Jenny Ili was barely a teenager when she was diagnosed with a rare disorder that would fail her kidneys and tie her to a machine six hours a day, three times a week. Video / Dean Purcell
Jenny Ili was barely a teenager when she was diagnosed with a rare disorder that would fail her kidneys and tie her to a machine six hours a day, three times a week.
It was nephrotic syndrome, the same disease that afflicted and eventually took the life of All Blacks legend Jonah Lomu.
Now 41, Ili has been on dialysis for more than half her life.
"I've been on dialysis for 24 years," she told the Herald. "It came from out of nowhere."
Ili is one of 4,440 New Zealanders who used some form of dialysis in the past year, and the number is set to increase in what Kidney Health New Zealand calls a "tsunami of dialysis demand".
A new report commissioned by the charity projects a 30 per cent increase in the number of dialysis patients over the next 10 years, largely driven by the increasing prevalence of type 2 diabetes, a leading cause of kidney failure together with high blood pressure.
The report "Transforming Lives and Saving Money" says the problem disproportionately affects Māori and Pasifika, who make up 60 per cent of dialysis patients today.
Jenny Ili has been on dialysis for more than half her life. Photo / Dean Purcell
She was in her final year of intermediate school when she woke up feeling weird and could not run at PE. It wasn't until dinner time when her mother noticed the teenager's legs were completely swollen. They took her to the doctor and it started from there, rounds of tests at the hospital, visits to the specialist, rinse, repeat.
Doctors said she had nephrotic syndrome, a set of symptoms that occur when the filters of the kidneys do not work as they should.
Ili's family had never seen anything like it before, not in Samoa, where her parents were born. "There was nothing in the family. Nothing from dad's side, nothing from mum's side."
Ili said her mother did not believe it at first and called it "the white man's illness". She remembers the loneliness as a young person.
"Not being able to talk to anyone and thinking that you're the only person that's on it, that's had it. It felt just closed off. You wanted to join your cousins, doing things, like normal teenagers, but you couldn't."
She was lucky to get a kidney transplant in December the same year, but it didn't last.
"When I got that transplant, there was no support system. Being a teenager, thinking that you can do whatever you want to, drink, smoke, have fun, what a normal teenager would do, not knowing the consequences of not taking the tablets."
She had paid little attention to the plethora of immunodepressant drugs needed to stop her body from rejecting her new kidney. She had one year of freedom from disease, then her transplant failed.
"I blame myself because it was me. I regretted and wanted to go back and [do things differently], but I couldn't."
The 41-year-old goes for six-hour dialysis sessions three times a week. Photo / Dean Purcell
Ili has been on dialysis since then. She recalls hitting her lowest point about 10 years ago in a dialysis room, her body desperate for a clean but she just could not find a vein. "I was so swollen I couldn't get the needle in."
Ili is in a good place now, with a full schedule on top of her six-hour dialysis sessions three times a week. She works as a support worker for dialysis patients at the Auckland Kidney Society, able to relate, understand, and lift spirits because she has been there before, even though everyone's journey is different.
"My routine is wake up, go to work, come back home, have something to eat, go throw some hoops, or go to dance fitness, go to gym, go home."
She says what's kept her going are her friends and family, the nurses, doctors, and other kidney patients she has met along the way.
Last year she put herself back on the waitlist for a kidney transplant, after saying no to herself for more than a decade. She had feared being disappointed again, and had been comfortable with the life and routine that she had built around dialysis.
"When I turned 40 (last year), I thought, we have to do something. Life is too short."
Finding a match is difficult, she says, and doctors have told her she has antibodies that complicate the search. But she's waiting and living life day by day. "You never know when the call will come."
There are 462 New Zealanders currently waiting for a kidney transplant, according to the Kidney Health NZ report.
Despite being the majority of dialysis patients, Māori and Pasifika received far fewer transplants compared to other ethnic groups, and the equity gap is growing. Fourteen out of every 100 non-Māori and Pasifika dialysis patients secured a transplant in 2019. The figure was Māori was four, and for Pasifika 3.5.
"I look around Aotearoa's dialysis units and see far too many Māori and Pasifika patients who are clearly disadvantaged, who can't access the 'gold standard' treatment of a transplant" says Midcentral DHB nephrologist Dr Curtis Walker (Whakatōhea, Ngāti Porou).
Research shows Māori and Pasifika are less likely to be put on the transplant waitlist, and Walker says there's a need to look at the reasons why.
"There is clear disadvantage for Māori and Pasifika in terms of their ability to understand and navigate the system, get access to transplant waitlists, and get transplant surgery itself. We need to fix this - right now."
According to the Kidney Health NZ report, 221 transplants were carried out in 2019, and the health dollar savings of a transplant - which removes the need for costly dialysis - amounts to $400,000 per patient over six years.
Kidney Health NZ is calling on the Government to tackle the equity gap and increase kidney transplants overall, warning that a 30 per cent increase in dialysis patients over the next 10 years could cost the country $150m a year.
Ili supports other kidney patients at the Auckland Kidney Society by talking with them during their long dialysis sessions. Photo / Dean Purcell
Ili says she sees the increase in her daily work at the dialysis centre. "More people are coming in for dialysis than are getting transplants."
Māori and Pasifika know about diabetes and cancer, but there's just not enough awareness of kidney disease, she says.
"People don't realise you can donate your kidneys. And that's the main thing we need to get out, to push through.
