Chris and Sam’s story: “We weren’t told about encephalopathy at all”

When Chris was diagnosed with non alcohol cirrhosis of the liver neither he or partner Sam were prepared for the terrifying impact of encephalopathy. Thank you both for sharing your story.

Chris: I’ve had psoriasis since I was a baby, my grandfather suffered with it too. I’ve had all sorts of treatments for it – infusions, tablets, UV treatments and biologics, and that’s what’s messed my liver up.

I’ve been working as a farrier since I left college, but a couple of years ago I started feeling ill – I was bloated and sleeping a lot. On 8th December 2020 I was referred to hospital because I was getting worse. My belly was distending and when I went for an endoscopy I started vomiting blood everywhere. They had to cauterize my gullet, but I’ve since had stomach ulcers so had to go in again and again – I had eight endoscopies over 12 months. I also went for CT scans, ultrasounds – every scan known to man – and was told I had non alcohol cirrhosis of the liver and might need a transplant.

It was a bit of a gobsmacker – I was 45, working, providing for my family and in the prime of my life and then all of a sudden I had this to deal with.

I was put on some heavy-duty pain killers like Oramorph, Tramadol and Diazepam and given diuretics to move the fluid. I’ve always eaten healthily, but they really knocked my appetite. If a meal was put in front of me I would just push it away, if I tried to eat it I would just start vomiting – I could only have soups and jellies.

The A&E consultant said that Chris had been slipping in and out of a coma

Sam: About four months later we’d gone to bed as usual and Chris was very quiet and absolutely still. I was talking to him and stroking his head but he wasn’t responding. I thought it was because he wasn’t well and exhausted through lack of sleep. We were told later by the A&E consultant that he had been slipping in and out of a coma due to the build-up of ammonia in his brain.

At 5am Chris got out of bed and tried to go to toilet against the bedroom wall. He was very disorientated, unsteady on his feet and agitated. I asked him what he was doing and he replied: “Aren’t I in the bathroom?” Then he turned and went into my youngest daughter’s room.

He was adamant it was the toilet and started getting verbally and physically abusive and that’s not Chris at all. He’s a big lad, but he’s a gentle giant. I got him out of there and stood by the door thinking he would try to push me out of the way because in his mind I was stopping him from using the loo. He’d obviously woken both our daughters up with his raging.

I was scared because I just didn’t recognize him, he was totally in his own zone.

Chris: Sam thought I had overdosed on Oramorph. I went into a temper and was raging for two and a half hours, telling Sam to ‘**** off and leave me alone’. I didn’t know who I was, where I was or what I was doing and didn’t recognize Sam. My elder daughter came out of her bedroom and Sam told her to call the police.

Sam: Chris never has and never will lay a finger on me, but that night he tried to punch me. I ducked and covered my face. He was switching in and out of this weird behaviour and eventually ended up in the toilet where he soiled the bath. There was no point in telling him me was in the bath, it had taken him ages to step in there, so I treated him like someone with dementia and just went with it.

I was absolutely exhausted, mentally and physically, and so scared. I called his mum, but couldn’t speak. I was just crying.

I remember nothing until I woke up ten hours later in A&E, wired up and having blood tests

Chris: Four police officers turned up to get me out of the house. The sergeant came upstairs and I was still raging. He kept saying: “Come on, mate, we need to get you into hospital” but the more he called me mate, the more he wound me up.

Sam was worried that I was going to flip and clock him because I didn’t know what I was doing. Two other policemen came up and stood in the doorway. One was an old friend from school and he said: “Come on Chris, let’s put your shoes on and we’ll go for a run in the car.” I went down the stairs with him and he put me in the back of the car, like a little kid. I remember this but nothing else till I woke up ten hours later in A&E, wired up and having blood tests and all sorts.

Sam: His mind was racing by then, thinking I would want him out of my life and not understanding what was happening. The A&E consultant didn’t really explain anything or tell him he could ring me. They rang me to say I could come and see him, but nothing about how he was. It was only when I got there that I was told Chris has suffered a bout of encephalopathy. If we had been told about it before I would have known the symptoms and how to avoid it or stop it going any further.

I’ll never forget that night. The police asked me if I wanted to press charges. I didn’t. Of course not.

Chris: It was a learning curve for us and when I got home four days later I got another bout. I was getting agitated because I didn’t want to go to hospital.  An out-of-hours GP came and went, then an ambulance crew turned up who managed to persuade me to go in. They asked me my date of birth, but I couldn’t remember or again who I was or where I was. I also couldn’t tell then what 100 minus 2 was either. It's a very, very scary situation to be in – for the partner too.

Sam: This second bout wasn’t as extreme, but he was trying to urinate against the wall again. I called the doctors straight away. All in all he’s had about seven episodes and each time he’s delirious and disorientated.

