06 November 2023

Words by Melissa Cunningham, The Age. Images by Eddie Jim

When Rob Goold ended up with kidney failure after being put on life support following routine heart surgery, his wife did not hesitate to offer up one of her own kidneys.

“I said, well, of course, take one of mine,” Ondie, 60, said.

But they weren’t a match. For five years, Rob was dying a slow death. The 64-year-old from Doncaster, in Melbourne’s east, was kept alive through dialysis three times a week while he waited for an organ donor.

The wait was seemingly without an end.

Rob is one of hundreds of Australians seriously ill with kidney failure who, due to elevated levels of antibodies, are deemed “highly sensitised”. This means their immune systems will reject almost any transplanted organ.

Transplanting one of Ondie’s kidneys into Rob was thought to be impossible, until a team at Melbourne’s Austin Hospital obtained a new drug called Imlifidase through a global access scheme.

The Goolds made medical history in late August as the first people in Australia to benefit from the revolutionary immune modification technique.

Without it, the kidney would have died soon after being transplanted.

Austin Health’s kidney transplant service’s medical director, Associate Professor John Whitlam, said it was a milestone in transplantation in Australia.

“We had effectively the immunological equivalent of the Berlin Wall,” Whitlam said. “For the first time in Australian history, we were able to knock that wall down and walk through to the other side.”

About one in five Australians on the organ donor waiting list are deemed highly sensitised. This means they have developed antibodies against more than 95 per cent of organ donors.

Whitlam said our immune system uses antibodies like heat-seeking missiles to target and destroy proteins foreign to the body.

When the body encounters proteins called human leukocyte antigens (HLA) during medical procedures such as blood transfusions, organ transplants or even pregnancy, the immune system responds by generating antibodies.

“Since the dawn of transplantation, the body’s natural defence against HLA proteins has remained our greatest challenge,” he said. “This therapy marks a monumental leap in overcoming that barrier. What was once thought impossible is now within reach.”

In Rob’s case, his elevated antibodies followed a brush with death after cardiac surgery that left him in intensive care for weeks and required several blood transfusions.

Imlifidase, an antibody-cleaving enzyme developed by Swedish company Hansa Biopharma, has been described as a game changer by global organ transplant pioneers. When given to a patient a few hours before their kidney transplant, it works by temporarily wiping out all their antibodies, allowing a crucial window of time for a transplant to take place.

While the drug is not a silver bullet, Whitlam said he hoped it marked the start of a new golden era in kidney transplantation for high-risk immunological cases.

“It will be an enabler for people in this horrific situation where they’re basically trapped on dialysis to sustain their life, but simultaneously, has a substantially reduced life expectancy and quality of life compared to transplantation,” Whitlam said.

When a transplant patient’s antibodies return days later, they will be given a cocktail of post-transplant immunosuppressive therapies to help prevent their body from rejecting the organ.

On the day of the transplant, Rob was lying on a hospital bed at the Austin Hospital in Melbourne’s north-east with Ondie by his side when Whitlam came into the ward to tell them the Imlifidase had worked.

“What a moment,” an emotional Rob said as he embraced Ondie who broke down in tears of relief. “Five years in the making.”

Hours earlier, at midnight, Rob had been admitted to the hospital, where he was given a 15-minute infusion of Imlifidase.

At 2am and 4am, samples of his blood were taken and transported to the Victorian Transplantation and Immunogenetics Service in West Melbourne. His specimens were analysed and tested by a team of scientists inside a lab.

“The whole process was a bit like NASA preparing for a space shuttle,” Rob said.

By 10.30am, Ondie was wheeled off to a surgical theatre to have a kidney taken out. After being extracted from her body, her kidney was cleaned and placed in a bowl of ice.

The kidney was taken to a surgical theatre nearby where a team of medical specialists, including four surgeons, were waiting to implant it into Rob’s hollowed out abdomen.

They connected the kidney to his blood vessels during a surgery spanning almost six hours. Rob’s new kidney flushed pink with blood as it began to pulse with life.

His was the first transplant performed in Australia using Imlifidase. There have been only seven other such living donor transplant cases around the world.

Whitlam said about one in 10 Australians has chronic kidney disease and despite advancements such as dialysis, their prognosis and quality of life remains poor. Around half of older people on dialysis will die within five years.

“It is a prognosis that’s worse than many cancers,” the nephrologist said.

When meeting Rob and Ondie, the deep affection between them is obvious. Theirs is the kind of love you might imagine between soulmates.

“I just feel better when she is close,” Rob said. “It sounds silly, but whenever she goes out somewhere, I miss her.”

Ondie said she agonises every decision she makes, taking months to carefully plan their trips overseas, and two years to choose a new car. But when it came to giving Rob a kidney, there was no question in her mind. She even offered to donate one to anyone who was a match for Rob in an organ exchange.

The walls of Rob and Ondie’s home are filled with pictures of overseas holidays taken together and with friends.

The two have been friends since their teens, and married for more than 30 years. Years after finishing school they found each other again near the crowded, sticky dance floor at the now defunct Underground nightclub in Melbourne’s King Street.

“We saw each other and we were so excited. We exchanged phone numbers,” Ondie said.

“It was like full circle when we saw each other because we had experienced a lot of life. We both had relationships and travelled the world. We had led a bit of a wild life. But from that night we were basically inseparable.”

For more than 20 years they have worked together as gardeners.

The landmark kidney transplant was not without risks. There was the possibility that Rob’s body would reject Ondie’s kidney, or that the Imlifidase might not work.

“We were the bold people to make the first crack at it,” Whitlam said. “But we mustn’t underestimate Rob and Ondie’s bravery in undertaking this. Rob has become a beacon of hope for so many people.”

As Christians, faith in God – and in the abilities of the medical team at the Austin – cemented the belief that “all the planets would align”, Rob said.

The number of Australians suffering from chronic kidney disease has risen markedly in recent years, driven by high rates of hypertension and diabetes. So too has the number of people with end-stage renal disease, which can be treated only with dialysis or a transplant.

There are currently 1800 Australians waiting for a transplant, and in the past six years, 242 Australians have died while waiting for an organ, according to Australia and New Zealand Dialysis and Transplant Registry data.

Rob said he and Ondie wanted to share their story to raise awareness about the importance of organ donation.

“When people see the other side, I hope it will change their mind to become organ donors,” he said. “I’m just so grateful to be given a second chance at life.”

When Rob marks one year post-transplant, the couple plan to travel to New York before flying to Europe and taking a cruise from Amsterdam to Ondie’s motherland, Hungary.

They will sail into Budapest at night when the golden lights of the Hungarian parliament building are reflected in the Danube River.

“That will be our moment,” Ondie said.