PAGE ONE

Summer

2016

Inside this issue....

Cover Story.................................1 PHWA Welcomes GP Ambassador

The Hype....................................2 Editors update, Birthday Club Notice Board...............................3 Donations, Meetings, Fundraising, Events Calendar, Announcements, Sponsors & Supporters

Recipe for Health........................4 Summer Chicken & Savoury Muffins

PHenomenal Lives......................5 Musician Chloe Temtchine PH Story

News from the Network..............6 PHA USA Heart2Cure Update

Feature Story Continued.............7 Central City Medical Centre feature

Just Breathe................................8 The ABC's to Better Breathing

Health Matters............................9 Communicating with your medical

team Research, Resources & Reads......10

Health Professionals: The role of B-blockers in targeting the right ventricle

PHocus.........................................11 Coping with PH when those around you don't understand

Good Health.................................12 Long Term PH Survivors Share Words of Hope & Encouragement

Carers Corner................................13 Getting Back on Track

Helpful Health Hints......................14 Inhalers, Fatty Liver's, First Aid Kits

Community Conversations Online..15 Social Media and PH

Support Groups.............................16 My First Support Group Meeting: Patients Share Their Experiences

Attending a Support Group............17 Not just for the newly diagnosed

PHA USA Online University............18 Effectiveness of Anticoagulation & PAH Update 2016 Lowdown on PH............................19 What is PH & how does it differ from normal Hypertension?

PHWA at your fingertips............20 Contact Details for Home Base, WA Support Groups, Useful Contacts, PHWA Disclaimer

Hello PH Family, happy new year and welcome to the Summer 2016 edition of our magazine. In this edition we begin to feature our new branding and logo which is finally ready! We say goodbye to our interim logo kindly on loan from our USA PH sister group which we adapted to WA needs and thank them for their generosity.

As you look at our new logo (front page header) you will see that the shape represents the country of Australia as well as looking like a pair of lungs with the heart at its centre. The many colourful shapes around it represent the faces of PH and how many different types there are. We introduced colours that really pop and draw the eye while being uplifting and modern, we hope you like it as much as we do.

In this edition we introduce you to our new GP Ambassador Dr Chris Denz from Central City Medical Centre feature story on cover, continued page 7. We acknowledge Rare Disease Day around the globe by promoting PH to the community.

We have some excellent articles about PH in this edition from what's been happening Internationally to here at home. Some great tips and information on how to live better with your chronic disease and its management for patients and carers. How to communicate with your family and your medical teams through to understanding PH better.

2016 is all about learning to live better with our disease and each edition will reflect that along with many other exciting developments so watch this space!

Happy Days from your PHWA Team Be kind to one another.

February March April Wendy Lunt Andrew Violettis Christine Clarke Deidre Sabine Jacqueline Rooney Barbara Elliott Linda Franklin Viviane Boekelman Jennifer Bertinat Jean Ottley

Dorothy Scott Patricia Baker

PAGE TWO

The Hype

From your Editor

Melissa

Proud Sponsors & Supporters of PHWA

Donations & Fundraising Xmas Raffle & Santa Stall 2015 covered the costs of

the function and rose a little more towards the administration for 2016 (this was

our smallest raffle to date). For a full breakdown on any financials please feel

free to speak with our CFO. Donation member Jackie Zele $500.00, (will go

towards a patient project later in 2016). Fundraising in 2015 funds have been set

aside to go towards further patient and awareness projects with a small amount

allotted for administration/catering. Thank you to everyone who has made a

donation of money and time to our organisation we are so grateful.

Thank You's & Shout Out's Wyllie Arthritis Centre who generously provide

their function room to us for each meeting. This is invaluable to us and we are

very grateful. PHWA Sponsor Gabrielle Worthington from Dependable Laundry

Solutions. She is very generously sponsoring us for the support group "PHan

Mail" magazines to be printed. Tony Beard Business Foundations who advises &

guides us on our future planning. The team at Weigh n Pay Woodvale, business

sponsor and IT management. Connect groups who continue to support and

guide our group, Carers WA who are there to offer assistance to our carers

wherever they can, and to our Volunteers, family & friends who work tirelessly

to support our team and its members; we greatly appreciate your assistance,

kindness & reliability.

