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Ar e you 1 in 3 ?

Kidney Community Issue 27 – May 2013 Welcome to Kidney Health Week from Kidney Health Australia CEO Anne Wilson Welcome to our May 2013 edition of Kidney Community. Our messaging this year reinforces the need for Australians to identify whether they are ‘1 in 3 Australians at increased risk of kidney disease.’ Undetected and untreated, kidney disease is a silent killer. Kidney disease is common, harmful and can be treatable if detected early. Why not visit www.kidney.org.au and do a free online kidney disease risk assessment and learn more about Kidney Health Australia’s work in education, advocacy, research and support. Kidney Health Week 2013 will be officially launched on the

morning of Monday 27 May, at Parliament House Canberra with members of Parliament and those with kidney disease and their families in attendance. Attendees will be encouraged to take a risk assessment at the launch. During Kidney Health Week and the preceding weeks, over 2,000 hospitals, business and workplaces will display our red Kidney Health Week posters and many communities around the country will raise awareness through the media, our events and fundraising activities. If you would like to support Kidney Health Week, free call 1800 454 363 for your free event pack or download it from our website. We do encourage you to let us know what you are doing to honour the week so please email events@kidney.org.au to discuss your plans and share any fun photos. Thank you for your loyalty and commitment to our cause and to Kidney Health Australia. Together we are making a difference!

Government live organ donor scheme announced – an update On 7 April 2013, the Federal Minister for Health, the Hon. Tanya Plibersek MP announced a two year pilot of a Live Donor Leave Scheme, in conjunction with Kidney Health Australia. The pilot scheme will provide up to six weeks paid leave at minimum wage to employers, who pass it on to eligible employees who become live organ donors. Kidney Health Australia, with the assistance of live donors, especially the efforts of Mr Lloyd Woodford, and the broader kidney community, have been campaigning for a scheme of this nature as a way of providing better financial support for live donors in a sensible, safe manner. “This is something we have long advocated for and should help ease the burden of those people who give the gift of life through organ donation” said Anne Wilson, CEO of Kidney Health Australia. “Importantly, this is about removing some of the stress by providing an avenue to access a level of paid leave, where often only unpaid leave is available. It’s not about ‘paying’ for organ donation in any way - rather it is about better supporting those who give so much”. Currently, many of those who wish to become live organ donors are required to take leave, which is often unpaid, placing further financial burden on an already stressful situation. “Providing the ability to take the time off work, while still having some form of income for everyday expenses such as bills, the mortgage and groceries means there is one less thing to worry about” said Anne Wilson. The scheme will be administered by the Australian Government and funding for the two year pilot will commence in July 2013. Kidney Health Australia, as the peak advocate for live kidney donors, will continue to provide updates as further information becomes available through our newsletter, website and social media. To register for further information about the new Government organ donor scheme, please email livingorgandonation@health.gov.au.

CEO Anne Wilson speaking at the press conference (centre) with the Hon. Tanya Plibersek (right) We’ve had a wonderful influx of people keen to share their stories and support for the live donor leave announcement on Facebook, Twitter, through our call centre and by email. To help us to collect all your messages we’ve set up a ‘Living Donor Stories of Support’ online comment book. Please share your messages or past live donor stories about the need for this kind of support by clicking on the link www.kidney.org.au Your messages will be important in highlighting the ongoing need for support for live donors and their families.

Ground-breaking news: Kidney grown in lab Scientists in Boston (United States) have successfully grown a whole functioning kidney for the first time in a laboratory. The scientists injected a mixture of rat kidney and blood-vessel cells into the collagen scaffold of a rat kidney; after transplantation the bioengineered kidney was able to filter blood and pass urine. A report says that the ultimate aim of the project is to avoid transplant rejection by creating new organs from the patient’s own stem cells. The surgeon who led the study said that the study has not yet scaled the procedure to human-sized grafts.

