Psychotic Episodes

[Shep666]

Just had a very successful liver transplant 8 weeks ago and am in the very lucky position to feeling better than I have in years. Now everything has settled into a nice routine I just wanted to raise awareness to post op psychotic episodes. I was warned that it is common for post-transplant patients to have waking hallucinations and vivid dreams. The transplant op went very well, but silly me “kept forgetting to breathe” when I went to sleep after they woke me – resulting in being “put back under” 3 times (endotracheal tube reinserted etc). Downside more drugs etc.

Once back on the ward a combination of the operation, total lack of sleep, severe constipation and heavy residual drug load resulted in quite a sever psychotic episode and a huge dose of paranoia. I became increasingly unable to discern real events from “brain made up” events. The brain is a clever bit of kit and it was able to take in physical surroundings, events that had happened and imagination and meld them into a very credible narrative (well to me anyway).

Some examples -

The army medical services came on ward to help. I lived through a gun hostage situation that night whilst awake. Looking back, the uniforms created a suggestive scenario.

Many times’ I was talking to a visitor that wasn’t there, had been there, was there or was due to be there. All versions very very real and impossible to tell apart.

Hyper active brain, never stopping – I created a mini series for TV in conjunction with my good friend Billy Connelly (who I have never met) – wrote the script and even the music.

The QE in Birmingham had a detachable back bit (the ward I was in) converted to a boat at night, my bed/ward become a cabin.

Meeting and talking to dead relatives/friends and transporting to locations outside of the hospital and thinking that was normal and ok.

Calling my partner at all times of the day and night with more and more outlandish stories.

The real downside was my increasing paranoia, I became convinced the police had me under surveillance and I was about to be arrested. I could hear them talking about me behind curtains and doors. This made me distrustful (not a good state of mind when you rely totally on others to help you), introverted, uncommunicative and not very nice.

My observations are

The ward staff were great but were more tuned to physical caring and less “switched on” to mental madness.

Staff I had interacted with pre transplant (physios, exalt trial people, coordinators, consultants etc) saw straight away the changes and along with partner and effected change as soon as they became aware.

It is scary for partners/family to watch the car crash unfold. It is vital the signs are picked up early and brought to the medical staff’s attention – and unfortunately those close to you are best placed to detect the early small signs.

Please don’t worry too much from my “horror experience” but it helps to be aware (especially for your partners) of the possibility of the extreme ends of the way your mind tries to deal with the drugs and trauma.

[Richard-Allen]

I’m glad to hear you've survived the liver journey Shep. It's certainly a long road that some of us have been on.

You touched on an interesting point, about the emotional aspect soon after having a transplant This is a sort of "Horses for Courses” type thing as some people (like myself) go on to suffer terribly with “Survivor’s Guilt”. Sad and emotional, tearful moments. Mine lasted over 10 months, while others seem to have no mental side effects at all.

I have often used to share this story told by a nice lady named Deb’s. She lives local to me and I used to share her experience on a website I once had. (She has given me permission to share this).

Deb’s had her liver transplant back in August 2014 due to multiple medical complications, including Wilson's disease. All Debbie wanted to do is just put this episode of her life behind her, get back to work and move on.

“I broke down in April 2015 I went to my GP and he referred me for counselling which I had until July 2015. I still have days where I get low and anxious. The counsellor said I had a lot of signs of PTSD and also Survivors Guilt. Keeping myself busy is my way of pushing my negative thoughts back”.

So, some people experience no changes in their emotional state, while Others do and in Deb’s case, this can happen even 8-months after her transplant.

I have always found that if people can understand what is going on, we can sort of get closure and a sort of acceptance as to why things happen the way they do.

I have often used this video here to help illustrate the point. This video called, “The Inflamed Mind” by Professor Ed Bull, and here he explains things much better than I can: youtu.be/iw7b0-yTnT0(Not working as expected?)

Having a liver transplant is a major assault upon the body. Even though the immune system has been turned down, it is still working all the same. That very first cut of the surgeon's scalpel will cause an inflammatory response by the immune system. Imagine all the damage done to all the plumbing bits, even just holding the bowels out of the way so the surgeon can work, can cause them to go into shock and close down.

As the immune system goes to work, millions of macrophage cells and cytokines proteins are realised. The cytokines go off in search of any invading germs or bacteria. It has now been discovered that these cytokines can cross over the blood-brain barrier and alter a person's mood and bring about a feeling of depression and also guilt.

It can take the body many months to fully recover from the Liver Transplant. And some people may endure other complications along the way. Even though it has been dampened down, the immune system is still busy working away.

Back in October 2016 I had my liver transplant and suffered terribly for 10 months with survivor's guilt. But once I understood that these feelings and emotions were being caused by my own immune system, it gave me some form of acceptance, as these feelings were in effect being chemically driven, and not of my own making. This gave me closure, and the survivor's guilt was lifted.

I hope this is of some help to others.

Good Luck,

Richard

[Yellowsydney]

Congratulations on your transplant. That all sounds perfectly normal, 6 years post even now I find it hard to differentiate between what actually happened immediately post transplant and what happened in my mind. Mine was all down to a horrible drug called oxycontin, was given it again last year unknowingly and I accused a doctor of trying to murder me in the middle of the night as he was trying to treat me for pneumonia.If you use Facebook please feel free to join our friendly and knowledgeable and private Facebook group called liver transplant support uk, thousands of people that have been in your situation, you should hear some of the stories of post op psychosis.

Hilary 💚

[Pie-eater]

Haha, brilliant, very similar to my own experience.