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The NewsletterI for Kidney Health L FE June 2008 Geelong Cats Courage and Inspiration Kidney Health Australia has used the “In Tom’s case it is quite clear he has been and will continue celebration of World Kidney Day to recognise to be an inspiration to people suffering with kidney disease young Geelong Cats star Tom Lonergan for his through his courage and determination to get back in the outstanding display of courage and inspiration game and on with life.” to all patients suffering with Chronic Kidney Ms Wilson said Kidney Health Australia has also recognised Disease. the Geelong Cats through its Board, staff, players and supporters for the encouragement and assistance it provided Tom had a kidney removed as the result of a football Tom to cope with the traumatic life-changing experience of injury in an AFL game late in 2006, however he made a losing one of his kidneys. triumphant return to the game in 2007 including the VFL Grand Final kicking six goals and has now returned to “Whilst World Kidney Day is based on awareness and the the senior team. fact that only 5% of people know where their kidneys are and what they do, we also see it as a day to celebrate the Anne Wilson CEO of Kidney Health Australia speaking courage and determination of people to cope with kidney at the launch said the Operation Angel Awards recognise disease and the often unsung efforts of their carers, friends people and organisations that make an outstanding and families who support them.” contribution to Kidney Health in Australia in the medical, carer, and public awareness fields. Ms Wilson also thanked Amgen for hosting the event at its headquarters in Hawthorn.

World Kidney Day launch Left to right: Bernie and Tricia Lonergan, Tom Lonergan, Brian Cook CEO Geelong Cats, Elise O’Neil and Anne Wilson CEO Kidney Health Australia at the presentation of the Operation Angel Awards. Kidney Health Community Australia Appoints Seeks New Chairman Information on Silent Killer

There was a 20% increase in the calls to the National Kidney Health Information Service 1800 helpline due to increased public awareness of kidney disease known as the ‘silent killer’. People can lose up to 90% of their kidney function and not even know it. The National Kidney Health Information Service line took some 3100 calls in 2007. The National Kidney Health Information Service line continues to offer information, support and resources to those affected by kidney Angela Reddy disease and their families. Chairman Kidney Health Australia Information services are also offered to members of the public and health professionals. Kidney Health Australia has appointed Ms Angela Reddy as its new Chairman. Enquiries to this service are received via the freecall 1800 4 KIDNEY Ms Reddy has a strong background in health (1800 4 543 639) number, TTY services, state office calls, direct policy development and administration contact in person at each state office, emails and faxes. having worked in the Commonwealth This service does not offer medical advice and is intended for Department of Health for more than information and referral purposes only. It is the first port of call for 30 years. many people who are finding it hard to cope with kidney disease During the period 1997-2003 Ms Reddy worked either as a patient or a carer. as adviser to several Federal Government ministers. And from 1993 oversaw the The total number of information resources distributed by Kidney development of key reports on Australia’s Health Australia during 2007 also grew from 387,806 to 435,335, an National Health Priority Areas informing all increase of approximately 9%. Health Ministers about the impact of major While the number of patients accepted onto dialysis programs chronic diseases. continues to spiral upwards, with an increase of almost 8% in 2006 Ms Reddy returned from a four year period over 2005, we are preparing for increased demand for all Kidney as Tasmanian State Manager for Department Health Australia information services due to increased promotion of Health and Ageing in 2004 and took up the and awareness of issues surrounding kidney disease. position acting as head of the Rural Health Branch. She retired from the Commonwealth Public Service in March 2007 and has been a member of the Kidney Health Australia Board since that time. Anne Wilson CEO of Kidney Health Australia paid tribute to Professor Villis Marshall who retired as Chairman of the Board of Kidney Health Australia after serving on the Board from 1996 to 2008 inclusive and was elected as Chairman in 2002. Ms Wilson said his period as Chairman has seen significant changes in areas such as raising clinical and public awareness of the impact of kidney disease. Thanks largely to his stewardship Kidney Health Australia is now well placed to move forward on the Board’s key goals and objectives. Kidney Health Week 24-31 May 2008

