"An inflamed liver was mentioned in my mum's medical notes back in the late 1990s, so it’s scary she wasn’t diagnosed sooner"

Please be aware, this story describes a terminal liver disease journey

Every time I try and share our story I falter because how do you put such a journey into words? One of us lost their life to liver disease, the other has stepped forward so our experiences make a difference and helps others to cope with living with and alongside liver disease.

My Mum was admitted to A&E with ascites in the summer of 2017 and she also received the devastating diagnosis of decompensated cirrhosis due to NASH, as it was called then. She had been treated for her thyroid, diabetes and rheumatoid arthritis and was always having blood tests. An inflamed liver was mentioned in her medical notes back in the late 1990s, so it’s scary she wasn’t diagnosed sooner. By the time she was, it was too late.

After her ascites were drained in hospital, Mum was treated with water tablets. They really helped but left her with a frailty and an illness that she couldn’t escape. Since her diagnosis and due to many of the side-effects of this disease she closed herself off from family and friends and rarely ventured out. It wasn’t just the effect that liver disease had on her body, but how it impacted on her mental health.

Mum would go on to need insulin to treat her diabetes and managed to stay as well as possible, even through Covid, until the autumn of 2021 when she was admitted again to hospital after a variceal bleed, and a C Diff infection alongside mild HE. After treatment on her varices, we were given the devastating news that she didn’t have long to live. I moved to look after her for her final eight months and she passed away at home in July 2022.

It is an experience I will never forget. I witnessed everything my beautiful Mum lived through and, whatever she was dealt, she never gave up on faith in life and was determined to beat her diagnosis even when she couldn’t.

It came as a blow to be diagnosed with a fatty liver too. My GP has said not to worry, lots of people have it and losing weight would correct it.

So how do you return back to your own life when you have lost one of the most important loves of your life? I don’t think I’ll ever really be able to be without her. Keeping her beside me in everything I do keeps all our memories alive, so to move forward with grief I created the Liver Lantern Project in memory of my lovely Muma back in Derbyshire where I live. I started making up end-of-life comfort bags that we donate to those entering this phase of liver disease which contain items that helped in Mum’s care.

After connecting with the liver team at The Royal Derby Hospital we also started the Liver Lantern Hub in September 2025, a community support group for anyone living with liver disease in the county. I was doing this from a carer’s perspective, so it came as a blow to be diagnosed with a fatty liver too.

My GP has said not to worry, lots of people have it and losing weight would correct it. I mentioned my Mum, so they agreed to do yearly blood checks and that’s it. I have spoken to others who have had the same reply but also feel a bit lost. How do you really know how far along your fatty liver is? I hope I have time to turn mine around, unlike Mum who never got the chance.

It’s amazing that the hospitals never gave us any literature when Mum was diagnosed in 2017. We had to do a Google search to find the British Liver Trust (as Liver UK was then known) and download their information – it was a lifeline in explaining what cirrhosis was and what to expect. Now anyone can pick up Liver UK’s information booklets in Derby Royal’s liver ward corridors, so it’s good to see things moving forward.

Since we started the Liver Lantern hub, Liver UK has enabled me to download all of the information we need and have been fantastic in supplying our support group with medical literature and information for the HE packs we created for the outpatients’ department. We’re really grateful for the amazing work Liver UK does.

I never imagined where this would lead only that I wanted our journey to help others treading a similar path to ours, knowing how lonely it is to live with liver disease. It’s wonderful that the members of our support hub feel like we have created a liver family – one that I know my Mum is always a part of.

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