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In the downstairs coffee shop I meet Kenn Armstrong, 53, and Tony Rogers, 48, who met and fell in love 20 years ago. In 1998, when Armstrong was diagnosed with type 2 diabetes and left-ventricular heart disease, Rogers immediately offered to be a kidney donor in the event that he ever needed one. For 12 years Armstrong was able to manage his condition with medication and check-ups. In 2010, however, he suffered a bout of pneumonia which triggered end-stage renal failure.
Armstrong, a health professional working in the field of psychiatry, was forced to quit his job in order to receive dialysis treatment. It was then that Rogers offered to be a donor once more.
"It just seemed like the natural thing to do, without question," he says, linking his arm in Armstrong's. "Kenn and I were stunned about the closeness of the compatibility."
The surgery was performed without complication and the only side effect Rogers has suffered has been an increase in the size of his remaining kidney, which now has a double workload. For Armstrong, the transplant has not only saved his life, but completely transformed it; in 18 months he has lost more than 30 kilograms, is sleeping well, no longer takes insulin and, most importantly, is no longer chained to a dialysis machine. I ask the couple how the transplant has affected their relationship.
"Well, we're closer than ever," says Armstrong.
"And now I like coffee and Abba!" adds a mock-offended Rogers, smiling.
"And now Tony can joke about the fact that he can be in two places at once!"
Both men throw their heads back and laugh, but when I ask Armstrong what it was like to receive such a gift from his partner, he stops short and suddenly bursts into tears. "It was very hard," he confesses, hyperventilating. As he continues to weep, Rogers puts an arm around him and says in a soothing voice: "For a long time he said, 'No,' but I just dug my heels in. I just kept talking about it with him until he finally relented and changed his mind."
Now, both men are now looking to return to full-time work after three years struggling to survive on disability and carer pensions.
In his first term as prime minister, Kevin Rudd, himself a beneficiary of organ donation when he underwent an aortic valve replacement operation in 1995, invested $151 million in reforms to establish a nationally co-ordinated approach to organ donation, which has seen the number of registered donors go up steadily each year.
"Unfortunately, at the same time," says Goodman, "we've seen the live organ donor rates go down." He offers a shrug. "I don't know if we've caused, unintentionally, those rates to go down, that people are presuming that because deceased donations are rising they don't need to consider live donation."
Also, part of the 2009 reform agenda was the establishment of the Australian Paired Kidney Exchange Program, a system that allows a willing live donor who isn't a blood/tissue match with their intended recipient to register in the program to provide an organ for a stranger who also has a willing, but unmatched donor. So both families essentially "swap organs", even if they've never met one another before.
How do you make all parties keep to their commitments? I ask Goodman. He grins and makes a tent with his hands. "The transplants have to be conducted at exactly the same time, even if the donors and recipients are in different locations. We could be removing a kidney in Melbourne to pair with a recipient in Perth, while a donor in Brisbane has part of his liver removed to donate to a child in Sydney. That's four operations happening simultaneously in four different locations."
Today, Australia relies on three different types of organ donation: live, deceased and paired, yet many countries have taken more radical steps to increase donation rates. In July, for example, Wales passed a law assuming that all adults consent to organ donation after death unless they've deliberately "opted out" of the program. More than 24 countries now have some form of an "opt out" scheme, including Singapore, Austria, Belgium and Spain.
I put it to Goodman that such a scheme could work in Australia, but he disagrees. "It works in more homogenous cultures like Spain. They all have a similar lifestyle and one dominant religion. Here in Australia it's so culturally diverse that it would be difficult to enforce. Muslims don't like to donate or receive organs. Neither do indigenous Australians and some parts of the Jewish community."
In August, for the first time in this country, someone donated a kidney to a child who was not a matching blood type. Fourteen-year-old Chelsea Bury received a kidney from her father, Nigel. For Chelsea to be able to accept her father's kidney, she had to undergo a procedure during which the plasma from her own blood was removed and replaced by plasma that didn't carry antibodies that would cause rejection. The successful operation has paved the way for hundreds more parent-child donations with incompatible blood types.
