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Cystic Fibrosis Auckland

Community Newsletter • AUGUST • 2012

In this issue

Finding Balance ecial Harvey sharing a spCraig d da th wi nt me mo

Conference 2012 special feature CF and Work MAKING IT WORK FOR YOU Travelling with CF Jessica Scott bonding with Pluto in Disneyland

Father’s Day photos Recipe competition runner up

Toni Durant ha work for Cure Kird at ds

Auckland Cystic Fibrosis Association, PO Box 13385, Onehunga, Auckland 1643, New Zealand. cfauckand@pfrc.org.nz Editor: Wendy Edmondson

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2012 National Conference in Auckland This year’s excellent conference was held from 11-13 May at the Rendezvous Hotel in Auckland Word on our table at lunch on the final day of the Conference was that it had been particularly positive and inspiring with a strong mix of topics. The food was delicious and the morning and afternoon teas had good CF diet choices. We were fortunate to have Dr Alexandra Quittner, Professor of Psychology & Paediatrics, Director, Child Division, University of Miami, to run two presentations: one on the iCARE (I change adherence and raise expectations) programme and whether it could work in New Zealand and one on finding balance

and improving quality of life, which had a strong reliance on large scale evidence based research surveys. Popular author and TV presenter Nigel Latta gave an insightful and entertaining presentation of his ‘Politically Incorrect Guide to Parenting’. Medical presentations were given on alternative therapies, CF and your Liver and CF Bone Disease. There were sharing sessions where CF adults and parents could get and give practical advice from each other and health professionals on issues they were facing in their CF journeys. Lisa Borkus and Toni Durant

shared their experiences of life with CF with stories that were sometimes very funny but also emotional and inspiring. Again, there were a number of adults with CF as well as new families with recent diagnoses. The support given to new families by others was very encouraging, especially as the amount of information at the conference could be a little overwhelming. There are notes available on many of the conference sessions. Please email Wendy at Auckland Branch office for details.

Understanding Your Liver Presentation by Dr Rachel Harry, Liver Specialist, Auckland Hospital Notes taken by Anthea Wendleborn

Liver - Where is it?

Cirrhosis

Located under lower part of ribs on the right hand side of your body.

The end stage of any chronic liver disease left untreated Small % of CF Population <3% - >25 years age (Most PWCF have no symptoms, just abnormal bloods. Some have large liver or large spleen) Complications of Cirrhosis • Portal hypertension : - This is a nobbly looking liver - Blood cannot get through as designed and then forms varices - Liver gets swollen and tense - Affects the function/physiology of the stomach and spleen • Liver Failure: - Jaundice, swollen abdomen with fluid (ascities) confusion (encephalopathy) • Liver Cancer Liver Tests Performed • LFTs Blood count (low platelets) clotting • USS/CT • Endoscopy/gastroscopy to look for and treat varices • Scans : Ultrasound / CT / MRI

Liver - What does it do? • gets rid of toxins. e.g. bilirubin, drugs • makes proteins. e.g. albumin • makes blood clotting factors • regulates blood sugar • metabolism of fats

Liver - Composition • a healthy liver is smooth and shiny • liver cells are the ‘powerhouse’ of the liver • drainage tubes in liver allow bile to travel through • the pathology of Cystic Fibrosis lies in the bile ducts

Liver - Measuring its Health Measured in the blood • bilirubin • albumin • INR (blood clotting) • glucose • Liver Function Tests measure - AST/ALT (liver cell damage) • ALP/GGT (bile duct damage)

What does CF do to Liver? Predominantly the problem is in the bile duct Abnormal salt and water transport in bile duct > Sticky bile > Intrahepatic bile duct plugs > holangitis > Fibrosis (scarring within liver lattice work) > Cirrhosis

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Looking After your Liver • avoid alcohol & drugs eg 14 units a week wine (7 wines) 21 units of beer (7 beers) 100mls of wine = 1 standard unit • tell doctors and pharmacists if you have liver disease • be a healthy weight • eat a mixed diet with plenty of protein • keep well

What Can Doctors do? Most people need no treatment. Regular follow-ups to monitor health/ changes Treatments: • Nutrition - supplements/lower salt • Pills - reduce bleeding, treat fluid and confusion • Banding of varices • Liver transplants

Liver Transplants in New Zealand • first liver transplant for PWCF was in 1987 • 80% are liver transplants • 20% also lung/heart transplants • 80-90% survival rate • Liver transplants have a positive effect on lung function Post-transplant Care • Immunosuppression - steroids, tacrolimus • Antimocrobial Prophylaxis • Antiviral Prophylaxis - HBV, CMV • Nutrition • Rehabilitation • Education

Conclusion The liver is affected by Cystic Fibrosis Not common for liver damage to be a major problem Most people do not have symptoms so blood tests are important Treatments are available You can help by looking after your liver (see above)

Osteoporosis – What can I do about it? Dr Mark O’Carroll – Adult Chest Specialist & Director of CF at Auckland City Hospital Notes taken by Wendy Edmondson Mark first clarified that really he is talking about CF Bone Disease and not Osteoporosis.

