Transplant, games, recipients, donors & medical professionals in Australia

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January Newsletter

Australian Transplant Games - Geelong Victoria 16 - 23 September 2006


The Australian Transplant Games will be held in Geelong, Victoria from 16 to 23 September 2006. We expect over 1,200 people to attend from all states of Australia as well as China, England, France, Germany, Japan, Malaysia, New Zealand, Singapore, Sweden, Thailand, the USA and possibly others. Twelve sporting and four recreational events are offered over six days of competition. The Games are open to adult and children transplant recipients and dialysis patients. Living donors, families of deceased donors and supporters are all welcome to attend. They are very much a family orientated event, with many activities for children and we encourage as many families to attend as possible. If you haven't had the pleasure of attending a Transplant Games event yet we strongly urge you to plan for Geelong. Registration forms will be sent to all members in February 2006.

England vs Australia - David Hookes Memorial Transplant Cricket Series


The Australia Tranpslant Cricket Club Tour of England - 2006 Last year in Adelaide and Sydney, the Transplant Australia Cricket Team played the English Transplant Team in the first ever David Hookes Memorial Trophy and won 3 games and drew one. On 5 March 1877, the first ever cricket "Test" was played. Australia won by 45 runs. In 1882, against all odds a Fred Spofforth inspired Australian Team won on English soil. In 1883, a Ms Florence Morphy and other Ladies of Melbourne purchased a silver urn into which they placed the Ashes of a burnt bail or stump & presented it to the English captain, Francis Bligh. In March 1977, Australia won the Centenary Test, again (amazingly) by 45 runs. In 2004 the Transplant Australia Cricket team won the first ever David Hookes Memorial Trophy on an undefeated 4 game basis. In 2006 the challenge continues; this time on the common and village greens of England. BE A PART OF HISTORY and create a new dynasty. If you have ever longed to don the baggy green, then sign up to bring home the "new Ashes" - via, the David Hookes Memorial Trophy - next year. More importantly enjoy the camaraderie and spread the miracle of transplantation and "Transplant Sport." Scheduled tour dates: July 2006. Contact Jeff Sewell: (02) 9418-7006 or jpsewell@optusnet.com.au

European Transplant Games - 25th to 27th May 2006


The European Transplant & Dialysis Sports Federation (ETDSF) and the Hellenic Renal Patients Athletic Association (RPAA) will hold the European Transplant Games in Athens 25th to 27th May 2006. Full board and accommodation is offered for free. If you are interested in attending the European Transplant Games please contact Jan Wall on 07 3343 8561 or email janrosewall@iinet.net.au

