Community Run Dialysis – Inspirational!

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live in small communities, huge distances from large population centres.

Imagine also, that many of these people can, for various reasons, be more than twice as susceptible to kidney failure as the rest of us. And, because their communities are too small to justify individual, government-funded clinics, the only option they have is to leave their community and move to a city where they can dialyse. That is, move permanently from their lifetime home.

KintoreMost are elders or elderly. Their separation hits them hard: they become lonely and isolated and begin to lose the joy of life. Their families and communities miss them; miss their wisdom, guidance, and love. People began to worry about the future of their communities without elders there to provide leadership and pass on cultural knowledge; there was a very real risk of disintegration.

So they drew deep from their community, art, and culture, and changed the game. I’ll let them take up the story:

Determined that renal failure should not be a one-way ticket … away from family, country and everything important, senior men and women created four collaborative paintings.

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Kintore Women’s Painting

Browns KintoreMens

Kintore Men’s painting

With the help and support of Papunya Tula Artists (their artist’s community), Sotheby’s Australia and local NT politicians, these were auctioned at the Art Gallery of NSW on the 11th of November 2000, raising over $1 million dollars to set up a dialysis service at Kintore (the first of the tiny remote communities in the Western Desert of the Northern Territory).

Patrick Tjungurrayi

Patient Patrick Tjungurrayi receiving dialysis in Kiwirrkurra with his grandchildren.

Since the commencement of dialysis treatment in Kintore in 2004 we have grown to have dialysis units in 8 remote communities, as well as at the Purple House in Alice Springs. 

Truck and chairThen, in 2011, we created the Purple Truck, our mobile dialysis unit, to give patients the opportunity to spend time in their home communities where there is not a permanent dialysis unit, where they can to reconnect and recharge.

Janie Miama at Docker River

Patient Janie Miama receiving dialysis in Docker River

In 2003, they incorporated as Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis). The name means ‘Making all our families well’ and it recognises that people must be able to stay on country, to look after and be looked after by their families.

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Western Desert Dialysis CEO Sarah Brown with her award

And success breeds success. As they have grown, they’ve attracted other talented people, like their Chief Executive, nurse Sarah Brown, who was voted Australia’s top nurse for 2017.

And organisations like Medicines Australia, Papunya Tula Artists and Fresenius Medical Care, whose generosity and support helped start and run the Purple Truck.

Governanmce AwardThere’s more. In November 2016, Western Desert Dialysis won the 2016 Reconciliation Australia/BHP Billiton Sustainable Communities Indigenous Governance Awards, Category A Award for incorporated organisations. Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They’re a family that really cares for every member in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way. They’ve … got the administrative nuts and bolts of good governance and are taking innovative approaches to community leadership.”

Take a bow, Western Dialysis Directors.

Still more: Over the last couple of years, they have developed some great education resources for dialysis patients, including this video (in 3 local languages as well as English). It’s excellent. Simple, easy to understand and educational for anyone on dialysis. Check it out!

How great is all this? So many good messages. Beginning with the amazing power of art to influence and change lives.

And smart, inspired people taking responsibility for their own health and well-being to deliver dialysis the way they most need it.

Sounds like yet another example of the ePatient movement, not just sitting back and hoping.

There is a lot more to their story: Check out their beautiful website (showing some of the fabulous artwork) and subscribe to their mailing list. I have a feeling there’s a lot more excitement to come.

Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right. (more…)

Lisbon adventure #1

1-pickp-001Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares! (more…)

Christmas snippet

1-uncleHi all you BigD-ers and supporters.  Have a great Christmas!  I hope the day brings you joy and something nice to eat.  This post is just for Christmas.

This post is just for Christmas.

A Christmas Story

As part of my Christmas, earlier this week I had an interesting experience.  I went for my usual Christmas haircut at my usual barber.  The guy settling into the chair before me was an elderly gentleman who has owned one of the local coffee shops (more…)

I’m a HemoDialysis Ghost

Now for something completely different, from googleMWgalaxy42.com, dated 29 June 2019.

I’m a Hemo Dialysis Ghost and I’m OK

A couple of weeks ago the bosses at the HDGhosts.com asked us to write a review of our job for their recruitment website (for money!).  Here’s my review.

I’m getting ready for my fifth session as a HD Ghost.  So far it’s been an OK  job.  Not exactly hard work, though it does take a day or two until you feel well again after each session.  But the pay is pretty good, and since it’s the first real job I’ve ever had, and I’m 28, and my dad has never had a job, I’ll stick at it for a while yet. (more…)

Crowdsourcing Dialysis Poetry

Now for something completely different.

Just for fun, if you haven’t already seen it, have a look at this:

Dumb Ways to Die is a multi-award-winning public service announcement campaign by Metro Trains in Melbourne, Victoria, Australia to promote rail safety. (more…)

Struck by Lightning on Dialysis

We had a joyful occasion about a month ago:  our only daughter Kathy had a baby girl.  Since Julie was a midwife, she was there with Kathy’s husband, throughout the birth.  Kathy had her baby at the Mercy Hospital Family Birth Centre, which was just wonderful.

I wasn’t invited to that particular party (and that was fine with me), so I waited most of the time in the Centre’s appropriately named Waiting Room.  Kathy started proceedings at home and went to the Family Birth Centre after about 16 hours.  She was admitted at about 9pm and had the baby at around 3pm the next day: a long labor (and lots of waiting). (more…)

Dialysis Downtime up in the “air”

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Approaching a difficult landing…

Life away from the BigD machine can be pretty good sometimes.  Julie gave me a birthday present in August which was booked out three months ahead – a Boeing 737 Airliner flight simulator.  My trip was for an hour, flying into and from our local airports and then into and from an airport of my choice.

I have flown a plane (non-simulated) before.  I learned to fly a Cessna 150 in Albury, about 35 short years ago.  (It is only since I reached my 50s that I have been able to say 30 years of this, (more…)

Stopping Dialysis: how long before The End?

sunsetGetting bogged on a muddy road is not normally a life-threatening situation.  Unless you are driving 475km (300 miles) for dialysis on a muddy dirt road after floods.  A guy in the Queensland outback was doing exactly that three days ago, travelling from Mt Isa to Doomadgee Hospital, a nine-hour trip.  He and three companions, including his son, were travelling along the muddy Thorntonia Rd, a 56km (35 mile) stretch about half way there, when they were hopelessly bogged.

They spent the night in the car (more…)