The challenges Māori face getting a life-saving kidney transplant

Poor health has claimed the lives of many of Charlie Tipiwai's whanau.

"They were like me, they were rotting from the inside out."

Charlie is the only one of his eight brothers still alive and he misses them every day. The 60-year-old is thankful that he got on a transplant list for a new kidney, despite initially being reluctant.

"When I had my kidney transplant I always wanted to share my journey with people because at that time I knew a lot of our people are scared of transplants."

And that was the motivation for Charlie to be a guest speaker at the Hawke's Bay District Health Board's transplant hui, where he talked about the kidney transplant he received from an anonymous, deceased donor nine years ago.

"I thought to myself, once I got the kidney, well he didn't make it, so I'll live for the both of us," he says.

Charlie Tipiwai.
Charlie Tipiwai. Photo credit: The Hui

The hui is the first of its kind where both health professionals and whanau talk openly about organ donation and the challenges Māori face getting a life-saving kidney transplant.

Around 4500 New Zealanders have end-stage kidney disease, and this number is increasing by five percent every year, with Māori and Pasifika more likely to have renal failure than any other ethnic group. 

Dr Curtis Walker is the only Māori nephrologist or kidney specialist in the country and says kidney transplantation is widely recognised as the best way of treating kidney disease or end-stage kidney disease.

But despite being most in need of donor kidneys, Māori are the group with the lowest rates of organ donation.

"I have experienced what it's like to be diagnosed with end-stage kidney failure, and hearing perspectives from different people on how they think we can improve donor rates and improve Māori transplant rates, that's a big importance to me," says 33-year-old Tania Williams.

Tania Williams.
Tania Williams. Photo credit: The Hui

The renal unit at Hawke's Bay Hospital was a second home to Tania, her younger brother Anaru was by her side at her appointments, providing strength and support.

Tania is five years older than Anaru, but is more like a mum to him.

"We were removed from our family at a young age, so the four of us were very tight-knit," says Tania.

"She looked after all of us. She was our big sister in our life, and still is," adds Anaru Williams.

So it was devastating news for Anaru when his big sister was diagnosed with advanced kidney failure, and he was first in line to give one of his kidneys to her.

"I saved her, but it was a gift for saving my life. I wouldn't be the person I am today if it wasn't for my sister and her husband," he says.

But even though it would save her life, Tania was worried about what losing a kidney would mean for Anaru's health.

"That was my concern - is my brother going to be alright? That was my biggest concern, and when I was informed that he would be OK, that you can live with one kidney, that made my heart at ease," she says. 

"They can live happily and healthy afterwards and even after the operation and I saw my brother pretty much up and running within two weeks."

Curtis Walker.
Curtis Walker. Photo credit: The Hui

Tania wants to dispel some of the myths when it comes to whanau reluctance and encourage them to take part in organ donation.

"I'm shocked to know that we're not having many people on the deceased donor list; that Māori rates are the lowest possible. I'm shocked to know that young, Māori people are dying because they don't have the option for transplant," she adds.

"We shouldn't have people dying when they have a chance for life."

Kidney failure disproportionately affects Māori and some medical experts say the inequities in our health system are part of the problem.

"One of the big barriers is our own health system - how it's set up, how accessible it is for Māori, how Māori feel comfortable within that system to express their wishes. I think there's a lot of work that we can do within our system," says Dr Walker.

"Māori don't want kidney transplants, Māori are too unwell and sick for kidney transplants, and whanau are too unwell to donate kidneys. Those are all the issues and part of the big picture, but I think we actually have to look at how our health system responds to Māori at the end of the day."

Making the donation and transplant process more user-friendly for Māori is something medical professionals taking part in this groundbreaking hui want to see happen.

"One of the problems with our health system is it brave enough? Does it feel confident enough and capable enough to have those culturally safe conversations and korero with Māori patients and whanau. So it's tough with anybody, but I think our health system does find it tougher with Māori, but we need to be better than that," Dr Walker says.

The Olsen whanau had those tough conversations - their transplant story was very much a family affair.

Dakoda (Cody), 23, received his kidney from twin brother Phoenix.

"We've always had a strong bond with each other. Seeing him go through all this pain and struggle it just tore me apart. I just wanted to step up and just help out, not also on him but also my mother, everything that she's gone through with it," says Phoenix.

Their mum Rowena made sure the entire whanau were included. 

"I made everybody be a part of the journey with Cody, so Cody would not feel like he was on his own, and he knew he had the support from his sisters, his brother, his aunties and uncles, which is really awesome and that he knew the journey, he wasn't going to be walking it by himself," Rowena says.

Cody's transplant challenged Rowena's cultural beliefs and prompted a change of heart. 

"We were taught by our old people that we came into the world with everything, you go out with everything. Well times have changed now, so we need to change our outlook on everything. We're not going to use it on the other side, so why not?" 

But not enough Māori are willing to be organ donors once they're gone. Last year there were 62 deceased organ donors in the country and of these, just seven were Māori.

"My mindset has changed. I want to be on that list as donor when I do pass on, and hopefully I can help someone else along the way," Rowena says.

Four-hundreds and twenty people are currently on the waiting list for a new kidney and Glen Ihe is one of them. He's been on dialysis treatment on and off for 22 years.

"It started off four hours but over the years it just got more and more. It is what it is, you have to do what you have to do," Glen says.

Glen's first transplant failed 10 years ago, and he requires three five-hour treatments a week while he's in line for a second kidney replacement.

"I'm fine waiting, if one comes, one comes. If it doesn't, it doesn't. There's no fear of death, but I'll embrace life as much as I can," he says.

I'm actually thankful that whoever invented this has given me the opportunity to see three of my grandchildren born…if I didn't have this I'd be, not here."

Tania Luscombe is also playing the waiting game for her transplant. For her, finding the kidney isn't the problem - her partner Anna is a perfect match - but she's been told her transplant is another six months away.

"Which is different to waiting for a kidney to become available. We know that there is one there, but you don't know when it's going to happen," Tania says.

Although Tania might look fit and healthy, her health is in decline.

"I guess that's why they call it the invisible disease, because I can otherwise operate quite well, look well. It's probably when I come home, it's probably my partner that sees the impact of my illness the most," she says.

Sophie Hutana was diagnosed with renal failure at just 18. Her life was days of being well, weeks of feeling sick.

She thinks whanau need to be made aware of how relatively simple the transplant operation is for both donor and recipient. 

Sophie Hutana and Ahi.
Sophie Hutana and Ahi. Photo credit: The Hui

"I didn't know anything about renal transplants prior to it happening for us. There's not enough news about kidney transplants and the successes and I think that prevents a lot of kidney transplants actually happening," Sophie says.

"You can have a perfectly healthy life with one kidney. I don't think that people actually are aware of that".

Sophie's just celebrated her three-year transplant anniversary - and has never felt better after her husband Tama donated one of his kidneys.

Not only has it given Sophie a second chance at life, she and Tama welcomed a new life: their baby boy Ahi who's now 10 months old.

"He is the apple of our eyes. He's just the most perfect little boy. Sharing our story might change one person's mind, and might give someone a life," Sophie says.

"The more that we can get that message out there to patients and whanau to think about having a kidney transplant, and being a donor for one of your whanau who is suffering from this terrible condition, that's what we need to do," Dr Walker says.

The Hui