{"id":68553,"date":"2023-11-05T03:19:06","date_gmt":"2023-11-05T03:19:06","guid":{"rendered":"https:\/\/rapidcelnews.com\/?p=68553"},"modified":"2023-11-05T03:19:06","modified_gmt":"2023-11-05T03:19:06","slug":"they-didnt-match-for-a-transplant-a-new-drug-allowed-ondie-to-give-rob-her-kidney","status":"publish","type":"post","link":"https:\/\/rapidcelnews.com\/lifestyle\/they-didnt-match-for-a-transplant-a-new-drug-allowed-ondie-to-give-rob-her-kidney\/","title":{"rendered":"They didn\u2019t match for a transplant. A new drug allowed Ondie to give Rob her kidney"},"content":{"rendered":"

By <\/span>Melissa Cunningham<\/span><\/span><\/span><\/p>\n

Save articles for later<\/h3>\n

Add articles to your saved list and come back to them any time.<\/p>\n

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.<\/p>\n

\u201cI said, well, of course, take one of mine,\u201d Ondie, 60, said.<\/p>\n

But they weren\u2019t a match. For five years, Rob was dying a slow death. The 64-year-old from Doncaster, in Melbourne\u2019s east, was kept alive through dialysis three times a week while he waited for an organ donor.<\/p>\n

<\/p>\n

Rob Goold and wife Ondie in the recovery stage at home.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

The wait was seemingly without an end.<\/p>\n

Rob is one of hundreds of Australians seriously ill with kidney failure who, due to elevated levels of antibodies, are deemed \u201chighly sensitised\u201d. This means their immune systems will reject almost any transplanted organ.<\/p>\n

Transplanting one of Ondie\u2019s kidneys into Rob was thought to be impossible, until a team at Melbourne\u2019s Austin Hospital obtained a new drug called Imlifidase through a global access scheme.<\/p>\n

The Goolds made medical history in late August as the first people in Australia to benefit from the revolutionary immune modification technique.<\/p>\n

Without it, the kidney would have died soon after being transplanted.<\/p>\n

Austin Health\u2019s kidney transplant service\u2019s medical director, Associate Professor John Whitlam, said it was a milestone in transplantation in Australia.<\/p>\n

<\/p>\n

Rob and Ondie moments before their Australia-first kidney transplant surgery.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

\u201cWe had effectively the immunological equivalent of the Berlin Wall,\u201d Whitlam said. \u201cFor the first time in Australian history, we were able to knock that wall down and walk through to the other side.\u201d<\/p>\n

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.<\/p>\n

Whitlam said our immune system uses antibodies like heat-seeking missiles to target and destroy proteins foreign to the body.<\/p>\n

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.<\/p>\n

\u201cSince the dawn of transplantation, the body\u2019s natural defence against HLA proteins has remained our greatest challenge,\u201d he said. \u201cThis therapy marks a monumental leap in overcoming that barrier. What was once thought impossible is now within reach.\u201d<\/p>\n

<\/p>\n

An emotional Rob hugs Ondie as it became clear the new drug Imlifidase had worked.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

In Rob\u2019s 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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cIt will be an enabler for people in this horrific situation where they\u2019re basically trapped on dialysis to sustain their life, but simultaneously, has a substantially reduced life expectancy and quality of life compared to transplantation,\u201d Whitlam said.<\/p>\n

When a transplant patient\u2019s antibodies return days later, they will be given a cocktail of post-transplant immunosuppressive therapies to help prevent their body from rejecting the organ.<\/p>\n

<\/p>\n

A team of specialists during Rob\u2019s kidney transplant.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n\n

On the day of the transplant,<\/b> Rob was lying on a hospital bed at the Austin Hospital in Melbourne\u2019s north-east with Ondie by his side when Whitlam came into the ward to tell them the Imlifidase had worked.<\/p>\n

\u201cWhat a moment,\u201d an emotional Rob said as he embraced Ondie who broke down in tears of relief. \u201cFive years in the making.\u201d<\/p>\n

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

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.<\/p>\n

\u201cThe whole process was a bit like NASA preparing for a space shuttle,\u201d Rob said.<\/p>\n

\u201cWhat was once thought impossible is now within reach.\u201d<\/p>\n

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.<\/p>\n

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\u2019s hollowed out abdomen.<\/p>\n

<\/p>\n

Rob lying in theatre surrounded by a team of specialists. <\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

They connected the kidney to his blood vessels during a surgery spanning almost six hours. Rob\u2019s new kidney flushed pink with blood as it began to pulse with life.<\/p>\n

His was the first transplant performed in Australia using Imlifidase. There have been only seven other such living donor transplant cases around the world.<\/p>\n

<\/p>\n

Ondie\u2019s kidney waiting to be transplanted into Rob\u2019s body.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

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.<\/p>\n

\u201cIt is a prognosis that\u2019s worse than many cancers,\u201d the nephrologist said.<\/p>\n

When meeting Rob and Ondie, the deep affection between them is obvious. Theirs is the kind of love you might imagine between soulmates.<\/p>\n

\u201cI just feel better when she is close,\u201d Rob said. \u201cIt sounds silly, but whenever she goes out somewhere, I miss her.\u201d<\/p>\n

<\/p>\n

Associate Professor John Whitlam tells the Goolds that the Imlifidase worked.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

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.<\/p>\n

The walls of Rob and Ondie\u2019s home are filled with pictures of overseas holidays taken together and with friends.<\/p>\n

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\u2019s King Street.<\/p>\n

\u201cWe saw each other and we were so excited. We exchanged phone numbers,\u201d Ondie said.<\/p>\n

<\/p>\n

Rob and Ondie Goold.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

\u201cIt 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.\u201d<\/p>\n

For more than 20 years they have worked together as gardeners.<\/p>\n

The landmark kidney transplant was not without risks. There was the possibility that Rob\u2019s body would reject Ondie\u2019s kidney, or that the Imlifidase might not work.<\/p>\n

\u201cWe were the bold people to make the first crack at it,\u201d Whitlam said. \u201cBut we mustn\u2019t underestimate Rob and Ondie\u2019s bravery in undertaking this. Rob has become a beacon of hope for so many people.\u201d<\/p>\n

As Christians, faith in God \u2013 and in the abilities of the medical team at the Austin \u2013 cemented the belief that \u201call the planets would align\u201d, Rob said.<\/p>\n

<\/p>\n

Rob\u2019s surgery lasted almost six hours.<\/span>Credit: <\/span>Eddie Jim<\/cite><\/p>\n

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.<\/p>\n

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.<\/p>\n

Rob said he and Ondie wanted to share their story to raise awareness about the importance of organ donation.<\/p>\n

\u201cWhen people see the other side, I hope it will change their mind to become organ donors,\u201d he said. \u201cI\u2019m just so grateful to be given a second chance at life.\u201d<\/p>\n

<\/p>\n

At home about a week before the kidney transplant.<\/span>Credit: <\/span>Justin McManus<\/cite><\/p>\n

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\u2019s motherland, Hungary.<\/p>\n

They will sail into Budapest at night when the golden lights of the Hungarian parliament building are reflected in the Danube River.<\/p>\n

\u201cThat will be our moment,\u201d Ondie said.<\/p>\n

Get the day\u2019s breaking news, entertainment ideas and a long read to enjoy. Sign up to receive our Evening Edition newsletter.<\/strong><\/em><\/p>\n

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