Family donation can be also be an emotional minefield

[Karol]

Can you spare a kidney?

October 5, 2013

Mandy Sayer

The future for patients on organ waiting lists is grim, but family donation can be also be an emotional minefield.

My brother had been waiting for a kidney transplant for five years when I could no longer bear to watch his suffering. A former athlete and basketballer, Jason had been diagnosed with acute renal failure at the age of 24, and initially had been given just six months to live. Dialysis treatment went on to keep him alive, but it was a cruel and brutal regime. He was hooked up to a machine at home every night, unable to travel, to go on a date, or to consume more than 500 millilitres of liquid a day.

During home dialysis he nearly died seven times. Due to mechanical malfunctions in the night, he'd suddenly wake to alarm signals blaring and bathed in his own blood. He was living alone in public housing in the inner Melbourne suburb of Carlton and not long before, our mother had died. The least I could do, given the horrendous time he was going through, was to offer him one of my kidneys.

The screening process was rigorous, not only to test my physical health, but also my psychological state. After weeks of evaluations, I was thrilled to discover that, even though we have different fathers, Jason and I share the same blood and tissue type, and I was approved as an excellent match. Appointments were made; plans were drawn; yet at the last minute something strange happened between us. Jason grew hostile towards me, accusing me of ulterior motives, and changed his mind.

“We’re closer than ever” … Tony Rogers (left) gave his kidney to his ailing partner Kenn Armstrong.
“We’re closer than ever” … Tony Rogers (left) gave his kidney to his ailing partner Kenn Armstrong. Photo: Marco Del Grande
"You're just running out of material," he shouted to me once. "You just need a new subject for the next book you write!" He stormed out of my apartment, leaving me stunned. I didn't know how to react or what to do.

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"The reason why the kidney transplant list is so long," says nephrologist Dr David Goodman, of St Vincent's Hospital, Melbourne, "is because dialysis can keep patients alive indefinitely, while those diagnosed with heart, liver, or pancreatic failure don't have any form of life support and many will die waiting for a donor." We're sitting in his fourth-floor office overlooking leafy Victoria Parade; it's the same office in which I first offered to be a donor for Jason, and Goodman is the same doctor who initially interviewed me.

Today there are about 1600 people on the donor waiting list in Australia, yet in 2010 there were only 13.8 donors per million people. The average waiting time for a kidney transplant is four years, and each year 20 per cent of those on the list die.

I ask Goodman about our national reluctance on the issue. Is it a misunderstanding about the risks of harvesting organs before a registered donor is legally dead? He throws his hands up in exasperation.

"A hospital's first duty is to you and saving your life. Organ donation is only considered after all efforts fail and when organs can no longer function without life support. Two independent senior doctors have to verify this."

Eighty per cent of Australians are willing to donate their organs, but only 60 per cent of Australian families give their consent for organ and tissue donations to proceed. "Obviously, the most important part of organ donation," says Goodman, "apart from registering, is to discuss your intentions clearly with your loved ones before it's too late."

I'm curious about who decides which kidneys are donated to whom, and joke about a clutch of squabbling surgeons at an airport terminal, all fighting over the one available organ. Goodman smiles and shakes his head.

"It's overseen by transplant physicians in each state, based on blood group, tissue type and waiting time. But it's finally decided by a computer algorithm," he admits, "which is national, with only a few minor changes for each state."

"But who gets priority?" I persist, remembering my brother's many years on dialysis. "Children," he finally replies in a soft voice. "Children and those patients with type 1 diabetes who need a kidney/pancreas transplant. They do badly on dialysis."

The dialysis building at St Vincent's was once a pub frequented by 1920s gangster Squizzy Taylor, its rooms now host, not to Melbourne's underworld, but to those suffering renal failure. In a private room I meet Leanne Azoulas, who was diagnosed with type 1 diabetes at the age of 11 and who is now awaiting a kidney/pancreas transplant.

She's lying on a bed, wrapped in blankets, as blood is pumped back and forth through plastic tubes into a whirring, blinking machine to her right. With her pale face, large eyes and twig-like arms, I assume she's a teenager.

"No," she says quietly. "I'm actually 34."

Azoulas's health began to decline when she was a teenager. She worked as a model and an extra when she was well enough, but for the past four-and-a-half years she has had to live with her parents in suburban Sunbury and undergo dialysis treatment for four-and-half hours, three times a week.

I ask how her illness has affected her personal life. "You don't even have time for friendships," she says, glancing at the machine as if it were an obnoxious boyfriend. "On the days I'm not on dialysis, I'm too tired to see anyone."