Support Group Meetings - PHWA Please advise if transport is needed we'll do

our best. Meeting Dates for 2016 - Tuesday's 11.00am - 2.00pm, registration

10.45 DATES Below under Save the Date! Catered Lunch cost per person $10.00

pp + $2.00 meeting registration (subject to change, please advise dietary needs)

- Menu will consist of a Roast dinner with a dessert to finish. Catered by the

Nourished Cafe Wyllie Centre. Morning tea supplied by PHWA.

To all those who have access to the internet please be

aware that you can log onto our new website at

www.phwa.info and go to the PHWA Support Group

page to see the meeting dates and to RSVP. You can

also get access to the latest PHan Mail magazine

(under magazine) by downloading it directly.

2016 PHWA Support Group Meetings

Quote - Anatole France To accomplish great things, we must not only act, but also

dream; not only plan, but also believe.

USA - www.PHAssoiation.org

Landsdale Forum Centre

PAGE THREE

Moroccan Chicken with Couscous

INGREDIENTS - Serves 4 - Prep time: 15 mins Cook time: 10 mins

500gm chicken tenderloins 2 tsp Moroccan spice mix Canola cooking spray 1 & 1/2 cups couscous 1 orange 1/2 cup raisins 1 & 1/2 cups salt reduced chicken stock 1 carrot, peeled and thinly sliced 1/3 cup shelled pistachios (no added salt, roughly chopped) 2 tbl chopped fresh coriander Steamed beans, orange segments to serve Bought to you by www.heartfoundation.org.au

METHOD - You can use chicken tenderloins or other cuts that suit you. Tenderloins are juicer.

STEP 1

Place chicken in a bowl and combine with spice mix.

STEP 2 Heat a frying pan on medium and spray with cooking spray. Cook chicken in batches for about a few mins on each side or until just cooked through. Remove from pan, cover with foil and set aside.

STEP 3 Place couscous in a large bowl with finely grated zest from the orange, then juice orange and add juice to couscous and stir in the raisins.

STEP 4 Place stock and carrots in a small pan and bring to boil, reduce heat and simmer for 3-4 minutes until carrots are just tender. Pour hot stock and carrots over couscous, cover with plastic wrap and set aside for 5 mins.

STEP 5 Fluff couscous with a fork and stir through pistachios and coriander. Place in serving bowls and top with Moroccan chicken. Serve with steamed beans or other vegetable of choice.

Savoury Pumpkin, prosciutto, feta & pine nut muffins

INGREDIENTS - Serves 12 - Preheat oven to 180 degrees

6 slices prosciutto or bacon, halved width ways 2 cups self raising flour 300gms pumpkin, cut into 1cm cubes, roasted with a touch of oil and salt 1/2 small red onion, finely chopped 150gms crumbled feta (Danish is a good one) 1/4 cup fresh basil leaves chopped finely (parsley can be used also) 3/4 cup buttermilk 1/2 cup vegetable oil or other neutral oil 1 egg, lightly beaten 1/4 cup pine nuts or other (optional) Bought to you by Central City Medical Centre Health News

METHOD - Do not overbeat this recipe or it will be tough & crumbly

1 Lightly grease a 12 hole muffin pan or use muffin papers. 2 Place prosciutto or bacon into the base and sides. 3 Add pumpkin, feta, onion & basil to a bowl with sifted flour and mix well. 4 In a separate bowl whisk together buttermilk, oil and egg. Season to taste with salt & pepper. 5 Make a well in the centre of dry ingredients. Add milk mixture and mix lightly with a fork until just combined. 6 Pour into muffin pan holes/papers and sprinkle with pine nuts. 7 Bake for 20-25 minutes or until a skewer comes out cleanly. 8 Remove from pan and serve warm or cold. Can be frozen for up to one month.

PAGE FOUR

It was Monday March 4th, 2013 when a twister dropped out of the sky and was bearing down on me. It was small to begin with, but within minutes, it turned into a horrifying spiral, gaining speed and ripping through me on its way to touch ground. There was little I could do to save myself other than close my eyes and pray. As the earth crumbled beneath me, lights faded from the sky and evening turned to dark. Red lights flashed and sirens wailed.

