Liver Warrior's Jump For British Liver Trust

On Saturday 21st October, 2 of us will be throwing ourselves out of a plane at 13,000 feet to help raise money and awareness of the British Liver Trust, and this is why...

I never thought I would be hospitalised with a liver disease at the age of 26, and yet that is where I found myself for most of the first 6 months of 2023.

At the beginning of this year I started to develop what I could only describe as arthritis-like symptoms: my joints and muscles were really sore, I was struggling to get up in the mornings and found the smallest of tasks like walking down the stairs or walking the dogs to be an impossible mission. I called my GP and explained the symptoms I had been getting, they thought it might’ve been low iron levels, however they invited me in for blood tests just in case

In less than 24 hours of going to my blood test, I got a call from my GP telling me that I needed to stop what I was doing and I needed to go to my nearest A&E because my Liver Function Tests had come back elevated - most shockingly was my ALT (ALT relates to enzymes found in the liver cells which leak into the bloodstream when the liver cells are damaged - these should sit between 7-35) sitting at 952!!

The following 6 months were absolute hell consisting of no answers, deteriorating health and becoming increasingly similar to a member of the Simpsons' cast. I endured multiple blood tests, was an inpatient in hospital for multiple weeks at a time, had several ultrasound scans, an MRI, CT scan and had 6 pieces of my liver removed for further investigation by the Queen Elizabeth Liver Unit in Birmingham.

In August I was finally given an answer. Seronegative Autoimmune Hepatitis (SnAIH). I had finally received a confirmed diagnosis. A serious juncture that brought with it a mix of emotions, as having a name for this condition that I had been suffering with for months, provided both clarity and gravity to the situation. SnAIH is when your body's infection-fighting system (immune system) attacks your perfectly healthy liver cells. It is a long-term chronic liver disease that causes inflammation and liver damage.

A whole new level of anticipation had arrived and the next chapter of my journey was about to start. I am now dependant on a combination of steroids, immunosuppressants and weekly blood tests. Never in my life did I imagine that I would wake up every morning needing to consume a total of 10+ tablets, and although the thought of eventually needing a liver transplant still very much being a possibility; for the next 5 years I know these magical drugs will at least let me be able to live a new ‘normal’ life and slowly build back up to the person I was before this nightmare all started. I will receive reviews with my consultant every 3 months to monitor my progress as well as any potential liver damage, and at the end of my suspected 5 year journey I will face another liver biopsy to determine the activity of my AIH with the possibility of finally going into remission, and leaving this all behind as a very distant but humbling experience.

Having the support of the British Liver Trust has helped both me and my family more than I could ever express. I have spoken to nurses over the helpline, and attended virtual support groups that the BLT host - enabling me to connect with other people who are living in the same circumstances.

One of the biggest challenges I face now is educating people about my liver disease. As soon as I mention that I have SnAIH, I am instantly faced with judgement and attached to the stigma. “It must be self-inflicted”. My biggest goal now is to help raise awareness of liver disease, and in particular Autoimmune Hepatitis so people like me don’t have to go through the pain and never ending stream of bad-news to get to the diagnosis they deserve. We need to remove the stigma that is associated, whether or not you have contributed towards the condition, the support should be there for you regardless of the journey. Accepting you are living with a life changing condition is challenging enough without the extra hurdles.

The British Liver Trust provides advice and information to patients and families, campaigns and works with healthcare professionals to improve early diagnosis and patient care, raises awareness of how to look after your liver and supports research.

Thank you for your support, and please don’t forget to Gift Aid your donation if you are a UK taxpayer.