1

My husband Nik was diagnosed with stage four kidney failure two weeks before our wedding lastyear,justbeforeheturned32.Ihadmetupwith him in the morning after his buck’s night, and found him to be incredibly ill, but it didn’t seem to be a normal hangover. He was vomiting, he was dizzy, and I found out he’d had a fall and hit his head during the night, so we took him to the ER thinking he was suffering from a head injury.Whilethere,routinebloodandurinetests

showed that his kidneys were failing, and it turned out only 20 per cent of function remained. We were completely shocked as he’d shown no symptoms, and despite suffering from a bladder issue as a child he’d been told at age 14 that his bladder and kidneys were completely fine.

They kept Nik in hospital for a full week during which time he had the official diagnosis of kidney disease and had us worrying we’d have to push back the wedding. Luckily he was released in time and we could go ahead with the big day! We were thrilled and it was truly the best day for both of us.

For now, we practise a healthy lifestyle and diet, and soon Nik’s father will be tested

to see if he is a match for a kidney transplant. Weareenjoyingourfirstyearofmarriage,determined not to let the disease change our lives, nor our plans for the future too much!

For this year’s Big Red Kidney Walk, 20 members from both our families are coming together to fundraise and participate this September in Sydney. We want to make a difference in the lives of those affected by kidney disease, like Nik, and you can too.

Issue 30 – August 2013Kidney Community

Kidney Health Australia was proud to be invited to the 50th year anniversary celebrations since the signing of the ‘bark petitions’ in Yirrkala, Northern Territory last month during the National Aborigines and Islanders Day Observance Committee (NAIDOC) Week which was attended by Prime Minister Kevin Rudd.

The historic petitions were the first traditional documents to be recognised by the Australian government and paved the way for the recognition and land rights for Indigenous peoples. The petitions are framed in ochre-painted bark. Jo Fairbairn, Kidney Health Australia’s CommunityEducationManagerassistedtheMiwatjAboriginalHealthService with activities for local children and provided them with Kidney Health Australia wrist bands with the message, drink water for health kidneys and a healthy heart.

MiwatjHealthhasexpressedinterestinpartneringwithKidneyHealthAustralia to hold a kidney health festival in Yirrkala in 2014.

LET’S BE FRIENDS! Like Kidney Health Australia on Facebook at www.facebook.com/KIDNEYHEALTHAUST

Kidney Health Australia at Yirrkala celebrations

Health promotion karaoke! Kidney Health Australia now has two karaoke videos that may be used for children that promote healthy lifestyle and swapping soft drinks for water. Watch them at http://www.youtube.com/kidneyhealthaus

Kidney Health Australia’s national Big Red Kidney Walks provide a special time for the kidney community to get together, enjoy an easy morning walk and a free barbeque with entertainment!

Simultaneous walks will be held on 1 September 2013 in Adelaide, Launceston, Melbourne, Perth and Sydney, with an additional walk in Toowoomba on 8 September 2013.

As per previous years, the walks will feature varying distances to accommodate walkers and runners of all ages and abilities.

If you have a special connection with kidney health and want to help raise awareness of this important cause then this walk is for you! Come by yourself, or invite your family and friends!

Registration is mandatory before the event and costs only $10 (children are free but must also be registered).

To find out more and register for the Big Red Kidney Walk, visit www.kidney.org.au or phone 1800 454 363. We hope to see you there!

We’re walking for NikBY BRIANNA

HEALTH/MEDICAL

2

Bathurst Surf Life Saving Club (Bathurst): Brothers Graham and Peter Ward with teammate Richie Farrar have fundraised and participated in Kidney Health Australia’s Kidney Kar Rally for over 10 years. They have raised over $440,000 to provide children with kidney disease and their siblings the rare opportunity to meet others living with the same condition in a safe and fun environment while building self-confidence and providing respite.

Bruce Warrell (Wurtulla): Bruce has been a volunteer with Comlink, Sunshine Coast and has been visiting the renal unit at Caloundra Private Hospital for seven years. Currently, Bruce has focused his efforts on one patient in her nineties, he picks her up from home, takes her to appointments and gives her support when and where her family are unable so that she does not have

tousetaxisorambulanceswhichareexpensiveandadrainonresources.

Jill Lawton (Paringa): Jill is a passionate renal health care workerwith26yearsofexperience,mostrecentlyservingasthe Nursing Unit Head at the Women’s and Children’s Hospital Renal Unit. She has been instrumental in organising many Kidney Health Australia Kids Camps in South Australia. One patient said that while she was reluctant to commence dialysis, Jill’s care enabled her to manage her life-saving haemodialysis treatment; she said “Jill’s care was paramount in my feeling so well and livingintomy80s...withouthercareandexpertiseinrenalnursing, I wouldn’t be here today.”