and 40 Angels The Federal Health Minister Nicola risk of heart disease if their waistlines are greater than Roxon will officially launch Kidney 94cm and at high risk if it is over 102cm. Women are Health Week at Parliament House in at increased risk of heart disease if their waistlines are on Monday 26th May 2008. greater than 80cm and at high risk over 88cm. Other events for Kidney Health Week • eating a healthy diet, will take place around the nation in • making water your drink of choice, Australia’s capital cities. • drinking alcohol only moderately. No more than two To celebrate its 40th birthday Kidney standard drinks a day for men and one for women, and Health Australia will also officially • making sure your blood glucose is well controlled if you The Hon. Nicola Roxon recognise forty Angels from around have diabetes. Minister for Health and Ageing Australia from all walks of life that have made a significant contribution To order a free copy of our Early Detection to assisting Kidney sufferers and contributed to the work of and Prevention health book with tips Kidney Health Australia. on keeping your kidneys healthy, please email The continuing theme of will [email protected] be the focus of Kidney Health Week to stress the ongoing or visit www.kidney.org.au importance of early detection. Kidney Health Australia will take its message to schools with its special mascot Billy the Kidney. Cut your risk Be aware of the risks and take the right steps to prevent kidney damage. You can reduce your risk of kidney disease by: • being a non-smoker, • controlling your blood pressure, • staying fit. Do at least 30 minutes of physical activity on most days of the week, • maintaining a healthy weight. Men are at increased

Kidney Health Releases New TV Advertisement Our new community service announcement advises that about 2 million Australians may be affected by early-stage kidney disease and not even know it.

Research shows over 25% of all patients coming to dialysis and transplantation did not see a specialist until less than 90 days before dialysis started. Are you at high risk for Chronic Kidney Disease (CKD)? Check Your Situation. This ad can be viewed by going to our website: www.kidney.org.au

The Newsletter for Kidney Health Australia November 2007 Roxby Downs makes history as part of first Kidney Screening Program in Australia

Roxby Downs has taken its place in KEY Program at history as one of the first locations Olympic Dam Roxby Downs in Australia to undertake a screening Left to right program for Chronic Kidney Disease Dr Tim Mathew Medical Director (CKD). Kidney Health Australia Anne Wilson CEO Kidney Health Australia Kidney Health Australia with the support of Olivia Corso CKD Early Detection the Federal Government and BHP Billiton Project Officer Kidney Health launched KEY – ‘Kidney Evaluation for Australia You’, an early detection program to evaluate Professor Alan Collins, Director and Principal Investigator for the US kidney function, cardiovascular health and Renal Data System Coordinating diabetes in high risk individuals. Center

With 1 in 3 Australian adults at increased risk of developing CKD, Roxby Downs residents who are in the “high risk” group were able to book in to have a free KEY health check.

The high risk group is as follows: KEY Program at • Anyone 50 years and above or 35 years Olympic Dam and above if of Aboriginal and/or Torres Roxby Downs Strait Islander origin Olympic Dam miner being tested by • Anyone with diabetes Julie Reynolds.

• Anyone with high blood pressure (on or not on treatment)

• Anyone with a first degree relative (mother, father, brother or sister) with kidney disease KEY team Until now a primary health care program Left to right: Mark Shephard, for chronic kidney disease detection has not Rebecca Taylor. Anne existed and the program in Roxby Downs Shephard, Anne Wilson, was a significant signpost for the future Professor Alan Collins evaluation and detection of Kidney disease. and Olivia Corso

