Robin Howarth is living life 10 days at a time, as he waits for a new kidney.
The 53-year-old from Porirua is one of hundreds of Kiwis hoping for relief from the cycle of dialysis that keeps them alive.
Howarth says he has been on the waiting list for a year, after spending the previous six years losing enough weight to make the list.
But he has no idea where on the list he sits. "Once you end up being told you are on the list, you spend the first six or seven months sitting by the phone because you are waiting for the magic phone call.
"There is no way of checking if you are actually on the list, let alone where you are on the list.
"I can't ring up and tell them who I am and ask them to confirm I'm on the list or where I am on the list. It's an invisible system you have to just put up with."
People waiting for a transplant could also be bumped off the list and would not necessarily know, he said.
"They think they are on the list and, when they make further inquiries, they get told, 'No, you were taken off because your weight went up or health deteriorated'."
Howarth's frustration follows a report labelling the system that determines which patients get a lifesaving organ transplant as ethically questionable, and which could create "false hope" among those on the waiting lists.
The National Ethics Advisory Committee has raised concerns about the organ donor system in New Zealand, sparking the Associate Health Minister Peter Dunne to order a review.
"I absolutely support a review," Howarth said.
"The donor process in New Zealand needs to be put in a big jar and shaken up," Howarth said.
"I've known people who have gone to Australia because they could get a transplant quicker.
"A transplant would give me back 90 per cent of my life."