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When the gift of life becomes a death sentence
« on: June 16, 2013, 03:18:30 AM »
When the gift of life becomes a death sentence

June 16, 2013
John Elder

Karen Wilkinson was in the supermarket, not sure what was needed at home. She turned on her phone to call her partner, Rae Moran, for a shopping list. The phone had been switched off because the couple had attended a concert the night before. Wilkinson found a string of messages from the Royal Melbourne Hospital. A suitable kidney donor had been found, and if she'd only get in touch the surgery would occur almost immediately. ''If she'd waited another half an hour to turn on the phone, she would have missed the opportunity,'' Moran says.

That was December 4, 2006. As Moran later said in her statement to police: ''It's one of those life circumstances which initially seem to be really lucky but in hindsight turn out to be very unlucky.''

Earlier that day, transplant surgeon Michael Fink had retrieved the liver and kidneys from the body of Jovo Vranjesevic, newly dead from a massive stroke. His heart wasn't deemed fit as a transplant organ, nor were his lungs because, as Fink later said in his statement to the coroner, Vranjesevic ''was a smoker, with recent weight loss and was hepatitis B core antibody-positive''.

Illustration: Mick Connelly
Over the next few hours, the liver was transplanted into Gurpal Sandhu at the Austin Hospital. One of the kidneys went to Carmelina Sirianni, also at the Austin. The other kidney went to Karen Wilkinson.

Moran was at work when she received an urgent text that her partner was on her way to hospital. Moran didn't see Wilkinson until she was coming out of surgery, about 10pm. Rather than being drowsy, Wilkinson was wide awake and excited about a brand new life. Because of the demands of dialysis, she'd been unable to work for several years, and was already weighing up whether to go back full time or part time and thinking, too, of great places to go on a holiday. Moran was startled at this burst of energy and excitement. A nurse explained: ''It's OK, it's just the drugs.'' Regardless, after 20 years of illness, Karen Wilkinson heard freedom calling.

About four weeks later, on New Year's Day, 2007, she was dead. Within six days, so were Sirianni and Sandhu. And so began for Moran, and the families of the other dead women, a seven-year wait for answers.

On May 7, Victorian Coroner Audrey Jamieson found that the women had died from a virus - lymphocytic choriomeningitis, known as LMCV - spread by rats and mice and ''not previously seen or seen since in Victoria''. Vranjesevic had contracted this virus while visiting his mother in Serbia. He had lost 15 kilograms over three months, and had become tired and lethargic. The coroner found ''the deaths from this novel arena virus of the three organ recipients … was neither foreseeable nor, in all probability, preventable''.

Moran accepts that once the infected organs had been transplanted, Wilkinson and the other women were doomed. Indeed, LMCV infection in transplant recipients almost always results in death - in three clusters reported in the US from 2005 to 2010, nine of the 10 infected recipients died.

On the face of it, the three Melbourne victims were, as Moran put it, very unlucky. However, she continues to be troubled by one question: would Wilkinson have accepted the offer of a kidney from this donor if all the known facts were communicated to her - that is, facts regarding the health of the donor and his organs that were unrelated to the virus? But the coroner found that not even the surgeons had a full picture of Vranjesevic's health, that there were issues, later identified, that may have influenced their decision to proceed.

Jovo Vranjesevic was 57. He had a history of hypertension, irregular heartbeat and heart attack. He also had high cholesterol. He smoked cigarettes. (And, as noted above, he died of a stroke.) The night before he died, he went out dancing with his wife, Dusanka. However, he'd been lethargic, tired, lost his appetite, experienced recent dramatic weight loss and was complaining of a pain in his right arm - that is, suffering the symptoms of the LMCV-like virus that is fatal in less than 1 per cent of cases.

In the inquest findings, it is noted Dusanka Vranjesevic couldn't recall being asked about her husband's health before he died. However, a daughter, Daniella, was interviewed via telephone by Violet Marion, organ donor co-ordinator for DonateLife (the agency attached to the federal government's Organ and Tissue Authority). Marion said it was apparent that Dusanka was in the room, and contributing to the conversation from the sidelines.

Part of Marion's job was filling out the Confidential Donor Referral Form, which includes the donor's medical history. The coroner mentioned ''other matters identified that related to Vranjesevic but were not reflected in the CDRF and which may well have been of assistance to those conducting the transplantation process''.

These matters included:

❏ At Dandenong Hospital, where Vranjesevic was taken after his collapse, he had a temperature of 38.3 degrees, an indicator of possible infection. However, Professor Robert Jones, the director of the Liver Transplant Unit at the Austin, noted ''fever is not uncommon in our donor population''.

