Time running out for Luke as mum's gift gives up the ghost
ROSEMARY Rose loves her five kids so much that she will make any sacrifice for them - including giving them her organs.
Rosemary's middle child Luke was diagnosed with kidney disease at two years old.
For almost 25 years, Luke's kidneys chugged along, doing what they were supposed to do with Brisbane hospital visits becoming par for the course for the lad and his single mum.
About 10 years ago the tired organs gave up the ghost and at 26 years old Luke was forced onto dialysis.
Five hours a day, three times a week, Luke was hooked up to a dialysis machine that filtered waste from his blood until a deceased kidney donor became available.
"Being on dialysis is not a very good quality of life - it might keep them alive and they don't complain about it but it's not a good quality of life," Rosemary said.
In Australia, organ donation can be done via live donors or deceased donors.
Deceased donor transplants rely on the family of potential donors approving the surgery after their loved one is declared brain dead but their body remains on life support.
Organs can also be retrieved from patients with terminal heart or lung failure, or those who have had a very severe spinal injury meaning they cannot breathe unassisted.
One deceased donor may help improve the lives of 10 people. Surgeons can transplant hearts, lungs, liver, kidneys and corneas. Tissue can be used for a range of medical purposes.
Live donors allow a kidney or a lobe of their liver to be transplanted into another person.
Determined to help her son, Rosemary made a stunning announcement that would change the course of both their lives.
"I said to Luke, 'I'll give you a kidney'," the 62-year-old laundry worker recalled.
"He turned to me and said 'You'll have to give up smoking'.
"I've never smoked since - he did me a huge favour."
Donating a kidney can be an arduous process for a young person leading a fit and healthy lifestyle, but it becomes even tougher when you're a smoker and aged over 50.
"I wasn't frightened by the idea," she said.
"I just decided to not eat any rubbish, I wanted to be really healthy, I went to the gym."
Rosemary went through a series of tests to ensure her organ was the best match for Luke and she passed all the tests with flying colours.
The mum and son were scheduled for the life-changing operation in August of 2007.
However, fate intervened.
"I got very sick and they had to put it off," Rosemary said.
"I said I'm sorry and he just said 'It's OK'."
By October, 2007, Rosemary's health was back to normal and the surgery went ahead at Princess Alexandra Hospital in Brisbane.
"It's just something that you do," Rosemary said.
Since receiving his mum's kidney, Luke has done his best to live life to the full, even competing at the World and Australian Transplant Games across a wide array of sports including swimming and soccer.
While some transplanted kidneys last up to 30 years, Luke was not so lucky.
"In June or July last year, my body started to retain fluid and I knew something was wrong," he said.
"I competed at the Australian Transplant Games in September of 2016, but I was feeling very ordinary health-wise.
"I was over-loaded with fluid, I had no energy, no appetite, I was just coming home to bed and sleeping the whole time then getting up and going to work.
"On my days off I would lie down all day."
In June last year he found out the kidney he received from his mum had failed.
"I knew this would come eventually," Luke said.
"I had hoped it would last a lot longer."
The 37-year-old Central Queensland Qantaslink customer service officer is back to his tri-weekly dialysis routine and he is back on the deceased donor list.
"I dialyse three times a week at home before or after work," he said.
"I spend about four hours on the machine every second day.
"I try to sleep while I'm on it or I'll watch TV, do some puzzles or play on the phone."
Being on the donor list is a double-edged sword for Luke.
It means he is reliant on a stranger being declared brain dead, their family approving donation of their organs and the deceased donor's body being compatible with Luke's.
"It's pretty hard knowing someone has to die for me to get a kidney," he said.
"It does weigh me on a bit but I know the alternative of being on dialysis for the rest of my life in not really good either."
Doctors expect Luke to wait 12 months to four years before he gets the call that a kidney is available, but Luke is not resting on his laurels.
He continues to swim and he plans to compete at next year's Transplant Games on the Gold Coast.
"The only thing that will stop me from taking part is if I get a transplant because I will need about six months to recover," he said.
Meanwhile, Rosemary has had to come to terms with the heartbreaking knowledge her gift of life to Luke is dying.
"When he was given my kidney, his had turned to mush," Rosemary said.
