I wish I had known about the British Liver Trust.
"My journey began around four years ago with bouts of lethargy, feelings of persistent coldness and poor sleep. I already had type 2 diabetes and this was worsening as well. After a few false starts, I was referred to the Gastrointestinal Department at the local hospital in Stirling.
"My diabetes and weight were looked at as the cause of my symptoms. Many more blood tests and numerous types of scans followed, culminating in a fibroscan which showed that my liver was cirrhotic and the condition was irreversible. I wish I had known about the British Liver Trust at this stage because I could have really benefited from the advice of their liver nurses and library of information booklets.
"My wife and family would have appreciated their help as well, as my ‘liver journey’ also affects them greatly. Public awareness of liver disease is limited and it can be very trying explaining to people about the many varieties of liver disease, not just the headlines put about by the media about celebrities.
"Following diagnosis, the best I could hope for was a period of stability. NAFLD and non-alcohol related steatohepatitis (NASH) can be helped by diet and exercise, so I lost masses of weight and started an exercise routine under supervision.
"Unfortunately, it was too late. My symptoms worsened and I started having periods of jaundice. I was admitted to hospital with encephalopathy and ascites. My ascites fluid was drained with increasing frequency but my liver started to decompensate and I became very poorly indeed.
The road to recovery
"I was referred to the transplant unit in Edinburgh and quickly was admitted for a week-long assessment to determine my suitability and fitness for the transplant list. Exceptionally, I didn’t have to wait long and received ‘the call’ in the early hours on a Friday morning in December 2018.
"The long operation went well and after a further four weeks and a few more interventions, I went home, overwhelmed by feelings of gratitude towards the surgeons, doctors and nurses in the Unit. Also in the knowledge that the road to recovery would be more than a couple of weeks.
"After a year, the coordinators helped me compile an anonymous letter to my donor's family. This again was an emotional moment. I think of them regularly.
"Full recovery can be a long process but at least the major, life-threatening condition was gone. My time following transplant has been a bit of a rollercoaster but my confidence in the SLTU in Edinburgh is unshakable and I remain extremely positive about my future.
"A few procedures after transplant are not uncommon and I have other ongoing issues relating to my condition that have been picked up quickly by the active monitoring programme in place.
"I attend the British Liver Trust support meetings. Initially face to face and via Zoom during the pandemic, these have been great in continuing my relationship with others with liver disease both pre- and post-transplant. I’m keen to promote liver health and welcome the British Liver Trust's initiative to ‘Sound The Alarm’ to promote early diagnosis.
"Throughout I have tried to be 'part of the solution and not part of the problem'. My time since transplant has been a bit of a rollercoaster but my confidence in the NHS is 100% and I remain positive my health will continue to improve in the future."