About a third of children who need transplants have a blood type incompatible with either of their parents and so, up until now, have had to wait for a cadaverous donation or enter into the Paired Kidney Exchange Program (currently there are only 10 to 15 people registered for the program).
There have also been life-saving developments in the treatment of diabetes in Australia this year; in one case, surgery was performed on a long-term diabetic, extracting platelets from a donated pancreas and transplanting them into the liver of the recipient. In July, the Gillard government unveiled a two-year scheme that makes live donors of kidneys or partial livers eligible for six weeks' paid leave so they can recover from an operation without too much financial stress.
However, a transplant is not a cure for organ failure; it's merely part of the ongoing treatment. Generally, a recipient who has received a deceased kidney donation can expect the organ to function well for about 10 years, after which time they will return to a form of dialysis and await yet another transplant. For the recipients of live donations the function is improved: about 10 to 15 years.
Part of the treatment is the daily consumption of a raft of anti-rejection drugs, including steroids, the side effects of which produce high cholesterol, reduced bone density and severe mood swings.
Before I leave Goodman's office I ask him about the future. He is unequivocal. "We need improved anti-rejection medications and just more donated organs. It's that simple."
After eight years spent on dialysis, my brother finally received that all-important call in February, 2008, informing him that a compatible donor had been found. Initially, the surgery went well, but he suffered lengthy post-operative complications as his body struggled to accept the kidney.
Four weeks later, he was still in hospital fighting for his life - and with his doctors, who wanted to remove the organ in yet another operation because they believed the transplant had failed. Amid the fighting and confusion, however, a nurse noticed something was amiss with the drainage tube in his stomach. She pushed a valve and litres of liquid suddenly gushed from his body, saving his life and, ultimately, allowing him to retain the precious gift of his kidney.
A fortnight later he was released from hospital. Due to severe nerve damage, however, it took him a further six months to fully recover and to return to work.
The transplant has allowed Jason to do so many things in the past five years that many of us take for granted: to eat and drink whatever he wishes; to play sport; to travel overseas; to go out on a date. Curiously, since our misunderstanding about my offer to be his donor so many years ago, we've never really discussed it again. The issue has just been hanging over us, unacknowledged, like an unpleasant smell.
I'm in Melbourne for the night and invite Jason over to my hotel for a drink. These days he's a slim, bright-eyed, 37-year-old who loves cycling and snowboarding. He's also fallen in love. His girlfriend, Jo Trigg, is about to give birth to their first son. I greet him at the door and we throw our arms around one another. When I mention that it happens to be Father's Day, we burst into laughter at the coincidence.
Sitting on a balcony, overlooking Fitzroy Street in St Kilda, I remind him that we never got around to writing a thank you letter to the family of his deceased donor.
"I think they'd like to know you're doing so well, that you're about to become a father. You know, only 10 per cent of recipients write thank you letters to families."
Jason sets his eyes on a passing tram and sighs, "What do you say?" He's not a talkative man at the best of times, and I can tell that he's genuinely exasperated and lost for words.
I take a sip of my beer and brace myself for what I'm about to ask him, but I can't say it in the first-person, it's just too hard.
"So why did you find it so difficult to accept a kidney from your sister?"
He sighs once more and rests his feet on the balcony railing. Laughter floats up from the street below. "It's a gift," he replies softly.
I wait for him to elaborate, but he doesn't.
"You know, the reason I wanted to give you a kidney," I confess, "is because I totally love you."
"I know that," he replies, a note of impatience in his voice.
He shifts in his seat. A tram bell rings. He keeps his eyes fixed on the diners in a restaurant across the street. "And the only reason I couldn't accept it," he replies, "is because I totally love you."
A breeze rises up from the beach and trees sway against the neon lights. After a few minutes, Jason crosses his legs and remarks, "You know this thing you're writing for the magazine, well, maybe it could be a kind of thank you letter."
I rest my hand on his, where I can feel his pulse, as steady as a drum. "That's a good idea," I reply, "maybe it can."
Read more:
http://www.smh.com.au/national/can-you-spare-a-kidney-20130930-2un5g.html#ixzz2hON2FZ2g