Definition and Background Increased life span of PWCF has led to more problems with CF Bone Disease in the over 40s. Up to one half of all PWCF will have a form of bone disease although this is more common in women. In bone making there are: Osteoblasts – which lay bone down / Osteoclasts – which take bone up Bone is a dynamic structure – it is constantly changing Bone mineral density can be measured and is a reliable indication of likelihood of osteoporosis. It is less reliable at indicating CF Bone Disease. In women, peak bone mass is reached at about 36 years after which bone mass decreases Ways to measure bone density: • DEXA (single and dual x-ray absorptometry • CT Scan (this gives radiation) • MRI Scan (not used) T - Score – Amount a BMD lies away from the mean BMD of young adults Z - Score – BMD compared with the mean of an age matched population

Differences between Osteoporosis and CF Bone disease: Osteoporosis – post menopausal, there are normal bone deposits in earlier life and an accelerated loss of bone deposits later in life CF Bone Disease – Abnormalities in Osteoblasts and Osteoclasts, excessive inflammation - Can be seen in children with CF

Pathophysiology: CFTR - a protein, folded up, with a hole in the middle of it which allows chloride to pass through. • has an important impact on other cell functions • also impacts on sodium channels which leads to the dehydrated mucus layer A 2010 study of CFTR in bone showed: • CFTR is present in bone cells In CF patients: • CFTR dysfunction • Malabsorption of Vitamin D • Delayed puberty • Malnutrition (the loss of what is needed to make bones) • Steroid use (can make bones less dense) • Low Body Mass Index • Diabetes – the impact is not well known but does affect bone strength

Research: – In 1979 it was established that in women low bone density can lead to fractures. A more recent meta-analysis (look at lots of research studies) showed that low bone density: • Can lead to an elevated risk of vertebral fracture > Hunching of the back > affect on lung function and therefore on mucociliary clearance. CF Bone disease is a contraindication for lung transplant

What can you do? • Look for CF Bone Disease – DEXA Scan – think about in annual review – do every 5 years • DEXA Scan – should be routine if over 8 years when there are risk factors Risk Factors are: - Delayed puberty - Fracture - Moderately severe lung disease How to prevent demineralisation: • Nutrition – optimise body weight • Weight bearing exercise > bone strength (if no exercise, bone strength will be lost) • Minimise steroid exposure • If delayed puberty – increase testosterone • Ensure normal calcium intake – this is better done through diet • Ensure some exposure to Vitamin D • Biophosphates - Helps with osteocytes > stops bone being reabsorbed into the body > increase in bone strength BUT – do not use if young and wanting to get pregnant as can harm an unborn baby • Growth Hormone - can increase bone strength

Introducing Wendy Edmondson New Auckland Branch Coordinator, Wendy Edmondson, talks about the new role and a bit about her past life. Hello everyone. I started work at CF Auckland on 27th March and was very lucky to have two weeks with Maria Teape learning the many and varied facets of the role. Maria, fortunately, is very organised and left a great procedures document, which I still use regularly to ensure the well designed systems are completed properly. It turns out that the job has many sides to it. New colleagues and the CF community have been welcoming and supportive which has made the transition to this role fairly smooth. I have met lots of inspiring people at the CF Conference and have a far greater knowledge of the medical implications of CF than I had before. The energy and positivity were heart warming, as was the support given to new conference attendees by the ‘old hands’. I have come into this role by a roundabout route, having previously worked as a police constable, a group worker with

young offenders, a proof-reader/editor and a school receptionist (among other roles). I believe strongly in continuing education Wendy with Husband, Rob and children, Isabel and Albert half way along the Abel Tasman Track earlier this year and have a Post Graduate Diploma in English and a City and Guilds qualification in Media Studies. I grew up in the South of England but in the course of travels gained a love of the New Zealand relaxed way of life. In 2008 our family moved to Auckland and have never looked back. I love being part of a close community, have previously fundraised for the local kindy and currently co-ordinate a walking school bus route at my children’s school. It has been a pleasure to meet so many of you in the CF community and I look forward to meeting more of you soon. 3


