Monday 8 April, 2013 at 8:30pm on ABC1

This is a story Australians think they know: the gift of a donated organ that transforms the life of someone with a devastating illness. What we see here for the first time is the extraordinary journey families undergo whose loved ones are dying in hospital from a sudden, unexpected event.

Two brave families allowed Four Corners to follow them through the hours leading to their loved ones' death. It's in that acute moment they face the hardest question: will they consent to organ donation to help someone else live?

The vast majority of Australians say they support organ donation. But confronted with the question at a time of crisis, almost half of all families refuse consent for their relatives to donate. Hundreds of children and adults on waiting lists miss out on the life saving gift.

For Sarah Ferguson this is a personal story. For almost three years she watched her friend and colleague ABC radio presenter Mark Colvin as his health deteriorated waiting for a donated kidney. The waiting time for transplants in Australia is long and Sarah wanted to understand what happens in hospitals when the question is asked, will you consent to organ donation?

The program follows others waiting for a precious donation: Anthony, whose life is dominated by dialysis and Kelly, the 26-year-old surf-life saver from Tasmania who is dying from end-stage liver disease.

Without exception all the people in the program want Australians not just to think about organ donation, but to have the conversation with their families so their wishes can become a reality.

During the making of the program Mark Colvin had accepted the offer of a kidney from a live donor - his wait was over. We follow him to the operation theatre, as Sarah watched anxiously on.

Mark's description was this:

"I know somebody who got a heart and two lungs and ... his Twitter handle is "a gracious gift" and that's very good I think, a gracious gift - it's the most gracious gift you could have really."

'A Gracious Gift', reported by Sarah Ferguson and presented by Kerry O'Brien, goes to air on Monday 8th April at 8.30pm on ABC 1. It is replayed on Tuesday 9th April at 11.35 pm. It can also be seen on ABC News 24 on Saturday at 8.00 pm, ABC iview and at www.abc.net.au/4corners

Transcript

A GRACIOUS GIFT - Monday 8 April 2013

KERRY O'BRIEN, PRESENTER: One family's trauma...

CAROL: I looked at his face and there was nothing there.

KERRY O'BRIEN: ...becomes another person's chance at life. In the end it takes just one word, yes.

MARK COLVIN, ABC PRESENTER, PM: It's the gracious gift, it's the most gracious gift you could have really.

KERRY O'BRIEN: The question is, why don't we say 'yes' more often?

Welcome to Four Corners. Tonight we share a number of very personal stories - personal for those who are telling them, personal for all of us.

When you ask Australians if they'd be prepared to give their organs to someone else after they've died, they say yes in overwhelming numbers. But when it comes to the crunch, many of those same people, or their relatives, say no. In fact across the country last year, only 354 people facing death gave their organs to help others survive. That left hundreds of seriously ill people on organ waiting lists, and it increased the possibility that some of those people will die before they ever receive a transplant.

We don't compare well on this front with many other developed countries. There are various views on what might be done better within the hospital system to improve the situation. But it seems what really has to happen is to actually have a proper conversation with family and make our wishes very clear that if we die in hospital we want our organs to be donated.

Tonight, reporter Sarah Ferguson opens up a world we all should know, and a process that is simply inspirational. With the help of some very generous people, who've invited us into their lives at a most difficult time, Sarah goes inside the intensive care wards of major hospital to reveal what it's like at the crucial moment when a decision must be made. It makes gripping viewing and lays out a challenge to us all.

SARAH FERGUSON, REPORTER: The sun has just come up over Heidelberg in Melbourne.

(Sunrise)

It's a beautiful morning.

(Interior of hospital ward)

But inside the Austin hospital a man is dying.

Steve is on life support in intensive care. At home at the weekend he suffered a massive stroke.

His partner Linda has been here ever since.

She's talking to him even though she knows he can't hear her.

SARAH FERGUSON: This is hard for Linda?

GARRY, LINDA'S BROTHER IN LAW: Oh very hard. They are two, two peas in one pod.

SHARON, LINDA'S SISTER: So close. They did everything together.

SARAH FERGUSON: Faced with his imminent death, Linda has made a crucial decision that Steve would want to donate his organs to save someone else's life.

LINDA: I was always an organ donor, and we've always both agreed we're not religious in the slightest. If there is a God he sucks.

SAM RADFORD, INTENSIVE CARE SPECIALIST, AUSTIN HOSPITAL: I think they'll need a little time when they're slightly less raw with the grief to talk about the process and the...

SARAH FERGUSON: Intensive care specialist Sam Radford briefs his colleagues.

SAM RADFORD: He's a gentleman who's had a catastrophic posterior circulation stroke. And we've certainly diagnosed him as being locked in, and I've had some chats with his family and they're very clear that this is not desirable and that he wouldn't want to go on in this state.

HELEN OPDAM, SENIOR INTENSIVE CARE SPECIALIST, AUSTIN HOSPITAL: So the best possible outcome is dreadful?

SAM RADFORD: Yeah, and they were very clear he wouldn't want a bar of that. Before I could even finish describing where things were going, his wife just reached into the wallet to pull out the driver's license and start talking about organ donation.

SARAH FERGUSON: Overnight, the doctor's recommended that treatment should cease.

So you can be certain that this patient isn't going to recover?

SAM RADFORD: We can be certain that there is no capacity for him to survive independently of the intensive care level supports he's receiving.

SARAH FERGUSON: So the only possibility would be survival on the machines?

SAM RADFORD: That's correct.

SARAH FERGUSON: Few people realise how rare it is to be able to donate organs - a person must die in hospital on a ventilator.

Helen Opdam is a senior intensive care specialist at the Austin and the Victorian Director of Donate Life, the National Organ and tissue authority.