Unbeknown to me, deadly 180mmHG pressures in my pulmonary arteries in my lungs had wreaked havoc throughout my body, resulting in widespread damage to my lungs and heart. The next day, from my bed in the Critical Care Unit (CCU), a make shift shelter for those displaced by the tornado of life threatening diseases, I gazed outside at the falling snow and relived the destruction that, just a day earlier, had almost taken my life.

A sound beside me, a perpetual hiss, disrupted my gaze. I looked down to discover something shining. It stood perfectly motionless. A clear, thin tube snaked its way from it to me. I could not breathe on my own. In this strange new world, which I had awakened to (thank God), it was apparent that I now had a full time escort: a tin man in the form of an oxygen tank.

I grew up in New York City to parents with diverse cultural backgrounds, and I left home in my early teens to explore the world. From escapades on the streets of Spanish Harlem, to singing in cafes on the sidewalks of Barcelona, my experiences served as fuel for my music.

As a singer and songwriter, I need my vocal apparatus to work. With one paralysed vocal chord, ulcers all over my throat, and my new oxygen sidekick, I wondered how in the world I would be able to sing again. Although I realised that it was a privilege to even be contemplating such a thought after a near death experience only 24 hours earlier, I still thought, "In order to produce sound, there must be a steady stream of air flowing out of my lungs. There must be a way to make this work."

I can't pretend that the thought of jumping off a cliff didn't cross my mind, but fortunately, my spirit took over and reminded me that I had been given the opportunity of a lifetime: to truly be brave. As J.R.R Tolkien eloquently said, "It is not the strength of the body that counts, but the strength of the spirit".

When all hell is breaking loose, and bad news is barrelling toward you from every direction, holding onto any sort of hope is not an easy task. When I was told the situation was "touch and go," that I might never leave the hospital, and that if I did, I might not have much time left and that I might not breathe on my own again, I had to draw upon every ounce of strength I had and hold on very tightly to a power far greater than myself. Otherwise, the tornado that had altered my life would simply take it.

I visualised myself writing, recording and performing music. And it became clear that every part of me - my spirit, my heart, my brain, my courage - was going to have to work together in order to get me back to doing what I love. A miracle happened, and days later I was wheeled out of the CCU, accompanied by my new oxygen companion, whom I affectionately refer to as Steve Martin.

Once home, Steve Martin and I got to work. We wrote, performed and recorded a new song titled "Be Brave," a song that is intended to serve as an anthem for all those afflicted directly or indirectly by this aggressive and unpredictable disease.

The song debuted on March 29, 2014, and 50% of all proceeds go to the USA Pulmonary Hypertension Association to support its mission: to find a cure for all with PH.

Please download your copy from iTunes today or visit this amazing PH superstar on our website phwa.info under Media.

PAGE FIVE

Pulmonary Hypertension International News from sister group PHA USA, PHA’s Heart2CurePH Ads Are Getting More Exposure!

The Pulmonary Hypertension Association (PHA) community is abuzz about the new Heart2CurePH ads. There have been more than 225 radio and TV airings of the new public service announcements (PSAs) since PHA launched the campaign in November 2015.

In addition to running on TV stations in Chicago, Los Angeles, Philadelphia, Dallas and a few other cities across the country, the TV ads are airing on national networks, including Fox and the Golf Channel. The radio ads are also running on stations across the country.

Along with the radio and TV ads, people have been sharing stories of sightings on the Internet, in The New Yorker magazine, on billboards in Dallas and Houston drugstore parking lots, on transit shelters in Chicago, Philadelphia and San Francisco, and in New York and Los Angeles buses.

The Rhode Island Hospital PH Centre was inspired to make a display case promoting PH awareness in the hospital lobby in November and December, featuring Heart2CurePH print ads.

The Heart2CurePH campaign is a multimedia public service effort developed by PHA to bring more awareness to PH, to promote early and accurate diagnosis, and to let the general public know how to support the PHA community. The campaign launched as part of Pulmonary Hypertension Awareness Month on the CNN screen in Times Square where the ads aired for two minutes every hour every day for four weeks.

PHA thanks all who are running our pro bono billboards, magazine ads and radio and TV public service announcements. We will continue pushing more outlets to run them as we work to expand exposure for the Heart2CurePH campaign 2016.