Chris: I was referred to Queen Elizabeth Hospital in Birmingham where one of the surgeons told me to stop taking Omeprazole tablets because a new study says it can contribute to encephalopathy.

Sam: I’ve been walking on eggshells every day, but less so since he came off the Omeprazole. There have been no weird signs since.

It’s taken me two years to be fit enough to get on the liver transplant list

Chris: They did loads of tests in Birmingham and said I needed a new liver. I’d been in and out of hospital for 12 months so my fitness totally went and I’d lost a lot of weight. The dietician said my body was eating itself so she gave me high protein shakes and tablets. They’ve really helped me build myself back up. My appetite is still up and down now, but I do try to eat because I don’t want to lose muscle mass. It’s taken me two years to be fit enough to get on the transplant list. I’ve been on an exercise programme under a personal trainer to lose more weight and build up muscle.

Sam: We faced one obstacle after another to get Chris on the transplant list. We were told if he couldn’t reach the level of fitness needed it would be palliative care. We’ve only been together 13 years and created a family. I will nurse him until his last day on earth, but I’m not ready for that. It’s not fair.

He was put on the list on 8th December, which is very ironic, because 8th December two years ago is when he first went to hospital. It’s been a very long and stressful journey.

Chris: I felt there was now light at the end of the tunnel, but after I was put on the list everything was gradually getting worse. I was getting the shakes and would vomit slightly whenever I tried to eat.

I’d been feeling rough for a couple of days and was as yellow as a minion when I had an appointment with my physio. I was immediately given a blood test and told not to leave until my consultant had been informed. He admitted me to the ward and told me both my liver and kidneys were playing up. I’d put on nine kilos of fluid in less than a week and also had an infection.

I was due to be discharged after a week, but still wasn’t feeling right so was kept in for longer. Then on the evening of March 25th at 5.30pm a nurse told me I needed a chest Xray because I was going to be transplanted that night! I tried to ring Sam, but she was on the beach walking the dogs. Then I rang my mum but she was out, so I sent them both texts. It was a bit of a whirlwind but it was the best way as I didn’t have any time to mull over it.

They put a mask on my face in theatre and told me to breathe in and out and the next thing I knew I was coming round in ICU.

The operation took nine hours, including three to remove my old liver, I had two hours of dialysis halfway through and then they took my gallbladder out. When they fitted the liver and the blood started flowing, it was like it and my body were old friends and I’ve not had any trouble with it since.

The first thing I noticed after Chris's liver transplant was that his psoriasis had gone and it hasn't come back since

Sam: The liver coordinator phoned me at midnight to say Chris’ liver was out and she phoned me again at 3am to say he was out of theatre and would be moved to ICU at 4am. I was able to see him at 11am and the first thing I noticed was that his psoriasis had completely gone and it hasn’t come back since – he’s got skin like a little baby now.

I spent every single day sitting next to him and talking to him. The way it happened was just so surreal and I’m so glad it’s over.

Chris: After the transplant I was in intensive care for five days and then moved to the ward. On the first day there I walked six steps forward and six steps back with the physiotherapist’s help. The day after they took all the catheters and the drain in my abdomen out and I walked to the toilet and back, then out of the ward and up to the first nurses’ station and back to my bed. Then I did a whole lap of the ward and haven’t stopped since.

I went home ten days after the transplant and the care you get afterwards is second to none, if you have a problem you can ring them any time, night or day. Nothing is too much of a problem.

When I came out of theatre my bilirubin was 187 and it’s now down to 24 so my new liver has been clearing the old mess up. I’m getting used to the anti-rejection meds now, but I’m feeling a lot healthier already and my life is starting to come back together.  My appetite is still a bit finicky – food is either salty or too sweet, but that’s my taste buds trying to adjust, otherwise I can keep food down and am eating as healthily as I can. I’m on a high protein, low calorie diet and sticking to what the dietician at the hospital has said.

Everything is starting to get better – it’s all baby steps at the moment – but I’ve been given the gift of life again and will see my daughters grow up and get into their chosen careers. My youngest is eight and says she wants to be a nurse. She watches Sam do my tablets then checks the dosage herself and says: “You can take them now”.

I missed a lot of time with her through not being well but hopefully things will settle down now and we can get back to normal family life. I’m looking forward to going to the beach with the dogs and going camping – all the things I missed out on over the last three-and-a-half years. I had to surrender my driving license before due to the encephalopathy and I’m looking forward to getting it back.

I would say to anyone in the same position, think of something that will motivate you – your kids, your wife, yourself, and keep your head down and push yourself as hard as you can. Stay positive, never give up. You will get low days but you’ve got to keep fighting. Life’s too short and too precious.

I’m so grateful to the donor and their family – they’ve given me the gift of life.

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