HELEN OPDAM: That's one of the big myths out there. Fewer than one per cent of people who die in the community die in a situation where they can donate and in hospitals it's about one to two per cent. The situation in which donation is feasible is really when someone dies having been on life support. Ah, usually in the intensive care unit, less frequently in the emergency department.

SARAH FERGUSON: Steve is one of that small group. But Linda's consent was critical.

Even though the overwhelming majority of Australians say they support organ donation, when asked the question in this situation, almost half say no.

SAM RADFORD: Lots of people if you stop them in the street or do a telephone survey on a - or if they're sitting around their kitchen table having a chat about what their wishes after death might be, it's easy to sort of think of a virtuous deed and say "Yeah, yeah, I want to be an organ donor."

So that's sort of one conversation but it's a completely different conversation when you're in a (breathes) much less supported environment in an ICU waiting room, consumed by grief, dark moments. If you haven't already had that sort of discussion about what someone's wishes are. It can be really hard to feel okay about saying yes.

SARAH FERGUSON: Linda and Steve have been together for 24 years.

STEVE WARRILLOW, INTENSIVE CARE SPECIALIST, AUSTIN HOSPITAL: Part of my role is to support families in the process of organ donation.

SARAH FERGUSON: Having made her decision Linda and her family gathered in a hospital waiting room

LINDA: He was still funny, no matter how pissed he was, he was the funniest man in the world

MAY, LINDA'S MOTHER: We didn't see him a lot, he had to work and we live in the country and we're not down in the city all the time. It just makes it harder, right.

SARAH FERGUSON: It is the job of Dr Steve Warrillow to explain to the family what happens next.

STEVE WARRILLOW: What I thought I might do know is to talk with you about the actual process that will be undertaken to support Steve and yourselves through the period when he is taken off the ventilator. What we'll be doing as dying occurs and what will occur afterwards when Steve goes through to the operating room for donation. Does that make sense?

LINDA: Yes, it does.

STEVE WARRILLOW: Did you have any questions about anything I've explained so far?

LINDA: No, it all makes sense.

STEVE WARRILLOW: I imagine it's crossed your minds, how long will Steve take to die when the ventilator's removed. And that's a difficult question to answer with absolute certainty. But on the assessments that the treating doctors have made of Steve you would expect it not to be very long at all. And I think we'd expect it to be a number of minutes, now whether it's 5 minutes or 20 minutes will be up to Steve. It's out of our hands.

ANDREW YOUNG, ORGAN DONOR CO-ORDINATOR, VICTORIA : The plan is he'll be palliated today and if he dies in time, he'll be able to donate his organs and his tissues as well.

SARAH FERGUSON: Andrew Young from Donate Life is coordinating the donation.

ANDREW YOUNG: We're booking the surgeons to do the retrieval for us, making sure that the organs have been allocated to the appropriate recipients around the country.

LINDA: His Daddy always said he was going to make him famous. You're going to be on television with your Daddy.

SARAH FERGUSON: Linda has brought the family dog in to say goodbye.

LINDA: Say goodbye to your Daddy. I'll take Gus home and be straight back.

SURGICAL TEAM MEMBER: Why don't I scrub up and bash up a little bit more ice.

SARAH FERGUSON: Just before 7pm the surgical team prepares. Timing is crucial.

Steve's ventilator can't be removed until the surgeon is are ready to operate.

RUSSELL HODGSON, SURGEON, AUSTIN HOSPITAL: After the heart stopped the organs involved obviously get less blood supply, there's still a lit bit of nutrition left in the blood, but very quickly the tissues start to lack oxygen and start to degrade.

So, my aim is that - as soon as the donor reaches the operating theatre, is to have the perfusion lines in and running within a few minutes. Because every minute really does count for these organs.

SARAH FERGUSON: Sam Radford has been here for 12 hours. He has one more task to perform.

The final moments of preparation for the staff and for Steve's family.

Linda leaves the bedside for the removal of the breathing tube.

SARAH FERGUSON: Andrew Young is focused on Steve's monitor and the clock.

(Close up of monitor)

He briefs the theatre staff as Steve's blood pressure falls.

ANDREW YOUNG: I'm just letting you know we've got a systolic blood pressure of less than 50 now so warm ischemic time has commenced.

SARAH FERGUSON: Steve's heart is still beating.

If it goes on too long the organs could be damaged, the donation would be called off.

ANDREW YOUNG (on the phone): So we've got a map of 25 now so we're losing at 19.56.

Yeah, slowly decreasing, so I think shortly we'll have no cardiac output at all.

(Monitor shows vital signs flatline)

SARAH FERGUSON: Minutes later at 7:59 Steve is pronounced dead.

STEVE WARRILOW: So I've just confirmed that Steve's heart has stopped and that he has now died. His partner Linda is just going to kiss him goodbye and then we'll be going to theatre.

SARAH FERGUSON: From here every second counts. Steve's body is wheeled quickly to theatre.

Sam Radford hands over his patient to the theatre staff.

SAM RADFORD: Ok, thank you.

NURSE: Thank you.

(Staff wheel stretcher into operating theatre)

SARAH FERGUSON: His work is done.

SURGEON: Declaration of death there Andrew?

ANDREW: Yes.

NURSE 1: Yep

SURGEON: Okay, ready to read out the label?

NURSE 2: Okay, let's go, transfer please.

(Muffled speech)

NURSE 2: Yep, go.

NURSE 3: One, two, three - go.

Good work. Just watch the IV on the way down.

SURGEON: Okay, scalpel. Can I have a (inaudible) please?

(Audio fades out as the surgeon operates)

SARAH FERGUSON: The Prince of Wales hospital in Sydney…

(Exterior shots of Prince of Wales hospital)

Three times a week Mark Colvin comes here to the dialysis ward. He's been on the waiting list for a donated kidney since 2010.