CKD is often referred to as the “silent killer” as 80-90% of kidney function can be lost before an individual experiences any symptoms. Yet the level of awareness of CKD amongst the general public and health professionals is low and many risk factors KEY team at of CKD are modifiable. BHP Billiton offices in Dr Tim Mathew, Medical Director of Kidney Left to right: Health Australia, attended Roxby Downs Mark Shephard, Fran Skilton, for the KEY program and said, “a KEY Julie Reynolds, program is vital in Australia to reduce the Olivia Corso, burden of kidney disease and kidney failure Rebecca Taylor. and the program is the start of one of the most important and effective primary care programs to manage CKD in Australia.” Government Urged Sheila’s Kidney to take Immediate Survival Strategy Action on By Cameron Munro Kidney Disease can mean dialysis, a transplant Transplant Report and often results in early mortality, but Canberra resident Sheila Perryman has shown 56% of all organ transplants it is possible to live a long and comparatively are kidney-related normal life with the disease. Sheila, 71, was diagnosed with a renal problem after giving birth in 1962. And yet 46 years later she has never The Federal Government’s move to establish had to resort to dialysis or a transplant. a joint clinical and government committee A former nurse and Day Care Supervisor, Sheila puts to oversee policy and program reforms to her present situation down to a number of factors – diet, Australia’s organ and tissue donation and support from family and friends, the work of her local transplantation sectors, was good news for renal clinic, and a positive frame of mind. kidney transplant patients and their families. After giving birth in 1962, Sheila was diagnosed with high Kidney Health Australia believes establishing a national blood pressure and a specialist identified her kidneys organ and tissue donation and transplantation authority were failing. To have another baby would have been a to coordinate activity and implement program reforms in disaster for her health. She regularly saw a GP until 1983 the future will provide far better outcomes for individuals when her condition worsened and she began attending and the community. the renal clinic at Canberra Hospital. Every day, 6 Australians commence expensive dialysis or She hit a low point in December 2001 when diagnosed transplantation to stay alive. with renal failure – 25 per cent of renal function (the average person has 90 per cent kidney function and at Kidney transplantation is successful in 90% of cases and 10-15 per cent a person will require dialysis). It was then Australia has one of the best success rates of kidney she was told she would be on dialysis within six months. transplant survival in the world. Her brother offered to give her a kidney, but blood tests The Taskforce report contains far-reaching determined he would not be a suitable donor. recommendations aimed at all aspects of the organ Her condition meant a change in lifestyle, especially due donation process including the barriers that exist in the to increased tiredness. “I found the only thing to do is to system to increasing the organ procurement rate. stop, even if only for an hour,” Sheila says. Kidney Health Australia urges the Federal and State She saw a renal dietician and has continued to watch her Governments to take immediate action to implement the diet. There are restrictions on protein and vegetables. recommendations in the Taskforce report. The additional Chocolate is a no-no. “Lots of patients don’t want to worry funding required to implement these recommendations about diet, but it’s helped me.” She also takes medication is totally justified given the cost-effectiveness of kidney daily to manage blood pressure and calcium levels. transplantation and the improved survival for patients Support from family and friends has been invaluable. “We moving from life on dialysis to transplantation. told six friends and they have been the most wonderful Patients on dialysis and their families are under great support.” pressure waiting for the telephone call which could spell a Today, Sheila’s kidney function is at about 20 per cent. new chance at life through a kidney transplant. She continues her visits to the renal clinic every month Implementation of the Taskforce recommendations will or two. She describes the people there as “supportive and ensure the telephone rings more often in the homes of the fantastic”. 1400 Australians waiting today for a kidney transplant. In recent years Sheila has taken on a role as a guest speaker for Kidney Health Australia, allowing her to share her knowledge and experience with others. These days the focus is on early detection, something which was vital in her situation. “Because it’s a hidden condition, people can be walking around with kidney disease and they don’t know it.” And despite her difficulties, Sheila hasn’t let her condition take over her life. “I push it away. I don’t let it swamp my life. I try to cope with it positively,” she says. And she also values faith. “The power of positive Anne Wilson thoughts helps.” Chief Executive Officer Joe Ryan’s story By Cameron Munro accommodation costs, but he says had no ill effect whatsoever. The body For Joe Ryan, donating a kidney donors should receive support for the works just as well with one kidney. The wages they lose. only restriction is you can’t play hard to his brother turned out to be “I must admit I must have been contact sports, or smoke or anything an uplifting experience. But it like that that’s going to be a detriment also made him aware of the need awfully naïve there,” Joe admits. “I just took for granted that you would be to your health.” for more financial support for compensated for your wages. It wasn’t And, despite the financial concerns, Joe people in his situation. until most of the tests were done that is keen to encourage other people to About three years ago, Joe’s electrician I started thinking “I better ask about consider becoming a donor. brother, Peter, 60, was diagnosed with this” and that’s when I found that there “If people know anybody that’s on a form of kidney disease called IgA. He is no help whatsoever to help you pay dialysis, please go and be tested to see was put on dialysis immediately. your bills or wages.” if you can donate. Because it’s the most After Peter’s sister and wife were ruled Joe had to close his one-man dog uplifting experience I’ve ever had, to out as donors, Joe, a healthy blood grooming business in Newcastle for see the difference in my brother in a donor for 25 years, was happy to step four weeks while he recovered from matter of a week was unbelievable. It’s in and donate a kidney. The transplant the operation. It cost him about $7000. a very humbling experience actually operation took place on 17 October He says he wonders how any young to be able to go through and come out 2007 at ’s Westmead Hospital. person with a family could afford to the other side and see the difference Peter surprised the doctors by being become a donor. you have made and the quality of life you’ve given somebody.” able to return to full time work after The average wait for a donated kidney three months, with no signs of kidney is four years, with waits of seven years rejection. And Joe, 54, is back to normal not uncommon. However, patients can too. receive a kidney sooner if there is a But while the experience was a living donor, usually a relative. Success positive one, Joe was surprised to find rates are also higher with kidneys from how little financial support there is living donors. However, Joe is one of for living kidney donors, despite the only a small number of Australians to fact that a kidney transplant saves the become a living donor. In 2004, there health system about $75,000. were 649 kidney transplant operations He discovered the only government in Australia, with just 243 of these support was 30c per litre for petrol involving live donors. and $35 for overnight accommodation. “One of the main things I’ve got to get Joe was willing to bear his travel and across is that it is just so easy; I have Joe Ryan

