Jackie experienced her first bout of hepatic encephalopathy after an endoscopy. As her liver disease advanced the HE worsened and she would forget that her parents had died and leave her home and wander without a clue as to where she was going. Thank you for sharing your story, Jackie
In 2017 following a routine blood test I was diagnosed with possible fatty liver disease, further tests showed I had very low platelets and an enlarged spleen. After a biopsy in 2020 I was also diagnosed with autoimmune hepatitis and prescribed prednisolone.
For the next few years my blood tests, endoscopies and scans were stable and I felt good, exercised a lot and was only going to clinic every six to eight months. I would occasionally get an infection and go into hospital, but I’d always come out feeling very well. I was assessed for a transplant during one of these infections in 2020, but my doctors decided it wasn’t needed yet.
By March 2024 I tired more easily and walking distances and going upstairs became a problem. Fluid started appearing around my lungs which meant having a chest X-ray and my medication being changed until it cleared. I also started getting occasional bouts of encephalopathy. My first experience on encephalopathy was following an endoscopy. I came home, went to bed and when I woke up I didn’t know who anybody was. It’s such a weird and frightening thing and we didn’t know what was happening at first.
Encephalopathy worsens
I gradually started to recognise when the episodes were coming – they only lasted five or ten minutes and then I was back and would remember every single detail, but I wondered why I couldn’t do anything about it or stop it. By autumn 2024 I was still working and doing all the things I normally did, but was a lot more tired and the encephalopathy was getting worse. I would contact family members and say: “I can’t get hold of mum or dad, you need to take me there” when my parents had died 20 years ago. And every time after the encephalopathy had passed, I would go through the whole mourning process again.
I also started wandering without a clue where I was going. One night it was tipping down with rain and I put my coat on, left the house and walked in my slippers for about five minutes. Eventually I got back to our close, soaking wet, but didn’t know which house I lived in, so I stood around for a bit until I finally remembered. From then on my family locked the doors and hid the keys. They also fitted a camera in the kitchen, got me a watch with GPS tracking and a pin from a dementia charity that is programmed with my husbands phone number in case I ever got lost. It felt intrusive, but it kept me safe. If anyone starts experiencing encephalopathy, I would advise them to tell their team, otherwise it will just get worse and be more frightening. I took a supplement Lola suggested by my team. I think it did help a bit.
Because of the encephalopathy I didn’t remember what my doctors were saying so my husband had to be responsible for everything. When my consultant saw my hands were shaking he said I couldn’t drive anymore and two weeks later I was admitted for a liver transplant assessment. I was listed in November 2024 and was so relieved because my illness was affecting everybody’s lives, not just mine.
The donor liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me.
I worked right up till the transplant and my boss Mark, was brilliant, but as things progressed, I started working from home for my own safety. When I went to clinic in March 24, I didn’t know who anyone was, so my doctors put on the priority transplant list. I had my first call a couple of weeks later, but the liver wasn’t suitable. A second call came a couple more weeks after that at 4.20am on April 27th.
I was asked to be at the hospital for 6.30am and was taken into theatre at 3pm – the liver hadn’t arrived yet but they said they would open me up and be ready. I was introduced to everyone in the theatre and felt like they would take good care of me. The transplant took seven-and-a-half hours and when I woke up the next day in ICU I remember my husband giving me ice cubes as I had a terrible thirst. The day after I had to get out of bed – which I absolutely didn’t want to do, and had to sit on the end of the bed, stamp my feet, stand up, sit down… The following day I refused and they left me alone.
The second day I woke up without the wooziness from the anaesthetics I knew my head was better because I knew what was going on and who everyone was. Now I just had to get better physically, but I was surprised at how weak my muscles felt and it was almost like I had to retrain my body to do everything. Walking any distance or going upstairs was hard but I was determined. After I was moved to the high dependency unit I would get up every day and walk with the physios, my son or husband – whoever was there – and was discharged after nine days. I went back to Addenbrooks the following week for a check-up and that went well, then again the following week for another check-up and they left me for two weeks. It’s got a bit longer each time and as of October 2025 I haven’t been to clinic for two months now.
Life-changing operation
The operation has completely changed my life and I’ve got my strength, energy and brain back. Before the transplant my speech had slowed because I was trying to think what the words were and trying to form them, but since the operation I’ve been talking ten to the dozen.
When I was first diagnosed in 2017, I was terrified and didn’t know what it was. Then I found the British Liver Trust – the patient information is really informative and I now follow them online because I’m really interested in medical breakthroughs and new medications.
Because of my donor and their family I’ll be here for my son my grandson and my family. It’s really important people understand what a difference organ donation makes – it’s not just to people’s lives, but to their family too. My 86-year-old uncle kept looking at me and saying: “I don’t believe it”.