Mark is an ABC radio presenter and a dear friend of mine.

(Mark Colvin walking through the dialysis ward)

MARK COLVIN, ABC PRESENTER, PM: Good Morning, Margaret…

MARGARET: Hello Mark, you're back with us.

NURSE: Hi ya, Mark, good to back at work?

MARK COLVIN: Yeah.

SARAH FERGUSON: It was watching him wait for a kidney with his health deteriorating that made me want to make this program.

(Dialysis nurse prepares Mark for dialysis)

MARK COLVIN: If I didn't have dialysis I'd think I'd be dead by now. I don't think that you can survive with no kidneys.

SARAH FERGUSON: For five and half hours a machine does the work his damaged kidneys can't - cleaning and filtering his blood.

MARK COLVIN: It's hard to describe to somebody who hasn't done it, but it's a feeling of being drained, exhausted, as if you're seeing the world through a kind of murky film.

PROFESSOR BRUCE PUSSELL, HEAD OF TRANSPLANT SERVICE, PRINCE OF WALES HOSPITAL (to Mark Colvin): Nothing has happened in the last few days. You haven't had a cold or a chest infection?

MARK COLVIN: No, no, nothing like that...

SARAH FERGUSON: Professor Bruce Pussell has been Mark's doctor since 1997.

PROFESSOR BRUCE PUSSELL: We need more donors. As you know, Australia has a low donor rate compared to many other countries in the world. If we could double that donor rate, we'll be able to at least or more than halve the waiting time for these people.

SARAH FERGUSON: There are more than 1,000 people on the waiting list for a kidney and a further 10,000 on dialysis.

While on dialysis, does your health remain stable?

PROFESSOR BRUCE PUSSELL: No, it deteriorates. And chronic kidney disease is not a good disease to have. In fact the outcomes, if you're aged 65, commencing dialysis has a prognosis which is worse than having bowel cancer.

SARAH FERGUSON: The routine of Mark's life has been dominated by dialysis for almost three years.

MARK COLVIN: The days I'm at dialysis, I'm at dialysis through lunch and the days I'm not at dialysis I'm too knackered. You know, I get up very late and just stagger into work at three in the afternoon.

(Mark in the PM studio)

SARAH FERGUSON: At least he's been able to keep working.

MARK COLVIN: Good evening and welcome to PM, I'm Mark Colvin. Among our stories tonight, the Prime Minister argues that she...

SARAH FERGUSON: But it was work that made him sick in the first place.

(Car drives down a street in an African town)

MARK COLVIN: We drove south towards Goma and as we drove south we could see little bundles by the side of the road and we were wondering what they were. And it was a few minutes before we realised that the bundles were the refugees.

(Footage from 1994)

(Bundles lying in the dust along the road)

They were just side by side for the last probably twenty or thirty kilometres, side by side on both sides of the road - death - corpses everywhere.

MARK COLVIN (1994): I first covered an African famine 15 years ago, and since then I've seen quite a lot of death and disease but I've never seen anything like the road we've just travelled.

SARAH FERGUSON: In Africa in 1994, the massacre of Tutsis in Rwanda caused almost 2 million people to flee across the border into Zaire.

(Crowded refugee camps in Zaire)

MARK COLVIN: The degree of suffering and death was just absolutely extraordinary. There were fields full of people lying in their own excrement and vomit. People were dying of cholera and typhoid - I don't know what else.

(Woman tries to get a crying child to drink)

MARK COLVIN (Africa 1994): She must drink. Tell her she must drink.

SARAH FERGUSON: Mark caught a bug on that trip that triggered an attack of a rare disease - a systemic vasculitis.

MARK COLVIN (Africa 1994): She must drink.

(Exterior of Charing Cross hospital in London)

SARAH FERGUSON: He was treated at Charing Cross hospital in London.

MARK COLVIN: They thought they'd let me go home for a weekend to see how I went and I suddenly felt really sick and I threw up into a kidney bowl and I... it was blood.

SARAH FERGUSON: Mark had kidney failure. His mother and his sister were called to London.

ANNE SYNNOT, MARK'S MOTHER: The ABC rang me and said he was ill and I should go, so you know, that was pretty frightening.

MARK COLVIN: I remember my mother sitting beside me 'cause I had this long period where I was so full of fluid that if I leant back to kind of there, I would start to drown, literally start to drown.

ANNE SYNNOT: His kidneys were not operating to a degree when his whole body was filling with fluid. I can remember looking down at his feet and thinking 'It isn't possible for the skin to stretch anymore. How can these feet get any bigger?'

(Photo of Mark in a hospital bed in 1994)

SARAH FERGUSON: After a long period in hospital, Mark recovered but his kidneys were permanently damaged.

(Mark in a hospital bed in the current day)

Three years ago his kidney function dropped below five per cent. He joined the waiting list for a donated kidney.

MARK COLVIN: I knew from that moment on that I was in a queue which stretches right back around the block. It's- I was told that it was an average of four to seven years, but quite quickly I was in a dialysis ward sitting opposite a bloke who had waited nine years to get a kidney.

(Evening shots of a hospital)

DESEY ALEMBAKIS, ANTHONY'S WIFE (on the phone): Yeah, bubby, they rung us at 12 o'clock, a doctor called Amali (phonetic) rang at 12 o'clock and said that they had a kidney ready for dad for a transplant.

SARAH FERGUSON: It's after midnight. Anthony Alembakis has just arrived at Royal Prince Alfred Hospital in Sydney.

ANTHONY ALEMBAKIS (on phone): She'll ring you later, all right

SARAH FERGUSON: He and his wife Desey weren't expecting the call.