Balancing Work, CF and Life

Hints and tips when thinking about career paths to take if you have CF and real life experiences to encourage and inspire you

Finding Balance

Toni DURANT speaks frankly about choosing a career and disclosing that she has CF to her employer, Cure Kids

Results from the ADULT (Adult Data for Understanding Lifestyle and Transitions) Survey (US) – Alexandra Quittner PHD Notes taken by Wendy Edmondson Alexandra Quittner is Professor of Psychology and Paediatrics at the University of Miami. She recently received a Lifetime Achievement Award, the Dr. Richard C. Talamo Clinical Research Award, from the Cystic Fibrosis Foundation and was named a Cooper Fellow at the University of Miami (2009-2012). When Alexandra spoke at

the CF National Conference in Auckland this year she gave some results from the largest ever survey of adults with CF. The ‘ADULT’ survey was an anonymous internet survey of adult PWCF in the US looking at quality of life. It was the largest CF survey ever conducted and a total of 836 adults completed the survey. The sample was compared with Port CF data to ensure that it is representative of the Adult CF population as a whole. Alexandra stated that the median life expectancy for PWCF has increased dramatically in the past 20 years. This means that PWCF are more likely to pursue adult roles such as attending further education, working, marriage and raising children. People who completed the survey: Average age: 29.7 years Age range: 18-70 years 46% male Average age of diagnosis: 5.8 years 76% ≤ 5 years when diagnosed 95% Caucasian, 2% Hispanic, 2% African American, 1% other

Jamie ARCHIBALD shares his experiences of balancing work with living with CF As people with CF are living longer, healthier and more independent lives many adults are taking the opportunity to work part-time or full-time. I am lucky enough to work full time and was asked to share some of my experiences. I have been working for Community Leisure Management (CLM) for almost nine years now and have had different roles throughout this time. The company operates a number of recreational facilities (Gyms and Swimming pools) on behalf of the various Councils throughout New Zealand. I began as a fitness coordinator and have worked my way through to my current position as Facility Manager of an Aquatic Centre. For me the recreation industry was the way to go as it allowed me to keep active and be involved with helping people in the community. I tend to find myself at the desk a lot more these days, but still have the freedom to get out and be hands on when I need to. It is always hard to find the right time to disclose to your employer that you have CF, if at all. I have found that honesty is the best way to go and to do it sooner rather than later. By

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The results: 62% - adults are living independently 57% - working full or part time 75% - have attended or are currently attending Further Education 60% - are in a serious relationship or married The message that we can take from this information is: The results suggest better outcomes are achieved through independence and normal adult roles Disclosure: People who completed the survey were asked about their experiences of disclosing that they have CF to partners or employers. The majority found the experience challenging but the results of their disclosure were mainly ‘neutral’ or ‘positive’. Alexandra stated that it is important for PWCF to disclose as it helps them be supported to stay healthy. Alexandra’s message to PWCF: Do not live to complete your treatments – complete your treatments to live.

letting my company know that I have CF, I am able to ask for time off with clinic appointments and not have to have the stress of hiding why. Most employers will understand and if they don’t, do you really want to be working for them. Working full time with CF can be a challenge, especially Jamie at work for Community Leisure Management at different times when energy levels are not high. I find that where possible, I am better to have an hour break for lunch and work slightly later. This will depend on who you work for but I find I am a lot more productive doing it this way. These days many people have different health concerns, so as long as you can prove to your employer you are able to carry out the job required and are reliable they will understand. When I was in the fitness center, having CF made me understand how hard exercise can be for some people and I was able to use this to my advantage. My company CLM sees that Health and fitness and CF go hand in hand so have been keen supporters of the CF organisation. This would never have happened if I hadn’t let them know. Being able to work has given me independence and definitely helps pay the bills, so I wish you all luck in finding something that works for you and be proud to have CF.

Now at 31, and having worked full-time for over 11 years, I still enjoy the challenges of work and living with Cystic Fibrosis. I have always worked in Event Management and I am currently employed by Cure Kids as their Communications and Events Manager. Cure Kids is a charity which funds research into life-threatening childhood illnesses in New Zealand, such as Leukaemia, Long QT Syndrome, Cystic Fibrosis and cot death. It is an appropriate role for me and when applying for this position, Cystic Fibrosis was a real benefit. I have empathy for the kids we deal with and can talk to the parents on their level as well. The highlights are of course getting to meet and spend time with these gorgeous kids who suffer horrible conditions. I am also Red Nose Day campaign manager, so that appeal is going to be extremely exciting this year.

