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LUNG news AUSTRALIAN AUGUST 2003 LungNet THE LIVING WELL WITH A LUNG CONDITION FOUNDATION World COPD Day 2003 Just a cough? … Could it be COPD? Just out of breath?… Could it be COPD? Could it be COPD? That’s the question that the Global Initiative for Chronic Obstructive Lung Disease (GOLD) suggests that people should be asking. Last year was the first World COPD Day and it began a year-long campaign to raise COPD awareness worldwide. This crucial first step laid the foundation for future efforts to increase accurate diagnosis of COPD and improve treatment. Picture supplied by The Prince Charles Hospital World COPD Day in 2002 marked the first time that a single, evidenced-based patient questionnaire was used worldwide, with people from Argentina to Yugoslavia asking themselves the same questions to determine if they are at risk for COPD. If you answer these questions, it will help you find out if you could have COPD. 1. Do you cough several times most days? Yes ___ No ___ 2. Do you bring up phlegm or mucus most days? Yes ___ No ___ 3. Do you get out of breath more easily than others your age? Yes ___ No ___ 4. Are you older than 40 years? Yes ___ No ___ 5. Are you a current smoker or an ex-smoker? Yes ___ No ___ If you answered "yes" to three or more of these questions, ask your doctor if you might have COPD and should you have a simple breathing test? Is there someone in your life who also needs to ask themselves these questions? If COPD is found early, there are steps you can take to prevent further lung damage and make you feel better! This year’s World COPD Day is on the 19th of November. W h a t ’s b e h i n d The LungNet is an initiative of THE AUSTRALIAN t h i s s i g n ? LUNG FOUNDATION Toll Free 1800 654 301 1 Have a Laugh THE LIGHTER SIDE WITH DAVID EMDUR Hi Gang Well, it just had to happen, I guess. I was bouncing around on my electric scooter at Bondi Junction when I ran into my first meeting with "footpath rage". Do you have Chronic Bronchitis or Emphysema as a result of smoking??? Researchers are currently trialing a new once daily tablet to treat your disease. If you are aged over 40, and are currently a regular smoker, or an ex-smoker who has successfully stopped smoking for at least one year, you may be eligible to participate in this study. Should you wish to receive more information about this trial, please contact: The Australian Lung Foundation on 1800 818 545 I was headed for the footpath "off ramp" at the pedestrian crossing when a lady with a pram containing two ferocious looking children, armed with what appeared to be plastic suction dart guns (pointed in my direction), crossed my path. I gave way as I would have felt a little out of place with my oxygen up my nose, "tranny" leads in my ears and a couple of plastic suction darts stuck to my forehead. I allowed a metre or so clearance behind the lady to make sure I did not clip her heels when the lights changed. Suddenly, out of nowhere, some old guy (probably a good year older than me) drove his buggy straight in between the Lady and myself. He was parked side on and only a few centimetres from me. No need for me to tell you that when you are driving and somebody nearly wipes you out and then to add insult to injury, totally ignores you, it's a little aggravating to say the least. I could feel the tension building, my muscles were starting to swell, my body turning green and my shirt starting to split. I was about to jump off my scooter, pick his up and bounce it around a little, when I noticed that as I turned green, he was tending towards a shade of red (blood pressure, I guess). I was ready to throw a punch. Suddenly I made a last minute decision to back off, he might just throw one back at me. Besides, he was armed with a dangerous looking walking stick mounted on his scooter. WHY ARE PEOPLE SO KIND? I was merrily zapping along the footpath of a busy road and approaching a pedestrian crossing (with no intention to cross) when a thoughtful motorist pulled up, followed by another from the opposite direction. Both motioned to me to cross the road. What else could I do to reward the courtesy paid to me and to avoid embarrassment as more cars started pulling up, I crossed, waited for all the vehicles to move along, then returned to opposite side. I realise I've been giving you a little ear bashing about this little vehicle of mine, however it's opened so many new adventures for me, many of which (if at all possible) would have been really hard going. I heard a comment on radio by a person in ill health (but a great survivor), he stated that you should have a little plan for each day when you wake. This sure helps you get you out of bed and on the move. Now when I wake and I see the sun shining, I'm in that buggy and away like a crimson flash. I can't talk for all States, but in Sydney, the accessibility to all forms of entertainment, shopping, the Harbour, even train travel, is fantastic. Well, I'm off to give the trains a shot. Foundation Sponsors Cheers David About the LungNet News Supporters Publication dates 2003: May, August and October. The LungNet National News is distributed free of charge to all members of patient support groups affliiated with the LungNet, and healthcare professionals. Publisher and Editor The Australian Lung Foundation PO Box 847 Lutwyche Q 