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Kidney Community Issue 23 – December 2012 A note from our CEO, Ms Anne Wilson

As another year draws to a close, I wish to take this opportunity to thank you all for making 2012 a great year for Kidney Health Australia. The year has been marked by many worthy achievements that involved establishing new partnerships with local communities, individuals and organisations; welcoming new talented and passionate staff to our national team; raising awareness of kidney disease through increased media exposure, new events and our long-standing initiatives such as Kidney Kar Rally and our National Kids Program; raising funds for research; training

and educating GPs and supporting those with kidney disease through our health programs around the country. We have been single-minded in our quest to “save and improve the lives of Australians affected by kidney disease”. On behalf of all at Kidney Health Australia – our management and Board I take this opportunity to wish you all the very best for the festive and holiday season and hope that the new year is filled with much joy, good health and personal happiness.

Recognise an “angel” in your community NOMINATIONS OPEN FOR 2013 OPERATION ANGEL AWARDS

Do you know someone exceptional who has made an outstanding contribution within the Australian kidney community? Then we’d like to hear from you. The Operation Angel award was founded by Kidney Health Australia to recognise and honour those who inspire us within the Australian kidney community. Your nominee should represent one of the following categories: a person living with or affected by a kidney condition; carer of a person living with or affected by a kidney condition; family member or friend of a person living with or affected by a kidney condition; volunteer working within the kidney community; health professional working within the kidney community; organisation supporting people living with or affected by a kidney condition; a high profile Australian raising awareness of kidney-related conditions; other (e.g. fundraiser, event organiser).

You can apply here to nominate your angel. For more information email operationangel@kidney.org.au or call 1800 454 363. Act now, as nominations close on Sunday 3 February 2013.

KHA advocating a success with NSW organ donation reform Kidney Health Australia is pleased by the decision of the NSW Government to decommission the NSW Roads and Maritime Services Organ Donor Register and move to the single national register-the Australian Organ Donor Register. The change is a key part of a broader strategy to remove the significant barriers to organ donation, while working to double organ donation rates in NSW – currently the lowest in the country. KHA CEO Anne Wilson said: “This move to align New South Wales with the rest of Australia is a reform Kidney Health Australia has been advocating for some years. It will mean individuals can make a decision on organ donation in a considered and appropriate manner and share the discussion and decision with their families. This will hopefully result in

more Australians on the waiting list being granted their lifesaving wish for a transplant.” Kidney Health Australia spoke out on this issue widely across Sydney media. Remarks from CEO Anne Wilson were sought after on all Sydney commercial talk stations, ABC radio and a local paper. For more on our stance towards NSW organ donation reform, read our media release More broadly, Kidney Health Australia has continued to advocate on a wide range of other policy issues including kidney cancer, activity-based funding and home dialysis, chronic disease and kidney health in Indigenous communities so watch this space for the latest updates in the coming year.

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MEDICAL MATTERS

A healthy holiday guide Surviving Christmas with healthy habits intact can be tricky for anyone, but for those with kidney disease there’s more at stake than just an expanding waistline. Be aware of any dietary restrictions, establish your health goals, and use these tips to help prepare for upcoming social events that may tempt you to turn away from your kidney-friendly lifestyle. Here are some tips to help kidney patients stay on track during the holidays: • If you haven’t already, learn to read food labels. See the ‘How to look after your kidneys’ fact sheet under ‘For Patients’ at www.kidney.org.au for more information. • Practice portion control and set yourself limits on certain foods you find tempting. • Desserts can be extra challenging, but it’s possible to have your cake and eat it too! Some kidney-friendly choices include trifle, meringues, sponge cake, cheesecake, and apple pudding. • Watch the salt! Steer clear of salty foods such as potato crisps and salted nuts. • Make water your preferred drink. • Sit less, move more. Get up from the table and go for a walk with your family or friends. And remember... if you overindulge one day, just get back on track the next. How to look after your kidneys

Jo Fairbairn KHA Community Education and Health Promotion Manager and Emma Britt AHCSA Clinical Educator, Education and Training Team