Favourite Needler


A Favourite Needler: Regarding Cannulation in Haemodialysis By Ramiro Valdez, PhD (this article has been edited, for the full article please contact Dialysis Escape Line Australia) A "Favorite Needler" - Anyone who has been on haemodialysis for even a few months can verify that some staff members are better than others at needling. Most patients know the results of a bad/blown needle; many have a favorite needler, someone who gets it right the first time. A "Knack" For Cannulating - Some staff members never develop the skill while others have a knack for cannulating. Dialysis clinics go to great lengths to teach nurses, but there seems to be some who do not learn the correct technique. There is no connection between number of years working in dialysis and good cannulating. Some older, more experienced staff members, including doctors, never learn the right way, while nurses with only a few weeks training may be better. "Specifically Requested Technicians" or nurses are not always available. They may be assigned to other stations, attending other patients, taking a break, or may be putting other patients on the dialysis machine. All staff in dialysis clinics have multiple duties and for these reasons may not always be available. Tip No. 1: "Give the Staff Member a Second Chance" - Everyone makes mistakes. It is hard when the mistake hurts someone else, staff members hate when this happens, but even the best needlers had to learn. If a patient has a bad experience don't close the door on the staff member, it is best to approach the erring staff member, tell of the bad cannulation and say you are willing to try again. No doubt you will gain an ally. You must understand that staff members hate bad needles as much as patients. Tip No. 2: "Broaden the Circle" - It is unwise and impractical to have only one staff member as a favorite cannulator, there are others and it is smart to know who they are. If a patient knows who the good needlers are, but your first choice is not available, there will be a second, third or even fourth choice. Tip No. 3: "Teach Staff Members While They Cannulate" - Even the best cannulators in the business had to learn their craft at one time or another. The best teachers they could possibly have are patients! Like all teachers, patients must be patient, kind and speak in a normal tone of voice. When a staff member makes a mistake, it is important that the patient not yell or fuss, but rather be firm and instructive, like a good teacher. Dialogue between patients and cannulators is an excellent way for each other to learn. Tip No. 4: "Topical Anesthetics" - Can painkillers help? Some people have found that painkillers, either injected or sprayed can help. Injected painkillers can make it easier to withstand the "brief, though noticeable, pain of needle sticks at the start of dialysis." Other patients have found that the injection hurts more than the cannulation or the spray painkiller is too expensive. It is best for patients to decide for themselves after they have tried both ways. Tip No. 5: "Fear of Injections" Psychiatric Diagnosis - There is a psychiatric diagnosis called specific phobia or "Blood-Injection-Injury type." This phobia can be characterized by an abnormal or unusual fear of injections (among other things), runs in families and with such a great fear people sometimes faint at the sight of a hypodermic needle. Patients who believe they may have this phobia should discuss it with their doctor and request a referral to a psychiatrist. Tip No. 6: "Self-Cannulating" - No one can needle patients as well as they can needle themselves. This thought is discomforting for some with a little practice they become very good at it and this is especially true of insulin-dependent patients who have been giving themselves injections for several years. Those people who wish to self-cannulate will need to be trained and observed every time by a staff member. Some people would say "Putting in your own needles is the best guarantee for a sure needle and less pain." Conclusion As long as dialysis treatments involve cannulating, there will be "good", "not so good" and "bad" needlers in every clinic. Patients should give staff members a second chance and become teachers of the bad needlers by advising them during the cannulation process. There is a variety of things that patients could do to help cope with the pain. Patients and staff working together and helping each other in what, despite all our medical and technological advances, continues to be a constantly evolving art in medical care.

From The Chairman's Desk - Bernie Morellini


Another full and rewarding year. Perhaps the most eventful being the wonderful success of the Australian Team to the World Transplant Games in London, Ontario, Canada in July. Congratulations Jan Wall and the team for a tremendous result. During the past year, many of our members have received support of many different forms, such as financial, emotional, grief counselling and social occasions. It is the vision of TA that more and more of this type of support will be offered to its members where needed, especially at the local level. Three brochures have been developed, (Transplant Recipients/Dialysis Patients/Those Awaiting Transplantation, Donor Family and Living Donor Brochures) for distribution to all areas within Australia where recipients and donors receive treatment, support or information. Currently we have six task forces in operation - Games (including National and International), Support, Database, Website, Living Donors and Families of Deceased Donors. A major membership drive was instigated in the latter part of the year with the aim of encouraging more recipients, people undergoing dialysis treatment, living donors and family members of deceased donors to join Transplant Australia. In order to service our membership of over 6,000 we have a number of people who work voluntary - tirelessly long hours - I sincerely thank them for their great contribution and for making Transplant Australia the wonderful organisation that it is. My warmest wishes for a Merry Christmas and healthy New Year. Bernie Morellini Chairman Transplant Australia Ltd

Getting on in the ACT at Black Mountain Peninsula


A tree-shaded and tranquil parkland on the shores of Lake Burley Griffin provided a perfect setting for the ACT sub-branch to kick off 2006. The sound of native birds was only interrupted by the generator for the man in the ice cream van, and on a day when the temperature soared to 37 degrees all was forgiven as the icy poles provided some much needed relief at the end of a long day. It was a great turnout with more than 30 local members (and members to be) of Transplant Australia enjoying a relaxing afternoon. There were some new faces including Russell McGowan and Tony and Mary Bailey along with our Sydney stalwarts, Murray and Jo Rose and their playful pooch, Tagina who made the journey down in their trusty (not rusty) and well travelled organ donation promotion mobile. The afternoon included a formal moment where nominations were taken for positions on the new ACT sub branch committee. It is with pleasure and an air of expectation that I announce the committee for the next 12 months will be: President: Nick Farley, Secretary: Damian Harding, Committee Members: Rob Benson and Steve Hall, Donor Family Delegate: Laurie and Marguerite Wiseman The next 12 months will be an important period for Transplant Australia to make its mark in the ACT and surrounding region and the ACT sub-branch are looking forward to the challenges ahead. Along with monthly social, recreational and sporting activities, The ACT is hoping to develop its own identity (uniform etc) in time for the National Games which are being held in September. Don't forget Organ Donor Awareness Week which starts on 17th February and get out there and help promote the week which is what Transplant Australia is all about. At the end of Organ Donor Awareness Week, we will be having a bowl at the Canberra International Bowl (76 Cowlishaw St, Tuggeranong) on Sunday 26th February from 4pm followed by dinner (venue/time to be confirmed). Nick Farley President (Transplant Australia- ACT Sub Branch) orgdonor@bigpond.net.au