DESEY ALEMBAKIS (on phone): (speaks Greek) I'll call you, nothing will go wrong. Alright. You be careful, all right, bye bye.

We always hoped, like you know, you say 'Oh, who knows, we might- could be lucky enough' and then of course you go 'Well, we're never lucky, when are we lucky?'

SARAH FERGUSON: They'd been told to expect a much longer time on the waiting list.

Anthony has been on dialysis for two and half years. He had to give up work.

ANTHONY ALEMBAKIS: I still can't believe it, you know...

DESEY ALEMBAKIS: Feel for the family, they've lost...

ANTHONY ALEMBAKIS: I mean, I don't know the circumstances but...

DESEY ALEMBAKIS: How can you not feel?

ANTHONY ALEMBAKIS: I'm really grateful.

DESEY ALEMBAKIS: Yeah...

ANTHONY ALEMBAKIS: It's gonna change my life for the better hopefully.

DESEY ALEMBAKIS: That was actually my first thought when we got the phone call, that was my first thought, I thought 'My God, some family now is in mourning'.

SARAH FERGUSON: Anthony and Desey will never know the donor, nor their name. Those details are never disclosed. All they know is that someone has died and their family agreed to organ donation.

Would you like to know more about them?

DESEY ALEMBAKIS: Yes, I would, more so to tell them that we're gonna really take care... I'm crying- of this kidney.

(Organ transport van outside the hospital)

SARAH FERGUSON: The kidney has arrived at RPA, packed in ice and delivered in a box.

The process that brought Anthony here had started more than nine hours ago.

(Technician pipes blood samples for testing in a lab)

At the Red Cross Lab in Sydney, the donor's blood arrived for testing.

They test the donors' tissue and blood to build a profile of the perfect match.

NARELLE WATSON, RED CROSS TRANSPLANT SERVICES LABORATORY, NSW: We have to determine what is actually going to occur in the body when the organ is transplanted. So we are trying to mimic that in the laboratory.

SARAH FERGUSON: Every potential kidney recipient in the country on the waiting list has a sample of their blood stored at the lab. The samples get mixed with the donor's blood to see how they react.

(Technician syringes tiny samples of blood into a tray with rows of holes)

NARELLE WATSON: Each one of these wells, there's sixty wells on a tray, has one potential recipient in each well.

SARAH FERGUSON: So there's a little well for every potential kidney recipient.

NARELLE WATSON: Yeah.

SARAH FERGUSON: In Australia

NARELLE WATSON: Yes

SARAH FERGUSON: One of those anonymous red dots is Anthony Alembakis's blood.

A computer program works through the test results and selects the best match.

Six hours after the blood arrived, the computer produced a list of 40 possible recipients - Anthony's name was on top, a patient at Steve Chadban's clinic at RPA.

SARAH FERGUSON: How lucky was he to get that kidney?

PROFESSOR STEVE CHADBAN, DIRECTOR OF KIDNEY TRANSPLANTATION, RPA: Super lucky.

SARAH FERGUSON: So that phone call was really a giant stroke of luck?

PROFESSOR STEVE CHADBAN: That's a lotto win. Yep

ANTHONY ALEMBAKIS (to Desey): I'll see you later, see you.

SARAH FERGUSON: Just before 4am, Anthony is ready for surgery.

The kidney is brought up from the cold room through the empty corridors of the hospital.

(Staff wheel the kidney in its box and Anthony on a stretcher through the hospital)

PROFESSOR STEVE CHADBAN: In terms of deceased donor organs, we don't have nearly enough to go around and that's the crux of the problem. Whatever we can do to increase the number of available deceased donor organs is for the betterment of our patients and our society.

SARAH FERGUSON: Six hundred kidneys were transplanted last year in Australia. It's an operation with a high success rate.

DAVID ROBINSON, SURGEON, RPA HOSPITAL: Purely from the point of view of a kidney transplant surgeon, there are a lot of people on dialysis whose lives would be changed by having a kidney. And you know, it's a relatively straightforward operation. It is something we do quite often.

SARAH FERGUSON: One very basic task remains - the ice to cool the kidney in theatre.

(Nurse prepares ice packs for the theatre)

(to Desey) So what are you going to do when he gets out of hospital?

DESEY ALEMBAKIS: Well, he'll go back to work maybe to try and do some- you know, do something. At least, you know, it'll give him more of an opportunity to t- you know, to become normal again.

SARAH FERGUSON (to Professor Chadban): When you look at countries that have much higher donor rates and higher transplant rates, is that frustrating?

PROFESSOR STEVE CHADBAN: Yeah, so Spain for example retrieves three times the number that we do and more. That is frustrating, sure it is. On average the quality of their donors are good as well. They just have a more efficient system in place.

(A Spanish transplant team work on a patient in theatre)

SARAH FERGUSON: Spain has the most successful organ donation program in the world, led by kidney specialist Dr Rafael Matesanz.

The contrast for renal patients is stark.

DR RAFAEL MATESANZ, DIRECTOR, SPANISH NATIONAL TRANSPLANT ORGANISATION: In Spain we have more patients with a functional renal graft than patients on dialysis, and what is more important the renal waiting list is continually decreasing.

SARAH FERGUSON: Senior intensive care specialist Dr Peter Saul went to Spain sceptical about their donation program and was converted.

PETER SAUL, SENIOR INTENSIVE CARE SPECIALIST, JOHN HUNTER HOSPITAL: Every time I went anywhere, they'd sweep me up and send me off with their organ donation team. I went out to coffee with these guys and one of them turned to me and I remember this moment, he said 'Do you know that lady sat over there is seven times more likely to be an organ donor than somebody in a cafe in Sydney?'

And then they took me back to the hospital and said 'This is a thousand bed hospital. Do you want to see the dialysis unit?'

