when you were confused"

"In a few cases, patients (and their relatives) can have extreme symptoms of stress after their treatment in the ICU. This is known as post-traumatic stress disorder (PTSD), and is rare. Most people who have suffered from PTSD found that talking to a professional counsellor about their stay in hospital helps. You can ask your GP to refer you for counselling. "

[Hope-feb3-2017 in reply to LAJ123]

Hi LAj123, yes you are so correct! I experienced (PTSD) and speaking with a professional has helped and I'm still working on it. I am 1 year post and really working at feeling better. I was diagnosed and going down hill fast - had my transplant in 3 months. Seeking help and talking is the best. Take care.

[Hope-feb3-2017]

Hi, I agree 100% with what everyone before me has posted. I too spent several weeks in ICU and in a coma. The dreams, paranoia and thoughts were so wild and disturbing, I thought were true and real. Approx the same time frame 2-3 months post transplant I started to rethink all of these thoughts again. I was worried if this/I was normal. AND YES this is all NORMAL!

I encourage you to reach out to your transplant coordinator as well who can refer you to speak to a professional (within the transplant team) with post transplant experience in this matter. I did and she really helped me -all she had to say was you are normal. And we worked through it. Your memories will be with you and I totally agree with jojokarak over time they will fade. I just passed my 1 year mark post transplant and things are getting better.

Trust me your family knows that was not really you. They love and support you and are by your side. Take care and continue to talk and talk work it through. All the best.

[Dawnejoy]

Thank you all so much for your replies, it’s so nice to know that I’m normal. I thought I’d dealt with this whilst in hospital as I saw a psychiatric nurse a couple of times and thought I’d talked it all through and was ok about it all. Since coming home my anxiety levels have increased, never used to be anxious, sleep is really poor and I’m very tearful these last couple of weeks. I’m married to a psychiatric nurse and have found talking about them although I know they are false does help. I’ll get there and work through it all, I just needed to know I’m not the only ones. Everyone is right when they say my family knew it wasn’t me but I think they were hurt at the time as it was so unexpected. Morphine does not agree with me either it seems 😊

This whole experience has been an eye opener to say the least and none of us was prepared for what happened.