Artist Heather Aspinall, of Ainslie, spent more than a year on the waiting list for a liver transplant.

Every week she would go to hospital to get fluid drained from her abdomen. 

“It just was this long, ongoing process of me getting sicker and sicker and sicker,” she says.

A transplant was the only treatment available for Alpha 1 anti-trypsin deficiency, a rare genetic condition she had been diagnosed with in 2018.

Then earlier this year the call came. A donor was available. She and her full-time carer, husband Steve Roberts, say the moment was wonderful, but bittersweet.

“You’re elated, but you’re also kind of scared. It’s a huge mix of emotions,” she says.

Heather, 54, who has gone from being in a wheelchair to living an active life again, says she is extremely grateful to have received a second chance.

“Donors and donor families are the real heroes,” she says.

“And it’s really easy to be a hero, because all you have to do is register.”

Heather, who was a registered donor for years before becoming a recipient, says while the conversation with family and loved ones is difficult, it is extremely important.

She says: “I went and did an advance care directive, and that was actually an amazing process… to think about what it is you actually really want to have happen to you if you’re no longer able to make decisions for yourself. 

“I think these are really good conversations to have. I think they’re very positive, actually.”

Heather encourages more Canberrans to register, as the ACT is lagging behind the national average, a sentiment supported by the medical director of DonateLife Canberra, Dr Sean Chan 

The ACT urgently needs more organ and tissue donors, despite an extra 3955 people registered last year as donors, and 28 people received organ transplants, which was a three per cent increase, says DonateLife. 

But, the AODR data shows only eight people in the ACT became organ donors when they died, which was a fall of 20 per cent.

Dr Chan, who is also an intensive care specialist and trauma specialist, says: “Death is inevitable for all of us at some stage, and it’s a very rare few who have the opportunity to be an organ donor. 

“It’s around about two per cent of people who die, […] in very specific controlled circumstances, who can even have the opportunity to be considered for organ donation. 

“We’ve got a very small pool amongst potential donors to work from, so if there’s opportunities for you to save up to seven lives, well, I think that’s worth exploring.”

But, Dr Chan says the family will always have the final say, which is why having open discussions about being on the AODR is so important.

Dr Chan says: “The statistics tell us that if you were indicating that you wanted to be a donor on the registry, and you’d spoken to your family about it, they’re far more likely to honour your wishes.” 

“If they’re left to try and guess, when they’re under distress, that likelihood of consent goes down significantly.”

As such, Dr Chan says DonateLife Week, which runs until August 4, is the perfect time to register, or seek out more information about what being a donor means to recipients.

There are around 1800 Australians on the organ waitlist and 14,000 more on dialysis for kidney failure who need help. More than 50 Australians died last year while on the organ transplant waitlist. 

DonateLife says: “We know that four in five Australians say they support donation, but only 36 per cent are registered (27 per cent in ACT). If an extra three million Australians registered, around 90-100 more people would receive a life-saving organ transplant every year.”

Registering as an organ donor can be done within minutes, on the Express Plus Medicare App, or on the DonateLife website.

Dr Chan says: “Over the years, we’re getting better at organ retrieval, as well as transplantation, and that means more people who may not have thought that they could be donors, actually have the opportunity to become a donor.

“For example, just being a smoker doesn’t mean you can’t be a donor.

“People who were too old, or thought they were too old to be donors before, are becoming donors these days. 

“We want to make sure that no one excludes themselves before we’ve had a chance to make that assessment and speak to their families.”

Visit donatelife.gov.au for more information on how to register.