Jamia’s story: “There should be more information about NAFLD because people don’t realise how serious it is until it’s too late”

I’d heard of fatty liver disease before my husband was diagnosed, but didn’t realise how serious it could be. I’d heard of cirrhosis, but we weren’t big drinkers, so never thought we would have to worry about it. When I started researching non-alcohol related fatty liver disease (NAFLD), I discovered how big a problem it is so I don’t understand why people aren’t checked for it. If, by telling my story, I can stop one other family going through the hell that we went through, it’s worth it.

Stuart was the love of my life. At times I still can’t believe he’s gone and I’ll never get over it. He proposed on our second date, we got married three months later and were together for 35 years. He made me feel loved and was so special. We adopted our disabled children as babies and worked as a team as parents. He was the best dad, always making sure they never missed out on any opportunities because of their disabilities. He would do anything for anybody.  

He was coming up for 60 and taking blood pressure tablets so wanted to change his life a wee bit. My daughter is 32 and my son is 28 and looking after them during lockdown took it out of us both. Stuart started a healthy eating plan and was doing well for the first two weeks but then his stomach suddenly started getting bigger.

Stuart’s personal trainer said he couldn’t possibly have put on weight so quickly and told him to see a doctor straight away. He had a blood test and was told that evening to go into hospital because there was a problem with his liver. The doctors drained 13 litres of fluid out of him, but he started vomiting blood afterwards. They said it could be varices (enlarged or swollen veins) but it was actually a bleeding ulcer. Stuart was diagnosed with non-alcohol cirrhosis of the liver and told he might eventually need a transplant.

Stuart did everything the doctors of him after he was diagnosed with non-alcohol cirrhosis of the liver. We tried to embrace it as something that would change our lives and make us healthier

He was discharged the following week and told to change his diet. He did everything he was asked to do – he wouldn’t eat anything until he’d triple checked that it was ok and stopped drinking Pepsi Max and drank water instead. We tried to embrace it as something that would change our lives and make us healthier.

A few weeks later Stuart said he could see himself wasting away because he’d lost weight even though his stomach was still swelling. He started vomiting blood again. I phoned for an ambulance and as they came in through the front door my husband collapsed. He was taken to hospital where they said the ulcer had come back.

Stuart got out after few days and was still embracing the diet. He would weigh himself every morning and it was heart-breaking to see him putting on weight. He went back to hospital a week later to have 18 litres drained and another 18 litres as an emergency three weeks after that because he was feeling really rough. Unbeknown to me he had been to the GP saying he needed to fix him because his job was to look after me and the kids and he didn’t have time to be ill. He was just so selfless.

He had never spoken to me in any bad way at all, but one day Stuart started saying “You’re f****** stupid” and I thought ‘wow, that is not my husband’. A wee while later he started on again, so I phoned the hospital. The doctor agreed he should come in and, on the way there, Stuart was so confused and trying to use a napkin as a phone.

He was diagnosed with encephalopathy and also had covid, we all had it, so I couldn't visit him for 10 days. The doctors were giving him medication so hopefully the confusion would subside. His vitals were fine but then they called to say he’d stopped breathing and was on a ventilator. He came off it a couple of days later and was really good – totally focused and apologising for what had happened. I told him he had nothing to apologise for.

A couple of days later I tested negative for Covid so was able to visit him. I couldn’t believe how much weight he’d lost and how vulnerable he looked.

Stuart had his back to me and the nurse told him to turn round because there was a surprise for him. He couldn’t figure out how to do it, but when he saw me he was just smiling. I’d taken in some strawberries that he’d planted himself. He put one in his mouth and chewed and chewed and then spat it out. I asked him what he was doing – he wouldn’t speak but just kept smiling at me. It was just so strange. He then had a good few hours, but by the time I was leaving he was totally confused again.

Stuart was put on the liver transplant list and had two offers after two weeks, but they weren't viable

My life for those eight weeks was so up and down. I managed to get carers for the kids so I was going in at 8am and staying till 8pm. Some days Stuart knew who I was, other times he didn’t have a clue. I would spend the whole day trying to feed him and give him his medication. Sometimes he would open his mouth and let it all run out or he would spit it in my face, tell me he hated me and I should go. Other days he said he loved me and that he was really sorry.

Stuart was put on the liver transplant list and had two offers after two weeks, but they weren’t viable. A couple of days later three doctors came in and said they were taking him off the list because he was too malnourished. He wasn’t eating and wouldn’t keep the feeding tube in when he was confused.

I asked them to give him another chance because he was my whole life, but he had a syringe driver put in and was basically left to die. He was asleep most of the time or crying for his mum and dad. I went onto autopilot and wanted to make his life as comfortable as it could be. I just couldn’t believe that after 35 years of marriage I was going to lose him.

The day before Stuart died he kept trying to touch my cheek. To me that was like him saying goodbye. He opened his eyes just before he passed away, but he wasn’t there.

Encephalopathy tore us apart and robbed us of the last eight weeks of his life

We were soul mates, everybody said it, but encephalopathy tore us apart. My mum had dementia and I’d say it’s worse than that. It didn’t stop me loving him, but it robbed us of the last eight weeks of his life.

I have good days and bad days now, the worst thing for me is my children. They just aren’t coping with their daddy leaving us. My son has stopped eating because he thinks his dad is going to come and feed him and my daughter is up during the night looking for him. They don’t understand what’s happened.

When he was diagnosed Stuart and I tried to figure out if there was a sign or any symptoms that would have had given us a clue to his illness but there was nothing. Reading up I thought he would have had at least two years, I never thought that within five months I would have lost my husband, especially because he’d never been ill. Stuart didn’t get the chance other people may get.

I hope the British Liver Trust gets somewhere with its campaign for earlier diagnosis of liver disease. There should be more information about NAFLD because it’s horrendous and people don’t know about it or realise how serious it is until it’s too late.

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