Ramiri Paul (inset) has been on dialysis for two years and is one of 400 New Zealanders on the Kidney Transplant waiting list.
Ramiri Paul (inset) has been on dialysis for two years and is one of 400 New Zealanders on the Kidney Transplant waiting list.
Wāhine Māori Ramiri Paul is one of the 400 New Zealanders on the kidney transplant waiting list.
The killer disease was in the headlines a fortnight ago when Te Pāti Māori MP Takutai Moana Tarsh Kemp died suddenly. Kemp was also on the kidney transplant waitinglist.
Takutai Tarsh Kemp.
Chronic kidney disease affects 1 in 10 people in Aotearoa and Kidney Health NZ says it could become the fifth leading cause of death here by 2030 if not seriously addressed by health officials.
Paul (Tūwharetoa ki Kawerau, Ngāti Pūkeko & Te Whānau a Apanui) has been on the waiting list, her life hanging in the balance, since 2022.
“An aunty received a kidney transplant but my mum died waiting,” Paul, 40, told the Herald.
Whānau and friends have offered to donate a kidney to Paul. Her partner of 23 years, Jared, had the most compatible kidney - but was ruled out after follow up tests.
Ramiri Paul with partner Jared and children Tame and Beau.
Paul remains hopeful a compatible donor will be found.
“I try to be thankful for the things I do have like great kids and whānau support and even that I can do my dialysis at home,” she said.
“Apart from the kidney disease, I’m in good health.”
Paul knew she would develop PKD and ultimately need a kidney transplant.
“My mum had me tested when I was 20 and was told I was likely to develop it but was told to carry on and live my life,” Ramiri said.
In 2018, blood tests confirmed her kidneys were enlarged and had cysts, and she started dialysis in 2023.
“It has been rocky, and I’m not sure if it has made it any easier knowing I would develop PKD,” Paul said through tears.
Paul said when she first started dialysis it freaked out her two children Tame (12) and daughter Beau (10).
“Seeing my blood in the tube was tough on them but me starting dialysis at home has helped me normalise my condition.
“It’s more flexible [and] we can try to have as normal a family life as possible. I can do it at home for 8 hours a night, while I’m sleeping, 3 times a week.”
I want to live a full life where kidney disease is part of my story but doesn’t define it
Paul said she is grateful for her whānau and partner Jared.
“When you asked what keeps me positive I said gratitude, but honestly it’s my kids, and partner who has been absolutely amazing,” Paul said.
“We were living in Invercargill when all this went down and moved back to Kawerau because we knew we would need that whānau support.
“Our whare is filled with love and laughter and that sustains me through the tough times. I want to live a full life where kidney disease is part of my story but doesn’t define it. My deepest wish is to live to meet my future moko. My mum passed away before Tame and Beau were born.”
In 2024, 70 people donated organs following their deaths in Aotearoa, leading to 213 people receiving lifesaving kidney, liver, lung, heart, and pancreas transplants.
Dialysis costs about $70,000 a year and a kidney transplant also costs around $70,000 - the cost covered by Health NZ.
Sophie Hutana received a kidney from her partner Tom Hutana - now her husband, nine years ago. Donating body parts runs in her whānau.
Grant Kereama donated a kidney in 2004 to his All Black mate Jonah Lomu, who died in 2015.
She’s related to Grant Kereama - the man playing the trumpet in the Lotto adverts - who famously gave All Black rugby legend Jonah Lomu one of his kidneys.
Kereama’s sister Justine donated a kidney to a Whanganui nine-year-old, the daughter of a childhood friend.
Sophie and Tama had only been together two years when he donated to her, saving her from a lifetime of dialysis - and they now have two children together Ahi, 6 and Koa, 4.
“I live a very normal life now,” Sophie told the Herald.
Dialysis can be done at the hospital or home.
Donating his kidney meant Tama gave up rugby for a season, and took sick and annual leave for his weeks of recovery.
The couple were given three weeks’ notice of a transplant date. Sophie was by Tama’s side as he was wheeled into the operating theatre at Wellington Hospital on October 5, and he was waiting in her room after her operation.
Four well known Kiwis who suffered from kidney failure include Jonah Lomu, Georgina Beyer, Kingi Tuheitia and Takutai Moana Tarsh Kemp.
Sophie’s message to anyone considering becoming a donor is: “Giving an organ is daunting but you can change someone’s life.”
Joseph Los’e is an award winning journalist and joined NZME in 2022 as Kaupapa Māori Editor. Los’e was a chief reporter, news director at the Sunday News newspaper covering crime, justice and sport. He was also editor of the NZ Truth and prior to joining NZME worked for urban Māori organisation Whānau Waipareira.