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HEALTH/MEDICAL Medical Matters –

‘1 in 3 Australians is at increased risk of kidney disease’ The last decade has seen major changes in our knowledge and understanding of chronic kidney disease (CKD). Despite these advances, the number of deaths from kidney-related diseases has increased 17 percent since 2002. Every day, six Australians commence renal replacement therapy in the form of dialysis or kidney transplantation to stay alive. CKD is usually an asymptomatic condition, with many of the early signs such as fatigue, loss of appetite, headaches and difficulty sleeping either going unnoticed or being attributed to other causes. This is unfortunate, as early detection and appropriate management of CKD can reduce the otherwise inevitable decline in kidney function by as much as 50 percent. The available evidence does not support screening the entire Australian population for CKD. Instead, current recommendations strongly advocate targeting testing at people with one of the

CAMP RECAP:

15th National Kidney Kids Camp - Largest Camp to date! A record 79 children took part in this year’s National Kidney Kids Camp which ran from 11-14 April in Redland Bay, Queensland. We were proud to have nine former kidney kids return to the camp as volunteer carers (ages ranging from 18-30) and provide mentoring support. Our enthusiastic team of volunteer carers arrived Wednesday night before children flew in from around Australia with their wonderful paediatric nurses. Quickly settling in, kids took part in the first of four activity sessions featuring high and low ropes, giant swing, archery, flying fox, orienteering, damper making, abseiling and rock climbing. The kids were also treated to a surprise visit in the afternoon from Kidney Health Australia Patrons Sir Jack and Lady Brabham who signed autographs for the eager line-up of kids and volunteers. Camp was filled with many so many fun activities – from the ‘getting-to-know-you’ game called ‘Get Hollywood’ where kids got to act as their volunteers’ make-up artists, to playing ‘Minute to Win It’, to talent showcases like the camp’s karaoke night and the much-anticipated camp concert. The kids also had a chance to have a blast at the Surfers Paradise Timezone with unlimited games, laser tag, ten pin bowling, dodgem cars and mini golf. All too fast Sunday came around and we said our teary goodbyes until the next time. A massive thank you to everyone involved in camp this year -

New home dialysis resource launched

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Kidney Health Australia is proud to launch the booklet, ‘An Introduction to Home Dialysis’. This booklet is one element of the Commonwealth Funded End-Stage Kidney Home Dialysis Disease Programme and is designed to provide educational materials for patients throughout Australia. The booklet focuses on the lifestyle aspect of choosing home dialysis including daily routine, work and leisure activities, diet and fluids and the associated health benefits. It is available electronically from the home dialysis website and can be obtained free of charge via the patients publications section of the Kidney Health Australia website. An Introduction to

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For more information visit: www.homedialysis.org.au

risk factors for developing CKD: high blood pressure, diabetes, smoking, obesity, established cardiovascular disease, aged over 60 years, a family history of kidney disease, or Aboriginal or Torres Strait Islander heritage. It is recommended that all adults with one or more of these risk factors should undergo a Kidney Health Check (urine test, blood test, and blood pressure check) every two years (or annually if they have diabetes or high blood pressure). Awareness campaigns such as Kidney Health Week are an important way of informing both the general community and health professionals about the risk factors for developing CKD. As many as 1 in 3 Australians is at increased risk of CKD, and early detection can be life-saving.

To take your risk assessment online go to www.kidney.org.au Campers Mellony and Alex

Camp Hollywood - It’s a hit! from our host hospital (Royal Children’s Hospital, Brisbane) to the medical teams from the other hospitals around Australia, volunteers, kids, families, staff, sponsors, Kar Rally participants and of course anybody that made even the smallest donation towards this great program. We had a great week and although we know the benefits for running a program like this are clear for all to see, would particularly like to thank all the families that have given us such wonderful feedback and compliments already! For further info on our Kids Camps, email kids@kidney.org.au or ring 1800 454 363.

