Please be aware, this story describes a terminal liver disease journey
Sara’s father was told that he had a fatty liver in 2014 and only received one scan in 2016. In 2024 he was diagnosed with MASLD and tragically died a few weeks later aged just 62. Now as Sara and her family try to come to terms with their loss, they are calling for robust procedures to be put in place to ensure everyone who needs surveillance of their liver receives it. Thank you for sharing your story, Sara
I know everyone thinks their dad is amazing, but mine really, really was. He was a gentleman in every sense of the word and was so kind, loving and generous. To say we’re shocked, devastated and heartbroken at his death due to MASLD (metabolic dysfunction-associated steatotic liver disease) and HE (hepatic encephalopathy) is an understatement. He was just 62 and had so much to look forward to.
My dad Stephen wasn’t a drinker, but liked a sweet treat every now and then when he was diagnosed with type 2 diabetes in 2000. His diabetes was well managed and he didn’t need much in way of medication due to his healthy lifestyle. Dad especially loved cycling and walking in the Lake District. He did everything right, but it wasn’t enough. 
In 2014 blood tests revealed deranged LFTs and in his annual diabetic reviews my dad was told he had an abnormal liver but not to worry about it. He was never referred to anyone and the only scan I can see in his medical notes was in 2016, then nothing.
In April 2023 he was feeling really lethargic which his doctors thought was an iron deficiency and prescribed tablets. He told my sister his blood results had come back fine, adding: ‘Nothing to worry about, love, I have a fatty liver, but I’ve always had a fatty liver’. By September Dad was quite withdrawn, forgetful, slurring his words, and kept going back to bed. The doctors were doing lots of tests and thought it might be something neurological like Parkinson’s Disease, but still weren’t looking at his liver. By December my dad was like a zombie and I thought could it be depression. If only we had known then that they were mild HE episodes.
Decompensated cirrhosis
In January 2024 he went into hospital with a painful hernia and without that I don’t think they would ever have found the MASLD. He was diagnosed with cirrhosis in March and as soon as I heard that word I went onto the British Liver Trust’s website. The doctors said it might be compensated – I asked if they were sure it wasn’t decompensated due to dad’s symptoms. They came back and agreed and my dad was given a 50 per cent mortality within 12 months. We were devastated and in utter shock. Dad was a man of few words and when we asked him how he felt he would just shrug his shoulders. He told his wife he was scared and didn’t want to die, but as far we were concerned he wasn’t going to die, he couldn’t. We would get him better.
By now Dad’s HE episodes were severe, he couldn’t speak, feed or wash himself or go to the toilet on his own and he was fast-tracked to an appointment with a consultant. I had a four-month-old baby at the time and wasn’t getting much sleep, so all I’d do at night was research. The ‘Questions to ask your consultant’ page on the British Liver Trust website became my Bible.
“You do know you’re dying, don’t you?” the consultant said to my dad when we first saw him in April. I wanted to know what we could do to help and the consultant said at least 10,000 steps a day to get dad fit enough for the transplant assessment. My dad was quite bad at that appointment and didn’t know who I was when he first saw the liver nurse but we were determined. By his next appointment with the consultant four weeks later, he was walking everywhere. The consultant said: “You’re going to do this, aren’t you!” and my dad said yes.
In the weeks following his transplant assessment Dad’s health started to dip and we noticed the HE symptoms creeping back in. We knew it was a race against time for the transplant.
I told the consultant that my dad had had these HE episodes since at least November and he asked if I was from a medical background. I told him I wasn’t, but had done a lot of reading on the British Liver Trust’s website. Dad was given the Lactulose and Rifaximin which did help, but they had to keep dabbling with the doses because it made his diabetes go haywire, so he was also put on insulin to give him a good shot at a transplant. He smashed the transplant assessment on June 12th and were so proud of him and excited for the future.
They were due to talk about him at the next MDT meeting but then lesions were found on dad’s liver so he needed a scan to rule anything out. He was due to have that in two weeks and by day 13 I was getting worried and rang the hospital dealing with dad’s transplant. They offered an appointment for 7th July which I said wasn’t good enough, so they said 1st July instead. In the weeks following his assessment dad’s health started to dip and we noticed the HE symptoms creeping back in. We knew it was a race against time for the transplant.
On the Monday morning of 1st July we called an ambulance because of how dad was presenting and were worried he could go into a coma. The ambulance drivers were worried dad had had a stroke and we explained his HE made him present in that way but this was much worse than we had ever seen. Dad was taken into hospital and never came home again. He kept having fits and the consultant was worried they were seizures so they did a CCG. It didn’t show anything in his brain, so they monitored him for 24 hours and again nothing showed up, so it had to be HE. The consultant said he’d never seen it so bad. HE took everything from my dad.
My dad was put in an induced coma for a few days and it took two weeks for him to get out of ICU. There were signs of improvement when he went onto a ward and we got a private physio in to work with him because he couldn’t have a transplant unless he was walking. Dad couldn’t speak at this point, then got an infection and they stopped giving him his meds and he passed away on 31st July. I pleaded with the consultant saying: “He’s dying but give him a chance with a transplant even if he dies while you’re trying”. The consultant explained dad wouldn’t make it through the operation and that he couldn’t do anything further but gave us credit as a family for fighting so hard for him. We couldn’t have asked for better care and support from his liver nurse and consultant. They truly fought for dad.
Liver disease pathway
We never thought Dad would die and are now going through his medical records to try to understand why a man who had something wrong with his liver wasn’t being scanned. There needs to be a robust procedure in place so no one else goes through this because if we’d got that diagnosis a little bit sooner, if he’d just had a few more weeks, he would have got the transplant. And if he had been put under surveillance a few years earlier they would have seen his liver was getting worse and it wouldn’t have got to this point.
Everybody with liver disease should have a pathway otherwise we’ll heading for a liver disease epidemic and the NHS will be inundated. As a family we want to raise as much awareness of fatty liver disease and HE. I don’t understand how there can be leaflets and posters on every condition known to man apart from the liver in GP surgeries when the British Liver Trust has literature that they could print and put up.
The British Liver Trust has an amazing wealth of resources and everyone there is so helpful. We asked for donations to the Trust at Dad’s funeral and I’ve signed up as a volunteer too. People also don’t realise how lucky they are to have the Trust’s Love Your Liver roadshow because we can’t just get scans willy-nilly. They could be walking around as a potential ticking time bombs and a visit to the unit could save their life.
My sister and I went to the roadshow when it was in our town and through a twist of fate, our dad’s liver nurse was doing the scanning. It turns out we both have early-stage fatty liver disease and the nurse wants to see us again in six months. Without Dad it would never have occurred to us to go and we feel even through death he’s still protecting us.
Read more: ‘Widespread preventative measures are woefully inadequate’, says British Liver Trust Chief Executive
Sara goes to Westminster with the British Liver Trust to campaign for change
