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Issue 31 – September 2013Kidney Community

Big breakthrough for live donations

Chelsea Bury, who is one of our wonderful Kidney Capers Kids, has paved the way for children seriously ill with kidney disease to receive transplants from donors who don’t match their blood type. Chelsea, 14, was the first child in Australia to receive such a transplant. It’s early days, but Chelsea’s kidney, donated by her father Nigel, 49, seems to be working perfectly, and the Sydney schoolgirl was out of hospital and home in just nine days. Chelsea participated in the Luna Park Kids Capers in

Sydney on July 27, 2013, and she’s looking forward to her first camp in April 2014 on the gold Coast

In order to be able to accept her father’s kidney, Chelsea had to undergo a series of therapies known as plasmapheresis, which is similar to dialysis, where the blood is cleared, not of toxins, but of the plasma that carries antibodies that cause organ rejection in transplants. Chelsea then received donor plasma that was anti-body free.

It’s been a tough year for Chelsea. She was born with kidney disease, though doctors thought her kidneys would last into her 30s. But illness triggered a sudden and terrifying kidney failure late last year. So began a seemingly endless series of tests, hospitalisation, and eventually dialysis to artificially filter her blood.

Professor Tim Mathew, Medical Director for Kidney health Australia, sees this opening the door for more children to receive live donations. ‘This is the most preferred treatment for children,’ according to Professor Mathew. ‘In the past it was not possible to cross the red cell barrier. But this technique, which has been well established for adults, now makes it effective for children. It will now open the door to a third more parents able to donate to their children.’

Chelsea (circled) and our Kidney Capers Kids at Luna Park

Our generous friends of KHA

Kidney health Australia’s national Big Red Kidney Walks provide a special time for the kidney community to get together, meet people in a similar position and together share their stories over an easy morning walk, followed by a free barbeque with entertainment!

Why not join us at a walk near you? They will be held on September 1. Don’t forget to arrive early to register.

• Adelaide: Elder Park near the Torrens River at 9am• Launceston: Royal Part at 10am• Melbourne: Royal Botanical Gardens at 9am• Perth: Taylor Park at 9am• Sydney: Tumbalong Park at 10.30am• Toowoomba on 8th September: Queens Park at 8.30am

online registrations have closed, but you can register on the day. So please gather your family and friends and come along to this great event! Registration is only $10 and free for children 12 years and under. We hope to see you there!

For more information on the Big Red Kidney Walk, visit www.kidney.org.au or phone 1800 454 363.

Join our Big Red Kidney Walk this Fathers Day

BIG RED KIDNEYBIG RED KIDNEY

Big Red Kidney Walk 2012

hEALTh/MEDICAL

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New evidence shows that certain lifestyle behaviours, such as not smoking, getting regular physical activity and maintaining a healthy body weight may help prolong the lives of individuals with chronic kidney disease.

The study by Ana Ricardo and colleagues, published in the Clinical Journal of the American Society of Nephrology, followed 2,288 participants with chronic kidney disease for an average of 13 years. Participants with the highest lifestyle score (non-smokers who exercised regularly, had a healthy diet and a body mass index in the normal range) were 53% less likely to die than participants with the lowest level of lifestyle behaviours.

The greatest benefit was seen with non-smoking – participants who had never smoked were 43% less likely to die during the study follow-up than people who smoked. Interestingly, participants who were underweight also had an increased risk of dying (30%) compared with participants who were in a healthy weight range.

The findings also point to the benefits of utilising the skills of allied health professionals such as dieticians and exercise physiologists, who can work with people with chronic kidney disease to plan a healthy diet and suitable physical activities. If you are not sure how to get in touch with a dietician or an exercise physiologist ask your general practitioner for a referral.

Source: Ricardo et al (2013). Clin J Am Soc Nephrol;8:602-609.

Adelaide policeman Wade Burns - Fundraising for KHA - Ironman competition in Cairns

Adelaide’s Wade Burns diagnosis of IgA Nephropathy that came “out of the blue” and caused him to increase his active lifestyle even more - by deciding to participate in his first full Ironman competition. The son of South Australia’s Police Commissioner, gary Burns, Wade competed in his first Ironman competition - a 3.8km swim, 180km bike ride and a 42.2km run through Queensland’s picturesque far North in June, while raising funds for Kidney health Australia. Wade’s inspirational effort raised almost $6000 for Kidney health Australia.

Surprisingly, it’s illness that has spurred the 34-year-old to push his body to the limit. Wade is living with an unexplained degenerative disease that could one day see him needing to have a kidney transplant. In 2010, he was diagnosed with IgA Nephropathy after passing black urine and feeling lethargic, a condition which means protein builds up in his kidneys and prevents them working properly.

Medicine cannot explain why it develops and there are no specific treatments. “It’s a condition where there is some uncertainty - it may plateau and not cause any further effects throughout my life or, worst case, it leads to kidney failure, which could require dialysis or a transplant,” Wade says.

At the time of his diagnosis, Wade was a member of the force’s elite STAR operations. “I had always led an active outdoor lifestyle, so it came as a bit of a surprise,” he says. “from what specialists tell me, a healthy, happy, active lifestyle is the best thing that I can do.” So, at the suggestion of wife Jade, he started competing in triathlons as a way to challenge himself both physically and mentally.

he is currently training up to 15 hours a week, under the eye of graeme Turner from fit2Tri - while also working his full-time, shiftwork police job, and being father to two little ones.