KHA at Pika Wiya – Port Augusta, South Australia

Last month, Kidney Health Australia was invited by the Aboriginal Health Service of South Australia to present on Linking Kidney Health, Cardiovascular Disease and Diabetes in the Certificate 3 Aboriginal Health Worker Training Program held at Pika Wiya Health Service in Port Augusta. Students for the program travelled many kilometres from a number of remote Indigenous communities to participate. An entire day was dedicated to kidney health, as education around chronic kidney disease and end-stage kidney disease is of such importance in Indigenous communities. The students learned from each other by sharing stories of family members who have end-stage kidney disease and are on dialysis and others who have had a kidney transplant. Particular interest was given to the treatment options for end-stage kidney failure. One of the students shared her sister’s story on peritoneal dialysis at home and how well this is working for her. This narrative was a very powerful contributor to the success of the day. KHA gave each participant an education kit that included the fact sheets on all topics discussed in the training day. You can get your own fact sheets at www.kidney.org.au Kidney Health Australia acknowledges the excellent community partnership with the Aboriginal Health Centre of South Australia in the area of community, community education and health promotion.

KHA connects with the Samoan community

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Throughout 2012, Kidney Health Australia has been working closely with Multilink Community Services Inc. in Logan, Queensland to offer kidney awareness education sessions to multicultural groups in the Samoan, Burmese and African communities. Last month, KHA and Multilink delivered an educational session on preventative kidney health to a large Samoan audience. A high proportion of the Samoan audience was diabetic and unaware about the potential risks of developing chronic kidney disease (CKD). The session discussed kidney health and the importance of speaking to your GP about kidney health checks. This session was considered a big success with the education of those at risk of CKD, as well as the incorporation of multilingual resources into Samoan that the participants were able to take home and share with their extended families. A special thanks to those who from Multilink to get this program running with KHA -Aisha Omar, Natural Helper Program Coordinator - Integrated Migrant & Cultural Services and Maggie Spinda, Day Respite Supervisor in Aged, Disability and Social Care. If you wish to work with Kidney Health Australia on your local community health event, contact the National Health Services Manager, Anne Revell at anne.revell@kidney.org.au Samoan community member Felagai Pimoe and or call 1800 454 363. KHA’s Health Project Officer Amber Williamson


CONSUMER CORNER The Clarkes’ greatest gift The Clarkes were told that their newborn daughter, Dulcie had the odds stacked against her. When Dulcie was in utero, one of her many complications was a rare genetic disease where multiple cysts grew on her kidneys and prevented the lungs and other organs from developing properly. Dulcie’s mother Nami was told of Dulcie’s condition when she was 33 weeks pregnant. “When you are told that your unborn child has a life-threatening illness, you feel very powerless in the big wide world of genetics. No amount of begging, pleading, asking nicely, even combined with all the wonders of modern medicine will undo the situation,” wrote Nami on her Everyday Hero page, to raise funds for Kidney Health Australia’s Big Red Walk this year. The Clarkey’s Kidneys team were the top fundraising team for the Big Red Walk, raising over $8,000. Now at six months old, Dulcie’s doctors say that once she gains weight (which will be difficult), dialysis treatments and kidney transplantation will be explored. However, Nami said that specialists who had feared and expected the worst are thrilled with her child’s progress. Although Dulcie is a long way from the ability to talk, she has already given her mother a wonderful gift with the reminder to live in the present and take every moment as it comes. Nami said: “She has taught me that unless you can take the joy out of the most difficult situations, I will be left with nothing. This has been the hardest of lessons learnt, but I am grateful to have this as my lot in life, good, bad and everything in between, and beyond lucky to share it all with my beautiful baby girl.”

CONSUMER EVENT RECAP

Henry Giblett Adult Holiday Dialysis Program West Australian adults had the unique opportunity of receiving holiday dialysis at a recent KHA event held in Busselton, WA. The program is the only one of its kind in Australia. KHA provided 20 haemodialysis patients and their families, friends and carers with a week of respite at the Grand Mercure Resort. The Henry Giblett Adult Dialysis program involves the installation, coordination and staffing of a temporary dialysis unit at the popular WA holiday destination, supported by subsidised accommodation, meals, activities and transport. The facility is installed at the St John Ambulance Sub Centre and allows patients to dialyse throughout the week. Establishing a temporary dialysis unit provides extra dialysis chairs to be set up in a non-hospital setting, within walking distance to the beach, and staffed by nurses in casual attire; all contributing to a relaxed ‘holiday’ atmosphere. Thanks to all who made this program possible.

