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.

Orange -bg1000

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.

Sarah brown 2

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.

Will my boyfriend die young?

Kristy sent me an email recently:

Good evening Greg. 

My boyfriend suffers from dense deposit disease and although he is fine at the moment, I fear the time he may need dialysis or a transplant. I suffer from anxiety so it’s hard to shake these worries. He’s very active, likes a drink, likes to socialise and I just worry about how much of an impact kidney failure will have on his life. Any experience you could share would be a big help to me. At times, I catastrophise the thoughts to simply the fear that he will die young (he’s 26 at the moment).

Kind regards, Kristy

Me:

Hi Kristy, thanks for your email. As I understand it, dense deposit disease is bad news for kidneys, in that it primarily affects kidney function. So you are right, kidney failure is a likely outcome in the future.

How far away that is, only time will tell. Everyone is different, but even sick kidneys can hang on to some function for years. I was diagnosed when I was 20 but, by gradually changing my diet and keeping reasonably fit, I didn’t start dialysis until I was 43. So I had 23 years of fairly normal life before dialysis. I say fairly because during the last couple of years I felt progressively sicker. But during that time, I got married, had three kids and lived a full, satisfying life. Then, of course, I went on dialysis.

At the time, I thought my life was over, but within a few weeks I began to feel healthy again and found that I could still live a full and healthy life: I just had to build dialysis into my weekly routine.

This pattern is not at all unusual, many people have the same experience. And it is likely that you and your boyfriend will too.

Your boyfriend is your boyfriend because of who and what he is and how you are together. Those things won’t change once he starts dialysis, even if he has to modify his life to fit it in. The challenge can bring you both closer and make your bond stronger (it did for me and Julie). Life will go on and you will be happy and sad, frustrated and delighted in the same way you are now.

So don’t catastrophise (I love that word!). Take the long view and all will be well.

Regards, Greg

From Kristy:

Greg, thank you so, so much for this email. It has really helped me to feel a sense of ease regarding the future. I really appreciate you taking the time to respond.

Dialysis, my boyfriend and me

Marli (not her real name) wrote recently:

Hello, my name is Marli. I am learning a lot from your blog so thank you so much for all that you are doing.

I am 19 years old and my boyfriend is 24.  We have been together about 8 months.  He was born with failed kidneys and it is a very touchy subject for him so I’m afraid to ask him about it.  (more…)

Confused Fiancé: Should I marry a guy on Dialysis?

Confused Fiancé Anthea (not her real name) wrote this during the week:

Hello Greg.

I am a 43 yr.-old woman with no health issues. I met a man age 53 (online) that I fell in love with only later to find out that he was in Stage 4 of 5 stages of diabetes Type 1 (brittle). I don’t know much of the jargon but his kidneys are functioning at 12% (in Sept 2013 it was 14%) and his Creatinine number is 9. He hid his illness (the extent of it) very well for a while… (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…)

Two weeks can be a long time on Dialysis

It has been a big two weeks.

Last Friday (the 21st), Charlie died.  Charlie started dialysis at our unit in 2000, when he was 68.  Our BigD community (us, our families, and ‘our’ clinicians) is a long-term proposition, like a special interest club.  We all have a common interest (kidney stuff), we spend time together (no matter what!), we learn from each other and some of us become close friends.  Over the 13 years Charlie was with us, we got to know him pretty well.  He was a good guy: friendly, supportive, inclusive and well-loved.  He was a gold-class BigD club member. (more…)

Dialysis or Transplant: the Big Decision

When I first went on dialysis, in 1995, I was in shock.  Though I had been building up to it for at least five years, the reality of the needles, the machine and the time it took from my life was almost overwhelming.  It was for Julie too: suddenly our life together was short-changed.

Everyone in this emotional cauldron feels the same, and like everyone, we cast around looking for any way we could make it all go away.

The obvious candidate was a kidney transplant.  (more…)

Kidney Disease, Dialysis and our Relationship

Last week Shirley (not her real name) wrote to me.  She was worried about how her relationship with her boyfriend would change (or survive) now that he has kidney failure.  I think Shirley’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone.

Hi Greg,

My name is Shirley and I came across your blog through the Kidney Australia website. I’m sure you get plenty of e-mails, thank you for taking your time to read this!! (more…)

Dialysis. Then there’s the rest of your life

One thing I find, especially when I’m not 100% fit, is that the BigD takes on a disproportionately prominent role in my life.

Sure, it’s important; it keeps me alive and kicking.  But it only takes 15 -20 hours of my time per week.  What’s that in proportion to my total awake time?  Assuming I’m awake for 16 hours a day (which is a bit of a fudge, because I rarely sleep eight hours per day), then I’m awake a total of 112 hours per week.  20 hours is just 18% of each week – less than a fifth. (more…)

Musings from a BigD Christmas party (or why I’m glad I don’t dialyse at home)

Julie and I went to the BigD Christmas party last Sunday. It’s on at the same time every year, 5pm on the last Sunday in November. At the same place, a park with a big sheltered area surrounded by trees, swings and slides. We all try to bring at least one significant other.

Chris, the Unit Manager and several of her wonderful staff and friends organise it every year. They do the hard stuff: buying the chickens and salads, cooking the snags, buttering the bread, making the punch. For the rest of us, it’s just there, ready to eat and enjoy. All for $10 a head. (more…)