Give the Gift of Life with a Bequest Over the years, the generosity Kidney Health Australia would like Please call (03) 9674 4300 Melbourne of people leaving a bequest to to honour individuals during their for Victorian and callers. lifetime, whilst we are able to show Kidney Health Australia has been (02) 9299 4599 in Sydney for our heartfelt appreciation to living exceptional. Every bequest no , ACT bequest benefactors. If you have made matter how large or small has an and callers. enormous impact on our ability to a provision in your Will to support plan for the long term. the work of Kidney Health Australia, (08) 8334 7555 in we encourage you to notify us of this for South Australian callers. We gratefully acknowledge and thank wonderful gesture. those families and donors that have (08) 9381 9311 in Perth made this lasting commitment and We would be honoured to welcome you for West Australian callers. shared in our vision for a future to our Bequest Society, engraving your generation free of kidney disease and name on the Honour Boards, which urinary tract disease. are located in our national office in Melbourne and each State office around Each gift helps provide vital support in Australia. our commitment to caring for families and children touched by chronic kidney If you would like further information disease. on including a Gift in your Will, please write to or email Susan Sayer, National This year ushers in the 40th Anniversary Bequest and Development Manager, at for the Australia Kidney Foundation, [email protected] or GPO Box now known as Kidney Health Australia. 9993, Melbourne, VIC 3001. As we acknowledge 40 years of living and giving, may we invite you to come Amanda Hansen forward for acknowledgement as a Corporate Partnership Bequest benefactor. Manager A part of Sarah is dying

Looking at this picture you’d never know Sarah was sick. Neither does she. That’s because kidney disease has no warning signs. Like Sarah, you can lose up to 90% of your kidney function and still feel perfectly fine. With 1 in 3 Australians at increased risk of kidney disease your donation could save someone you love. Call 1800 4 KIDNEY (1800 4 543 639) or visit www.kidney.org.au

Names and images have been changed to protect subject’s identity. Tassie Bikers Raise funds for Kidney Patients Departing from Richardson’s Harley Davidson at Prospect and riding to Salt’s Bar Shearwater, Tasmanian bikers showed their support for the lifesaving work carried out in Tasmanian renal units.