Find more information on the Angels we have announced at www.kidney.org.au >News and Events>Operation Angel 2013.

MEDICAL MATTERS –

Kidney disease and Indigenous peoplesRecent research once again highlights the burden

of kidney disease and its impact on the Australian Indigenous population.

A study released in July 2013 by researchers from the University of Queensland1 found that after studying 1,390 individuals from a remote Aboriginal community 20 years after their initialassessment,approximately1in2haddiabetesand1in14who didn’t have diabetes were estimated to develop end stage kidney disease in their lifetime.

These findings are supported by a new report from the Australian Institute of Health and Welfare (AIHW)2 which highlights differences in treatment patterns and outcomes for Indigenous Australians with kidney disease. The AIHW report states that Indigenous Australians die from kidney diseases at over three times the rate of non-Indigenous Australians. Indigenous Australians with end stage kidney disease are 15 times more likely to rely on dialysis than non-Indigenous patients.

The latest data from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA)3 also shows that 30 per cent of Indigenous patients are still referred ‘late’ to a nephrologist (within three months of starting dialysis treatment). Late referral is associated with worse patient outcomes, reduced access to kidney transplantation, and inadequate patient education regarding treatment options.

Why is the incidence so high? The greater prevalence of kidneydiseaseinIndigenousAustraliansisduetoacomplexrange of factors relating to whole-of-life nutrition, infections, health behaviours, living conditions and the high incidence of traditional risk factors such as diabetes and high blood pressure. genetic

factors such as reduced numbers of nephrons (the kidneys’ blood filters) at birth also play a role.

While the overall situation continues to be of great concern there are two areas for optimism. Firstly the increasing emphasis on self care in dialysis that is being practised in the Northern Territory is allowing more people to return to remote communities on dialysis, and secondly the wrate at which new patients are starting dialysis in the Northern Territory has not increased in the last five years.

Kidney Health Australia has culturally-sensitive education resources on kidney disease for Indigenous peoples. To find out more go to www.kidney.org.au >Health Professionals>Indigenous Resources.

Seeing angels RECOgNISINg THE 2013 OPERATION ANgEL AWARDEES

Are you a health professional interested in home dialysis or pre-dialysis? Kidney Health Australia produces monthly newsletters on these topics - simply email Debbie Fortnum, Home Dialysis Project Manager to subscribe or contribute at homedialysis@kidney.org.au

New South Wales Consumer Committee’s Geoff Youdale, KHA CEO Anne Wilson, Peter Ward and Richie Farrar

Amber Williamson (KHA), Bruce Warrell, Colin Finch (KHA) Family and Jill Lawton

Sources:1. Wang Z, Hoy WE. Diabetes and lifetime risk of ESRD in high-risk remote-

dwelling Australian Aboriginal people: A 20-year cohort study. Am J Kidney Dis 2013; Available online 9 July 2013.

2. Australian Institute of Health and Welfare. Aboriginal and Torres Strait Islander Health Performance Framework 2012: detail analysis. 2013.

3. ANZDATA. The 35th ANZDATA Registry Report. 2013.

CONSUMER CORNER

3

Words of wisdomON FACEBOOK WE ASKED THE KIDNEY COMMUNITY WHAT ADVICE THEY HAD FOR THOSE JUST STARTINg THEIR KIDNEY JOURNEY.

Do you know your dialysis unit’s emergency plan?Bush fires, floods and hurricanes are frequently in the

news throughout Australia. Disasters that last for more than a few hours impact on those doing peritoneal dialysis or haemodialysis, at home or at a centre. The inability to travel to dialysis or loss of power and/or water make dialysis difficult if not impossible. Luckily most units have a disaster plan to ensure safety of patients, staff and facilities. It involves four steps: prevention, preparedness, response and recovery.

Preparedness includes having communication plans (which may include Facebook), back-up supply options, emergency packs at home, knowledge of alternate transport options, systems for accessing medical records and back-up dialysis and

accommodation options. Staff and patients must be educated and aware of all of this for it to work.

Response includes coordination with other dialysis services and the emergency services. If the unit is prepared, it is much easier to respond quickly. Luckily nurses who work in constantly changing environments are very good at managing a situation once it occurs.

Imagine if your area was affected by a major disaster, would you be ready to respond? If you are unsure about your dialysis unit’s natural disaster plans, please chat to your dialysis unit and find out how you can be prepared.