LIFESTYLE RECIPE CKD, DIALYSIS AND DIABETES-FRIENDLY

Slow cooked turkey breast with carrots & cranberry gravy Recipe adapted from DaVita.com recipes

WHY IS THIS GOOD FOR ME? This healthy and hearty festive Christmas recipe is low in salt, potassium and phosphate and suitable for people with CKD, diabetes and those on dialysis.

INGREDIENTS

METHOD

• 700g skinless turkey breast • 1 teaspoon paprika • ½ teaspoon low-salt chicken stock powder • 1 cup cranberry sauce • 2 sticks of celery, diced • ½ brown onion, diced • 2 medium carrots, diced

•P  lace turkey breast in slow cooker and sprinkle with paprika and chicken stock. •S  poon cranberry sauce on top; add celery, onion and carrots. •C  over with lid, turn heat to high and cook for 4 hours. •S  erve with salad and a bread roll.

SERVES 6

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

How to 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.

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KIDNEY CALENDAR AND EVENTS Mid-December

KHA to notify all research funding applicants if they were successful — results will be announced publicly on the KHA website in early 2013.

EVENT RECAP

KHA consumer forum, Launceston, Tasmania

OUR WEBSITE’S WON AN AWARD! Kidney Health Australia’s website – www.kidney.org.au has become ‘Gold Certified’ in the Domain Hall of Fame on the internet domain hosting site, nerdydata.com. Our website ranked 99 per cent higher than other websites that NerdyData indexes. Congrats!

KHA’S Golf Day:

Tee off for kidney health!

The recent Kidney Health Australia consumer forum held in Launceston included 50 participants who enjoyed an excellent forum with presentations from Dr Tim Mathew, Kidney Health Australia’s Medical Director, presenters from Heartmoves on the importance of exercise and a presentation on Tai Chi, and a session on the importance of nutrition and reducing salt intake, facilitated by dietician Lisa Clark. Participants also heard some great presentations from consumers on their experiences living with dialysis at home and the experiences of donating and living with a kidney transplant. The forum received excellent feedback from participants and was a great opportunity to gain practical information and understanding about health and lifestyle options when living with chronic kidney disease. KHA looks forward to the continued success of these forums and reaching as many consumers as possible in Tasmania. We would welcome your ongoing suggestions for topics, so please contact Sarah Challenor with any ideas for 2013 at sarah.challenor@kidney.org.au or at (03) 6348 7533.

REGISTER TO RECEIV E KIDNEY CO M WIN AN IPA MUNITY – D! D

on’t be a strang er! If a friend has lent you th is copy of Kid ney Community, si gn up to receiv e an email version of this newslet te r and you may win an iPad. Email yo ur full name to subs cribe@kidney.o rg.au and you may be our lucky winne r! 4

On Friday, 15th March next year we are teeing off once again for Kidney Health Australia’s 10th annual Charity Golf Day at the prestigious Huntingdale Golf Club, Melbourne. Proudly sponsored by Subaru Melbourne and Source Central Partners, our golf day is great fun and always receives excellent feedback from all who participate. We invite you to join us and help us make a real difference as we raise funds to support vital health and medical programs for our Australian kidney community. Join us for lunch, 18 holes of golf, and a fun-filled evening with dinner, excellent entertainment and an auction offering superb items. If you don’t play golf, we’d love to meet you for drinks and dinner. Please contact us if you are interested in sponsorship or donating a prize. We are presently taking registrations for teams, individual players and dinner guests so please contact us for more details at daniel.glaubert@kidney.org.au or (02) 9299 4599.

Tamar Renal Support Group spreads awareness of kidney disease The Tamar Renal Support Group promoted kidney health awareness at George Town, Tasmania last month. The group had great support from the community and got some media exposure with a feature with the local radio station, Chilli FM. Would you like to spread awareness in your local community? Contact Annette Smith at annette.smith@kidney.org.au or (03) 9674 4305.

2012 December Kidney Community Newsletter  

Kidney Community December 2012 Newsletter

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