I always disclose having CF to potential employers. It’s not exactly an easy disease to hide, and I believe it’s only fair to a prospective employer to make them aware of the limitations that it sometimes imposes on one’s work. Also, as hospital stays are sometimes necessary it’s prudent to let them know about these up front. I have been extremely fortunate and only needed a hospital admission approximately once a year and all of my employers have been very supportive of those, as well as three monthly checkups. Even though I enjoy working and wouldn’t have it any other way, it does require a strict routine and knowing when to push the boundaries and when not to. For me, working is a big part of my life and it gives me a lot of satisfaction. I would recommend working, even if only part time. There are many employers out there that are extremely understanding and accommodating to CF needs. So give it a go!

CF and Work - Adapted from, ‘A Guide for Adults with Cystic Fibrosis’ Most people with CF would like to work if their health allows and should put some thought in early as to what kind of career they would like for the future. Working in a paid job when you have CF carries with it special challenges and it is helpful to consider and make plans for these early on. Do I want to do further training or tertiary study to gain a qualification? If ‘Yes’, then careful consideration of the type of career you want is wise. Be aware of the following: • Exposure to pathogens and bugs - jobs in agriculture, working with animals or in laboratory situations might carry extra risks. • Exertion – does this job require me to work physically hard? How will I handle this when I am less well? • Exposure to chemicals/fumes. • Will this qualification lead me to a job where I am likely to have a supportive employer during times of illness? – could I work from home? – What would I need to do this? Choosing a career that is sustainable for you over the long term is a wise choice when considering your course of study. And so to work… As with choosing a course of study, CF will also impact upon your choices for employment. It is far easier to tackle these

extra considerations earlier on, rather than pretending they are not important and encountering bigger problems later. Disclosure: It is your choice whether to disclose your CF status to your employer. However, unless you are one of those rare PWCF who has never been in hospital and rarely gets sick, it would be wise to be ‘up front’ with employers about your health needs and the possible impacts upon your work. Many employers nowadays are very supportive of employees with special needs and will be quite accommodating as long as they are kept informed. Things you may need to discuss with an employer: • The need for scheduled time off for hospital admissions. Planned admissions for regular ‘tune ups’ are a way that many working PWCF manage their health needs. Planning admissions (at intervals you and your clinic team negotiate) will allow you to give notice to your employer so they can arrange

cover. In some cases you may be able to continue working via a laptop, or even go to work during the day and hospital at night. • The need for particular hygiene protocols. Sterigel (that you provide) in the toilets and clear instructions to workmates to stay away from work if they have bugs/flu etc. You can help your employer to be supportive by being a great manager of your own health. This will help maintain a good working relationship with your employer as they will see that you are willing to do the best for yourself as well as expecting them to make allowances for your health needs. In some cases, PWCF can link into the Government Agency, Workbridge, to access assistance in finding a Supported Employment position. Workbridge has a range of supports from job brokerage to productivity allowances for employers. You can find out more from www.workbridge.co.nz or from your fieldworker. 5


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Dominic is pict ured here with dad, Kane teaching him to ride a bike

CF Gallery News 2012

AUGUST 7


‘Make–a-Wish’ gives Sam and friends an “AMAZING” Day Out Branch News Some of the recent activities and events in Auckland – and those coming up – by Wendy Edmondson Website: The Auckland Branch Website is well and truly up and running now. Check it out for current branch news, fantastic high calorie recipes, hints and tips on issues related to CF and much more. The website address is: www. cfauckland.org.nz

Sam emailed Wendy Edmondson to answer questions about his amazing day out with friends to see the Foo Fighters in concert at Western Springs on 13th December last year. Wendy asked Sam to tell her about his wish. He said, “I wished to go to The Foo Fighters concert at Western Springs for my 14th birthday in December and take 6 mates and my older brother Matt with me. On the day of the concert, we got taken out to dinner at a Japanese restaurant in Takapuna (my favourite food) and also had a birthday cake. Make a Wish also gave me $100 worth of iTunes vouchers which I’ve used to download heaps of my favourite music.” Sam’s wish was brought to fruition by Gaye and Rod from Make-a-Wish who he describes as “really cool”. Sam says the highlights of his day were: “Japanese in Takapuna. We had an amazing view of the band and it was really cool to have all my friends there. We got to come home in a Hummerzine which drove us around Auckland for an hour after the concert. It had crazy lights inside and music playing. Sam’s friends thought their day out was “AMAZING”. Sam’s view of Make-a-Wish: “They are fantastic!!!!!!!!”