Remain positive, focused, happy and willing to take on the challenge.

Have an open mind and heart, everyone has a story and if you listen you may learn from those who have come out the other side and come away with lifelong friendships.

Take control of your attitude and get passionate about good nutrition.

Don’t be afraid to ask for help. You don’t have to do this on your own.

Stay positive, ask questions, find people that will not let you dwell in the bad of the situation but support you in those ‘down’ moments... I had many of those but thankfully I had supportive nurses and family. Be strong!

It’s hard, really hard but I refuse to feel sorry for myself. I visualize a healthy me and dream that one day it will become a reality.

You’ll be surprised at what you can endure and how strong you actually are.

LIKE TO RECEIVE KIDNEY COMMUNITY EVERY MONTH FOR FREE?Free call 1800 454 363 or email subscribe@kidney.org.au to sign up!

4

KIDNEY CALENDAR AND EVENTS

4

Enjoyed a good read?Then do a good deed,When you get to the end,

Please send to a friend!

Engines’ roarin’ for the upcoming Kidney Kar Rally

16-24 August

25TH KIDNEY KAR RALLY – Tamworth to Armidale via Bundaberg – more: www.kidneykarrally.com.au

30 AugustAPPLICATIONS CLOSE – for Kidney Health Australia’s 2014 Medical Research Program categories

1, 8 September

JOIN IN ON THE BIg RED KIDNEY WALK - on the 1st in Adelaide, Launceston, Melbourne, Perth, Sydney and in Toowoomba on the 8th. www.kidney.org.au

7-8 September KIDS CAPERS PROgRAM IN SA. - Apply now: www.kidney.org.au >News & Events>Kidney Kids Capers

The 25th Annual Kidney Kar Rally will be held from 16 - 24 August, travelling from Tamworth New South Wales via Bundaberg and finishing in Armidale Queensland. Entrants for the Kidney Kar Rally come from various parts of Australia and participate in all types of vehicles. Over 70 rally teams have signed up for this year’s event making it one of the biggest rallies we’ve held to date!

The event raises money to support our Kidney Kids Programs and we would like to thank all participants for their incredible support and wish them good luck as they take on over 4,000 kilometres!

To find out more about the Kidney Kar Rally and how to become involved visit www.kidneykarrally.com.au or phone 1800 454 363. Repco Australia is a proud partner of the 2013 Kidney Kar Rally.

Couscous patties

LIFESTYLE RECIPE

This light, tasty and healthy meal idea is suitable for people with CKD, diabetes and those on dialysis. Why not try it today? Recipe from ‘Dining In – Delicious Dialysis Recipes and Meals’, Renal Resource Centre.

INgREDIENTS•1cupcouscous•1cupwater•2tablespoonsextravirgin

olive oil•1onion,finelychopped•1clovegarlic,crushed•½redcapsicum,finelydiced•1celerystalk,finelychopped•2tspgroundcumin•2tspgroundcoriander•2tbspchoppedfreshparsley•2tbspgratedlemonrind•2tsplemonjuice•1egg,lightlybeaten•ExtravirginoliveoilforcookingGarden salad•1cupmixedlettuce•8slicescucumber•2ringsgreencapsicum•2tablespoonsshallots•2tablespoonsItaliandressing,

low fat

CKD, DIALYSIS AND DIABETES-FRIENDLY

Questions about this recipe? Email colette.lappin@kidney.org.au

Each serve of this recipe will provide:Couscous patties (2 patties)2720 kJ, 16g protein, 30g fat, 75g carbohydrate, 395mg potassium, 230mg phosphate, 70mg sodiumCouscous patties (2 patties) with garden salad2825kJ, 17g protein, 31g fat, 80g carbohydrate, 445mg potassium, 240mg phosphate, 295mg sodium

METHOD1. Place couscous in a bowl and

cover with 1 cup of boiling water. Leave for 10 minutes until water is absorbed then lightly fluff grains with a fork. Set aside.

2. Heat oil in a pan and add onion, garlic, capsicum, celery, cumin and ground coriander. Cook over medium heat until vegetables are soft.

3.Addthevegetablemixtothecouscous and add the fresh parsley,lemonrind,juiceandegg.Mixwell.

4.Dividethemixtureinto4evenportions and form into large patties. Cover and refrigerate for 10 minutes.

5. Heat a little olive oil in a pan and cook patties for 5 minutes on each side until golden. Serve with the garden salad for lunch.

SERVES 2

Photo: marinmamacooks.com

BIG RED KIDNEY