"When my kidney started to fail, I was devastated.
"It was like losing a child because I knew I could never do it again - it just broke my heart.
"But he just says 'I got nine years out of it, I'm really happy with that'."
Why we lag behind the nation when it comes to saving lives
WITH less than a quarter of Rockhampton residents signed up to donate their organs, our region lags behind the rest of the country.
NewsRegional analysis of Australian Organ Donor Registry data shows there are just 23,897 locals listed on the Australian Organ Donor Registry.
This equates to 20 per cent of the Rockhampton population but this is 13 percentage points behind the national rate of 33 per cent.
About 1400 Australians are on the transplant waiting list.
Australia has one of the lowest organ donation rates in the world despite major regional and metropolitan centres having dedicated deceased organ donation professionals.
Central Queensland Hospital and Health Service oversees the process in Rockhampton and Gladstone.
If a resident is a suitable organ donor, and if their family agrees, a team of specialist surgeons will usually fly in to retrieve their organs.
This is done while the person's body is still on life support.
The organs are then delivered to major transplant hospitals in Brisbane, NSW or Victoria that have matching recipients awaiting transplants.
A 2015 La Trobe University study found hospitals with high numbers of "family donation conversation-trained professionals" had significantly better donation consent rates than those without FDC experts.
"This is how the system is meant to operate but this doesn't always happen," ShareLife chairman Brian Myerson told NewsRegional.
"Not all requests to deceased donor families are done by donor specialists in Australia."
Someone who is trained in the process of requesting an organ donation but is not the doctor treating the dying patient gets about 75 per cent of families agreeing to allow the donation, Mr Myerson said.
"That's about as good as you can get."
He said a practitioner not trained in the donor conversation process would get 45 per cent per cent of families agreeing to allow the donation.
Professor Jonathan Fawcett is one of Australia's leading transplant surgeons and has saved hundreds of people in his career.
He said Australia's organ donation strategy was working very well.
"Public awareness is probably the single most important thing," the Princess Alexandra Hospital liver transplant specialist said.
"People have to be aware that transplantation is out there and that it is hugely beneficial.
"Although it is a terrible decision to have to make when a loved one is dying, it is often one of the most rewarding things bereaved families do."
Donate Life clinical education co-ordinator Francesca Rourke said our region had professionals who were highly trained and "extremely dedicated" to supporting families through the organ donation process.
Ms Rourke said local co-coordinators often juggled the role with their normal nursing duties, provided public education and often drove for hours to help hospitals in other districts when a potential organ candidate arrived in the intensive care unit.
"The regional co-ordinators are phenomenal with what they do and what they can do," Ms Rourke said.
"They are invaluable, they are highly trained and specialised in being able to provide the same support that is offered in capital cities."
Are you game enough for the Transplant Games?
THE Australian Transplant Games brings together athletes with the heart to inspire change.
The 2018 Games will be held on the Gold Coast from September 30 to October 6 with registrations closing on August 28.
There are more than 20 competitions listed and they include physical sports such as athletics, tennis, swimming, football, cycling, volleyball, table tennis and more sedate activities including lawn bowls, backgammon, chess, croquet and Scrabble.
Some participants will have benefited from live donation of kidneys or livers and others will have received organs from deceased donors.
Friends and families of organ recipients and the loved ones of donors will be among the spectators.
"The Games celebrate people who have been at death's door, they have contemplated their own mortality and someone has donated their organs to give these people another chance at life," Transplant Australia boss Chris Thomas said.
"Part of the recipient's journey is focusing on their own health and rehabilitation.
"The Transplant Games is a key part of that because it gives them a goal to be as fit as possible."
Mr Thomas said the Games also inspired Aussies to join the Australian Organ Donor Registry and to talk to their family about their end of life wishes.
"The Games cast a spotlight on the success of Australia's organ and tissue donation systems and they encourage more Australians to look favourably on the concept of organ donation," he said.
"If we want to change people who have never considered doing this, we need a tangible reason for people to change.
"The tangible reason is the lives of people who have been saved through transplants and organ donation." - NewsRegional
To become an organ donor visit register.donatelife.gov.au
To take part in the Australian Transplant Games or go along to watch visit australiantransplantgames.com