I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on December 20, 2008, 10:57:22 AM
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Giving the gift of a better life
December 20, 2008
There were two thoughts on John Rae's mind as he rode a rattling tram across Melbourne. The more urgent concerned the pyjamas he was setting off to buy before his first hospital stay in more than 40 years.
The more insistent - and the one that clotted the 56-year-old's voice with tears - was the image of a wiry little boy with olive skin and tight brown curls. For weeks that picture had been leaping, unbidden and startling, to the foreground of his consciousness.
The boy was his brother Hans, younger than John by three years. Now gaunt and ailing from the auto-immune disease that had first dragged down his health and then attacked his organs, Hans, on that day - December 2 - was already in hospital, preparing to receive a kidney that John would donate to him the next morning.
Since the pair had learnt the date of their operations, John had been "very scatty, distracted. The last couple of weeks I've really felt the emotional force of this," he said.
He hoped his brother, increasingly bound to stay close to the Melbourne hospital that managed his dialysis, would be able to visit him in Sydney more often.
More than that, John wanted to see him recapture his life on his own terms. "Overwhelmingly what I want to see for Hans is him doing the things people want to do after they've discharged their responsibility to their kids. He's done such a great job, bringing up his boys. It's time for Hans to give himself some quality time."
Fast-forward just a week, and Hans looked more like his brother's childhood picture of him than he had in years. "He's got a normal complexion again, a rosiness in his cheeks," John said with delight. "He talks with energy, moves with energy."
Like about 300 other Australians a year, including about 60 siblings, John's gift of a kidney has freed Hans from the tether of a dialysis machine and - in the overwhelming likelihood that the graft succeeds - turned his health fortunes around.
Unlike those other people, the Rae brothers have an extraordinary memento of the event. The Herald photographer Peter Rae, the 49-year-old baby of the family, has created a multimedia record of the surgery that is published today on smh.com.au.
Peter did not expect to have the opportunity to photograph the kidney close up, packed on ice inside a surgical glove, in transit between his brothers. "They called me back specifically," he said. "I had thought it was a taboo shot and I didn't even know how big it was. Because I was taking pictures I was a little bit removed from the emotional side but afterwards when I looked back at the pictures I found it quite moving - the fact that this one item was giving his life back to him, and you can hold it in the palm of your hand."
For Hans, who prides himself on his toughness and insisted on continuing his full-time work as a mining consultant despite the relentless course of his illness, the operation has given him the opportunity finally to confess just how bad things became.
The disease, probably lupus, appeared three years ago, and he resisted dialysis as long as he could. But late last year he collapsed and denial was no longer an option. Hemodialysis was exhausting. Peritoneal dialysis was gentler but not a long-term prospect as his residual kidney function declined further.
"When your body is fighting itself you think, 'Wow, this is going to be a battle royal'," Hans said. "It is scary."
There is less post-surgical pain than Hans expected, though the anti-rejection drugs that will be finely calibrated over the coming weeks are still slowing him down. "It's a breakfast of champions," he said wryly. "Every morning 17 tablets."
Against soaring rates of kidney disease - the consequence of an ageing population as well as a rise in being overweight and diabetes - donations by family and friends are helping to contain a potentially huge blow-out in the number of people on dialysis. Even so, the number of dialysis-dependent Australians rose 25 per cent in the five years to last year - to 9642.
And despite research breakthroughs that have reduced rejection rates and allowed transplants between people with mismatched blood groups, the chance that people on dialysis will receive a transplant is small and shrinking fast: in 2004 6.6 per cent of dialysis patients were transplanted; by 2006 it was 5.7 per cent.
The rate of transplants from deceased donors has declined from its high point in the early 1990s, as road-safety improvements have reduced the toll of young otherwise healthy people who die suddenly. There are signs, though, that this year will buck that trend with an increase in donations following awareness campaigns to help reconcile families to the removal of a loved one's organs.
The creation next year of an Australian Organ and Tissue Donation and Transplantation Authority, with $151 million in funding over its first four years, is intended to improve deceased donation rates by co-ordinating state programs and providing doctors dedicated to the task of talking to relatives. Only 10 in a million Australians become donors after death, compared with 34 per million in Spain.
Meanwhile, living donations have doubled in a decade. In 2006 274 people received a kidney from a living person - accounting for 43 per cent of all grafts, up from 39 per cent the previous year. Spouses or partners are the most common source, followed by parents donating to their children. Sibling donations come next, says the Australia and New Zealand Organ Donation Registry. More distant relatives barely get a look-in, though friends made 16 donations, as did one former spouse. Two people gave a kidney to whoever on the waiting list could best use it. Most donors and recipients are in their 40s and 50s.
At the Royal Melbourne Hospital and and the adjacent Melbourne Private Hospital, where the Raes had their surgery, more than half of all transplants already involve living donors. "We'll take people into their mid-70s as donors if they're otherwise medically well," said Dr Amanda Robertson, the surgeon who performed both brothers' two-hour operations.
The goal is to get each kidney - a 150-gram high-performance blood filter for which no adequate artificial alternative has yet been developed - into the recipient as fast as possible, without infection or excessive bleeding, and without triggering a heart attack or stroke.
"It's the sort of procedure that if you do a lot of them it's fairly straightforward," said Robertson, who performed five others the same week. "But it's never routine." So much shared hope is invested in the surgery that when it goes wrong it is devastating. Usually it goes right: 95 per cent of grafts from living donors are still functioning five years later, making Robertson an intimate witness to a transformative event, an ultimate gesture of selflessness that may deepen and strengthen family bonds.
"It's lovely," she said.
In the hours before they were wheeled into theatre, Hans's concerns were all for John. He kept telling him: "'Even if they're about to put the anaesthetic in and you change your mind, it's fine by me.' But John wouldn't countenance not doing it, and I know if the positions were changed I'd be the same."
Liberated to live his life as he pleases, Hans wants to go walking in the foothills of the Himalayas, where his diplomat father was once posted. Later, "I'd like to go sailing," he said. "I'd like to take a good trip in a boat."
Before that though, he is overdue for a visit to Sydney, and John and Peter Rae are expecting him.
http://www.smh.com.au/news/national/giving-the-gift-of-a-better-life/2008/12/19/1229189886196.html?page=fullpage#contentSwap2
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I just stubbled across this article on Google looking for something else.
:waving; A few of us Aussies on IHD are under this Transplant Team.
The photo footage is great. Brotherly Love. :cuddle;
http://www.smh.com.au/interactive/2008/national/a-brothers-gift/index.html