Ian and Chris - Toyotal Echol Car Raffle Winners


The Miracle of Love - Ian and Chris Boyes of Bribie Island, Queensland tell their story. A loving husband's live organ donation. Chris originally came from Dongon Plains Dirranbandi and was a keen horse woman and Ian came from Pittsworth before joining the army. Chris and Ian spent the earlier part of their married life in hotel management in Queensland and the Northern Territory until Ian had a boating accident in 1989, which forced him into early retirement. Then came the blow that Chris had chronic kidney failure and was put on dialysis. At that time a cadaver kidney transplant was a long way off so Ian offered to be tested and after many tests, the transplant took place. Ian gave Chris a kidney. That was 12 years ago. Chris has lived a full life playing lawn bowls when possible and loves to fish. Unfortunately just a few short months ago, Chris became ill, went into chronic kidney failure and is now back on dialysis. Ian and Chris both stay positive and focused and Chris at 64 and Ian at 69 feel they have had a full and happy life. It has been said that renal reflux is not hereditary. However of their 17 grandchildren two were born with the condition. Luckily due to modern procedures these two children may never have to experience dialysis. Chris and Ian bought a raffle ticket in the Transplant Australia car raffle and were thrilled when told they were the proud winners of the Toyota Echo. Ian said it was a timely win as they were in desperate need of a new car. Congratulations Ian and Chris. Chris and Ian said that they would like to thank Transplant Australia for their support over the years. We are pleased to advise that Chris is doing well. Ian is also well despite a recent short stay in hospital.

Medical Information from Associate Professor Daryl Wall


Give your body the chance to control the dangers of skin cancers which are accelerated by immunosupression A malignancy is a deadly growth of cells, where the cells multiply rapidly, spread directly through tissues and multiply at remote sites (metastasis). Skin cancers (squamous cell (SCC), basal cell (BCC), malignant melanomas, Kaposi's sarcoma and Merkel cell cancers) make up the most common malignancies in Australian recipients. After ten years of immunosuppression, over 40% of recipients will have developed a squamous cell carcinoma of the skin. Immunosuppression is associated with:- 1. increased viral infection rates (some viruses cause skin cancer- HPV 36); 2. increased skin ageing (doubles rate); 3. a change in the pattern of skin malignancy (recipients suffer four SCC's for every BCC in contrast to the rest of the population; 4. Accelerated malignant growth. While melanomas are not more frequent in recipients, the prognosis is poorer even with minimal immunosuppression. BCC'S rarely metastasise even with immunosuppression (1 in 77,000 ref. Wall 1975). Recipients, nurses, family members and doctors must work together to prevent sun damage, look for growths regularly and treat all suspicious skin lesions quickly and expertly. Pleasingly, progress is made every year in the management of skin cancers. Topical therapy including Efudex (5 flurouricil), vitamin A analogue creams, cryosurgery and Mohs technique will control most solar keratosis (pre-malignant) and early SCC'S. Oral intake of aspirin has been recently demonstrated to be associated with a reduced incidence and progression of SCC'S. Also, some patients have benefited from supplemental vitamin A analogues. However, it is vital to recognise that in certain areas of the body (eyelids, lips, tongue and in the folds around the nose) only urgent expert surgery carried out by very experienced cancer surgeons will provide a certain cure. If cancers in these sites escape control, it maybe necessary to make extreme modifications in the recipient's immunosuppression to win the battle. Should you wish further information please contact A/Professor Daryl R. Wall, Medical Director, Transplant Australia Ltd. darylwall@comcen.com.au

