Last year a record number of Australians gave their kidneys to strangers
Belinda Newick discovered she’d inherited kidney disease in her teens, but hoped she wouldn’t need a transplant. (ABC News: Danielle Bonica)
Belinda Newick always hoped she would defy the odds and avoid a kidney transplant.
But at 48, the jewellery artist and mother-of-two was on the brink of renal failure.
“I had so much fatigue and a lot of pain, I was getting quite breathless … and just being on the couch at 5pm at night and struggling to get up and make dinner for my family … [I couldn’t] eat and digest food very well,” she said.
Polycystic kidney disease runs in her family.
“My mum passed away at 62. Her father died when he was 40 years old and his father when he was 32, all from kidney disease,” she said.
Ms Newick and two of her siblings inherited the condition and last year it became clear her symptoms were becoming life-threatening.
“You can look like you’re fine but your renal function can be so close to total failure. It really is a silent disease,” she said.
Having watched her mother struggle through 15 years of dialysis, Ms Newick was deeply reluctant to go down the same path.
“I was really upset because I’d already seen my mum’s trajectory of the disease and she’d nearly died a couple of times by the time I was 16,” she said.
Time was running out and she needed a new kidney.
‘It seemed like an absolute no-brainer’
Kidney failure is the most common form of organ failure in Australia.
About 14,000 people are on dialysis — and many of them are waiting for a kidney.
Most kidney transplants come from deceased donors. The rest are from live donors, usually a friend or family member who is willing to give one of theirs.
Ms Newick’s husband, Nico Kelly, desperately wanted to donate one of his kidneys to her.
“That was the hope, that all of my statistics and blood type and antibodies would be a direct, suitable match,” he said.
But testing revealed he wasn’t a close enough match.
The couple turned to the Australian and New Zealand Paired Kidney Exchange, which is run by the Royal Melbourne Hospital, hoping to find a compatible kidney.
The program allows friends and family who want to donate a kidney to a loved one but aren’t a good medical match, to be paired with others in the same situation.
The exchange also accepts donations from altruistic donors.
The Australian program joined forces with New Zealand in 2019 but was almost immediately hit by COVID border closures.
However, in 2023 it had its best year yet with a record-breaking 80 donors — 55 Australians and 25 New Zealanders.
That’s about a fifth of all living kidney donations in Australia last year.
“Once the borders opened again, we could start matching between the two countries … and really show the power of having a bigger program,” program director Peter Hughes said.
After months of waiting, Ms Newick and Mr Kelly got a call that would change their lives; the exchange’s algorithm had found a strong match.
The couple had an hour to agree to give one of Mr Kelly’s kidneys to a stranger to secure a kidney for Ms Newick.
“It was a shock … it really was one of those tipping-point kind of moments in life,” Ms Newick said.
“I’m quite emotional when I think about it … it just seemed like an absolute no-brainer,” he said.
Australians offering a kidney despite knowing no-one who needs one
Helen Opdam, an intensive care specialist and medical director of the Organ and Tissue Authority, has put decades of work into making sure every potential donor is identified.
“Of the 1,800 people on the waiting list for an organ transplant, the vast majority are waiting for a kidney transplant,” Associate Professor Opdam said.
“Ideally you have both a good deceased donation program and deliver a living donation program that will help as many people get access to transplantation as possible.”
While donations from people who have died in hospitals make up the vast majority of kidney transplants in Australia, the paired exchange joining forces with New Zealand has not only boosted numbers of kidney donors, but also increased the focus on live donations.
“New Zealand has put a lot of energy into this area and the number of living donors — people who donate kidneys, relative to their population — is nearly twice as high as in Australia,” Associate Professor Opdam said.
But this isn’t the only reason the paired exchange program is now breaking records.
While the kidney exchange program is mostly made up of direct swaps between pairs, more and more altruistic donors are also signing up, volunteering to give a kidney to anyone who needs one.
“They don’t have anyone in particular to donate to, and so these donors now commonly donate to someone in the program and that can set off a chain or a cascade,” Associate Professor Hughes said.
A chain started by an altruistic donor is expected to reach 20 this year, the longest in Australian history.
Last year, 11 altruistic donors set off transplant chains that accounted for about 80 per cent of the paired exchange transplants.
‘I will never know who my kidney went to’
Melbourne man Stephen Liston, 56, was one of those altruistic donors.
Growing up with a seriously unwell sister, Mr Liston said he’d been thinking about organ donation since he heard a radio story decades ago.
It wasn’t until his children became adults and he began to lose his eyesight that he went to his local GP to ask if it was something he could do.
“It’s easy to lose a sense of worth if you can no longer drive and you become dependent on other people, and so you start actively looking for, well, what can I do that’s going to make me feel good about myself?” he said.
The Melbourne man had to lose 10 kilograms and undergo almost two years of medical and psychological testing before he was approved to donate.
Mr Liston said immediately after his surgery he thought, “My God, what have I done?”, but the feeling only lasted a couple of minutes.
Six weeks after his surgery he felt fully recovered, though like all kidney donors his health will now be closely monitored for the rest of his life.
Because the paired kidney program is strictly anonymous, neither Mr Kelly nor Mr Liston knows where their kidneys went.
They can write a letter of thanks, but it’ll be sent without their name and Mr Liston has been told his donated kidney started a chain more than 10 people long.
“I will never know who my kidney went to and that actually gives me a buzz because it could be anyone,” he said.
What is known is that people who received a kidney from a living donor generally have better outcomes than people who have to wait for a deceased donor.
It also means they avoid the deceased donor waitlist, which is years long.
And there are medical benefits.
“It’s a smoother course around the time of the operation [and] overall, living donor transplants tend to do a bit better in the long term and … people can have a transplant sometimes before they start dialysis or just after they’ve started dialysis, rather than waiting on the waiting list, potentially for years,” Associate Professor Hughes said.
‘There was a bit of trepidation for all of us’
When all the matching is done and all the logistics are lined up, the real business of transplants begins.
Where possible all surgeries happen on the same day to avoid anyone missing out in case someone becomes seriously ill or gets cold feet.
They won’t always be in the same hospital and kidneys are often put into eskies and flown interstate and to and from New Zealand.
For Ms Newick and Mr Kelly, the one big downside of going in as a pair was that they had to leave their two worried teenagers at home while they both underwent surgery.
“I was very scared, there was a fair bit of trepidation for all of us … the children were really, really concerned for both of us,” Ms Newick said.
Luckily they had unique support — Ms Newick’s brother had received a transplant from a kidney donated by his wife more than 10 years ago. He and his wife travelled from interstate to help look after the family.
Mr Kelly had his surgery first and the surgeon was able to tell Ms Newick it had gone well before she went in for hers.
Mr Kelly said he could see the difference in his wife immediately.
“It was just such a special moment seeing her get wheeled in, you know all that anxiety of surgery for someone that you love … it’s always risky.
“Just seeing that immediate recovery is just remarkable.”
Ms Newick’s kidney function went from around 5 per cent before the surgery to nearly 70 per cent within days.
She has a lifetime of medications to help keep that kidney functioning well in her body but her recovery is plain to see.
And part of her glow is not just good health, it’s gratitude.
“I feel fantastic … I’m so grateful for the gift of this organ, it’s such a fantastic thing,” she said.