I said 'Oh yes please', they said 'We haven't got one'.

I said 'Why not?' They said 'Because everybody gets a transplant'.

SARAH FERGUSON: When he started the program in 1989 Rafael Matesanz took the experience from his own hospital in Madrid and applied it nationally.

The cornerstone of that system is highly trained communication with the relatives of patients and the support of the rest of the hospital

DR RAFAEL MATESANZ: You need a very special training, a very special personality in order to get a correct approach to the family.

We train intensivists, people from the emergency department, neurologists and all these people, really whenever there is an organ donation in a specific, in a small hospital in Spain, there are a lot of people, a lot of professional who really help us to achieve this donor.

It's not just a transplant co-ordinator. This is a key person but in fact it is the whole hospital who is really working with us.

SARAH FERGUSON: In Spain last year the refusal rate amongst families was 15 per cent; in Australia it was 40 per cent.

Similar training to Spain's is now being rolled out in Australia by DonateLife, the national authority created in 2008. The number of organ donors in increasing.

HELEN OPDAM, MEDICAL DIRECTOR, DONATELIFE, VICTORIA: In Victoria, our rates doubled from a baseline of a little under 50 donors per year. We're averaging a hundred people die and donating organs. I mean that's a huge increase in a short time.

SARAH FERGUSON: So why are you still getting those high refusal rates in spite of everything that's happened, the training, the change in culture? Why are you still getting the refusals?

HELEN OPDAM: Look, I think the most common reason is that people haven't talked about it amongst their family and then the decision needs to be made when they don't know what their loved one would have wanted, at a time of sudden bereavement, sudden grief and that's tough.

SARAH FERGUSON: Twenty six year old Kelly McInnes desperately needs a transplant.

KELLY MCINNES (to husband Rob): Do you want to get my pyjama bottoms and a couple of T shirts?

ROB INNES: Just those ones?

KELLY MCINNES: Yeah they'll do

SARAH FERGUSON: She has liver disease. Liver patients are amongst the sickest on the transplant waiting lists.

KELLY MCINNES (looking at a bag of medications): Looks like there's enough...

SARAH FERGUSON: Kelly has just had a call from the hospital.

KELLY MCINNES: So we got a phone call about half an hour ago saying that my blood test results weren't all that great, um, and that they would like me to come into hospital. I sort of queried whether it was absolutely necessary 'cause I don't actually feel that ill.

SARAH FERGUSON: Kelly and her husband Rob are living in what are called the "transplant flats" in the shadow of Melbourne's Austin hospital.

PROFESSOR BOB JONES, DIRECTOR, LIVER TRANSPLANT UNIT, AUSTIN HOSPITAL: Well, Kelly's dying, she's dying of end stage liver disease. It really requires the resources of a big hospital to keep Kelly alive and at the moment she can barely make it out of hospital for a few days without having to come back.

(Photo of Kelly and Rob Innes)

SARAH FERGUSON: Their real home is on Tasmania's south coast, where Kelly is a paramedic and a surf lifesaver.

(Montage of personal photos of Kelly Innes)

She has a rare auto immune condition that attacks her liver. In December she became so sick she and Rob had to relocate to Melbourne to wait for a transplant.

KELLY MCINNES: It's very difficult because of what I do for a living to get something like that from a family that's... they're obviously going through a great loss and for me to benefit out of that does feel a little bit surreal.

SARAH FERGUSON: It's only a few hundred metres to the hospital but Kelly is too sick to walk.

PROFESSOR BOB JONES: Kelly has the typical symptoms of someone in liver failure, so she's very prone to get infections and she has abdominal fluid retention so she has a very big tummy, makes it very uncomfortable to walk. Sometimes we have to stick needles and drain fluid off the abdomen and they can be sort of four or five or seven litres at a time.

SARAH FERGUSON: Transplantation is the only treatment for end stage liver disease.

PROFESSOR BOB JONES: You know what we need to do, is to find you a liver.

KELLY MCINNES: Yeah.

PROFESSOR BOB JONES: There's a small but real chance of possibly dying during the operation or afterwards.

KELLY MCINNES: Yeah, yeah. We don't plan on that.

PROFESSOR BOB JONES: Nobody plans on that.

KELLY MCINNES: No, we don't plan on that

PROFESSOR BOB JONES: Yeah, absolutely. It's an operation that still carries a...

KELLY MCINNES: A high risk.

PROFESSOR BOB JONES: ..a little bit of danger and risk and and probably more risk having this operation than just about any other procedure you could have.

KELLY MCINNES: Yeah, yeah...

SARAH FERGUSON: The operation is difficult and donated livers are rare. All Kelly wants to do is go home.

PROFESSOR BOB JONES: Kelly will never get back to Tasmania unless she gets a transplant.

There are many, many patients waiting in the list and we still have a significant number of patients dying waiting for transplantation so we quote our patients, there's about a 15 per cent chance of dying on the waiting list. So in other words, you go on the wait list but you may not get a transplant.

SARAH FERGUSON: In Australia in 2012, there were 354 deceased donors across the whole country. In more than 100 of those cases the liver was not able to be used.

(Family sitting around a table)

For Carol and her family, the last few weeks have passed in a haze of grief.

CAROL, MICK'S WIFE: We'll still do what we normally do down there.

CHRISTINE, MICK'S DAUGHTER: Yeah, we'll probably come up for a couple of nights. It'll be... it will be different, it'll be odd not having him there.

ROSS, MICK'S SON: It's strange every day, not having Dad around.

CHRISTINE: Every time we drive past the kids say 'Can we go see Nan and Pa Pa?'

SARAH FERGUSON: At home without warning Carol's husband Mick collapsed.