Medicare Safety Net


Under Medicare every Australian is entitled to free treatment in a public hospital - and that will continue. Medicare has always paid 85% rebate on the schedule fee for treatments when you haven't been admitted to hospital - that will also continue. Medicare has not always covered the amounts that you pay over and above the Medicare rebate, your out-of-pocket costs. For people with complex conditions, for families, and those with other high health care needs, those costs add up. That is why the Government introduced the Medicare Safety Net. This is separate to the PBS Safety Net for high costs of medicines. The amounts between what you pay your doctor and what you get back from Medicare will count towards the new annual Safety Net threshold. These include GP and specialist consultations, tests, x-rays and scans. MedicarePlus Safety Net was introduced in March 2004 and gives Australians protection from major out of pocket costs for medical services provided outside hospital. The government will cover 80% of out of pocket costs for medical services provided outside hospital for concession card holders and families receiving Family Tax Benefits (FTB) "A". A threshold of $500.00 per year for a family receiving FTB must be reached, for all other families and individuals a threshold of $1,000.00 per year. Once the threshold is reached, the payment will be 20% of the rest of the out of pocket costs for medical services for the remainder of the calendar year. The remaining 80% will be covered by the Government. MedicarePlus Safety Net is there to protect all Australians from out of pocket, major costs of medical services provided outside hospital. These include services provided by general practitioners and specialists, blood tests, psychiatry, x-rays, CT scans, MRI, tissue biopsy, radiotherapy and pap smears. The HIC count the total out of pocket costs in any calendar year of MBS services provided outside hospital. You need to register (Medicare Office) if you are a couple, married or de facto with no dependant children; a couple, married or de facto, with dependant child/ren; a single person with dependant child/ren. However, single people without dependant child/ren do not need to register. Medication - From 1st January 2005, if you are a general patient, you pay up to $28.60 for most subsidised prescription medicines under the PBS (concessional patients pay only $4.60). Once you reach the Safety Net threshold of $874.90, you will pay the concessional rate of $4.60 for further PBS items for the remainder of the calendar year. These payments are revised annually in line with the CPI. If you are a concessional patient, your co-payment will be removed once you reach the threshold of $239.20 or 52 scripts within a calendar year, further PBS prescribed medicines are provided free for the remainder of the calendar year. Those receiving a pension or part pension, may be entitled to a (Centrelink) Pharmaceutical Allowance of $5.80 per fortnight ($150.80 a year) in addition to your pension, to help defray your out-of-pocket pharmaceutical expenses. This also applies to family units, individuals, couples or families with dependant children. Changes from general to concession patient or vice-versa - If you change from a general to a concession patient, you work towards the concessional threshold and your prescriptions are counted at $4.60 (1 script). A safety net card is issued. If you change from concession to general patient, you work towards the general threshold. The recording of contributions is your responsibility. A PBS expenditure Prescription Record Form (PRF) is available from all pharmacies. More information is available at your Medicare Office, by calling 1800 011 163, or visit www.health.gov.au to register on line or to down load a form.

Message from the Chief Executive Officer


Transplant Australia continues to play a significant and important role in organ donation and transplantation. Other than events that we run to raise awareness of the need for increased transplant rates, Transplant Australia also offers a range of support services for transplant recipients, people undergoing dialysis treatment, families of deceased donors and living donors and their families. Advising respective health departments on legislation, lobbying for greater access to dialysis for people undergoing dialysis treatment, conducting and arranging media interviews and answering queries from the public are just some examples of other things we are involved in on a daily basis. The response to the car raffle was tremendous. Thank you all so much for your support! And isn't it fantastic that the couple who won the car, the first prize, were desperately in need of it? Their current car was on its last legs! The members of our Victorian branch are busily preparing for the Australian Transplant Games which are to be held in Geelong, Victoria from 16-23 September 2006. Geelong Grammar School and the Mercure Hotel have been booked for accommodation for the Games. Additional information concerning the Games should be available on our website www.transplant.org.au shortly. We expect over 1,200 people to attend the Games. The Australian Transplant Games is a wonderful event and not just for the sports minded - a range of recreational (chess, bridge, backgammon, scrabble) and social activities are offered. The Geelong Games will be particularly "family focused" with many activities planned for children throughout the week. So please start making plans now to attend. All the best to everyone for Christmas and the New Year. Mark Cocks

Raffle Results


Congratulations! Thank you to everyone who purchased tickets in the 2005 National Raffle. 1st Prize Mr and Mrs Boyle of Queensland won the Toyota Echo. 2nd prize Mr and Mrs Horsley of NSW won the TV 3rd prize Chris Wilson of NSW won the DVD player

Tasmania Camp


A Transplant Australia camp is being held at Camp Banksia at Port Sorell, near Devonport in Tasmania in mid-February. Approximately 30-40 people from Tasmania, New South Wales, Victoria, Australian Capital Territory and South Australia will be attending. Attendees will be participating and receiving some coaching in a variety of social sporting activities in preparation for their participation at the National Transplant Games in Geelong in September. About one third of the participants attending are from the NSW/ACT branch.

