Organ failure
Trying to change attitudes to transplants
Toni Hadlee has had kidney disease her whole life – but she has never let it slow her down. She even spent 10 years overseas with no problems.
But in 2014, the Mt Maunganui mum’s condition worsened. Her kidney function went from 30 per cent to 6 per cent and this year a chronic itch related to renal failure began. The hunt for a kidney was on.
‘‘That was the thing that sent me over the edge and I knew I was failing big-time,’’ Hadlee, 41, says.
Kidney, heart, lungs, pancreas and skin – if you’ve got it, you can donate it.
But as a country, New Zealand is lousy at organ and tissue donation.
About 500 people sit on the organ transplant waiting list and although there has been a steady increase in deceased organ donors in the past five years, the number is still a lowly 53.
New Zealand Europeans made up 46 of the donors, five were Maori, two were categorised as ‘‘other’’ and there were no organ donations from Pacific people.
Right across the ethnic spread, New Zealanders are appallingly poor donors. While half the driving population indicate on their driver’s licences they are willing to donate organs, we’re at the low end of the organ donation spectrum compared with other countries.
There were just 11 deceased donations per million people in 2015. In Australia, it was 18 and in Spain, 39.
In the same year, 77 transplants were performed in New Zealand with organs from live donors.
To increase those numbers, a bill to compensate live organ donations has been introduced to Parliament, where it has just passed its third reading, and a review into deceased organ donation is under way.
National list MP Chris Bishop, who sponsored the bill, wouldn’t put a figure on how many donors were needed but said ‘‘we’ve got to do better’’.
‘‘We want to try and create a culture like we have over the last 20 or 30 years around drink driving. We want to try an raise more public awareness and get people talking about it,’’ Bishop said.
Northland GP and 2014 New Zealander of the Year, Dr Lance O’Sullivan, wants to talk about it too, particularly in Maori communities.
‘‘How do we get Maori to see the value in organ donation given that our need for receiving organs is so incredibly high?’’ O’Sullivan said.
A ‘‘big problem’’ but by no means the only concern for Maori are cultural concerns of tapu and whakapapa.
But thrusting those concepts into the spotlight was the November 30 kidney transplant for the Maori King Tuheitia, donated by his son Korotangi Paki, 21.
Tuheitia and Paki have both been discharged from hospital and are recovering at home now, but the king’s health concerns are well known.
He underwent diabetes related weight loss surgery in 2013 and in 2014, during a Koroneihana speech, he talked about having cancer.
In the previous six months, though, Tuheitia was described as being almost handcuffed to a dialysis machine.
Tuheitia is a ‘‘great door-kicker’’, O’Sullivan said, and is being seen as a catalyst for changing cultural perceptions some Maori have about organ donation.
But because the donation was given from son to father, it ticks a few cultural boxes.
‘‘I would say this is one of the low-level examples of organ donation because it is within whanau,’’ O’Sullivan said.
‘‘It’s a simple process and from a cultural point of view, there are no huge challenging questions, but what if it was the king receiving one from a member of the public who may not even be Maori?’’
The discussion needs to be had about how Maori donate. It’s the ultimate koha of life, he said.
‘‘The question is, what if organ donation didn’t diminish tapu but enhanced it?’’
It is a myth that cultural concerns discourage Maori from donating, said Janice Langlands, donor coordinator at Organ Donation New Zealand.
Maori make up around 10 per cent of donations – a figure ‘‘not too dissimilar’’ to the Maori proportion of the general population.
In fact, a Ministry of Health discussion paper – Ethnic, cultural and religious differences in relation to deceased organ donation – says ‘‘it appears organ donation is less likely to be raised with families of
It changed mine and my little brother’s relationship considerably. First, he was a little bit resistant and freaked out, not knowing what it involved.
potential Maori and Pacific donors’’.
‘‘Probably, there was a misconception that they wouldn’t agree to donate,’’ Langlands said.
‘‘If you don’t ask, of course they are not going to say yes so it perpetuates the myth that Maori and Pacific people don’t donate.’’
Hadlee’s parents were rejected as donors. They were too old and their kidneys weren’t strong enough.
Her older brother was prediabetic and was refused. That left her younger brother who, after testing, was found to be a match.
‘‘It changed mine and my little brother’s relationship considerably,’’ Hadlee said. ‘‘First, he was a little bit resistant and freaked out, not knowing what it involved.’’
Preparation for the live transplant began. It took about a year to get through all of the tests leading up to the April 27 surgery.
The donor is assessed to see if they are healthy enough, that the kidney is working well and that they are emotionally and physically prepared.
Throughout it, Hadlee felt ‘‘massively guilty’’. Now, she and her brother are closer than ever.
‘‘We were always taking the piss out of each other anyway so there is the potential for a joke to go a little bit wrong or one person to get a bit more sensitive about something.
‘‘It’s such a precious subject. We were dealing with life and death.’’
Toni Hadlee