CAROL: I looked at his face and there was nothing there. His eyes were just glassy eyes, and I've seen people have strokes before, my mother did, so I thought it was a stroke, yeah.

SARAH FERGUSON: Mick was brought to the Alfred hospital in Melbourne.

STEVE PHILPOT, INTENSIVE CARE SPECIALIST, THE ALFRED: The initial CT scans that he had showed that he had had what we call a subarachnoid haemorrhage, which means that an aneurism had burst in the fluid around the brain.

SARAH FERGUSON: His condition deteriorated.

(Mick unconscious in a hospital bed)

STEVE PHILPOT: During the night um it was clear that Mick was initiating some of the breaths, even though he was on a ventilator at the time. Throughout the night, as the night progressed, he stopped doing that.

CAROL: They said that he was brain dead, yeah.

SARAH FERGUSON: Do you remember that moment?

CAROL: Yeah, I do. Yes. I don't think I'll ever forget it.

(Projection of a head x-ray)

SARAH FERGUSON: Two doctors performed the same tests separately to establish the diagnosis beyond doubt.

SARAH FERGUSON: Could you accept it?

CAROL: No. No, I didn't, I didn't. No. It's, it's like unreal type of thing, that um... he can't be. Yeah, because um he always said he wanted to live for 150 years.

SARAH FERGUSON: In the midst of their shock, the family remembered that Mick had talked about being an organ donor.

CHRISTINE: My grandma, my dad's mum, first raised organ donation. We were- My grandma and my mum and myself were having a cuddle, and she said, you know, I know it's a hard time to talk about it, but had we thought about organ donation?

And mum and I looked at each other and said 'Yeah, that's something that he has expressed that he wanted to do'.

SARAH FERGUSON: Mick had persuaded Carol it was what he wanted.

(Portrait photo of Mick and Carol)

CAROL: If you hadn't talked about it before, yes, that would be very hard because you don't know what their wishes are, and um... and you want to do like best for them, type of thing. And maybe yes, maybe I wouldn't have gone ahead if I hadn't known what he wanted to do, yeah.

SARAH FERGUSON: Mick has died but with the permission of his family his body is kept on a ventilator so his organs remain viable for transplant.

TONYA DAVISON, INTENSIVE CARE NURSE, THE ALFRED: His blood pressure is maintained so the organs remain well perfused.

SARAH FERGUSON: And that means they have blood flow...

TONYA DAVISON: Blood flow and oxygen. And that way we get the best possible number of organs because they all remain viable.

SARAH FERGUSON: Do you feel you have a responsibility to his family to do that now, given they brought it up, and they want it?

TONYA DAVISON: Absolutely, and to him - because you know, you don't want anyone's death to be in vain.

HAYLEY FURNISS, ORGAN DONOR COORDINATOR, VICTORIA: Oh hi, (inaudible) it's Hayley calling from DonateLife. How are you going?

That's good. Look, I'm ringing with a heart-lung offer.

SARAH FERGUSON: Transplant co-ordinator Hayley Furniss has come to manage the logistics.

HAYLEY FURNISS: See ya - bye.

SARAH FERGUSON: Samples of Mick's blood were sent to the laboratory for blood and tissue typing. The complex process of allocating the organs is underway.

HAYLEY FURNISS (teleconference): So all organs, the family have consented to heart, lungs, liver, kidneys, pancreas, intestines, heart valves, eye tissues - and also we have consent for research programmes as well.

So Greg's welcome to come and do a bronc...

SARAH FERGUSON: The liver is offered to Bob Jones's team at the Austin hospital.

HAYLEY FURNISS: Yeah, um Peta, I've this is a liver-intestinal offer for you.

PETA: Thank you.

HAYLEY FURNISS: Do you have any do you have any preferences for retrieval times or your staff?

PETA: I'll have to speak I'll have to speak to Bob first.

HAYLEY FURNISS: Okay great.

PETA: See what he wants to do first.

HAYLEY FURNISS: Alright, fantastic. Alright, thanks Peta.

STEVE PHILPOT: Mick is still a patient to us. We still treat him with utmost respect. Ah we um... care for him as we would any other patient in the intensive care.

HAYLEY FURNISS (on phone): I was wondering what your thoughts are on a 3 o'clock scrub in.

Each of the transplant teams have half an hour to get back to me, and they'll be able to see then whether or not they've got a suitably matched recipient. Yeah, Potentially I could be offering each of the organs nationally and around New Zealand as well - so you know, 20 or 30 phone calls.

SARAH FERGUSON: The kidneys are allocated by the national computer, the other organs by negotiation with medical teams around the country.

The home state gets the first offer.

HAYLEY FURNISS: Look, I've rung the liver transplant co-ordinator and let them know your earliest start time.

SARAH FERGUSON: It takes nine hours to organize the recipients and the surgical teams.

HAYLEY FURNISS: They'll be starting to call the recipients. So they'll be getting probably the most important phone call that they've probably ever received - and they've been waiting a long time for as well.

And they will then make their way to the hospital and certainly the surgeons will make their way to this hospital.

(Mick's family comes into his hospital room)

SARAH FERGUSON: It's now time for Carol and the children to say goodbye to Mick.

CAROL: I touched his hair. I gave him a cuddle, and kissed him and um... said my goodbyes to him. And ah... but I still couldn't believe it.

CHRISTINE: I cuddled and kissed him, and I patted him on- you know stroked him on his chest. And I spoke to him really quietly. I told him that I loved him and I told him that we would look after mum. Um... (crying)

SARAH FERGUSON (to Carol): What did you say when you said goodbye?

CAROL: That I loved him, I'll never forget him. And that, and ah yeah, it was hard. It was very hard just to do that and to leave him. It was.

I wanted to take him home. (laughs) But I couldn't take him home with me.