If you happen to see or hear one of the ads, please let us know on the Pulmonary Hypertension Association Facebook page.

Download and share the Heart2CurePH print ads and the Heart2CurePH TV & Radio Ads Heart2CurePH

ad in The New Yorker

PAGE SIX

FEATURE CONTINUED

Welcome To Our Clinic

Central City Medical Centre is an accredited GPA and WAGPET practice and offers state of the art medical facilities. We have built our name and reputation over the past 25 years to both local and international businesses and are proud to be recognised as one of Perth's most prestigious and leading medical centres. We keep waiting times to an absolute minimum at all times as our clinic offers 12 consultation rooms and 3 nursing treatment rooms. Located next to us are a Pathology collection centre and a partnering Physiotherapy centre.

Meet Our Team

All our doctors are vocationally trained general practitioners and our medical centre is a GPA accredited practice. At Central City Medical Centre we have a strong commitment to undergraduate (medical student) and postgraduate (GP registrar) education. Our doctors provide the full range of general practice care including treatment of acute and chronic conditions, preventative medicine, workers compensation management, ECGs & stress tests, spirometry, audiometry, travel advice and vaccinations, and sexual health checks.

We pride ourselves on our ease of access being open 7 days a week and aiming to always being able to offer routine appointments on the day as we believe you should be able to see your doctor when you are ill, not 2 weeks later.

We are a private billing practice and payment is required at the time of the consultation.

We provide the full range of general practice care including treatment of acute and chronic conditions, preventative medicine, pap smears & colposcopic examinations, contraceptive implant insertion/removal, skin checks, antenatal & paediatric care, childhood immunizations, minor surgery, ECGs & stress tests, spirometry, audiometry, travel advice and vaccinations, and sexual health checks.

We also have on site psychologists and a dietitian, and are well served by a specialist medical centre next door with physiotherapy, chiropractic, podiatry, massage and a pathology collection point.

Our Services

Central City Medical Centre offers a vast range of services both professional and personal to its patients. Psychology Pre Employment Medicals Tiered Medicals Additional Tests Specialised Medicals Onsite Health Clinics & Wellness Programs Onsite Flu Vaccination Clinic Onsite Skin Check Clinic Workers Compensation Family Health Checks Travel Advice & Vaccinations Sexual Health Corporate Services

Location & Contacts As Central City Medical Centre is situated in the main Perth train station upper concourse there is ample available parking (we are actually underneath Citiplace CCP car park), we are well served by buses and, of course, trains.

Whilst we hope not to keep you waiting too long for your appointment our waiting room has a TV, a kid's play area and free Wi-Fi for your entertainment.

FIND US at Shop 14, City Station Concourse, 378 Wellington Street (corner Barrack Street), Perth WA 6000.

T: 9225 1188 www.ccmc.net.au www.facebook.com/perthGP

PAGE SEVEN

The PH Medical Team at North Shore University Hospital in the USA offers PAH Advice

Pulmonary arterial hypertension (PAH) can cause uncertainty and trepidation for those living with it. As a medical team, we've tried to come up with a few suggestions to help improve your overall well being.

Always be positive! - Each day is a new day, and you can make an effort to improve your breathing.

Breathe - Your breathing can be improved with a little work and exercise. Follow the guidance of your physician and rehabilitation therapists.

Concentrate - Hone in on the process of breathing so you can gain a better understanding of it and how to control it.

Diary - Keep a diary of things that make breathing worse or techniques you use to make it better.

Exhale - During any activity in which you have to exert yourself, don't forget to exhale. Exhaling as much as you can will help make your breathing more efficient.

Follow - Your doctor's recommendations may be the key to your breathing success. Be sure to take all the medications and follow your doctor's instructions.

Grow - Advanced lung disease is a chronic condition. You will have to grow with it and learn to control it, not let it control you.

Help - Don't be afraid to ask for help when a task is difficult or overwhelming. Seek help in understanding your illness or aspects of your care.

Inhale - Make sure to inhale when you are involved in active motion. This allows for the maximum amount of oxygen to enter your blood.

Jump to action! - If you notice any changes in your breathing, alert your physician immediately.