4030 2 LungNet 1 Toll Free 1800 654 301 Toll Free Phone Fax Email 1800 654 301 07 3357 6388 07 3357 6988 [email protected] The LungNet™ is an initiative of THE AUSTRALIAN LUNG FOUNDATION When you can’t breathe nothing else matters™ The Faces of LungNet Part 1 National LungNet Coordinator Karen Moran New South Wales Lissa Spencer South Australia Paul Cafarrela Hello, perhaps we’ve met already. If you call 1800 654 301 it’s quite likely that the phone will be answered by me. As the National LungNet Coordinator it is also my pleasure to edit this newsletter. My background is in Health Promotion and I have held various positions in the field since 1995. In July I had the opportunity to host the State Lungnet Coordinators from around the country at the Sydney Airport. During this meeting I discovered a little bit about them and I thought you might like to know too. Lissa is a Physiotherapist at Royal Prince Alfred Hospital. Since 1990 Lissa has been working in Pulmonary Rehabilitation and since 2001 on the NSW Priority Health Care Project. The aim of this project is to ensure that Pulmonary Rehabilitation and ongoing support is available to all respiratory patients with particular emphasis on COPD. "I Love being involved with Lungnet which does such a good job of providing ongoing education and support for patients." Paul has been employed as a psychologist in the Respiratory Department of Adelaide's Repatriation General Hospital since 1997, where he provides psychotherapy for a very wide range of concerns, ranging from depression and panic to palliative issues. Paul is also the Manager of the Repat's widely respected Pulmonary Rehabilitation Program and is active in respiratory research and education concerning the psychological difficulties associated with respiratory illnesses and the efficacy of non-pharmacological interventions for patients and their carers. "I am a strong supporter of patient involvement in respiratory groups and have been involved with LungNet for the last six years." The State LungNet Coordinators are a driving force in the organisation of the Education Seminars in their states and as the number of groups grow throughout Australia we hope new State Coordinators will join the crew to spread the LungNet message. There are 90 groups around Australia meeting regularly. New South Wales has 30 support groups South Australia has 8 support groups More Coordinators next edition. Support groups have come under the LungNet umbrella since 1997 and more are joining all the time. If you don’t have a support group in your area but would like to start one, call 1800 654 301 and talk to us about the Support Groups Start up Kit. This kit gives you practical tips, advice and lots of information and resources to help grow that group. LungNet Toll Free 1800 654 301 3 World COPD Day 2002 - continued Some groups really got into the spirit of the day! Reg Hunt and Lindsay Eastlake from Rosebud Better Breathers at the information table in the local shopping centre on World COPD Day. LARFers from the Gold Coast working up a sweat on World COPD Day. Julia Gill (creator of the wall hanging), Julie Kirk and Cecilia Arrigoni at the John Flynn Hospital on World COPD Day. Oxygen Oxygen - The Simple Facts If you use oxygen therapy for long periods of time you may find that it can lead to nasal dryness and skin irritability. There are a number of products available to assist in alleviating any discomfort. The Biflow Nasal Cup is an option for cracked or dry nostrils. A soft small cup that encircles the nose feeds the oxygen, eliminating the need for intrusive nasal prongs. The nasal cup is available in sizes suitable for adults and children. The Oximizer and Oximizer Pendant can also help reduce drying of your nostrils. They create ‘pooling’ of oxygen in a reservoir from which you inhale reducing unnecessary flow into your nostrils. These options should be discussed with your doctor as they improve efficiency of oxygen uptake and may allow for a reduced flow rate. To combat chaffed and tender ears from oxygen tubing ‘rub’ one solution could be Eziwraps. This product consists of foam strips designed to slip onto your cannula tubing at the top of the ears, protecting and cushioning the ears, reducing discomfort. For further information on the above products, please ask your doctor or contact Air Liquide Healthcare on 1300 360 202. LungNet 4 1 Toll Free 1800 654 301 Sail On with The Australian Lung Foundation This year to celebrate World COPD Day on the 19th of November, the Australian Lung Foundation is partnering with gliding clubs around Australia to increase opportunities for people to experience the sensation of Sailing On. Last year the Sail On concept was launched with a water theme, giving many people around the country the opportunity to Sail On – water, for the first time. This year gliding was chosen as the Sail On experience to try and already Beaufort Gliding Club in Victoria and Camden Gliding Club in NSW have come on board and are looking forward to providing you with a truly memorable experience as you Sail On – air . The next LungNet News will have more details of gliding clubs to contact for your Sail On experience. Why use SAIL ON as a slogan? The Sail On slogan brings to mind a picture of a mature, strong and active lifestyle. It gives a positive and optimistic view of the future with a balanced, down