Challenges for rural dialysis patients highlighted in new fact sheet

Kidney Health Australia, in collaboration with the National Rural Health Alliance (NRHA), is pleased to announce that a new NRHA fact sheet on kidney disease in rural Australia has been developed and is now available online. The fact sheet is designed to outline the status of kidney disease in rural Australia and highlight the unique challenges that rural Australians face in seeking ongoing management and treatment. For rural Australians living with kidney disease, there remains a number of challenges in seeking treatment including: limited opportunities to undertake dialysis close to home, the requirement to travel greater distances for specialist consultations, and challenges relating to infrastructure and costs to enable home dialysis. Fact sheet 35: Kidney disease in rural Australia is now available on www.ruralhealth.org.au


CONSUMER CORNER

A note from a dialysis patient: How we cope BY MARGARET

Margaret is a dialysis patient at the Cranbourne Dialysis Clinic in Victoria. She wrote to us to share how her group cope with their time on dialysis. “Let’s face it, it can be depressing, but with the help of the ‘Cranberries’ (the Cranbourne dialysis staff) who roster us closely together, we have formed a little ‘brainiac’ group. “We all love teasing our brains with competitions and puzzles. On a Wednesday, our books come out and we start straight after we have our lunch, and settle in. We do as many puzzles as time will allow, then Friday the same routine occurs. All our entries are ready for posting off, and someone is hopefully picked to win something. The anticipation is a great incentive for all! “On Monday, we spend the time discussing what we have watched on TV, read or talked about what we’ve done over the

Research opportunities Have You Been Diagnosed With Secondary Hyperparathyrodism? Are You Currently On Dialysis?

Would you be willing to talk to a researcher about your experiences to help with a research project? The discussion with a professional market research interviewer will take approximately 60 minutes at a location convenient to you. Participants will receive $150 cash on completion of the interview. If you think you would like to participate, please call Mark from Ekas Research on (02) 8415 7537.

two days. We also catch up with how each of us is travelling with treatment. “With the help of the ‘Cranberries’, our little group, once strangers, has created new friendships by being placed together as often as possible, hoping and caring for each other. Dialysis does not have to be a drag or depressing. If you could hear the buzz and banter, laughs, ‘oohs and aahs’, you would not think anything seriously vital was occurring. We do gauge when we have to be serious, so if one of us is not feeling too well, we then run a little quieter for their sake, but this happens on very few and far between occasions. “Maybe this situation is not common at other locations, perhaps the same sort of thing could be set up with like-minded people, which I’m sure would be beneficial to all concerned. At times, we are so able to forget our situation that we do not realise how quickly the time has passed, which in itself is one heck of a good thing.”

SEEKING AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE (ADPKD) CONSUMERS AND CARERS

A research company is currently recruiting people who have ADPKD and their carers for an upcoming project that will work to better understand what consumers and carers go through in dealing with this condition. The outcome of the project will be sharing the information gathered to future consumers of the condition and their families. To register or for more information, contact Briar on 1300 849 303.

Dialysis unit showcases do-it-yourself dialysis wear Dialysis patients at the Liverpool Hospital in NSW have shown creativity with their attire during dialysis sessions, eliminating the need to change clothing and allowing better access to their fistulas. Pauline (pictured) has made a pair of pants that have press studs up the side to make haemodialysis access easier, another gentleman has a jumper with a zipper on the sleeve. Does your renal unit do something similar or are you interested in learning more? Contact Daniel Glaubert on daniel.glaubert@kidney.org.au

LIFESTYLE RECIPE CKD, DIALYSIS AND DIABETES-FRIENDLY

Spanish chicken and rice

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

SERVES 6

WHY IS THIS GOOD FOR ME? This recipe is dialysis, CKD and diabetes-friendly and has been adapted from a recipe at davita.com

INGREDIENTS

METHOD

• 500g skinless chicken breast, cut into four strips • 1 tsp paprika • 1 tsp Moroccan seasoning • 1 tbsp olive oil • ½ Spanish onion, diced • ¼ green capsicum, diced • ¼ red capsicum, diced • 1 cup rice, uncooked • ½ tsp garlic powder • ½ tsp chilli powder (or to taste) • ¼ tsp ground cumin • ½ cup salt-reduced tomato puree • 2 cups salt-reduced chicken stock • Olive or canola spray oil

1. Sprinkle chicken strips with paprika and Moroccan seasoning, set aside. 2. Heat a fry pan to medium and spray pan with olive or canola spray oil. 3. Cook chicken on both sides until golden brown and cooked through. Set aside. 4. In a separate saucepan, heat olive oil and sauté onion and capsicum until soft. 5. Add rice to pan, stirring constantly until rice is lightly browned. 6. Add garlic powder, chilli powder, cumin, tomato puree and chicken stock. Cover and simmer on low heat until rice is tender and water is absorbed, about 15 to 20 minutes. 7. Serve rice with chicken placed on top.