Keep Calm - When you feel anxiety or an episode of shortness of breath coming on, stay calm and focus on your breathing. Remember the breathing exercises that your physician or respiratory therapist taught you.

Live each day to its fullest! - Just because you have a chronic illness does not mean you should stop enjoying your life and the things you like to do - although some activities may need to be done in moderation.

Manage your medications - keep a log of your medications, who prescribed them and why.

Never leave the house without your inhalers/medicine pump etc and a list of all your medications - This could be vital information in case of an emergency.

Oxygenate - If your breathing is becoming a handicap, talk to your physician about oxygen therapy.

Pace Yourself - Complete all tasks at your own pace to prevent shortness of breath and other complications.

Quit Smoking - If you smoke and currently have a breathing problem, quit smoking! Your breathing starts improving as soon as you put out your last cigarette.

Remember your support system - Your support system includes your family, caregivers, physicians, respiratory therapist and anyone else who is involved in your care. If you need any help with your health, remember to contact the appropriate individual without delay.

Support Groups - A support group exists for virtually all pulmonary diseases. You can find your local PH support group at www.phwa.info under the Support Page or go to www.connectgroups.org/au

Take - It's important to take all your medications as your doctor has prescribed. Take advice; your healthcare providers are there to help Do NOT stop any medication without consulting a healthcare provider.

Understand your disease and be proactive - Taking an active approach to your health is the best way you can help your breathing. Educating yourself on your own medical condition will help you understand the causes of your breathing problems and help you manage it.

Ventilation - It's important to keep the air in your house well ventilated and in constant circulation. Dust, pets and other irritants may worsen your breathing. Ask your physician about proper ventilation methods.

Watch for breathing pitfalls - Breathing pitfalls are situations when you expend lots of extra energy. For example, forgetting something on the first floor when you go upstairs requires you to make an extra trip.

Exercise - Slow but steady physical and strength training exercises can help you better your breathing efficiency. It may be difficult at first, but it will eventually help your breathing.

Yesterday is gone! - Focus on what you can do today to improve your health and well being.

Zest - Incorporate some activities in your life that make you happy. Being in a better mood can increase your overall health and help improve your breathing and outlook on life.

PATHLIGHT - WWW.PHAssociation.org

PAGE EIGHT

HELPFUL HINTS

From "ME" to "WE"

Communicating with your Medical Team

When you are dealing with an illness like PH, it is important to talk often and comfortably with your healthcare team. SPEAK UP to help the team understand your needs and discuss options: the PH team does not know what you are experiencing or what questions you have until you tell them. Empowered patients allow the PH team to partner with them in their care and know that taking charge of their health is an ongoing process. The following tips will make it easier for you and your team to cover everything you need to talk about during your appointments.

List & Prioritise Your Concerns If you have several items, put them in order and group similar topics together. Don't put off the things that are really on your mind, bring them up right away! Bring Information With You Some PH teams suggest bringing all medications and supplements to your appointment. Others recommend you bring a list of everything you take. Find out your team's preference and try to meet their request. Have copies of your medical records, a current medication list, PH history, other recent health history and immunisations and remember to update them regularly. Don't forget to bring insurance information and medical ID numbers including contact names and phone numbers. A helpful resource for managing this information is the new PHWA PH Patient Passport (due for release in May 2016) or the online PH USA Empowered Patient Toolkit at www.PHAssociation.org/OnlineToolkit. Consider bringing a Family Member or Friend Let your family member or friend know in advance what you want from them at your visit. Your companion can remind you what you planned to discuss with the doctor if you forget, take notes for you and help you remember what the doctor said. Plan to Update the Team Be honest with your healthcare team when you answer their questions. Provide points of reference; keep a journal or calendar of symptoms and issues and note the impact on your daily activities and what makes symptoms better or worse. If family or friends are with you, be sure to include them in the conversation and ask them to provide examples. Your team may ask you how your life is going, as this may be useful medically. It's okay to ask family and friends to leave the room so you have some time alone to talk to your team. Let the doctor know about any major changes or stresses in your life, but don't forget to talk about the good things as well!

Ask Questions If you don't ask questions, your team may assume you already know the answer or that you don't want more information. If you don't understand something, say so. You should not leave until you comprehend what is being communicated. If you have a family member or friend who helps you take medicine, make sure to sign a release and ask the team to talk to them too. If you have a power or attorney and/or healthcare directive, carry a copy with your medical records and update them as appropriate.