Office move: Auckland Branch and National have annexed another office and storage space at the Parent and Family Resource centre in readiness for having a second North Island Fieldworker in the future. Jane Drumm came with her family to help move furniture and build another set of shelves which will make the office space tidier and more efficient. Awareness Week 13 – 19 August 2012: By the time you receive this newsletter Awareness Week will be in full swing or just finished. We have many schools helping by running events and collecting at shopping centres. Sacred Heart College has already held a collection for Awareness Week and The Howick Lions held a Trivial Pursuits evening on 29th June. Look out for the Trade Me auction.

Coffee mornings: Coffee mornings are a great way to meet other branch members. They have been scheduled for the year – check out our diary dates at the back of this newsletter or on the website calendar. The next coffee morning is being held at 10am on Thursday 25th September – details to be advised closer to the time. Movie Night: Please come along

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to our Movie Night showing of ‘Hope Springs’ on Sunday 26th August at the Bridgewater Cinema in Takapuna. If you want tickets please contact me at the CF Auckland Office. Tickets include a glass of wine and there will be spot prizes to give away (See poster on page 3 of this Newsletter).

Sam (centre) receiving his Foo Fighter’s tickets from Gaye and Rod of Make a Wish Foundation

Sam (centre) enjoying the outdoor concert at Western Springs

invite you to CF Auckland e Springs ening of Hop re sc l ia ec sp a

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Coordinator ckland Branch ndson, CF Au Wendy edmo cfauckland@pfrc.org.nz or a@xtra.co.nz 7 on ph 636 082 4 or richnamand il.com air, ph 575 274 ma Akey, CF Co-Ch ph 638 8714 or jathorrat@hot AmAndA Bl e, T, Committe Jill ThorrA

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Movie night

Happy Travels

CF and travel: How to organize yourself for travelling abroad

Not so long ago, people with CF would rarely consider travelling overseas because the health risks were so great. Times have moved on, however, and nowadays most people with CF will plan and take an overseas holiday or will actually live for some time in another country on their ‘O. E’. Before you book a holiday, consult with your health team. There are things they can do for you which will make travel easier and safer. they will also advise you of those parts of the world it is best to avoid. Some parts of Asia and Australia have very nasty bugs which are potentially life threatening for PWCF.

Before travelling: 1. It is your responsibility to ensure you have a valid passport and, where necessary, a visa. Allow enough time to make visa applications and check before departure for changes to visa/ passport/health requirements. 2. Do not travel alone unless you are sure you will not need assistance. Hotel staff, travel reps, couriers and others may be helpful but it is not their responsibility to assist travelers with special needs. 3. Learn as much as possible about the area you plan to visit. For example temperature, humidity and altitude can all affect your health requirements. High altitude can mean a greater need for oxygen. 4. Consult your doctor well in advance for advice and to arrange any necessary immunisations. This is particularly important if you are travelling with children and they have not yet had their full course of childhood immunisations.

5. Establish whether you will need a medical certificate. Some airlines and insurance companies require a medical certificate completed by your doctor before they will allow you to travel. 6. If you need to take prescribed medicines whilst abroad, check on their availability in the country you are visiting. Normally your doctor can only prescribe enough medicine for up to three months under the New Zealand health system. Be aware that medicines may go by a different name in other countries. 7. When transporting medicines,you will need to know if there are restrictions on taking them in and out of New Zealand. A letter from your GP or specialist stating the quantity required and why and who the medicine is for is usually enough for customs. If in doubt phone customs on: 0800 428 786 to confirm any requirements. 8. Reciprocal agreements with foreign countries DO NOT COVER PREEXISTING CONDITIONS. Routine

checks for for existing conditions will not usually be provided for under the agreement. 9. RECIPROCAL AGREEMENT: If the treatment relates to an existing medical condition a medial specialist must agree that the intervention is necessary to stop the condition getting seriously worse. However, if a new condition arises (for example your appendix needs to be removed) then the medical specialist must agree that you need the treatment promptly. In both cases the need for treatment must have arisen during your visit. 10. Insurance is essential if visiting any other countries. DO NOT TRAVEL WITHOUT SOME FORM OF TRAVEL INSURANCE. Many insurance companies will not cover Cystic Fibrosis. It is recommended, however, that you consider the need for supplementary medical insurance regardless of any reciprocal arrangements.

