Dialysis machine for Tennant Creek

Ruby Frank and Tasman Cassin told Dr Helen Carney
and Paul Cockram about the difficulties that dialysis
causes when family and friends must be left behind.
Ruby was off the mark first ...

I first had trouble in 1987. The doctor seen me here - it started with having the flu, then it come as a renal failure kidney. They sent me to Alice Springs to see the specialist, then from there on to Adelaide.
I had to live in Adelaide for two years as there was no dialysis machine in Alice Springs. So I was down in Adelaide for two years and then moved back to Alice in '89. I stayed in Alice for another two years, it was three years I think and then from there I was lucky to have a transplant.
In 1992, February the 15th I had a transplant in Adelaide. I was happy about it because I had a transplant you know, I had the needles and pins, you can't wait. I had the big operation in Adelaide, stayed there for three months and went back to Alice. I stayed there for one month and then I came back home.
But I didn't settle down there, I was still fighting for a kidney machine here. We made a petition, a lot of people signed it and we sent it up but that petition didn't still help.

HELEN: How long did the new kidney last?

Eight years the kidney lasted and then I went back in '99. Yeah, it didn't really stopped working, just not flushing out; not flushing out the waste you know, the rubbish out from the kidney. It's still working a little bit, but not that well.

HELEN: How do you feel when the kidney isn't working? How does it make you feel when that rubbish is in your system?

It makes me feel miserable. When I hear that, when my kidney is starting to fail, doctor was saying, "Your kidney is starting to fail now".
I said, "Oh it's bad, I want to stay home, I don't want to go. I don't want to go back down there on the machine, I feel missing all my families. I've been waiting for a kidney machine up here."
He said, "You've got to go down." There's a lot of people up here like me, people that have got kidney failure don't want to go down, they all want to live here. They don't want to go down because it's 500km from here, from their hometown. Like me, I didn't want to go but I have to because I have to be on that machine, that's the only one that saves our lives. We can't just come back and live here; the kidney can't flush anything out.

HELEN: It's three times a week usually, like Monday, Wednesday and Friday or Tuesday, Thursday and Saturday. So you've got it about three times a week and you're on it for what, four hours?

Yeah, four, four and a half hours.

HELEN: There is another method which we have tried here which is a peritoneal dialysis, where you have bags inside your tummy and you can live here. But the infection, you get a lot of infections and you get very sick. And also long term, the bags inside the belly, the peritoneal, it will get weak because they lose calcium from their bone and so they end up getting very frail. At one stage we had four people using that method because they didn't want to be linked up to the machine living away. But now there's only one lady and she hasn't actually been here for a while because she's been too sick, she's been in Alice too.
There are currently sixteen people I can count, on the kidney machine in Alice Springs, from this region. That includes Epenarra, Lake Nash and Ali Curung, even Canteen Creek.
Them mob down in Ali Curung and way over Lake Nash, that lady from Lake Nash - she goes over to Mt Isa, Camooweal, she goes about four or five days at least, missing dialysis. And you can get very sick; you can get really sick from that.
That waste in your kidney and the fluid builds up, your face gets puffy, you get really sick and your heart expand. When you got about six or seven kilos of whatever you drink, water, or eat food, that's your waste going in and the kidney can't flush out. You get very very sick from that and you can't move, you can't breathe, you got to go in the hospital and the hospital going to try and flush it out, clean the kidney and get the fluid off. Because if the fluids in your body and your heart expand, it gets like jelly and your heart is doing all that job and really pumping. You get high blood pressure from it and it's really really hard work pumping. So a lot of people can get that problem if they miss dialysis.

HELEN: Tasman, you know about that, swelling up. Tasman's got five kids here.

TASMAN: Yeah, I had a kidney transplant in 1989, it lasted until '96 - seven years. I didn't take some medicine, that's why I got sick.
When I got sick, it was very sad for me to leave this place and my family. I had to go back for that dialysis machine in Alice Springs. Us family from Tennant Creek, we always talk about to come back home because we think about our family back here. There was one old lady; she was living in the Old Timers. When she was living there she was really lonely and wanted to come home to Tennant Creek. What happened is, the old lady, she wanted her family to be alongside her, as she was lonely. Then one day they wanted her to take that kidney machine but she knocked them back because she wanted to be with her family back here in Tennant. That's what happened to a lot of families in Tennant Creek. They all went up to Alice Springs, see it was really sad for them, you know, they wanted to come back home and live by their family.
When we live over there, if something happens to us, our family wouldn't see us. And it would be sad for our family, we got children here. I got five children and when I went to Adelaide for an operation my children were worrying, they didn't want to lose me. They kept worrying and ringing me up.
I told them, "I'm alright, I'll come back home." You see families here from Tennant Creek want us not to live in Alice Springs. They want us to stay here in Tennant Creek alongside our families, and if anything happens to us we got our families right here. That's the biggest problem in Aboriginal way, we got families caring for us, they don't want to lose us, we are leaving our family behind. When we get the machine here in Tennant Creek, well that's no worries.