When it comes to your treatment, instructions from your team are important. Tell them what you think the instructions are and let them know if they need to write them down. Ask about different treatment options. You will benefit most from a treatment when you know what is happening and are involved in making the decisions. Make sure you understand what your treatment involves and what it will or will not do. Ask for prescriptions to be renewed at your appointments. If you need to call your team for a prescription renewal, try to give them at least 2 weeks' notice.

Know when to call your team and when to head for the emergency room. Does your team want you to call with a 2-3kg weight gain over two days? What are your team's specific instructions related to the PH therapy you are on? If you wonder if your question is one you should ask your team, please call; they are there to help you and can talk through any issues you are having.

If you go to the Emergency Room Make sure to bring your prepared collection of medical information and contacts. While in the emergency room, ask questions if you don't understand tests or procedures that are being done. Make sure to notify your PH team on your way to the hospital even if your visit is not PH related and contact them with an update after your visit. Keep Contact Information Accessible Always have your PH centre's phone number available in your phone under DOCTOR, on your medical alert bracelet and in your medication box. Have a list of important phone numbers and an up to date medication list on your refrigerator; this is usually the first place the Ambulance Paramedics will look for it.

Always remember that you are your own best advocate. Communicating openly and honestly with your PH team is essential to your PH journey.

(Article courtesy of USA PH Pathlight Magazine Mayo Clinic Medical Centre).

PAGE NINE

Research Corner Targeting the Right Ventricle in Pulmonary Arterial Hypertension: The Role of B-Blockers

Pulmonary arterial hypertension is characterised by pathological remodelling of the pulmonary vasculature leading to a progressive increase in pulmonary vascular resistance and pressure with subsequent development of right heart failure. Right ventricular dysfunction is an independent predictor of negative outcome in pulmonary arterial hypertension.

As such, there has been increasing interest in better understanding the role of the right ventricle in the pathophysiology of pulmonary arterial hypertension and in developing therapies to target the right ventricle. Here we will review novel therapeutic approaches to target the right ventricle in pulmonary arterial hypertension.

As in left heart failure, the sympathetic nervous system is unregulated in right heart failure. Studies have shown elevated plasma norepinephrine, reduced cardiac uptake of metaiodobenzylguanidine, increased postganglionic muscle sympathetic nerve activity, down regulation of the B1-adrenergic receptors in the right ventricle, and reduced heart rate variability.

Treatments targeting these pathways are approved for left heart failure, whereas little evidence is available for their use in right heart failure.

B-Blockers are considered relatively contraindicated in pulmonary arterial hypertension, due to concerns for the possible negative effect on these patients' hemodynamic and exercise capacity. This is based on a study involving 10 patients with portopulmonary hypertension, in whom withdrawal of propranolol was associated with improved exercise tolerance.

A case report described a patient with portopulmonary hypertension who suffered acute cardiovascular decompositions after receiving a B-blocker for supraventricular tachycardia. In another study, patients with severe mitral stenosis and pulmonary hypertension undergoing valvuloplasty had increased pulmonary vascular resistance and decreased cardiac output when given atenolol, a B-blocker.

On the other hand, B-blockers have been shown to improve right ventricular function and prevent remodelling in the heart muscle in animal models of pulmonary hypertension.

In humans, so et al. showed in a prospective study that there are no increased adverse clinical or hemodynamic consequences associated with the administration of those drugs. This study involved 94 patients with pulmonary arterial hypertension, among whom 28% were prescribed a variety of B-blocker.

The study had limitations in that it was non-randomized, and there were differences in pulmonary arterial hypertension subtypes, exercise capacity, and accompanying diseases between groups treated with and without B-blockers. As such, the role of B-blockers in pulmonary arterial hypertension remains uncertain.

In summary, the right ventricle plays a central role in pulmonary arterial hypertension, and the management of right ventricular dysfunction and failure remains a challenge.

