Heather Aspinall, a 56-year-old artist from Canberra, was given a new chance at life after a successful liver transplant.
Ms Aspinall was diagnosed with Alpha-1 antitrypsin deficiency, a rare genetic condition that usually affects the lungs and liver.
She first noticed symptoms of breathlessness while overseas on holiday.
It worsened as fluid filled her abdominal cavity, putting pressure on her lungs, and swelling her lower abdomen.
It got so bad she said she looked like she was pregnant with twins and putting on 10kg a week.
Her centre of gravity changed, leading to falls, and the breathlessness increased to the point of needing a wheelchair.
Her husband retired from his job as a mathematics professor at Australian National University to look after her full-time as she was unable to even push the wheelchair herself.
Weekly draining of fluid in her abdomen was the only treatment, and only a liver transplant would cure her.
When she finally got the call she would receive a new organ after a year of waiting, she said she burst into tears.
Due to the risk of the surgery she frantically called her son for a pre-emptive goodbye.
"I got his voicemail, like weeping into his voice. 'I love you so much, don't forget that I love you and I will always love you to always be proud of you'. It was full-on," she said.
The surgery took hours and six months to recover, but she's now enjoying life as much as possible.
"It's good to be alive. And [I'm] very grateful, very grateful for the donor and their family and ... the generous gift that they've given me," she said.
She is walking 3km daily and is working up to being able to ice skate and dance again. Stories like Ms Aspinall's are why DonateLife chief executive Lucinda Barry stressed the importance of signing up to be a donor and having conversations with family about wanting to donate. There are currently around 1800 people on the national wait list, and another 14,000 currently on dialysis with kidney failure who would also benefit from a transplant, she said.
Only 36 per cent of Australians have registered to be donors. But the ACT has a significantly higher consent rate at 59 per cent.
"But we know about 80 per cent of Australians support organ and tissue donation in all of our survey," Ms Barry said.
Last year 513 people donated their organs. Ms Barry said everyone makes a good candidate for donation.
Donating an organ only happens under particular circumstances, where the donor dies in hospital and the organs can be assessed for suitability. And being older, smokers, or not doing exercise meaning people could not donate were myths, she said. Their oldest donor was 87.
"There is [almost] nothing that rules you out. Leave it up to the medical staff at the time if you're in the situation to become a donor," she said.
The other reason why donations don't happen is families do not know the wishes of the person dying.
"Eight in 10 families say yes to donation in the hospital if you're registered. That halves to four in 10 if they don't know what you wanted," Ms Barry said.
"It can be a hard conversation, but it's a harder decision for your family."
She said the family's wishes were always respected either way.
All major religions support organ donation and see it as an act of compassion and generosity.
"Organ donation is life-changing ... take one minute of your time to go and register and another minute to talk to your family," Ms Barry said.
