‘A goodbye just in case’: The father of five who leaves home not knowing if he’ll return
Sunday, 30 November 2025
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A father’s fight to stay alive on overnight dialysis is exposing a growing kidney disease crisis - and fuelling calls to fund a drug experts say could slow the disease. Mildred Armah reports.
When Tyson Ropeti leaves his home in west Auckland three nights a week, he hugs his wife goodbye knowing there’s a chance he may not return in the morning.
The 34-year-old father of five lives with polycystic kidney disease, an inherited condition that has taken over his life and now dictates every hour of his week. He spends six-and-a-half hours overnight at Auckland Hospital every Monday, Wednesday and Friday, hooked up to a dialysis machine that keeps him alive.
“Every time I leave home, it’s a goodbye just in case, and that’s just my reality. I’m grateful I’m alive, but I’m also worried the next time I go, I’m not coming back,” Ropeti tells Stuff.
“It’s scary. There are people who have been on dialysis overnight who never wake up. A heart attack just takes them as they sleep.”
Ropeti said he was diagnosed two years ago after experiencing severe abdominal and back pain. He was rushed to hospital from work, sedated for days, and woke to find doctors had inserted a line in his neck and started dialysis before he was even conscious.
Now, the routine is relentless. He leaves home around 9pm, slips out quietly so his children don’t see him go, and drives back at dawn in time for the school run.
“I chose overnight dialysis so my kids wouldn’t realise I’m gone. They go to sleep and I’ll come home before they wake up so they won't know or feel I'm missing for the six-and-a-half hours in between.”
Still, the toll is immense, Ropeti said. The disease and treatment leaves him exhausted, unable to continue working, and struggling to walk long distances as calcium loss weakens his bones. Family outings are often impossible - walking from a distant car park or to a school event can be too painful, he said.
“My kids suffer because of my condition which has affected us as a family. I miss out when they go out and I have to stay home.”
Two of his five children have inherited the same disease. They are still young, active, and symptom-free, but Ropeti lives with the fear they could face the same future.
“I always tell them: ‘You don’t want to end up like me. But If you don’t look after your kidneys, this is what happens.’”
He said kidney disease is taking a quiet toll on Pacific families, often because people don’t realise they’re at risk until it’s too late. His own mother has the same condition, but he never knew to get tested.
“As a community, we need to understand the kidney better and make better choices with food and how we live. The kidney does a lot more than just clean the blood,” Ropeti said.
Before he became sick, Ropeti said he was drinking protein shakes after hitting the gym, thinking he was doing the right thing - only to discover the supplements were quietly damaging his kidneys. Now, with time to reflect, he wants people to take small steps sooner - beginning with an early kidney test that could spare families the ordeal he’s living now.
“It’s just a blood test and a urine test. That’s all.”
He hopes eventually to receive a kidney transplant, but he must first qualify by losing weight. After an earlier rejection, he has now been approved for publicly funded bariatric surgery and is waiting for a date.
“That’s my hope now - lose the weight, get a kidney, and one day live a normal life with my wife and children.”
Ropeti’s experience sits at the sharp end of what experts say is a rapidly escalating – and largely invisible national crisis. A new report, Can’t Afford Not To: Tackling the real cost of chronic kidney disease, commissioned by Boehringer Ingelheim, warns that chronic kidney disease is estimated to affect one in 10 New Zealanders and that demand for dialysis is expected to rise by around 30% over the next decade.
The report estimates that earlier intervention could prevent or delay dialysis for more than 100 people each year, and avoid over 10,000 hospitalisations, 1000 emergency department visits and hundreds of deaths annually. It argues that too many people discover they have kidney disease only once they have lost most of their kidney function.
Its authors, alongside kidney specialists and patient advocates, are calling for Pharmac to fund the drug empagliflozin for people with chronic kidney disease - not just those with type 2 diabetes or certain heart conditions.
They say the medication has been shown to slow kidney decline, protect the heart, and help keep people well and out of dialysis for longer, particularly high-risk Māori and Pasifika families who face 3-5 times higher chronic kidney disease death rates.
Madi Keay, Kidney Health New Zealand general manager, said empagliflozin is one of the few tools that can genuinely slow the progression of chronic kidney disease before people reach crisis point.
“[Empagliflozin] could slow the need for dialysis by up to 10 years per person which is hugely significant, and when it’s used in conjunction with other tools, especially around early detection, then there's perhaps even longer that [kidney] decline could be delayed by.”
In a statement to Stuff, Claire Pouwels, Pharmac’s manager of pharmaceutical funding, said the agency understands how difficult it can be when people are living with a serious health condition and need access to medicines.
“Pharmac has been working to expand access to empagliflozin. In 2021, we funded it for type 2 diabetes, and in 2024 we widened access to people with a type of heart disease,” Pouwels said.
“We received an application to fund empagliflozin for [chronic kidney disease] in May 2023. It was assessed by our expert advisers in August 2023 and recommended for funding with a high priority.”
That was based on the high health needs of people with chronic kidney disease, and clinical evidence that empagliflozin can slow kidney decline and reduce hospitalisations, Pouwels said.
She said the medicine is now on Pharmac’s Options for Investment list, but when - or if - it can be funded depends on the available budget, supplier negotiations and how it is prioritised.
Health New Zealand said it is working to strengthen early detection and expand renal services, including new community dialysis options and upgraded facilities.
For Ropeti, the thought of medicines that could slow kidney decline - especially for the two children who share his diagnosis - immediately makes him picture the lives they could still have without the shadow of dialysis looming over them.
“I just want my kids to have a chance to not end up on dialysis like me.”
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