Source: Adelaide Advertiser, May 18, 2013

Healthy life – live longer!

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

Adelaide Policeman Wade Burns

Keeping active to live longer

CoNSuMER CoRNER

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Kidney Kar Rally success!our 25th Annual Kidney Kar Rally crew revved up for

an amazing 4,300 km journey on August 16. over 60 Rally Teams took part in the gruelling 8-day course with competitors travelling from Tamworth via Bundaberg and finishing in Armidale. The Rally Team raised a record $600,000 prior to the event, plus an additional $14,000 at the start dinner auction. Kidney health Australia staff travelled along the course and hosted events in local towns to raise awareness about kidney disease, a new initiative this year.

We would like to thank all participants, officials, and sponsors of the Rally Teams for their amazing support for Kidney Kids Camps and Kidney Kids Kapers. We would also like to offer our heartfelt thanks to our Road Directors Arthur and Kim Davis, and Repco Australia, our proud partner of the 2013 Kidney Kar Rally, who are critical to the success of this event.

Free call 1800 454 353or emailsubscribe@kidney.org.au to sign up!

Rod Wade and John Bell, the ‘Vintage Adventurer Team’ travelled over 12,000 kms from Peking to Paris in just 33 days in their Model A ford, and raised over $50,000 for KhA. The 5th Peking to Paris Motor Challenge Rally ran from May 28 to June 29 this year. organised by The Endurance Rally Association, the journey covered some of the most isolated places in the world:

Peking > great Wall of China > Inner Mongolia > gobi Desert > outer Mongolia > ulaan Baatar > Telmen Lake > Russia > Novosibirsk > omsk > Tyumen > Samara > ukraine > Kiev >

Lviv > Slovakia > Kosice > Bratislava > Austria > Schladming > Switzerland > gstaad > france > Troyes > Paris.

The holiday dialysis initiative, the Kidney Campervan ‘Travel freedom on Dialysis’ program, is being made possible through the large start up donation from the Wade family, whose initial $50,000 donation has meant work on this project can begin. This will provide those on dialysis with the opportunity to holiday in dialysis friendly fitted Kidney Campervans.

find out more about the Vintage Adventure at www.vintageadventurer.com.au

LIKE TO RECEIVE YOUR FREE COPY OF KIDNEY COMMUNITY EVERY MONTH?

Vintage Adventurer ensures dialysis patients have adventures of their own

Rod Wade and John Bell

Robert Cameron, Team 508Soggy start for Team 308

Joshua McDonald

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KIDNEY CALENDAR AND EVENTS

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Enjoyed a good read?Then do a good deed,When you get to the end,Please send to a friend!

Inaugural Kidney Ball1, 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

9-11 September 49Th ANZSN ANNuAL SCIENTIfIC MEETINg to be held at the Brisbane Convention and Exhibition Centre. Please refer to www.anzsn2013.com - Nephrology Update Course: 7-8 September.

15 September ADELAIDE KIDNEY CLuB – 12pm-2.30pm. hackney hotel, 95 hackney Rd, hackney (lunch provided). guest speaker: Dr Tim Mathew, Medical Director, Kidney health Australia. RSVP by calling 1800 454 363, or email club@kidney.org.au

29 September hoBART KIDNEY CLuB – 12pm- 2.30pm. Black Buffalo, 14 federal St, North hobart (lunch provided). RSVP by calling 1800 454 363, or email club@kidney.org.au

on friday 9 August, friends of KhA, Louise fairbairn and Richard Yann held the Inaugural Kidney Ball at the West Beach Bathing Pavilion, St Kilda. It was a fantastic success attended by 250 young people between 18 and 30 years and raised over $10,000! As you can see from the photos everyone dressed up for the occasion! A very big thank you from KhA to Louise, Richard and all involved!

Lamb shank soup

LIfESTYLE RECIPELooking for a warm and hearty winter meal? Try this fantastic recipe which is CKD and Diabetes-friendly and suitable for people on PD and HD.Recipe from ‘Dining In: Delicious Dialysis Recipes’ from the Renal Resource Centre

INgREDIENTS2 tsp olive oil4 lamb shanks, excess fat removed1 onion, chopped2 carrots, chopped 2 sticks of celery, chopped1 red capsicum, chopped1 medium zucchini, diced1 clove of garlic, crushed or chopped finely1 tbsp fresh or dried rosemary 2 medium tomatoes, diced1 litre salt reduced beef stock (homemade or use powder e.g. Massel™ salt reduced stock powder)2 cups water½ cup dry small pasta e.g. macaroni, risoniPepperParsley

CKD, DIALYSIS AND DIABETES-fRIENDLY

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

Each serve of this recipe will provide:1560kJ, 35g protein, 16g fat, 20g carbohydrate, 900mg potassium, 300mg phosphate, 750mg sodium

METhoD1. heat oil in a large saucepan over

medium heat. Add lamb shanks and cook for about 10 minutes, until golden. Remove from pan and set aside.

2. Add onion, carrots, celery, garlic, capsicum and zucchini to pan and cook for 5 minutes, or until soft.

3. Add shanks to pan with rosemary, tomatoes, stock and water and bring to boil. Reduce heat and simmer for 40 minutes, or until meat is starting to fall off the bone.

4. using a spoon, skim off any foam and excess fat from top of soup. Take shanks from soup, then pull meat from bone and chop. Return meat to soup.

5. Season soup with pepper and add parsley before serving.

Champagne celebrations

Our generous friends of KHA