❏ While in Serbia, Vranjesevic complained of headache. Jones gave evidence that ''a new onset of unusual headaches over a sustained period would have … added to perhaps us thinking about what was going on with the particular donor''.

❏ Vranjesevic's daughter Gordana told of the pain he had complained of in his right arm and leg. Jones, in evidence, noted, '' … if we had heard that story from his mother or while he was in Serbia, it perhaps would have added to our concern''.

❏ In the 10 days after his return from Serbia, Vranjesevic had complained of lethargy. Again Jones noted: ''It certainly would have added to our concern if there was a known risk that the patient was unwell in addition to weight loss.''

However, Jones noted that: ''Whether it would have influenced our decision to the point we said we should not use this donor because of a hidden potential risk, I'm less certain of that.'' Later, in giving evidence about the quality of Vranjesevic's organs - and he regarded his liver as ''a very good organ … it worked very well'' - Jones touched on the prevailing attitude in the transplant community, which is forced to make compromises because of a poor donor rate and growing waiting lists: '' … we would have to feel there is a significant risk in the donor before we would turn the donor down … Every donor we accept, we're accepting risks that this organ may not work or it may transmit disease or it may cause other problems and we're weighing that against a recipient who may die otherwise.''

Organ transplants were once a matter of last resort. In the early days of transplantation, donors were generally young and healthy - a beautiful youth, say, with a head wound from a car accident. In the 1990s, things began to change.

The success and evolving sophistication of transplant techniques has made transplantation, especially of kidneys, commonplace. If only there were enough to go around.

Scott Campbell is a Brisbane specialist physician and chairman of the Renal Transplant Advisory Committee for the Transplantation Society of Australia and New Zealand. He says there has been a gradual change in the quality of donor organs, in part because seatbelt laws and better head injury treatment have meant fewer trauma donors. Until the early 1990s, ''only the fittest patients got a transplant, and more organs were of excellent quality. There was still some variation. The number of more marginal donors and recipients has grown over the last 20 years''.

Eventually a name was given to certain donors who historically wouldn't have made the cut: an expanded (or extended)-criteria donor is a donor more than 60 years old, or who is more than 50 years old and has two of three risk factors: hypertension, reduced kidney function and death due to stroke.

Campbell says: ''[ECD] was a term introduced to help to define a group of donors whose organs were already being used and which may give slightly lesser outcomes from transplantation than standard-criteria donors [SCD].''

Campbell says ECDs have been used for years, ''long before anybody ever made up a name for them''.

According to Campbell, ECDs were first reported in 1994. By 2010 there were 92 ECDs (or 31 per cent) from a pool of 293 donors. ''This figure has generally been rising over the years,'' he says.

Organ quality, Campbell says, is a continuum, and the ECD criteria an incredibly blunt tool.

He says 80-year-olds (encouraged on the DonateLife website to sign up as donors) have potentially been able to donate for a long time. ''Obviously only a very select minority of 80-year-olds would be suitable. They can be very good kidneys for the right recipient. One other strategy that can be used with very elderly donors or donors with comorbidities [the presence of one or more disorders] is to transplant two kidneys into one recipient.''

What does all this mean in terms of survival rates and transplant success? US researchers found, in a paper titled The Alphabet Soup of Kidney Transplantation, that ''an ECD kidney transplant recipient has a projected added lifespan of 5.1 years compared with 10 years for a kidney recipient from a standard criteria donor''.

Campbell says Australian transplants have a higher success rate than in the US, including those done using ECD organs. ''In the US, ischaemic times [the time the kidney has no blood circulating between donation and implantation] are typically quite a lot longer than in Australia because of how their program is organised. This can potentially exacerbate any issues … because marginal kidneys will deteriorate more than better-quality kidneys if left ischaemic for longer periods.'' However, he agrees that, on average, implanted ECD kidneys don't last as long as other kidneys.

''Most kidneys will fail if you follow them long enough. The average graft survival for a deceased donor kidney is 13 to 14 years. Fifty per cent of all deceased donor kidneys have failed - either because the kidney has failed or the patient died - after 13 to 14 years, and 50 per cent continue for longer.''

Campbell doesn't usually tell his kidney recipients if their donor is ECD. Few, if any, Australian clinicians are thought to make this explicitly clear. ''My job, as a specialist in the area, is to try to help them understand the issues as they relate to them.''

He says he'll tell his patients: ''An average kidney lasts about 14 years and I think that this kidney is about average.'' Or: ''This kidney is not quite as good as average, but it should be good for seven to eight years.''

