“It’s an easy way to be a superhero”: why you should have a conversation about organ donation this DonateLife Week
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Saving a life doesn’t always take a big, heroic act – sometimes it’s as easy as clicking ‘register’.
In Australia, thousands of lives have been touched by organ and tissue donation – from the recipients to the donors – and this DonateLife Week (running Sunday 28 July until Sunday 4 August), DonateLife is calling for even more people to register.
Currently, around 1,800 Australians are on the waitlist for an organ transplant, and around 14,000 additional people are on dialysis (many of whom would benefit from a kidney transplant), but only two per cent of registered Australians die in a way that makes it possible for them to donate their organs.
That’s why DonateLife ACT Agency Manager Nadia Burkolter says every potential donor is precious.
“In the ACT, we know that people are really supportive. We know that they’re health literate and yet our registration rates are well below the national average,” she explains.
“We’re at 27 per cent of eligible Canberran’s – people aged 16 and over. That’s well below other jurisdictions and the national average of 36 per cent.”
Suggesting that people are supportive of organ donation but unaware that they need to register or that they believe they aren’t ‘healthy’ enough to donate – a common misconception – Nadia says that receiving a donation is a rare opportunity for the thousands on the waitlist.
That’s something Canberra local Heather Aspinall knows all too well.
After being diagnosed with Alpha-1 antitrypsin deficiency in 2018, Heather was the lucky recipient of a liver in January 2023 – and it saved her life.
Heather in the ICU.
Receiving the shock diagnosis after becoming incredibly ill on an overseas holiday, she says it “took her a while” to register that she would need a transplant in the future. But the damage was done, and Heather and her husband moved to Adelaide in 2021 to be close to the organ transplant unit at Flinders Medical Centre for when the day would come.
“There’s no transplant unit in Canberra, so we moved to Adelaide in the middle of 2021. It was when the borders were in lockdown, so we had to do all of this special medical stuff to get me across,” she says.
“My husband retired so he could look after me, and we were full-time medical patients because it would take up all our time. Every week I had to have the fluid drained out of my abdomen, I’d be having blood tests, or I’d be having scans…I was very sick. In that last year I was dying,”
But then in early January 2023, Heather received that rare phone call.
“We were sitting there saying, ‘Oh, well, I guess we’ll have to wait another year and see what happens.’ My phone rang and Steve, my husband, joked ‘That’ll be the call’. I just laughed at him, and then I answered the phone, and it was one of the lovely transplant coordinators,” says Heather.
“She said, ‘Well, this is the call’. And I burst into tears…It was very surreal.”
18 months later Heather is back in Canberra, enjoying her new life with her new liver. Incredibly grateful to the donor and their family, she wants people thinking about registering to know that their good deed – should it ever be needed – will never go unthanked.
“Our thoughts are always with the donor’s family. They’re the unsung hero because they have to make that really difficult decision,” she says.
“It can make a difference to so many people’s lives. One donor can donate up to seven tissues. I say they’re superheroes because they can improve the quality of life for so many people… It’s an extraordinary gift.”
Heather and her husband celebrating life.
It only takes one minute to register or three taps in the Medicare app – but Nadia says the most important thing for potential donors to do is to talk with their family because in the end, they will be the ones giving consent and providing vital health information.
“I think talking about death and dying can still be a taboo topic at times and people don’t want to upset their family, but from my perspective – as someone who has had the privilege of being involved with so many donor families – if those conversations are had, they help,” says Nadia.
“It’s a kindness to have those conversations before it’s too late.”
As for those on the waitlist? With many Australia’s tragically dying waiting for a transplant that doesn’t come, Heather has some words of wisdom:
“It’s such a long grind and you don’t know when it’s going to end. Keep your hopes up because that’s what you can do. Stay hopeful.”
For more information on organ donation or to register, visit donatelife.gov.au