If you wish to find out more about travelling with CF please contact Wendy Edmondson at the CF Auckland Branch Office and she can send you the excellent Travel Guide for Cystic Fibrosis patients and she can give advice on insurance companies. The Branch can also lend out mobile nebulisers which are lightweight and come with a car adaptor. Please see the information below for details of these.

Would the use of a portable nebuliser assist your holiday plans? The Auckland Branch has mobile compressors to lend for short periods. They run much like a mobile phone and have a battery that needs power to charge. Once fully charged, which takes overnight, the compressor will give many hours of nebulising. They also have a car adaptor. These could be particularly useful for those planning on camping or holidaying in remote areas.

The Pari BOY Mobile S is smaller and lighter than the Pari Turbo Boy SX and is compatible with the sprint nebulising bowl and tubing that are used by the conventional machine. If you would like to book one of these machines please ring the Auckland office 09 6360827 and speak to Wendy Edmondson or email: cfauckland@ pfrc.org.nz. All these loan machines are cleaned and the filter is replaced between people.

Portable nebuliser

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A look at children’s stress and coping

How Disneyland Changed my Life. By Jessica Scott

The start of the school year is often a stressful time for most children but adding enzymes, physio and sometimes diabetes to their new year can add to their adjustments.

Jessica gives a very honest account of how travelling has helped her maintain a sense of balance in her life Nobody ever said life was easy, and boy don’t I know it. But the best thing about my life is knowing that whenever I’m feeling down, Disneyland is just a plane trip away. In 2003 I was fortunate enough to go on a Koru Care trip to Disneyland. It changed my life forever. I was 14 at the time and it was the biggest trip I’d ever been on, and the most time spent away from my parents. Before going I was shy and scared, but coming back home I was a new person. All of a sudden I had this desire to see the world and what it had to offer me and nothing was going to get in my way. Since then I have been back to Disneyland numerous times and every time I’m hit with the same feeling of “I’m home”. I even love Disney so much that I went and got my favourite characters tattooed onto the back of my legs. Being diagnosed with CF at the age of 7 was a shock for my family and me. To have your life turned upside down at such a young age really affected me. It’s only now when I look back I realize just how much I let it win. However, as a healthy 23 year old my thoughts towards having CF have changed dramatically. I used to let it determine how I was going to live my life, and it wasn’t until after I came back from Disneyland that I made the decision to let myself determine how my life was going to go. So I truly do believe it changed my life and I strongly encourage anybody who is given the opportunity to go and let it change your life too. I was offered to go once before, when I was 11 and I said no. At the time the thought of being away from my family was too much so I am so thankful

that I was offered it again at 14. I wouldn’t be the person I am today without going on that trip. Since then I have finished school, got my Diploma in Travel and Tourism (inspired by my love for travel), been on a plane at least once a year, gotten married, getting divorced (such is life), and am now about to start a Certificate in Sports Training and Development, which I am very excited for. A lot of negative stuff has happened in my life recently but despite everything I have kept positive through it all. I’ve had a lot of friends and family comment on how strong I have been, and the truth is, I can’t afford to let anything get me down. Life works in mysterious ways, and it throws some curveballs at all of us, but when everything horrible happened to me at the beginning of this year, I thought to myself that I only have two roads to take from here. Option 1: I stay at home every day, feeling sorry for myself, and let my negative attitude effect my health & wellbeing or Option 2: I get out of bed every day and put one foot in front of the other and slowly pick myself back up, because there is more to life than dwelling on the ‘what ifs’. So I chose option 2, and I can honestly say I am happy, and I have the most amazing family and friends anybody

Recipe Competition - Runner up Seb Bell

5 tablespoons olive oil

Mushroom Hazelnut Honey Salad

Jessica shows her love for Disneyland by sporting a tattoo

2 tablespoons balsamic or red wine vinegar 4 tablespoons of orange juice 2 tablespoons fresh tarragon or thyme, chopped 2 cloves garlic, crushed (1 teaspoon) 1 tablespoon clear liquid honey salt & freshly ground black pepper 250 grams (about 3 cups) mixed mushrooms, sliced (a mixture of buttons, flats, gourmet browns and fancy mushrooms like shiitake) 1/2 cup hazelnuts or almonds, toasted & chopped

Seb’s delicious Mushroom Hazelnut Honey Salad

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4 handfuls of mixed baby lettuce

What can I do to help my child through their stresses?

