Dan Tetley was stunned to learn his liver had nearly shut down when he went for a routine blood test four years ago.
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At the time he felt able to "run a marathon" and had no symptoms, leaving doctors just as surprised when he was rushed to hospital.
Diagnosed with a rare auto immune disease called Primary Sclerosing Cholangitis (PSC), now Dan's only hope of getting better is through a successful liver transplant.
"When I had the first ultrasound on my tummy, the young trainee looked at me with her eyes popping out of her head, and I thought 'this can't be good'," Dan said.
In the four years since his diagnosis, particularly in the past few months, the 41-year-old's life has been consumed by hospital visits and medical tests.
"Initially I was referred to a liver specialist in Canberra and put on liver treatment tablets," Dan said.
However, describing the tablets as only a "band-aid", after a couple of years Dan and his partner Alethea thought something wasn't right.
On his first visit to a specialist in Sydney, Dan was diagnosed with Crohn's disease in conjunction with PSC, in what doctors described as an "extremely rare" combination of diseases.
"My family knew when I was a baby there was something not right but all the way through, all 40 years, no one picked up on it," Dan said.
Dan was referred to another liver specialist in Sydney when his health took a turn for the worse and rapidly deteriorated in a matter of weeks. He was told nothing more could be done besides a transplant.
"My liver is at stage four, there is no stage five," Dan said.
With doctors unable to guarantee how long Dan can live with his current liver, giving him as little as two months up to 10 years, he now faces a difficult path ahead.
One in 10 liver transplant patients die within the first 12 months of receiving a new liver and the addition of Crohn's disease makes Dan's situation extra precarious.
However, determined to remain hopeful despite the deterioration of his health, Dan has found ways to find humour among adversity.
Due to his liver failing, Dan is currently jaundice, meaning his skin and eyes have turned yellow.
"The kids thought it was comical and sang the Caramello Koala song and bought a bag and put them all around the house," Dan said.
"That's what I want, I don't want people going 'oh you're crook', they can take the piss out of me I don't care, I just want positivity and fun."
Though, Dan said being diagnosed with a liver disease did come with negative connotations of alcoholism.
"I'll admit from 14 onwards I was rogue, I was a heavy drinker and I feel that I get judged for that," he said.
"But I've actually had the surgeon say to me I could've drunk another 20,000 litres of alcohol and it wouldn't change a thing."
While PSC is a liver disease, studies have shown it is not caused by alcohol.
Dan had to stop work as a plant operator for Goulburn Mulwaree Council two months ago due to his swollen feet, brain fog and spontaneous vomiting, although he sets himself small goals each day.
"Sometimes I forget that I'm crooker than I think I am," he said.
"I like to work but [PSC] has taken that away from me."
Dan said his doctors had recommended he remain in hospital for monitoring, but said he wanted nothing more than to stay at home with his family for as long as he could.
"I couldn't lie in bed all day and do nothing," he said.
Despite his positivity, the physical and financial strains of Dan's diseases are adding up.
Dan's two months off work combined with the costs of trips to Sydney to undergo expensive tests including frequent MRIs and CT scans, prompted Dan's step-daughter to start a GoFundMe and reach out to the community.
Not people to ask for favours, Alethea said until now the couple had "persevered" and tried to get through on their own.
"It has taken its toll, we've got three kids at home and work on top of that," she said.
Dan is now officially on the waiting list for a new liver and needs to be in Sydney every second day to undergo tests to ensure he is a suitable transplant candidate.
"I think people didn't really get the seriousness of it until now," Alethea said.
If Dan's liver is removed, he has given the go ahead for scientists to use it for study, given the rarity and rapid progression of his disease.
"I hope that study can help a kid going through the same thing one day," Dan said.
To help support Dan and his family you can donate to their GoFundMe at https://www.gofundme.com/f/dans-liver-transplant.
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