Funds raised are being distributed to renal units in Burnie, Launceston and for the purchase of items and equipment to improve patient comfort while undergoing lengthy dialysis sessions.

Funds will also be directed to Kidney Health Australia for production of public information about early detection and treatment of kidney disease.

Carolyn Mackintosh from Kidney In the grounds of Royal Hobart Hospital. Health Australia says the event is Left to right: Rodney Bilbin Shannons Insurance, Marshall Bird Transplant recipient great fun for everyone who owns Debbie Farrow Transplant recipient and KHA volunteer, and Anna Sear Renal Unit Hospital Aide a bike. This year the event saw over 200 bikers take part with approximately $8500 raised.

Kidney Health Australia thanks all organisers including Richardson’s Harley Davidson at Prospect.

Help Make A Difference You can make a difference by raising funds for Kidney Health Australia in your own community. Many fundraising volunteers take on simple ideas to raise funds. Simple things like having a morning tea, garage sale, lunch or an open garden are all ways that you can provide some enjoyment to others as well as making it a fundraising opportunity. Talk to us about your idea, we have many fundraisers keen to share their experiences with you and how they started with the idea. Not only are you getting involved in your local community but you are also raising awareness of our work. Recycling Contact Annette Smith on (03) 9674 4305 or [email protected]. Don’t know what to do with au to discuss your idea, receive support and materials to get you started. your old car? If you reside in the Adelaide or Melbourne metropolitan area, your old car can Spreading the word be fully recycled and you can make a contribution to Kidney Health Want to talk about kidney health in your own community? We can train Australia. You will receive an you to become a speaker and deliver our health messages to your local income tax receipt for the value of community groups. You will receive training via a teleconference along your donation. Just call the Kidney with materials all for the cost of a local phone call. Car Hotline on 1800 352 550 to Stand up and become an ambassador, your voice could change a life and arrange collection. If you reside make a difference in your community. in other areas, call your local car recycler to arrange collection and For training session details please contact Annette Smith on (03) 9674 send us your recycling cheque. 4305 or [email protected] Training takes about an hour and is conducted both during the day and evening. On The Road with Arthur and Kim Nine or ten years ago a friend of ours who was, and still roads and tracks. We also publicise the rally in all the is, a competitor in the Kidney Kar Rally asked us if we’d areas we travel through, do radio and press interviews be interested in organising the event. At first we were a and drop flyers into letterboxes throughout the rural little hesitant as we were from the ‘full-on’ competitive areas where the rally passes. We spend up to 20 weeks rally fraternity and had never had anything to do with a year ‘on the road’ and the rest of the time is spent at charity rallies. Arthur, a previous State Rally Champion, home on the phone and computer putting everything has been rallying for nearly 40 years and competed in together. State and National Championships as well as many long All in all, we have a very interesting and varied life distance events such as the Repco Round Australia, meeting new people on our travels and thoroughly Australian Safaris, and the 1977 London to Sydney enjoying the company of all our ‘rallytives’ each year. Marathon etc. We were also in business at this time and needed to sell before we could even consider such a Cheers and thanks. life change. As it turned out, the business sold and we Arthur and Kim Davis tendered for the job and the rest is history, as they say! We have now been organising the Kidney Kar Rally on behalf of Kidney Health Australia for the past eight years. In that time we have travelled over three quarters of a million kilometres, totally destroyed one Landcruiser and now have almost clocked up a quarter of a million kilometres on the second! We have taken the rally through most of New South Wales, the Australian Capital Territory and , a lot of Queensland, and the and in 2009 we plan to start the event in Tasmania, so that will only leave to conquer! Our job entails setting the course each year, organising all the catering and accommodation, liaising with the various State Forests, National Parks, Councils and Private Property owners and securing permits for the rally to travel through their

