“It’s pretty much the biggest transplant that any one person could undergo, but it’s the only long-term chance I have at being able to survive,” the 30-year-old Doreen woman said.
At just 48 kilograms, Marianne is waif-like and tiny in stature. Her stomach is swollen and dotted with scars from years of operations. She is in chronic pain, often bedridden, vomits daily and she suffers frequent seizures. A long, flexible plastic tube is connected to her heart administering total parenteral nutrition, a treatment that injects nutrients directly into her blood.
“It isn’t really a life, I am just existing,” Marianne said. “There have been many times where I have prayed and said ‘Look God, I can’t fight. I don’t want to fight anymore’. I have pleaded that my life be taken. But I must be here for one reason or another.”
If a donor is found, Marianne will be among the first people in Australia to undergo a high-risk six organ transplant. There have only been about seven variations of the multi-organ transplant in Australia to date, all of which have been undertaken at the Austin Hospital. Most patients received about four or five organs in a single operation.
One of Marianne’s close friends underwent a five organ transplant more than three years ago. He died late last year, following kidney failure.
“It was incredibly difficult to watch him deteriorate,” Marianne said. “I know it’s a long, hard road ahead. I am not cured, it’s just a different set of challenges ahead in the hope that it will allow me to have a better quality of life.”
For Marianne’s transplant to succeed, the organs must come from a single, dead donor. A perfect donor would be the same size or smaller than Marianne, likely a child, around the age of 10.
The circumstances of the donor’s death are critical; they must die in intensive care at time when all their organs are functioning well. This rules out those who have died following an illness that is likely to have damaged their organs, or those who have been killed in car accidents, because they often die before arriving at hospital or their organs have been badly crushed or damaged.
Marianne waits apprehensively each day for the phone call that a donor has been found. She was on the transplant list again in 2012, for new stomach, bowel, pancreas and duodenum, but was taken off when she became too ill.
Doctors are hesitant to speculate on how much time she has left. In the last three months, she has been hospitalised five times for life-threatening infections. This is her only chance of survival.
“There are a lot of emotions that come with it,” Marianne said. “It is a constant battle and I do really struggle with it. For me to survive, somebody dies. Their family loses somebody they love and I will be forever indebted to that family. It’s something that I would, never, ever take for granted and, I guess, it will really drive to me to live the life that person never got to live.”
Marianne was born into the Exclusive Brethren in Queensland and her family fled the ultra-secretive religious sect which has been marred by controversy in recent years when she was a young child.
Their decision to cut ties with the sect, and leave with only the clothes on their backs, has meant her mother, Lorraine, who is her fulltime carer, often struggles to pay for the medical bills and care Marianne requires.
Of the dozens of Victorians who die in each week, few are suitable donors for Marianne.
“In 12 months in Victoria there would likely be about three suitable donors,” Austin Hospital liver transplant unit director, renowned transplant surgeon Professor Bob Jones, said.
Once an ideal donor is found their organs must be removed within six hours of death. Their digestive tract would then need to be immediately transplanted, with organs still connected, into Marianne’s hollowed out, waiting body. Both operations could take up to 24 hours.
“You’re virtually replacing the entire abdominal contents,” Professor Jones said.”It’s very much a plumbing procedure, the blood vessels and intestinal bowel are all carefully hooked together.”
The new organs are meticulously sewn in and connected to the main arteries. Once the arterial clamps are removed, blood flows freely into the organs, changing them from pale and bloodless to light pink.
It’s intricate and cutting-edge work involving a team of more than 20 medical professionals from surgeons and anaesthetists, to laboratory specialists who work behind the scenes, and against the clock, testing the tissue and blood of the recipient and donor to ensure they are a match.
No two people in the world are identical, Professor Jones explains, so organs taken from one human and transplanted into another automatically result in some form of rejection. The body’s immune system recognises it as foreign and attempts to attack it.
For a six organ transplant like Marianne’s, however, Professor Jones said the risk of rejection reduces.
“The bigger the amount of organs you get the larger the mass of tissue from the donor it seems to counteract the rejection to some extent because it overwhelms the system,” he said.
“There are the elements of the unknown in all transplants that you have to deal with afterwards. But on the other side of it, we have very, very powerful and sophisticated drugs we use to slow the immune system down so we don’t get uncontrolled rejection.”
The fortnight after the transplant is crucial. The risk of complications, infections and organ rejection dwindles as the weeks go on.
“Generally, we wouldn’t do this unless we felt the patient had at least a 50 per cent chance of making it through the next five years,” Professor Jones said. “If this is successful her life will be completely transformed.”
When she’s been well enough, Marianne has skydived numerous times in her life because it makes her feel “weightless and painless”. She dreams of waking up and feeling like that each day, getting married and travelling the world.
A crowd fund has been set up for Marianne to help with the costs of medical bills. To donate, click here.
Melissa Cunningham is The Age’s health reporter.