John* weighed more than 23 stone and felt tired and dizzy all the time. He blamed sleep apnoea and asked a sleep clinic for help. When they requested blood tests, the results shocked him into contacting the British Liver Trust’s Nurse-led helpline and reading patient stories to help him make the vital changes to turn his health around. Thank you for sharing your story, John
For over 25 years I drank and ate excessively and more recently I was probably averaging around 150 alcohol units per week. Every week I promised myself that a Monday would bring a sober and healthy life but it never really lasted. By September 2023 I weighed over 23 stone and had high blood pressure, stomach issues, gout and bad sleep apnoea. It was miserable.
I was tired and dizzy most days and often had hangovers. I blamed the sleep apnoea so in the summer of 2023 I asked a sleep clinic to analyse my sleep patterns and they requested some blood tests from my GP. I had been told a few times that I had a fatty liver but never really thought about it, so those tests were one of the best things that have ever happened to me. Without them I would have done even more damage to myself.
When the blood tests confirmed that I had weight-related diabetes and likely cirrhosis my heart just dropped. I somehow kept working that day, but kept bursting into tears because my Google research indicated that cirrhosis was a short-term death sentence (I later found out this was not always true of course). However, I kept telling myself that the bloods could be off and to not give up hope.
My main GP was amazing and pushed for an ultrasound and a FibroScan. Another GP misinterpreted the ultrasound results, saying I had a very fatty liver but no cirrhosis. For a while I felt like I’d dodged a bullet, so I wasn’t worried about the FibroScan and looked forward to seeing a gastroenterologist who would explain it all.
Cirrhosis fears
However my fears began to grow, so I contacted my original GP who said I had a KPA (liver stiffness score) of 34. My legs almost went out from underneath me because I knew that meant cirrhosis. I started asking more questions, but the GP couldn’t help and said I’d have to wait until my gastroenterologist appointment in six months’ time. I couldn’t live in limbo that long so for the first time in my life I booked a private consultation with a hepatologist. It may be the best money I ever spent. He confirmed cirrhosis but said it didn’t have to be life ending as long as I responded in the right way.
As well as instructing my GP to order a suite of NHS tests for me, including an endoscopy and other blood tests, the hepatologist recommended that I see a specialist dietitian. The dietician gave me proper daily guidelines on protein, carbohydrate, fibre and salt levels and instructions on how to ensure I had enough carbohydrates through the night to ensure my liver didn’t go into starvation mode and start storing fat.
Since the initial GP appointment I had stopped drinking alcohol, started eating healthily to daily calorie limits and would walk two-four miles per day when I could. I began to lose weight and felt better. Going without alcohol was very hard, but I was continually surprised that I could do it as I had never managed more than two weeks before. I believe all this has helped the liver healing process.
Because my emotions were all over the place and I was spiralling into worry I went to see a therapist. She really helped with coping strategies and suggested writing my worries down and weighing up how likely those bad things were to happen. I then wrote an encouraging letter to my former self which really showed me how far I’d come. My wife was a brilliant source of support too, I couldn’t have done it without her and my Christian faith has also seen me through the dark times and helped me stay on the right path.
The British Liver Trust’s website, nurse-led helpline and patient stories were a real source of hope for me
I had quickly found that Googling wasn’t a good idea because there’s so much misinformation. Some online forums were helpful to an extent, but there was still misinformation and contentious individual views. The British Liver Trust website was brilliant as it felt like an informed and trusted source of information. I started calling their Nurse Helpline with specific questions and they were always amazingly helpful and so generous with their time.
The patient stories on the website were also a real source of hope for me. There was one in particular I kept returning to: Gordon’s Story. Gordon was of a similar age to me and his initial FibroScan score was similar to mine. He talked about stopping alcohol and around a year later his score was down in the low teens. It’s one thing to be told by a medical professional that these things are achievable, but reading about someone in such a similar situation to me was inspiring. It’s the reason I want to share my story, in the hope that it reaches someone out there.
My blood results are now almost in normal range, just over a year after those first results when my AST and ALT were in triple figures and my GGT was in the hundreds. A FibroScan in the summer of 2024 had a KPA result of 13 and a totally normal liver fat level, the endoscopy was fine too and the most recent ultrasound showed a much improved picture. The last letter I had from my NHS Gastroenterologist stated I do not have cirrhosis now, but fibrosis which is less threatening. My hope is to now reverse that too, by continuing to do what I’ve been doing.
I feel so much better physically and mentally. I’m now well over a year without alcohol and although I might have an occasional food cheat day or two every month or so, I’m eating healthier than I ever have in my life. What surprised me the most is that I’m really enjoying it! I always thought people who said that were just putting on a brave face, but my life is so much better than it was before.
I’m no longer diabetic, my apnoea is less of an issue and I don’t need the stomach and blood pressure medications I’d been on for years. I now go running three or four times a week, hit the weights three times a week and have lost almost nine stone. I’m fitter now than I’ve been in 25 years.
Nurse-led helpline
I’d urge anyone in a similar position to where I was to try not to spiral. And don’t randomly Google – there is so much misinformation and outdated guidance out there. I now only use very select and trusted sources of info like the British Liver Trust. And I’d recommend the Trust’s nurse helpline – speaking to someone in the know really helps.
If your NHS specialist appointment is months away, consider seeing a private hepatologist or gastroenterologist if your means allow. If you drink, then stop. Podcasts and support forums helped me – I tried AA and SMART Recovery, they weren’t for me, but could be for you – just don’t rule out any sources of support. Also get proper advice from a dietitian who knows about liver conditions. Eat healthily and ensure you get the macronutrients you need and exercise, even if it’s just walking in the early days. As weight goes off and/or you gain fitness you can think about other types of exercise. The more positive action you take the better you’ll feel, and the better chance you’ll have of turning things around. Do it without delay.
Trusted sources of information can also help you turn it around – the British Liver Trust is really trustworthy and super helpful. Start addressing your worries head on with them in your corner. They’re an amazing organisation for someone who has liver problems.
I no longer have high blood pressure, stomach issues, diabetes, an extremely fatty liver or an alcohol problem and the specialists now say I can live a normal, long and healthy life. My liver still has damage but it’s nowhere near as bad as before. If I can do it, anyone can and you’ll be so glad you did. We all have doubts and hiding from them put me in the situation I was in. Now drag them out into the light and take them head on.
Sharing this experience has made me realise how bad things were for me, but how far I’ve come. Without the positive action I took I’d be in a much worse situation and I hope this story helps anyone in a similar situation realise that fighting back to turn thing around is an option. I hope they get some reassurance and hope from my story in the same way I did from Gordon’s and the other patient stories on the site.
*Name has been changed as John wishes to remain anonymous