Jessica Scott enjoying the simple things in life

could ever ask for. Being positive has also had a good effect on my health too. I am very fortunate anyway to have a mild form of CF, but I know how important it is to take care of myself. The one thing that really makes a difference in my life is the amount of exercise I do. Not one day goes by where I’m not exercising, I go to the gym every day, play Netball on the weekends, go to Pilates twice a week, dancing once a week, and a stretch class on the weekend. And if I’m not doing all of that I’m walking or using the exercycle at home. I also jogged ‘Round the Bays’ this year. It keeps me healthy so I love doing it. Exercise isn’t a chore for me, it’s my life, that and Disneyland. As for my future, it looks bright. I can only hope for the best and see where life is going to take me. I have an upcoming trip to the Gold Coast with a group of my closest friends and I’m currently saving for a Contiki tour of Europe called “The Road to Athens”, which would be another life changing experience. And of course another trip to Disneyland will be in my near future. It’s a place I will always go back to, and every time I walk through those gates I remember the very first time I went there and how important those memories are to me.

• Combine 4 tablespoons of the oil, vinegar, orange juice, tarragon, garlic and honey in a small bowl and whisk until blended. Season with salt and freshly ground black pepper. • Heat the remaining tablespoon of oil in a heavy frypan over a medium heat, add the sliced mushrooms and sauté for 4-5 minutes. Add the hazelnuts and remove from heat. • Toss the lettuce with the dressing until the leaves are well coated. • Divide among 4 salad plates and spoon mushroom and hazelnut mix over the salad. Serves 4

Ask the question, “what challenges might my child be facing?” If there is a change in behavior there is often a troubled spot behind it. It is important to access the views of children as sometimes there is a gulf between what is observed and the child’s own perception of their stress. For example, a complaint about not wanting to take medication at school may not necessarily mean a child is troubled about taking medication. Perhaps they have to go to the office to get the medication which makes them seem different from their friends. So it is important that we listen carefully to what our child is telling us. • Understanding and offering coping strategies is really helpful. A recent study reported that 92% of children talk to Mum when they are stressed. However, this is not always the case, especially if the stress is about their CF

and they have picked up that this is also Mum’s one big stress. An offer of an alternative listening ear, such as Dad, other family members or their nurse or doctor, can be very helpful, as can spending time with a suitable game or listening to music together. Children can be creative in their coping but sometimes they need suggestions to identify other supports. • Include children in conversations that are about them, as they often worry more if they try to interpret a conversation between adults. It helps to have a ‘tool box’ of strategies as more problems may occur when a child’s stress is kept in. In summary: when dealing with the more difficult situations with our children, (a) listen to your child, and (b) make careful, informed decisions around interactions with them. By Sally Carron

Raewyn Sutherland Retires Raewyn Sutherland, the CF physiotherapist at Auckland City Hospital, has retired. Raewyn has been with the CF adult team since it was set up as a multi-disciplinary group to focus on Cystic Fibrosis in Green lane over twenty years ago. Dominica Horton (Dom) has replaced Raewyn in the role. We hope to see Dominica and tell you more about her in the next issue of this newsletter.

Raewyn with CF Nurse Jan Tate from Starship on her last day at Auckland City Hospital

Hearty Towers happy with new TV donated by CF Auckland Branch Hearty Towers the New Zealand Heart and Lung Transplant Service, moved into their new revamped premises in the old Birthing Unit at the Greenlane Medical Centre in late April of this year. The new premises are light and airy and spacious. CF Auckland donated a large television which is now hung on the wall of the new lounge. Wendy Edmondson was taken to see the television by Josephine Power and Helen Gibbs. Helen told Wendy that Hearty Towers is settling in well to its new location, which is more suitable for its patients needs.

Helen Gibbs from Hearty Towers shows Wendy Edmondson the new TV

Bouquets:

We wish to recognise, with thanks, the support given to CF Auckland Branch from the following organisations, companies and individuals: Pub Charity – for approving a grant to cover the costs of producing this newsletter for the CF Community Sacred Heart College – for holding a collection to raise funds for CF Awareness Week and allowing ex student Alex to talk to their current students about CF Howick Lions – for holding a Trivial Pursuits night at the Pakuranga Rugby Club in aid of CF Auckland Mikey at Pronto Print Parnell – for printing Movie Night tickets in one day and refusing to charge for them Karryn Muschamp – for designing Movie Night poster and tickets at no cost Other Supporters – Jill Thorrat – for sourcing and organising smart and yet very practical gift packs for adults attending hospital; Stephanie Payne & Rachel Eliott for buying and sorting awesome activity packs for children in Starship about which we have already received positive feedback and Jane, Angus and Luke Drumm for giving up a morning to move furniture and build shelves at the CF Auckland branch office. 11


Diary Dates

Mark these upcoming dates on your calendar. Remember all Assn meetings are held at 7:30pm, 581 Mt Eden Rd (Asthma Society Rooms).