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KIDNEY CALENDAR AND EVENTS May-June

DonateLife Services of Remembrance – events held throughout Australia to provide a forum for acknowledgment of and gratitude to donors and their families. Further information at www.donatelife.gov.au

Meet the Vintage Adventurer

5-11 May

NATIONAL HEART WEEK – learn the warning signs of heart attack at www.heartattackfacts.org.au

10 May

World Lupus Day – wear orange to bring attention to this health condition that can cause damage to your kidneys and other organs

26 May-1 June Kidney Health Week

– help us spread the word that ‘1 in 3 Australians is at increased risk of kidney disease. Undetected, untreated kidney disease is a silent killer.’ Visit www.kidney.org.au for more.

Submit to Kidney Community

This newsletter is all about YOU — the patients, family members, carers, health professionals in our kidney community. We want to hear about your stories, events, issues, suggestions and the achievements of both you, yours and others in the kidney community. Email us at info@kidney.org.au with your 150 word submission and we’ll get back to you.

Kidney Health Australia with One Deadly Step Program

On 20 March 2013, the One Deadly Step program returned to Sydney to screen members of the Marrickville Aboriginal community. The One Deadly Step program was developed in partnership with NSW Health and the Australian Rugby League to address chronic diseases in Aboriginal communities of New South Wales. Partnering with Medicare Locals, the day proved successful in raising awareness of chronic diseases by screening members of the public with 12 easy steps. The One Deadly Step model is based around a community event that encourages chronic disease screening, early detection, follow up and management. Kidney Health Australia handed out health fact sheets and performed kidney checks, aideded by nursing staff from the Royal Prince Alfred Hospital. One Deadly Step hopes to continue this event at further ten locations in the next two years.

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Driver Rod Wade and navigator John Bell Photo credit: JKD Imagery

Kidney Health Australia is thrilled to introduce Rod Wade, the Vintage Adventurer. Rod’s wife, Nola, and their daughter, Louise, both live with kidney disease. From their family home on the Gold Coast in Queensland, they are planning to raise both awareness for kidney disease and critical funds for Kidney Health Australia, through Rod’s passion for vintage cars and extraordinary adventures. Rod does not do things the easy way; he sets himself ambitious goals and challenges. Rather than rally around the world in a modern vehicle, he prefers to drive cars over 80 years old and compete against the modern cars, their journeys, and hopefully beat their times. Rod has several extraordinary adventures planned, with the first being the famous Peking to Paris Endurance Rally. Travelling over 33 days in his 1930 Model ‘A’ Ford across China, through Mongolia, into Russia and then westwards to the Ukraine, Slovakia and Europe, with a spectacular finish in the streets of Paris. Rod and his navigator, John Bell, will undertake this gruelling journey, relying on initiative, determination and the reliability of his beautiful Model ‘A’ Ford, Tudor Rose, to get to the finish line. Rod leaves for China on 22 May and the race starts six days later from the breathtaking Great Wall of China. He has promised us regular, exciting updates along the way and many pictures on his Facebook page. Let’s see how many times he can get the Kidney Health Australia flag in his shots for all of us! Rod’s website (VintageAdventurer.com) and Facebook page www.facebook.com/VintageAdventurer will follow this extraordinary adventure and you can share their journey, every step of the way. Most exciting of all is the Wade Family will be raising money in order to launch a Kidney Campervans program. Their initiative will provide a holiday dialysis option through the availability of Kidney Campervans specially fitted out with dialysis machines. The Wade Family has already pledged $50,000 to kick start the program. More news will be coming your way soon!


2013 May Kidney Community