SARAH FERGUSON: Mick is brought to theatre with a kind of reverence. For him there is no rush, his body is still on the ventilator keeping his organs healthy.

When surgery was over the transplant teams were able to use his organs to help or save the lives of 9 people.

Only the liver was unable to be used.

MARK, MICK'S SON: I remember, actually, 'cause I was sitting next to grandma at the funeral. Grandma's like, you know 'He's like a hero'. It's like, well he is because he's changed the lives of you know, nine, not only people but whole families as well. Like even donating your heart that's saved somebody else life which that whole family now doesn't have to go through.

CHRISTINE: What we've just been through.

MARK: It's...

CAROL: That's right.

(Mark and his mother Anne in the garden)

MARK COLVIN (to mother Anne): Have you got some fish?

SARAH FERGUSON: A couple of months ago when we started filming with him, Mark Colvin went to visit his mother at her home near Canberra.

ANNE SYNNOT: It's very messy along the edges

MARK COLVIN: There go the geese, back to their home on the island.

ANNE SYNNOT: The only two that have disappeared I think Mr Fox has had.

MARK COLVIN: But it's so much lovelier, isn't it, to have so much water...

SARAH FERGUSON: It's one of Mark's favourite places but he's managed only brief visits since being on dialysis.

ANNE SYNNOT: It makes me very, very unhappy for me to see him as he is now, knowing what he was like - and how active he was, how he loved his job and all the travel.

He's said to me in recent times 'I just feel trapped'. And think how many people there are who are trapped.

SARAH FERGUSON: Mark's wait, though, is now over.

ANNE SYNNOT (to Mark): Is that stuff making you drowsy, darling?

MARK COLVIN: Mm...Yes, very drowsy.

ANNE SYNNOT: Well, that's very good.

MARK COLVIN: Hot and drowsy.

SARAH FERGUSON: Two weeks ago at the Prince of Wales hospital in Sydney he was getting ready for transplant surgery.

(Mark walks down a hospital corridor with his mother)

Downstairs in theatre, surgeon Andrew Lennox was also preparing.

(Andrew Lennox scrubbing in)

ANDREW LENNOX, HEAD OF VASCULAR SURGERY, PRINCE OF WALES HOSPITAL (to Mark): So the operation for the donor surgery has started, should be about another hour and a half.

MARK COLVIN: Bye Zo, by Mum

ANNE SYNNOT: Bye Darling

ZO: See you soon.

MARK COLVIN: See you soon.

ANNE SYNNOT: Not good-bye, au revoir. We'll see you this afternoon.

MARK COLVIN: Au revoir.

ANNE SYNNOT: Good luck.

SARAH FERGUSON: Almost 20 years since his kidneys first failed, with his health continuing to decline, Mark had accepted the offer of a kidney donated by a friend. By chance they were a good match.

NURSE: So Mark, what operation are they doing today?

MARK COLVIN: They're putting a new kidney in me.

NURSE: Yay, and that's your signature there?

MARK COLVIN: Yes it is.

NURSE: Okay.

SARAH FERGUSON: These days a kidney transplant is almost routine for highly skilled surgeons.

Mark's operation was a copybook success.

ANDREW LENNOX (in operating theatre): Looking terrific, the kidney's an excellent colour, it's got good perfusion throughout it. There's a terrific pulse in the kidney artery and the vein appears to be draining nicely.

NURSE (to Mark Colvin): Mark, you've got some visitors here.

MARK COLVIN: Yes, I know. Hi.

SARAH FERGUSON (to Mark Colvin): Hello, how are you?

MARK COLVIN: Kiss you from here.

SARAH FERGUSON: I can't get any closer can I? I can't kiss you yet?

MARK COLVIN: No- no, no, no.

SARAH FERGUSON: Have you seen what it looked like?

MARK COLVIN: No, I've seen one photograph of the kidney itself.

(Sarah hands Mark her smart phone)

SARAH FERGUSON: Yep, just slide through those. I must say, I found it quite hard to watch.

MARK COLVIN: Oh! Wow! The kidney - that must be the kidney...

SARAH FERGUSON: Let me have a look.

MARK COLVIN: Getting picked up, about to go in, is it?

SARAH FERGUSON: Yep, that's exactly right.

MARK COLVIN: It's a beautiful photograph.

SARAH FERGUSON: It's a beautiful photograph.

That is someone else's organ going into you. It's just phenomenal.

SARAH FERGUSON: Mark is recovering well, his eyes are clear, his system returning to normal. A miracle he thinks should be made possible for the hundreds of Australians who need transplants.

MARK COLVIN: Yes, I know somebody who got a heart and two lungs and he calls- on Twitter, his Twitter handle is "A Gracious Gift". And that's very good, I think, a gracious gift.

It's... (chokes up) the most gracious gift you could have, really.

(Shots of the grieving families of the donors)

SARAH FERGUSON: As we've learned making this program, meeting the sick and the brave, bereaved families who help them, no gift could be more profound.

KERRY O'BRIEN: A story of sadness and hope, one that should inspire a lot of personal reflection and discussion.

Some updates - Mark Colvin and Anthony Alembakis are recovering well from their kidney transplants. Mark's donor is in good health and back at work.

Kelly McInnes is still waiting for a life saving liver transplant.

Next week on Four Corners, the extraordinary story of how the West was duped by informants who claimed that Saddam Hussein had weapons of mass destruction, and how discredited intelligence was used to justify the invasion of Iraq.

Until then, good night.

END

Background Information

KEY REPORTS AND STATISTICS

Facts and Statistics about Key Chronic Kidney Disease | Kidney Health Australia | Apr 2013 - Chronic Kidney Disease (CKD) is a significant and growing public health problem, responsible for substantial burden of illness and premature mortality. Did you know that a person can lose up to 90 per cent of their kidney function before experiencing any symptoms? Read more facts and statistics about CKD.

