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Updated June 30, 2015 19:12:04
When Jill Mununggurr learned home dialysis to help her sick husband Morgan, she became among the first to do so in her remote Northern Territory community — Yirrkala.
She then taught her husband and their three daughters how to clean Morgan's blood several times a day by injecting bags of fluid through a stomach catheter.
"It was giving knowledge to the younger generations," Jill said.
It also meant that Morgan could go hunting again.
"When we went camping, we used to take [dialysis] bags out with us fishing," Morgan explained.
"We'd camp out in the bush with a couple of boxes and then, when we ran out of water, we'd come back home."
When we went camping, we used to take [dialysis] bags out with us fishing. We'd camp out in the bush [and] when we ran out of water, we'd come back home.
Morgan Mununggurr, dialysis recipient in Yirrkala
Morgan started experiencing kidney failure — a chronic illness that hinders the filtering of waste products from the blood — many years ago but did not need dialysis until the late 1990s.
In Australia, it is estimated that someone dies from kidney-related disease every 25 minutes, with the issue most prevalent among the elderly, chronic drinkers and those in remote Indigenous communities.
In the Territory, chronic kidney disease contributes to 50 per cent of all hospitalisations, with the region having the highest rates of sufferers in the world.
Symptoms include tiredness, shortness of breath, nausea and vomiting through to puffy legs, a constant metallic taste in the mouth and eventually death.
Peritoneal or home dialysis has been one treatment option in Australia since the 1970s but was not widely practiced in Yirrkala, a remote Indigenous community about 600 kilometres east of Darwin, until the late 1990s.
Jill, who has practiced as a health worker in Yirrkala and outlying homeland communities since 1987, first learned peritoneal dialysis from a nurse in 1999 and has been teaching others ever since.
"When she used to go to work early, I used to do it myself," Morgan said.
The bags of dialysis fluid were hauled to hunting and fishing trips for several years until Morgan became progressively sicker and his stomach catheter became infected.
"One day, I went out getting stingray, and I fell into the salt water. The thing got infected with the salt water and they put me back on haemodialysis," he recalled.
Health industry: NT dialysis options still falling behind
Haemodialysis is used to treat advanced kidney failure and involves hooking a patient up to a large machine, most typically for three to four-hour stints several times a week.
Yirrkala did not have a dialysis clinic when Morgan first required the service, meaning the married couple spent several years going back and forth between Darwin so that Morgan could stay alive.
This is a common story across the Northern Territory, with many remote communities not having access to expensive clinic-dependant machines.
Dr Paul Lawton, kidney specialist at Menzies School of Health, said it is "great" that larger Indigenous communities like Yirrkala, Lajamanu, Yundemu, and the Western Desert region have received renal clinics in recent years.
"The problem we face is giving it to everybody from right across the Northern Territory," he said.
NT medical groups have been waiting for $10 million in Commonwealth funding to bolster dialysis infastructure for several years but that funding process has so far stalled.
"As of today, we haven't heard anything more of that $10 million, despite some discussions earlier this year," Dr Lawton said.
Dr Lawton said giving people more dialysis options in remote Indigenous communities was an important way to keep people with their family and culture.
"Dialysis is for the rest of your life. It's a huge burden to take somebody, who's spent their whole life in one community, and uproot them and bring them to another, for the rest of their lives."
Morgan — now approaching his 70th birthday and getting around in a wheelchair — and Jill returned permanently to Yirrkala after its dialysis clinic opened in 2012, and are now regular fixtures at the small health space.
"When he goes in the morning [for dialysis] it gives us time to go collecting oysters," Jill added.
Topics: diseases-and-disorders, liver-and-kidneys, health, relationships, community-and-society, indigenous-aboriginal-and-torres-strait-islander, yirrkala-0880
First posted June 30, 2015 14:22:27
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