13-19 August - Awareness Week 2012 26 August - Movie Night 11 September - Auckland Branch meeting 25 September - Tuesday coffee morning 9 October - Auckland Branch meeting

13 November - Auckland Branch meeting Late November - CF Auckland Christmas event (date TBC) 2 March 2013 â&#x20AC;&#x201C; Taupo Ironman 17-18 August 2013 - National Conference

Starship CF Team

The CF team is available during the hours of 8am to 4pm. If you have an urgent problem outside these hours either telephone your GP or call Starship and contact the paediatric medical registrar on 307-8900 or 379-7440 or visit www.starship.org.nz Respiratory Consultants:

Dr Cass Byrnes, Dr Julian Vyas, Dr Mirjana Jaksic, Dr Naveen Pillarisetti

CF Nurse Specialists:

Jan Tate

Ph 307 4949 ext 6556# Mob 021 412 738

Dietitian:

Jenny Heyward

Ph 307 4949 ext w25081#

Physiotherapist:

Rebecca Scoones

Ph 307 4949 ext 6658# Mob 021 241 5342

Lung Function:

Cathy Douglas

Ph 307 4949 ext 6483#

ORGANISATIONS WHO SUPPORT CF IN AUCKLAND

Auckland Adult CF Services Respiratory Consultants:

Dr Margaret Wilsher, Dr John Kolbe, Dr Mark Oâ&#x20AC;&#x2122;Carroll, Dr Sally De Boer

Clinical Nurse Specialist Respiratory:

Cath Lamont

Ph 307 4949 ext 25186# Mob 021 345 423

Dietitian:

Lisa Guest

Ph 307 4949 ext 23354#

Physiotherapist:

Dominica Horton

Ph 307 4949 ext 22821#

Psychologist:

Joyce Fennell

Ph 307 4949 ext 25181#

Auckland Branch Contacts Co - Chairperson:

Amanda Blakey

Ph 575 2744, richnamanda@xtra.co.nz

Co - Chairperson:

Anthea Wendelborn

Ph 478 3854, anthea.w@me.com

Treasurer:

Allyson Harvey

Ph 638 8123, paulandallyson@xtra.co.nz

Grants:

Robyn Somerville

Ph 624 2448, rostrev@ihug.co.nz

Local National Board Member & Board Chairperson:

Jane Drumm

Ph 817 4753 drummsj@ihug.co.nz

Auckland Branch Co-ordinator: Tuesday, Wednesday, Thursday

Wendy Edmondson

Ph 636 0351, DDI 09 636 0827 Mob 022 109 1524, cfauckland@pfrc.org.nz

North Island Field Worker: Tues, Weds, Thurs, Fri

Sally Carron

Ph 636 0351, Mob 021 126 1237 sally@cfnz.org.nz

For Genetic Services Auckland Hospital - Monday-Friday, 8am-5pm, Ph 0800 476 123, 307 4949 ext 25870#

Auckland CF website: www.cfauckland.org.nz

National Office

Kate Russell Chief Executive, Email: kate@cfnz.org.nz Ph: (03) 341 8024, Mob: 021 452 831

1st Floor, Broadway, 62 Riccarton Road, Christchurch PO Box 8241, Christchurch Phone 0800 651 122 www.cfnz.org.nz

Julie Clemett Administration Manager Email: julie@cfnz.org.nz, Ph: (03) 341 8014

Note: All forms or applications to National Branch can be downloaded from this website (i.e. Breath4CF forms)

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Caroline Wagteveld-McKenzie Fundraising & Events Co-ordinator Email: caroline@cfnz.org.nz, Ph (03) 341 8026 Sally Carron North Island Field Worker Mob: 021 126 1237, Email: sally@cfnz.org.nz Sue Lovelock South Island Field Worker Mob: 021 0222 1203, Email: susan@cfnz.org.nz

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Thank you to all those who have contributed articles and photos to share with our community. The views expressed in this newsletter are those of the individual contributors and are not necessarily supported by the Cystic Fibrosis Assn or the Editor.


Auckland CF Newsletter August 2012