Fact Sheet: Kidney Disease in Rural Australia | Kidney Health Australia | Mar 2013 - It is estimated that one in three Australian adults is at increased risk of developing chronic kidney disease, and one in nine Australian adults has some sign of kidney disease. People living in remote and very remote areas of Australia have much higher rates of end-stage kidney disease than their metropolitan counterparts, particularly in younger age groups.

The Organ and Tissue Authority Donation and Transplantation Performance Report | Donate Life | 2012 - In 2012, 354 organ donors transformed the lives of 1,052 Australians. Read more about organ and tissue donation and transplantation activity in Australia. [PDF 1.85Mb]

Access to the Kidney Transplant Waiting List: A Time for Reflection | Internal Medicine Journal | Apr 2012 - The limited availability of deceased donor kidneys for transplantation in Australia continues to be a matter of concern. We explore possible reasons for these issues and call for new eligibility criteria that are both transparent and justifiable and balance equity and utility. Download this report by B.A. Pussell, A. Bendorf and I.H. Kerridge.

Monthly Report on Deceased Organ Donation in Australia | Australia and New Zealand Organ Donation Registry | Dec 2012 - Data Received by ANZOD up to 14 January 2013. [PDF 920Kb]

Summary of Organ Donation Per Year | Australia and New Zealand Organ Donation Registry| 2013 - Organs retrieved and actually transplanted in Australia and New Zealand from 1998 to 2012. [PDF 178Kb]

Spanish experience as a leading country: what kind of measures were taken? | Transplant International | Jan 2011 - A review of The Spanish model of organ donation and transplantation.

The future of organ donation in Australia: moving beyond the 'gift of life' | Parliamentary Researchh Paper | 3 Oct 2008 - The 'gift of life' doctrine insists that organ donation is an altruistic, egalitarian and essentially moral act. This paper argues that the 'gift of life' doctrine may be viewed as being flawed on a number of grounds, and that any changes made to Australia's organ donation and transplantation system in the future should be premised, first and foremost, on an understanding of the act of donation as that of a rational, autonomous decision-maker. By Matthew Thomas and Michael Klapdor. [PDF 436Kb]

The Allocation of Transplant Kidneys in Australia | TSANZ | Mar 2008 - The allocation of kidneys from a deceased donor to patients on the waiting list is determined by a computer program called the National Organ Matching System or NOMS. NOMS is administered by the Australian Red Cross. In most cases, only patients who have commenced dialysis will be eligible to be listed on the waiting list. Read more.

FURTHER READING

Organ donors to be paid six-weeks' salary | ABC News | 7 Apr 2013 - The Federal Government will trial a scheme to pay employees wanting to donate an organ a six-week salary on the minimum wage.

Mark Colvin's new kidney | ABC PM | 25 Mar 2013 - One of the ABC's most respected and loved colleagues, Mark Colvin, reflects on his life-changing kidney transplant - and the frenzy it created on social media.

Organ donation boost requires action, not just talk | The Conversation | 25 Feb 2013 - Family refusal is an important factor in Australia's low donation rates. Of the 710 families approached to provide consent for donation in intensive care units last year, 300 refused (42 per cent).

Organ donor campaign fails to boost numbers | ABC News | 22 Jan 2013 - A massive funding increase in recent years appears to have failed to help Australia meet its organ donation targets.

Patients may be asked about organ donation on hospital admission | The Guardian | 12 Oct 2012 - Patients entering hospital could be asked on their admissions form whether they wished to donate their organs for transplant under plans being considered by the NHS.

Spain's family bonds lie at the heart and soul of great healthcare | The Guardian | 31 Mar 2011 - Spain leads the world in organ transplants, but its success in the operating theatre is matched by its holistic approach outside.

Audio: Organ donations | ABC Health Report | 3 May 2010 - Every day three Australians die or suffer needlessly waiting for a transplant because we have one of the worst organ donation rates in the western world, but we could have one of the highest. This Health Report is a special feature by Aviva Ziegler on barriers which have been thrown up to this.

ORGAN DONATION INFORMATION

The Australia and New Zealand Dialysis and Transplant Registry - ANZDATA collects a wide range of statistics which relate to the outcomes of treatment of those with end stage renal failure.

www.anzdata.org.au/

The ANZOD Registry records and reports on data for deceased organ donors in Australia and in New Zealand. www.anzdata.org.au/anzod/

Australian Organ Donor Register Registration - The Donor Register keeps a record of individuals' donation decisions and of the organs and/or tissue they agree to donate. www.medicareaustralia.gov.au/provider/patients/aodr/

DonateLife | @DonateLifeToday - The Australian Organ & Tissue Donation and Transplantation Authority. www.donatelife.gov.au/

Donor Families Australia is an independent support and advocacy group. donorfamiliesaustralia.com/

Kidney Health Australia - Kidney Health Australia develops initiatives to save and improve the lives of Australians affected by kidney disease. www.kidney.org.au/

The Renal Resource Centre - www.renalresource.com

ShareLife Australia | @ShareLifeAus - Committed to saving Australian lives by establishing Australia as a world-leader in organ donation for transplantation. www.sharelife.org.au/

Transplant Australia | @TRANSAUS - Works in the areas of advocacy, awareness and support. www.transplant.org.au/

The Transplantation Society of Australia and New Zealand has as members, scientists, doctors, transplant coordinators and research students with an interest in all forms of transplantation. www.tsanz.com.au/

Links to all State Organ and Tissue Agencies. www.transplant-observatory.org/

Types of Donation | Donate Life - Read details and statistics relating to the different parts of the body that can be donated. www.donatelife.gov.au/types-of-donation