2008 Kidney Kar Rally Field Growing The number of entrants in the 2008 Kidney Kar Rally is growing with 50 vehicles in the event at this stage. Neverfail Springwater Partnership - Drink to a good cause campaign Neverfail Springwater and Kidney Health Australia have combined efforts for the second year running as part of Kidney Health Week 24th May to 31st May 2008 to raise awareness of kidney disease and the health benefits of drinking water to all Australians! Commencing 1st May 2008, as part of Neverfail Springwater’s ‘Drink to a good cause’ campaign, Neverfail bottles will feature customised red caps, and 600ml cartons will also be coloured red. In 2008, Neverfail will donate $50 to Kidney Health Australia when you become a new annual cooler rental customer. In addition, Neverfail will donate $1.00 to Kidney Health Australia for every case of 600mL bottles sold between 24th May - 31st July 2008. Let’s drink to a good cause. Together we can make a difference! Don’t Dump it …..Donate it! Help us achieve our vision of Australia free of kidney and urinary tract disease, by donating your unused mobile phone.

About 10 million unused mobile phones are hiding around Australian households. So instead of them going to landfill causing damage to the environment, they can be recycled.

For every mobile phone you donate, Kidney Health Australia receives income, so get your family and friends involved and start collecting!

Approach a business to participate, to increase the opportunity for many others. The best part is, we provide everything for you!

Free standing sachet holders are suitable for reception desks, 24 x13 x 40 cm high. Each prepaid satchel will hold 3-5 phones for easy postage.

Our free standing boxes for recycling are suitable for reception areas or stores, 310 x 330 x 770 cm high and hold many phones.

Donating phones is easy, satchels are prepaid, so just post. A courier collects phones collected in bins so there is no cost to donors.

Kidney Health Australia is the lead organisation promoting kidney and urinary tract health through research, consumer participation, education and health service. To be involved or for more information contact.

Kidney Health Australia, 344 St Kilda Road, Melbourne Vic 3001 Phone 03 9674 4300 • Fax: 03 9686 7289 • Website: www.kidney.org.au • Email: [email protected] Kidney Health Australia 40th Birthday celebrations in Western Australia As part of the Kidney Health Australia 40th Birthday celebrations in Western Australia we have started a band called KHAOS – Kidney Health Australia on Stage.

KHAOS will be performing live at the Kidney Health Australia West Australian Launch of Kidney Health Week and 40th celebrations in 2 weeks – in front of the Health Minister and CEO of Transplant Australia who is flying to Perth for the event. KHAOS may even get a gig at the Transplant Games this year!

The night is going to be khaotic for sure….. but this is one of the most exciting celebration concepts I have had - the bringing together of a mix of health professionals, consumers, volunteers and KHA staff to celebrate 40 years of KHA.

Julie Edmonds WA Area Manager – KHAOS Band Manager Kidney Health Australia

Members of the band photographed recently at the final dress rehearsal: We have Dr Harry Moody on keyboard, Harry’s son Ben on trumpet, Dr Mark Thomas on guitar, Thomas Klopcic (received kidney transplant 2 weeks ago!) on bass guitar, Matthew Fitzsimmons (on dialysis 4 years) on lead guitar, Adam Boyle (pre-dialysis) on drums, Maree Chetkovich (kidney kid volunteer) on flute, Isaac Edmonds (son of a living donor and my personal favourite .. but don’t tell the others) on guitar and Dr Jonathan Lacey (who happens to only have 1 kidney) on vocals! Julie Edmonds is Band Manager and Shelley Harwood is Technical Director.

For more information about kidney and urinary Australian Capital Territory South Australia Western Australia health or Kidney Health Australia please contact: Ph: 02 682 8605 Ph: 08 8334 7555 Ph: 08 93 81 9311 Kidney Information Line 1800 682 531 New South Wales Tasmania TTY Service 1800 005 881 Ph: 02 9299 4599 Ph: 03 6231 9663 Lottery Call Centre 1800 352 550 Queensland Victoria Motorsports 1300 300 544 Ph: 07 5591 3040 Ph: 03 9674 4300 1800 4 KIDNEY (1800 4 543 639)