Steph’s beloved father died just a few weeks after being diagnosed with MASLD, aged just 62. When Steph visited the British Liver Trust’s Love Your Liver Roadshow and received a FibroScan a few months later, she was daunted and scared by the results. Thank you for sharing your story, Steph
I still can’t believe my dad’s not here, he loved life and was so healthy. He had a really strong relationship with me and my sister Sara and was our best friend and safe place. As long as he was on this Earth, I knew I would be OK because he was always there to protect us.
Dad was failed by the system – he had 22 liver function tests over 11 years and they all came back abnormal, but he was always very blasé about fatty liver disease because that’s how medical professionals portrayed it to him. Liver disease is a silent killer and by the time Dad’s symptoms started showing, it was end-stage. If those professionals were educated more, it could have been picked up sooner.
When Sara and I found out that the British Liver Trust was holding a Love Your Liver roadshow in our town we both went. Dad’s former liver nurse was volunteering there and she did my FibroScan. Because of my healthy weight and lifestyle I felt daunted and scared when I got my score of 8.2. Although it’s borderline, because of what happened to my Dad I knew where it could go. The nurse said fatty liver disease could be genetic in my family, so I needed to be scanned again.
When I went to my GP they could see my concern and did loads of tests. They were all fine, but I was still referred to the hospital gastro unit. In contrast, Sara’s GP didn’t test as much, so she would go back to her surgery and say: “My sister’s been tested for this…” I feel that Dad was a bit too much of a gentleman to ask his doctors too many questions and his experience has opened our eyes and made us push for answers more.
You’ve got to look after yourself so you can be with your loved ones for as long as possible.
I reduced sugary and fatty foods in my diet and was already working out twice a week and have now also started Couch to 5k, so I do something four days a week, as well as walking my Labrador every day. You’ve got to look after yourself so you can be with your loved ones for as long as possible.
When I was scanned again at the gastro unit my score had gone down to 5.2/5.5 and I was told to keep doing what I was doing. Even though I’m now out of danger I asked if they would still be looking after me because of the family history and they said I would be scanned again in 18 months’ time. I do think I’m on the radar now because of what happened to Dad.
I was so relieved with my new score and when I got back in the car a song came on the radio that we played at Dad’s funeral and I thought: “He’s with me!”
My children were quite alarmed by my first FibroScan score because that’s what Granddad died of, but I told them I would be fine because I was being looked after. It is scary though, because Sara and I don’t know if fatty liver disease will be passed onto our children and that’s why we shared our story because we want to raise awareness.
We cope with losing Dad by taking each day as it comes, looking after our health and voicing our opinions. He would want us to get on with our lives and be there for our children – they are what keep us going. Even though he’s no longer with us, I feel he is still protecting us because otherwise we would never have gone to the Love Your Liver roadshow.
Read more: Sara’s story
Sara goes to Westminster with the British Liver Trust to campaign for change
‘Widespread preventative measures are woefully inadequate’, says British Liver Trust Chief Executive