Transplant Australia Camp Port Sorell Tasmania - February 2006


TA Victoria/Tasmania is holding a camp for adults and children at Camp Banksia, Port Sorell, from Friday 17th to Sunday 19th February 2006. Registration begins on Friday 17th from 1pm followed by a few activities and dinner. Accommodation is comfortable dormitory style in order to keep costs to a minimum. The weekend will include activities such as canoeing, cricket, tennis, golf and board games. The Registration Fees of $50 for Adults and $40 for Juniors (11 and under) covers the cost of meals and accommodation at Camp Banksia. If you are interested in attending please contact David Wightman by the 6th January Mobile: 0418 352 884 Home: (03) 6393 1327 Fax: (03) 6391 3156 Email: dwightman@agrm.com.au

Travel Insurance


We know how difficult it is for people undergoing dialysis treatment and transplant recipients to get pre-existing travel insurance for overseas travel. The following is a list of insurance companies that are worth trying - Gateway, QBE and Suresave are the best of them. Gateway Travel Insurance 1300 651 654 QBE Travel Insurance 1300 555 017 www.qbe.com.au Suresave Travel Insurance 1300 787 376 www.suresave.net.au Cover-More Insurance Services 1300 728 822 CGU Travel Insurance (03) 9601 8252 www.cgu.com.au Vero Insurance 13 18 13 www.vero.com.au RACV Travel Insurance 13 13 29 www.racv.com.au World Care Travel Insurance 1800 008 614 www.mondial-assistance.com.au Aussie Travel Cover 1800 888 448 www.aussietravelcover.com.au Travel Scene Travel Insurance 1800 252 689 Columbus Direct 1300 669 999 www.columbusdirect.com.au 1 Cover 1300 368 344 www.1cover.com.au.

World Transplant Games Canada, July 2005


In July 2005, 112 athletes, supporters and management, and members of Transplant Australia Ltd., travelled to London, Ontario, Canada to represent Australia in the 15th World Transplant Games. Team members achieved outstanding success winning a record number of medals (120, including 54 gold) and breaking 7 swimming and 3 track and field world records. Australia was placed third behind Great Britain and USA, amongst 52 countries. Many athletes performances were consistent with that of an elite athlete. Emma Hutchinson did exceptionally well, winning 7 gold medals (athletes can only participate in 5 individual events and two relays) and Kate Farne did extremely well in the track and field events winning 5 gold and 1 bronze medal. For the first time, the local organising committee in Canada included a World Transplant Games IDOL Competition. Seven Australians performed excellently in three highly entertaining acts. Australians were delighted during the Gala Dinner when our 10 year old singer, Jordyn Griffin, was announced as the winner of the Gold Idol Medal. Jordyn is AWESOME. The next World Transplant Games will be held in Bangkok, Thailand in 2007. Transplant Australia is hopeful of fielding a very large team to Thailand, as the trip will be much shorter and the airfare cheaper. Thailand has introduced two new sports, archery and petanque. Other sports are swimming, track and field, tennis, table tennis, badminton, squash, cycling, golf, rifle shooting and volleyball. Planning is underway for athletes to participate in archery and petanque at the Australian Games in 2006. My thanks go to my assistant, Jilly Russell, my husband, Daryl, the Australian Team Doctor and the enthusiastic supporters for preparing and supporting our outstanding team. Well done to all team members. I look forward to our next Games. Best wishes Jan Wall Team Manager Australia

Whats New:

Family of Ashley Cooper Announce Establishment of Ashley Cooper Foundation

Transplant Australia is supporting the establishment of a Foundation to raise money for the late V8 Supercar driver Ashley Cooper's partner Casey and their young children Ella and Bailey.

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Click here to donate to the Transplant Australia Trust - Ashley Cooper Foundation.

Rudd Government Receives Taskforce Report

Key members of the National Clinical Taskforce into Organ and Tissue Donation presented their final report to the new Labor Government on Thursday, February 14.

Annual Report 2007

Transplant Australia has released the 2007 Annual Report.

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