Millions of Australians have opted into the organ donor register, yet the transplant procedure very rarely happens.
Just 1 to 2 per cent of Australians who die in hospital can donate their organs. But only half of those actually do.
With more than 6.7 million people already registered to be donors, Organ and Tissue Authority CEO Lucinda Barry said we still need more.
“Generally those who are not registered do want to but haven’t got around to it yet, or are willing to donate but are unsure how to do it,” Ms Barry told The New Daily.
New data from DonateLife shows more than 60 per cent of people aged 18 to 25 want to be on the organ donor register, but only 8 per cent actually are.
As part of DonateLife Week, which starts on July 28, a donor family member, waitlisted patient and transplant recipient have shared with The New Daily the importance of registering.
‘It’s an anonymous gift to a stranger’
After heart surgery, Dale Armstrong went into a coma. He later suffered a stroke and died.
His wife Leanne Armstrong and three children managed to see the light in the darkness of their grief.
It was a small consolation but enough to make Ms Armstrong “feel just that little bit happy”.
“I just kept thinking of that phone call someone would be able to get to say there’s a bit more hope and a bit more time you can have with your family,” she said.
Mr Armstrong was an organ and tissue donor. Three lives were saved after his tragic passing in 2017.
“He would’ve been really pleased with that,” Ms Armstrong said.
For some 12 years, the former construction industry worker had been living with an autoimmune disease. He underwent gruelling rounds of chemotherapy, and was constantly in and out of remission.
Despite his chronic illness, Mr Armstrong remained on the donor register.
“He wasn’t aware of how much he could do but he was willing to do whatever he could,” Ms Armstrong said.
The Adelaide family are all registered donors.
“It’s an anonymous gift to a stranger,” Ms Armstrong said.
‘Waiting to gain my independence again’
Chloe Davies needed a third corneal transplant when her surgeon suggested an experimental procedure that had never been tried on anyone in the southern hemisphere.
The 28-year-old, who suffers from a progressive eye disease called Keratoconus, jumped at the idea to avoid being waitlisted.
She didn’t want a repeat of the nine months she endured before finally receiving the call notifying her that a new cornea – her second transplant – was ready.
“I was in physical pain during that time … my eye was constantly weeping, constantly red.
“Have you ever had an eyelash or a grain of sand in your eye? It was like that for me all the time.”
The experimental surgery failed to work and Ms Davies, from Victoria, now faces the prospect of being waitlisted again.
“I do dread the wait because you can’t really make solid plans as you don’t really know when you’re going to be called,” she said.
Ms Davies is eager to get her independence back.
“Driving is definitely the thing I miss the most,” she said.
“I almost wish I had never been able to drive because I wouldn’t have known how easy it is to have that accessibility to get yourself anywhere you want, when you want.
“Waiting for that is like waiting for me to gain my independence again.”
‘Everyone should be a donor’
At 18, Claire Yates had just 10 per cent kidney function.
Nothing frightened her more than the prospect of being tethered to a dialysis machine. Being waitlisted for years on end came a close second.
Ms Yates, 24, had no idea her kidneys were failing until a blood test revealed she needed a life-saving transplant.
Her parents were tested to see if either could be a donor. Luckily, both came back as a match.
The Brisbane resident ultimately received a kidney from her father.
“I don’t know how I would ever possibly repay him in any way. And I know he’s not looking for me to do that but it’s such an overwhelming feeling of gratefulness,” she said.
Ms Yates is a registered organ and tissue donor.
“Everyone should be a donor.
“You have the opportunity to save people’s lives.
“It takes less than five minutes to sign up and the amount of change you could have and the amount of impact you could make on one family is just incredible.”
Your family needs to know
Organ and Tissue Authority CEO Ms Barry said your family needs to know about your intention to be a donor as they will be asked to give the final consent.
Statistics from DonateLife show 71 per cent of Australians understand the importance of speaking with their family/partner about becoming a donor, but only 51 per cent have actually discussed it.
“Donation does not proceed if a family strongly objects,” Ms Barry said.
“This is why we stress the importance of registering. It leaves no doubt for your family that you want to be a donor, and nine in 10 families say yes to donation when their loved one is already registered.”