HELEN: Tasman came home this weekend. You have to pay your own ticket?

I have to pay my own ticket.

HELEN: It's not just the distance but the cost when you have no income and you're living down there. As Ruby and Tasman said, "The costs are very high, then you got to pay sixty dollars to come back and see your family, and then sixty dollars to go back again." I mean out of a pension of a week that's a lot of money, just to come home. These costs are borne by the people themselves.

RUBY: The buses are full of tourists and we got to try and fit ourselves in, you know, do our bookings. Sometimes it's too late to do that booking. There's two buses that come up, one leaves at two and one leaves at four, and we got to try and do the booking before them tourists. We got to get in there and ring and pay it. It's really hard to try and scrape up that money.
Some people stay here and say, "Na, I'm not going back".
Years ago when I was working at the Tennant Creek Hospital as an Aboriginal Liaison Officer there was a person there that was living in Tennant Creek and was down in Alice at the dialysis. He came back and said, "I'm not going back, I'm staying here."
So he stayed here and never went back, the fluid built up and he got very sick. They put him in hospital here and I was there and told the doctors that he can't make it, he can't go back because he's just got too much fluid, he's going to pass away and lose his life. So I told them to keep him here till he goes.

HELEN: He wanted to stay here in his country.

RUBY: He stayed here, and his mind, everything was dead, you know. So he passed away here at the Tennant Creek Hospital and that's how a lot of people want to be. They want to stay here, but they can't because of those sort of problems. You got to go back on that machine, that's your only saviour, if you can't then you're dead.
The main thing we need is the machine here in Tennant Creek. At the moment the hospital is not agreeing, the hospital don't want it here because it's too much work.
But we can all set up our own machine and just get the health workers to do our blood pressure or watch us what we do, watch us when we put our needles in. When we get off the machine, we can clean it, put the blanket away, clean the chair for the next person and go home. And the next person can do the same thing.

HELEN: It's self-care. You go in, set it up yourself, attach yourself to the machine, sit there and do your thing and then take yourself off.
Four of us can do it on our own. We can do our own weights, calculate how much we've put on and how much we have to get off. We can set up our own machine and put our own needles in.

HELEN: Some people can't do that, they need assistance. Some of the people that aren't so competent or literate, or older, frailer people need more help.
Twelve need sisters to look after them and the other four people are independent. I offered to go in and help other patients, we can teach health workers too.

HELEN: Ruby probably knows more about this than I do.

RUBY: In '87 they said I had to do it myself.

HELEN: In the cities most people would go to a local clinic where they have access to machines. One of the issues here is the water quality though. The unit in Alice Springs has a big filtration unit to get the water that goes into the machines clean and rid of the salt. So the difficulty with home machines in Tennant, why Ruby can't just come back tomorrow and have a machine at her house, is because of the water. That's why we are trying to get a centralised unit; it will be more cost effective in the long run because the water can be cleaned for all the machines in one unit. In other places like the Kimberly, they have even tried with self care in people's communities where people have renal failure. They actually have a machine in that community.
Tasman, where's your country? It's where we went hunting that time isn't it?

TASMAN: Cabbage Gum area. I used to live there and eat a lot of Kangaroo meat, bush tucker and I was happy. I miss that now today and my children, they want me to come back to live out there again. My little daughter asked me, "Daddy, you should put a house there beside the swamp, you should live there."
And I reckon, "No, I got to live by that dialysis machine now." I don't know what went wrong. Last year they were going to put the machine here. I lot of people signed the paper and whoever is boss of these machines should listen to the people. It's a serious matter for us, because that thing save of our lives.
Other people should help other people.
That's the biggest problem in Aboriginal way, we got families caring for us,
they don't want to lose us -
we are leaving our family behind.