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18 September 2023
Words by Henrietta Cook, The Age. Images Justin McManus
Marianne Thrush had just weeks to live when she received an unexpected phone call.
It was a transplant nurse, urgently telling the then 32-year-old that an organ donor had been found.
“I was silent,” Marianne recalls. “Then I started shaking and crying.”
Marianne, who has a rare degenerative disease that means she has no muscles in her gut and experiences excruciating pain, had been on and off the organ donation wait list for more than 12 years.
On that morning in May 2022, Marianne drove to the Austin Hospital in Melbourne’s north-east with her mother Lorraine to meet a highly trained team of medical specialists.
They removed her failing organs and commenced a high-risk six-organ transplant, with a new stomach, duodenum, small bowel, pancreas, liver and colon stitched into her abdomen and connected to her arteries.
A young boy had recently died in hospital, and his grieving family consented to his organs being donated.
“Without that gift, I know, without a shadow of a doubt, I wouldn’t be here,” Marianne, now 33, says.
Over the past decade, Marianne has spent more time in hospital than at home, with one admission lasting four years.
Unable to absorb nutrients via her digestive system, she has been kept alive by bags of liquid food that have been pumped into veins above her heart. This constant intravenous feeding has led to numerous life-threatening blood infections.
Frequent vomiting had disintegrated her teeth, some of which have been replaced with veneers. She experiences constant toothaches but can’t afford to visit the dentist.
“I was too sick to keep going. I was planning my own funeral. I was going to give it one more month of fighting... three days after making that decision, I got the call.”
Only 36 per cent of Australians are registered organ donors.
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.
Victoria lags the national average and all other jurisdictions in registration rates, with just 23 per cent of Victorians signed up to be organ donors. This compares with 42 per cent of residents in NSW and 72 per cent in South Australia – the only jurisdiction where motorists can sign up for organ donation on their driver’s licence.
It’s a situation that puzzles Dr Rohit D’Costa, the medical director of DonateLife Victoria, which coordinates organ and tissue donation across the state.
D’Costa said that while Victoria had low registration rates, actual rates of organ donations in the state were high. There were 144 deceased organ donors in Victoria last year, compared with 122 in NSW and 39 in South Australia.
In its submission to a state parliamentary inquiry into increasing organ donor registrations, DonateLife Victoria called for motorists to be able to register as organ donors when applying for their licence – a process that was in place in Victoria until 2000, when the Australian Organ Donor Register was set up as the national register.
Marianne spent almost two weeks in intensive care following her 22-hour transplant surgery and another three months recovering in hospital. She describes this time as “the toughest period in her life”. At one stage, she lost almost seven litres of blood in one day.
The details of Marianne’s donor have to be kept confidential under organ and tissue donation laws. But Marianne and her donor’s family have exchanged de-identified letters, describing their pain and gratitude.
Marianne has framed the letter from the family, displaying it in her bedroom in Doreen, in Melbourne’s north-east.
“Their son gets to live through me now,” Marianne said, choking back tears. “He’s still alive and I think that is a pretty special thing.”
Her long-term doctor, Adam Testro, who is our director of liver and intestinal transplant medicine, said one of the biggest challenges was finding a donor who was about the same size as Marianne. She weighed just 40 kilograms at the time of surgery.
The donor also needed to have the same blood type as Marianne and to die in hospital, most likely on a ventilator so their organs were not starved of oxygen. Only two per cent of people who die in Australian hospitals every year are suitable for organ donation.
Testro is impressed with how Marianne has bounced back. He said that before the transplants, the young woman had “no quality of life”.
Marianne will need to take expensive immunosuppressant medication for the rest of her life, which increases her risk of kidney dysfunction and other health complications, and she continues to experience some nausea and pain.
“It’s certainly not a normal life but it’s a heck of a lot better than what she had two years ago,” Testro said. “She’s incredibly resilient.”
As time goes on, the risk of organ rejection decreases. Testro said that the first year post-transplant is the most perilous, and Marianne has clearly surpassed this.
“If you make it through the first year, your outlook of getting to five years is pretty good,” Testro said. “If you get to five years, your outlook of getting to 10 or 20 years is excellent. Most of the complications happen quite early.”
Marianne has disconnected her intravenous feeding equipment and is receiving all her nutrients from food that she swallows and digests herself. She has finished a real estate qualification and is now working part-time at Morrison Kleeman, an agent in Melbourne’s north-east.
“Many companies would have probably never employed me because I hadn’t worked in over 15 years and I had just had six organs transplanted,” she said. “But they gave me a chance.”
She dreams of working full-time, having her own home and starting a family.
“Just because you have gone through so much of your life being sick doesn’t mean that you can’t overcome it,” she said. “I went from dying to working, having friends and living life to its fullest.”
Chris Thomas, chief executive of Transplant Australia, said that as well as registering as organ donors, people need to communicate their wishes to their family because families must still consent to the transplants when the time comes.
Around 80 per cent of families consent to their loved ones donating their organs if they are registered, compared with 40 per cent of families whose loved ones aren’t registered.
But Thomas is concerned about a 10 per cent rise in families overriding the decision of loved ones who are registered. He suspects this may be due to the pandemic eroding some people’s trust in authority. “People are questioning things a lot more,” he said.
A Victorian government spokesman said it was always looking at ways to improve the state’s donation rates and that all Victorians should consider registering.
Marianne is also urging people to sign up and discuss organ donation with their families. She said she will always feel indebted to her donor family.
“I want them to see the life I’m creating,” she said. “I want them to know that the gift their son has given me has not gone to waste.”