to earth attitude. Those living with the condition know just what a difference a change in attitude can make to how they feel. After all the important thing is the living not the condition, and people can make that living much more full with a Sail On attitude. CD ROM Lung Health Promotion Unit Photo - CD Rom device This CD – an Australian first - is a much-needed resource for anyone who wants to learn or to teach others to use their inhaled respiratory devices correctly. "We hope that this new education tool will result in less problems for those with respiratory conditions and fewer presentations to hospital", said Adrienne James, the Coordinator of the lung Health Promotion Centre. "It also assists GP’s and health professionals with their ongoing professional development," Adrienne added. The interactive CD can be used on any PC with a CD drive and sound card. Using verbal instructions, checklists and non-verbal demonstrations, it explains and demonstrates the use of the six inhalers currently available. The CD can be used to teach patients to competently use their devices and as it has non-verbal demonstrations, it is also effective for people from a non-English speaking background. The device has received approval from the National Asthma Council and Dr Michael Kidd, President of the Royal Australian College of General Practitioners, has added his approval for the new educational tool. The CD, which costs $69.30, is available from the Lung Health Promotion Centre at The Alfred Hospital, Commercial Rd. Melbourne 3004 For more information, phone 03 9276 2382, email [email protected] or log onto www.lunghealth.org. LungNet Toll Free 1800 654 301 5 LungNet Lifestyles G-Day, My name is Kevin M Whitehouse and I was born during the depression. I grew up during WW2 and had Army experience during late 40’s and 50’s and later played top grade tennis with the golden age of tennis players. I shall not drop any names but I was able to enjoy games with most of the players of that era. One of the most rewarding experiences was to be on the players’ gate for the 1958 Davis Cup, it was great to see and meet all the players from that tie. This helped later on in life as it was here that I learnt the phrase, "NEVER GIVE UP". My working life was with the family pipe organ building business of Whitehouse Brothers. Our old factory at 61 Musgrave Road Red Hill, Brisbane is still in use as an art gallery. Being a pipe organ builder, I was always dealing with the production of wind, and ironically I am still doing that today, now that I have COPD! In 1993 I was given 3 months to get my affairs in order, as I had developed a heart condition as well and had just been through a severe bout of Ross River Fever. But as usual I disobeyed orders and used the approach of Faith, Hope and NEVER GIVE UP. On September 19th, my wife Val & I celebrate our 50th anniversary. It would take too long to say what a great support she has been, but support has been one of the key elements of living well with COPD. So here I am today involved with BREATHE EZY, a Sunshine Coast support group, and what a great mob they are! BREATHE EZY is a thriving support group and our membership is on the increase. The more people we can reach out to and help, the happier I become, I believe a support group is at the very core of helping people cope better with COPD. Personally over the last 4 years, the knowledge I have gained, from the group and the presenters we have seen, has been invaluable. I really feel that support groups are vital, and with the help received from LungNet we can only get stronger and be able to help more people. Lets us always look at the wider view though, this way we can reach out and help more people with COPD and make them aware of what support groups have to offer. I love to plant seeds in peoples’ minds, and watch the tree grow. Stir the pot, rattle the cages, knock on the doors, and things will happen. Some of the members say I coerce them into doing things for the group, but I like to think that they have been motivated. The results have been great! The Support groups will multiply and that in my humble opinion is what it is all about. God Bless & Breathe Ezy Kevin Whitehouse World COPD Day 2002 Some groups really got into the spirit of the day! Past and present participants of the Bairnsdale Pulmonary Rehab Program on World COPD Day. Thanks to Kerrie Yeates of East Gippsland Newspapers for the photo. 6 LungNet 1 Toll Free 1800 654 301 Brenton Eckert, Judy Ross and Alex Green at the PA Hospital World COPD Day actitives. Aids, Devices and Gadgets... Spacers What is a spacer? A spacer is a special device, which is tube shaped or football shaped. Puffer medications are sprayed into this device and then inhaled through a facemask or mouthpiece. Spacers come in many shapes and sizes. Your choice will depend on medication type, your age and ability. Why use a spacer? Most people have trouble coordinating the" press and breathe" technique required to use a puffer alone ,so a spacer can be a very helpful device. You don’t have to rely on one big breath to get the puff of medication in. You can relax and breathe normally in and out and be confident that your lungs are receiving what they need when they need it. Using a spacer can cut down the side effects such as mouth and throat discomfort caused by cortico-steroids. Also research