This is different from the US experience. American transplantation centres have a scheme in which people on a donor waiting list are asked in advance if they are willing to receive an ECD organ. If so, they are required to give their informed consent.

In an email, the American Journal of Transplantation said: ''It is [United Network for Organ Sharing] policy that patients receiving an ECD kidney be informed that the kidney is an ECD kidney.''

Should Australia be following the US example? Campbell says: ''I would suggest that ECD consent need not necessarily include the term ECD, but should provide the important information in a manner that the patient will understand.''

In Australia, a patient being prepped for surgery, such as Karen Wilkinson, will have already been well informed of the general risks of transplantation, and there may have been some discussion as to the range of organ quality - but Rae Moran doesn't recall this being the case. She attended the information sessions with Wilkinson, and still possesses the information booklet, which makes no mention of ECDs, but talks of varying potential lifespans of the kidneys.

Does this matter? In many patients, worn out by dialysis and hearing the call of death, any chance for life is worth taking. As Campbell says: ''There are some quite elderly dialysis patients who are not ideal for a transplant but would like a chance at any sort of kidney if possible. [Some patients are] prepared to take on a 50 per cent risk of not surviving if it [gives] them the chance for just a year or two off dialysis.''

But Karen Wilkinson wasn't in such straits, Moran says. She was doing well on dialysis. Furthermore, she had a body that tended to complicate even the simplest procedure - and therefore may have thought twice about receiving a kidney from a donor in the ECD category. And Jovo Vranjesevic was in that category.

Wilkinson, 44, married at 19. The mother of four children, blessed with a quick wit and clever mind, had been ill since her 20s, with polycystic kidneys - a hereditary condition in which the kidneys are riddled and enlarged by fluid-filled cysts, and eventually deteriorate. When she began living with Rae Moran in 2003, she was on peritoneal dialysis, which is a more portable form of treatment than the hospital-based haemodialysis, whereby patients are hooked up to a machine three times a week.

In 2005 Wilkinson had a parathyroidectomy, a procedure that should have kept her in hospital for no more than four days. She was there for six weeks. As a result of the complications, she needed haemodialysis in hospital.

Overall, she was feeling better and the new regime suited her quite well.

Until she was placed on haemodialysis, Wilkinson didn't seriously consider a kidney transplant - partly because she did not want to give up smoking - but the haemodialysis was more restrictive, compromising her ability to find part-time work or go on holiday.

After attending an information session, although still apprehensive, she decided to pursue the possibility of a transplant as an opportunity for a different lifestyle.

On December 4, 2006, transplant surgeon Michael Fink noted that the kidneys he removed from Jovo Vranjesevic had ''severe atheroma (fatty swellings) including the orifice of the renal artery in each kidney. This can potentially increase the risk of vascular thrombosis following transplantation and therefore I contacted the recipient surgeons and advised they assess the kidneys prior to implantation.''

He also noted multiple small renal cysts and that Jovo Vranjesevic was hepatitis B core antibody-positive.

Moran believes the condition of the donor kidney should have been discussed with Wilkinson.

In evidence, she said: ''In relation to this issue of consent … the generic risks were well covered in the pre-transplant process but the donor clearly had a severe problem with the renal arteries … this obviously was judged to be acceptable by the medical teams and it wasn't discussed with Karen.

''I/we/she, prior to even going on the transplant list, were worried about her body's ability to make straightforward things very complicated and if it was kind of a borderline kidney and she knew about it, she might have thought twice about it.''

The kidney never worked. After eight days, it showed signs of rejection. By then Wilkinson's bowels had stopped working. After a number of further operations, the kidney was removed on December 21, Wilkinson's birthday. By that stage she was lapsing in and out of consciousness. By Sunday, December 31, she was highly fluid-overloaded, affecting her blood pressure, according to Moran's notes.

''It was about 10pm, that night when the intensive care doctor actually knelt down next to us and told us that we can't really do this for very much longer. Everything was being supported and it came to the point where we needed to decide that it was OK to turn off the machine because there was no further hope.

''So just after midnight the machines were finally turned off.''

Read more: http://www.smh.com.au/national/health/when-the-gift-of-life-becomes-a-death-sentence-20130615-2oav4.html#ixzz2WMRdUpob
Daughter Jenna is 31 years old and was on dialysis.
7/17 She received a kidney from a living donor.
Please email us: kidney4jenna@gmail.com
Facebook for Jenna: https://www.facebook.com/WantedKidneyDonor
~ We are forever grateful to her 1st donor Patrice, who gave her 7 years of health and freedom


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