Azoulas tells me that she was added to the transplant list only this year - previously, with her weight plummeting to 40 kilograms, she was deemed too fragile for surgery. Her stomach still can't process food or water and so along with her dialysis treatment, she has an IV drip in her arm for the intake of fats and nutrients.

Along the way she has suffered many complications as a consequence of diabetes: peritonitis, cataracts, and teeth so badly infected they all had to be removed and replaced with dentures.

"Obviously, I can't have a live donor," she says. "And the other problem is, I'm blood type B and only 10 per cent of the population matches my type." She admits that about two years ago, she wanted to give up.

"I just hit a wall. I didn't want to go on."

We look up to see a tall man wearing paint-blotched overalls sweeping into the room. This is Kevin Green, Victorian chairman of Transplant Australia, who had to wait on dialysis for eight years before receiving a deceased kidney donation in 2009.

As he sits down and joins us, I ask him if he was ever tempted during that time to participate in organ tourism. His eyes widen and he nods. "After about five years on dialysis I'd almost had it and was tempted to go to China."

What changed his mind? "First of all, the fee was $25,000 upfront. It's only an option for the rich. And secondly, if your body rejects that organ you can never get back on the transplant list in Australia."

A former footy player, tennis enthusiast and swimming instructor, Green was diagnosed with glomerular nephritis at the age of 19. Assuming he was young and invincible, he resisted dialysis and refused to be added to the transplant list for several years until his kidneys began to fail and he was forced to reconsider.

Even though he comes from a family of 12 brothers and four sisters, none matched. "I was kid number 13," he announces cheerily, "the one who got the bad luck."

I mention my experience with my brother, how he found it difficult to accept my offer to be a donor. Green snorts and crosses his legs.

"I know exactly how he felt. My best friend offered to be one. He was in his 20s and his missus had just had a baby. There was no way I could agree to that."

Green pauses and begins chatting with Azoulas. "Can you still have a piddle?" he gently inquires.

In any other context the question would be considered intrusive, but Azoulas smiles readily, "Yes, a little bit."

"Here's something you never read in the papers," Green says, turning to me, "how organ failure often destroys marriages as well.

"Soon after I went on dialysis," he says, "my wife left me and took my daughter. So not only was I dealing with failure on a physical level, I was also suffering deeply on an emotional level."

Green estimates that it happens much more than one would imagine. "Of all the people diagnosed with renal failure, I'd say about 65 per cent would be left by their partners or spouses." He must have noticed the look of shock on my face.

"Look, it's understandable," he says. "The drugs you're on make you cranky. You can't really work. You're flat out looking after yourself, let alone a family. Sometimes it all just gets too hard."

Twelve of his friends have died in the past decade while still on the lengthy waiting list. "The thing to do is maintain your health, before and after the operation."

Green represented Australia in the 2011 World Transplant Games held in Sweden, winning a gold medal for golf pairs and silver for singles. He hits a button on his mobile and up pops an image of two children, Thomas, 7, and Meg, 6, both recipients of live liver transplants when they were only six- and 14-months-old respectively. "These two kids are the faces of future Transplant Games," he says proudly.

He leans over and looks at Azoulas. "And next year you're gonna join us in the games, too. Even if you only play Scrabble!"

She laughs and promises to be there.

I ask Goodman about organ tourism: has he ever had dialysis patients disappear, only to reappear two weeks later with a scar on their torsos?

"Multiple times," he says. "About five years ago a whole cluster of them went off to China together and returned with transplanted kidneys. The donors were convicts about to be executed and the blood and tissue types had already been matched." (In August, China announced it would phase out its practice of harvesting the organs of executed inmates.)

"I have strong objections to organ tourism," Goodman says, adjusting his frameless eye-glasses. "The donors feel abused. There's no follow-up care in China, India, Pakistan or the Philippines. The patients only get five days' worth of medicine after the operation so they fly back to Australia and get a cab straight from the airport to the emergency room."

Current studies suggest that those who receive live transplants have a 21 per cent better survival rate after 20 years than people who receive organs from deceased donors. I mention again the stoush I had with Jason, and Goodman nods knowingly.

"Ten years ago I would have said there would be very few complications. But recently we've lost two live donors, one in Sydney and one in Melbourne. It can happen."

He says that here in St Vincent's recently, a mother donated a kidney to her daughter who was in her early 30s.

"The daughter lived," he says, looking down at his hands, "but the mother died. And you can imagine the grief it has caused that family."

At the prince of wales hospital in Sydney, between 14 and 20 live kidney transplants are performed each year. Recuperation times for patients are fairly minimal, with donors usually discharged from hospital four days post-surgery, and recipients taking seven to 10 days.


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[Karol]

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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