has shown that by using a spacer you receive more medication than by using a puffer alone. Care of your spacer Once a month, or more often if needed, wash your spacer in warm soapy water as if you are doing the dishes. Take the spacer out of the water and drain to dry. Do not rinse or wipe dry. The thin layer of detergent left on the spacer will help the medication go into your lungs rather then be attracted to the plastic. It will not harm your lungs. Both the Asthma Management Handbook and the Australian and New Zealand Guidelines for the Management of COPD, suggest the use of a spacer, rather then a nebuliser for most people. Nebulisers What is a nebuliser? The 'nebuliser' is actually the small plastic container (nebulsing bowl) which is filled with a medicine solution. A clinical pump (usually electric) is then used to blow air or oxygen through this solution to make a fine mist of medicine. This mist is breathed into the lungs through a mouthpiece or mask. Why use a nebuliser A nebuliser is used to deliver large doses of medication. In hospital it may be used with oxygen to help someone who is very unwell. Care of your nebuliser To ensure they deliver the 6-8 litres of air per minute, which is necessary for effective delivery of the medication, pumps should be: • serviced every 6-12 months, depending on frequency of use. • The mouthpieces should be rinsed after every use and washed in warm water, dried naturally and stored in an airtight container. • All nebuliser bowls are disposable and need to be replaced regularly. Bowls should also be rinsed after each use, washed in warm water daily and allowed to dry naturally and stored in an airtight container. • Once a week the mask, mouthpiece and bowl should be soaked in a disinfectant such as Nebuclean. • If your nebuliser has a filter it too will need to be cleaned or replaced on a regular basis. Talk with your doctor, pharmacist, respiratory nurse or call The Lung Foundation for more information. Mask Mouthpiece Nebuliser Bowl Clinical Pump LungNet Toll Free 1800 654 301 7 Did you know ??? Economic Case Statement! Following on from the release of the milestone, COPD Case Statement in 2001, The Australian Lung Foundation launched the COPD Economic Case Statement on World COPD Day in November 2002. It has been sent to all federal Members of Parliament for their review. Some of the facts that we hoped would grab their attention are: As a lung transplant recipient Cathy is finding a new lease on life. As the proud "mother" of a litter of Maltese terriers she is planning her return to the show ring in a few months. When asked why a support group is still a feature of her life cathy Said, "I have been given so much by the support group, and I am glad I can now give some back. Education Leaflets The Australian Lung Foundation publishes leaflets on a wide range of lung conditions, for further information call 1800 654 301 or visit http://www.lungnet.com.au Mission • Estimates of the incidence of COPD in the community may be well in excess of the 1996 estimate of 300,000. Two recent studies indicate that the number of people in Australia with COPD is in the range of 620,000 to 2.6 million cases. • The masking of COPD by another illness such as heart disease has lead to incorrect diagnosis and a major underestimate of its burden on society • Much of the burden falls on carers who are not recognised by the government and whose value is not factored into current "dollar" cost estimates. • On an average day 1,740 people visit the GP and 1000 people are in hospital with COPD related concerns. • As the population ages, the burden of COPD is likely to continue to increase for some years, even while the prevalence of cigarette smoking continues to decrease Back in September 2001 you may have read about Cathy Davies and her Maltese Terriers and how lung disease had crept in and changed her life. Well Cathy has been through another change, though it is a very positive one! Statement The principal objectives of The Australian Lung Foundation are to assist the relief of people suffering from lung disease and to promote lung health in Australia by: 1. Raising funds in support of medical research into lung diseases. 2. Distributing research findings and knowledge. 3. Educating patients and the broader public on the treatment and prevention of lung disease. 4. Fostering patient support activities. 5. Influencing public and corporate policy to ensure as safe living and working environment. Disclaimer: The information contained in this newsletter is submitted from many different sources. The views expressed in this publication are not necessarily those of the editor or The Australian Lung Foundation. Medical information contained in this publication is intended to be used as a guide only, and not as an authoritative statement. Please consult your general practitioner or respiratory physician if you have further questions relating to medical information contained in this newsletter. All rights reserved. No part of this publication may be reproduced, stored in retrieval system or transmitted in any form by means electronic, mechanical, photocopying or otherwise without written permission from the publisher. Copyright © 2003 The Australian Lung Foudation Inc. 8 Toll Free Free 1800 1800 654 654 301 301 The LungNet is an initiative of 1 Toll THE AUSTRALIAN LUNG FOUNDATION