Kay’s story: “The British Liver Trust nurses helped me change the course of my liver disease for the better and it feels like a bit of a miracle”

Kay had no idea her fatty liver disease was serious until she was referred to a gastroenterologist who told her that it was at an advanced stage and her liver couldn't be repaired. However, when she called the British Liver Trust's Nurse-led helpline the advice she was given helped her love her liver back to health. Thank you for sharing your story, Kay

I’ve always been a compulsive eater – whether I’m happy or sad. I have a really sweet tooth and could go through a whole tub of ice cream, but then always needed something savoury too. It was all very processed and convenient and I never looked at nutritional labels. Just the thought of a piece of fruit made me feel nauseous.

I have a very demanding job and in the evenings I really didn’t have the energy to be cooking so started eating more and more takeaways. I know now this was a form of self neglect as I would never do this for a loved one. For example my mum needed a bit of a health kick a couple of years ago so I put her on a really good non-processed diet and she lost two stone. I never did that for me though because when you’re that busy you put yourself down the bottom of the list. As well as the self-neglect, I was also on medication such as amitriptyline which can affect your liver – so I was running on junk food and medication really.

My digestive system has never been quite right and in 2022 I was referred to a dietician. After tests I was found to have pancreatic insufficiency and was sent for a scan which spotted the fatty liver. I had another test and was again told I had a fatty liver. I was borderline diabetic and also have problems with my back, so the fatty liver was just another thing.

Then I had a full blood test and my ALT levels came back raised and when I started getting stabby pains in my stomach I was sent for an urgent scan. The fatty liver was spotted again and my ALT levels went up further. I was referred to a gastroenterologist who asked for a FibroScan and then literally on Christmas Eve I got a letter from the hospital which was really quite harsh. It said I was at the advanced stage of liver damage and there wasn’t any way to repair it due to the level of scarring. I then had to go for an endoscopy within a matter of days and then three-monthly cancer checks due to the increased risk of cancer due to the scarring.

I was in shock reading the letter and more panicked the more I read about liver disease. I had so many questions but couldn’t get through to the consultant because it was so close to Christmas. I don’t have a background in science and never knew the importance of the liver and that you could die from liver failure. How could this have happened just from the food I was eating?

My doctors seemed quite relaxed about my NAFLD diagnosis. Surely if it was something serious, they would have said

I suppose I should have looked into it and partly blamed myself for that, but the responses from the doctors had been quite relaxed. Surely if it was something serious, they would have said. If the gastroenterologist hadn’t have asked for the scans would the disease just have carried on until it was too late?

When I started doing more research I read so many horror stories, but then came across the British Liver Trust and called the Nurse-led helpline. The nurse went through the letter with me, explained what the liver does and what fatty liver disease is in terms I understood. She didn’t sugarcoat the diagnosis but was also reassuring, saying: “Yes, this can become serious, but this is what you can do.”

I was still a bit shell-shocked but stopped eating rubbish straight away. I’d got all the desserts in for Christmas but threw them out. I always used to have Baileys at Christmas and asked the nurses about that, but was told it would be like adding fuel to a fire. The nurses probably stopped me from causing more damage to my liver.

I went for the endoscopy around New Year’s Eve and luckily that was fine. The consultant made a telephone appointment for January however unfortunately it was cancelled and delayed until February.  I went through my questions and was sad to hear that the liver damage was too advanced to ever be repaired or improved. I asked if there was any way I could get back to stage 1 of liver damage. He said no.

I called the Liver Trust nurses afterwards and they said they had come across cases where people do improve. This gave me hope and I was determined to be one of those cases.

So I now had my motivation, but knowing that food is likely what got me into this situation did cause some anxiety around knowing what to eat. The nurses really helped with that too. They told me to avoid processed food and I introduced blueberries, beetroot, radishes and broccoli which are known to be good for the liver. The only processed food I ate was sourdough wholemeal bread and wholemeal pasta. I stuck to the portion plates which tell you how much you should have of protein, complex carbs and vegetables – and still do – and if there were any chemicals in the food, I just wouldn’t have it.

I lost weight very quickly and was really enjoying the food. It was very Mediterranean based and felt like holiday food. Its so strange that I have spent years (and lots of money!) on so many weight loss diets and none of them worked and here I was now eating meals that I liked and lots of it, and I was losing weight without even trying!

The consultant had said there was no need for another FibroScan because my liver damage was so advanced

The consultant had said he probably wouldn’t be in touch for a year, but that felt too long for me. I arranged to have a private ultrasound which revealed I didn’t have a fatty liver anymore. I was over the moon! I approached my GP who seemed equally surprised and requested a blood test to check my ALT levels and contacted my consultant about another FibroScan. The consultant had previously said there was no clinical need for another FibroScan because my liver damage was so advanced, but I am not sure if there was an element of curiosity there too as it was agreed I could have another one. The blood test showed my ALT levels had gone from 275 down to 22 and my FibroScan results were 3.2Kpa in August 2023 down from 11.4kpa in November 2022!

Since then I’ve had cancer checks with the liver nurses at the hospital who have also confirmed I have a normal looking liver – there’s no scarring at all. I have also had an appointment with the consultant who was very surprised with the results and has discharged me from their service!

I lost nearly four stone and haven’t calorie counted once. It doesn’t feel like a diet. If I want a burger and chips I’ll make sure the bun is smaller and wholemeal, make the burger myself, do the chips with avocado oil in the air fryer and have a yogurt dressing instead of mayonnaise. When I really want a dessert I have Greek yogurt with tahini, chopped bananas and a bit of honey and walnuts on top – it’s gorgeous.

I do sometimes lapse, but think ‘Don’t mess this up. Remember what you’re doing to your body’. It’s made me think a lot about what we eat and its not until I tried to eat clean (ie chemical-free food) that I realized how much of it there is out there. I really believe they put something in processed food to make it more addictive as when I do lapse – its hard to get back to good eating again even though the ‘clean food’ tastes better than the processed stuff!

I am one of the really lucky ones and it could have been very different. The British Liver Trust is an absolute asset and its nurses are outstanding. I can say without a shadow of a doubt that they have been the most helpful, insightful, empathetic and supportive professionals and I would have been lost without their input. Every nurse I spoke to was not only knowledgeable, but also genuinely interested which made me feel heard and supported. They are one of the first people I contacted when I found out it had been reversed – they were as excited as I was which was lovely.

I am confident they have helped me change the course of my liver disease for the better and it feels like a bit of a miracle.

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