Recent work has advanced our understanding of the mechanisms leading to RV failure and remodelling. Targeting these pathways should guide the development of RV-specific therapies. Studies are needed to further look into whether B-blockers benefit the right heart in patients with pulmonary arterial hypertension. Pathlight www.PHAssociation.org By E.C Roach and J. Sharp, Department of Pathobiology, Lerner Research Institute; and S. Farha, Department of Pathobiology, Lerner Research Institute, and Respiratory Institute, Cleveland Clinic, Cleveland, Ohio USA

PAGE TEN

PH CUS

Coping with PH When Those Close to You Don't Understand

Living with a chronic illness like PH can be difficult, and

feeling misunderstood and unsupported can increase that difficulty. When patients are newly diagnosed, they may try many strategies to help the people in their lives understand.

"It's very human for anyone to talk a lot about a new diagnosis. But once you're undergoing treatment and life has settled down a bit, It's important to downshift the PH talk and not let it be the first thing you discuss with friends and family, shares Joanne Sperando-Schmidt, a long term PH support group leader and patient.

However, many find that overcoming the lack of understanding is a long term project. Just as patients need time to understand an adapt to living with PH, friends and family need time to comprehend what their loved one is going through and to sort out the implications for their lives. The trauma of the illness can evoke feelings of fear, depression, anger and helplessness in all family members.

Joanne continues, "I've learned that some people are scared to death of illness, hospitals, etc... so they avoid the subject. Although I've lost some friends, my good friends have gathered closer to me."

Working to Avoid Miscommunication

Working to improve miscommunication can increase understanding, uncover unrealistic expectations and aid in problem solving. Effective communication is about building rapport, understanding and trust. It is intentional, and it comes from a place of empathy. Some ways to improve communication include:

1. Picking a time when you are both at your best.

2. Sharing your understanding for the other person's situation and checking for your part in any miscommunication.

3. Practicing reflective listening. This involves repeating back a portion of what you have heard to ensure you understand what has been shared.

4. Acknowledging the emotions and feelings that have been shared.

5. Allowing for silence.

6. Using "I messages." For example, "I feel (name an emotion) when (what causes the emotion)." Then finish with what you'd like to see happen. For example, "I feel hurt when you don't ask for my input. Please let me share my feelings."

Author Devin Starlanyl suggests putting together a support network of at least five people who can help you meet your practical and emotional needs. This recommendation is helpful for both those living with PH and their caregivers. By having several people to fill various needs such as practical support, companionship and emotional support, no one person gets burnt out.

Letting Go and Prioritising

It can be helpful to let go of the expectation that friends and family will understand every aspect of living with PH. Some people in your life may not be capable of adapting to the limitations or changes that living with PH may bring about.

However, Bruce Campbell, PhD, creator of the CFIDS and Fibromyalgia Self Help program, suggests prioritising relationships, focusing your time on those who are more important or necessary.

"You can offer PH literature, invite them to a PH meeting or local event. Close family can even accompany you to a PH doctor's appointment to see firsthand what we go through. But when all else fails, my advice is to let go. You cannot force people to be interested or to participate in your illness," offers Joanne.

Setting Boundaries

By expressing your own understanding of the limits and unpredictability of your illness, you can have an authentic discussion about how you and those who are important to you can move forward. By setting boundaries for what you do or do not share or how and when you socialise, you can protect your emotional and physical energy levels.

Suggested Reading

Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why Written by Lisa Copen

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness Written by Paul J Donoghue & Mary Elizabeth Siegel

You Don't Look Sick! Second Edition: Living Well with Chronic Invisible Illness Written by Joy Sela

For more information to help you cope with PH, visit www.phwa.info Living & Coping with PH pages & www.PHAssociation.org/copinglongterm Pathlight Magazine PHA USA Written by Kim Lamon-Loperfido Patient & Caregiver Services Manager

PAGE ELEVEN

goodhealth.

Long Term Survivors Share Words of Hope and Encouragement

As long term survivors, we have navigated the seas of

emotions and change in the wake of a PH diagnoses. We have found our "new normal" and embrace it as best we can. We have made lifelong PHriends and found strength in numbers. Every day that we beat the odds is a day to rejoice, but it is also one more day we are out of breath, juggling medications and trying to make the most of our good days. These challenges never go away.

We can't change the chronic and progressive nature of this disease. What we CAN do is support and lift each other up. PHA USA has formed the suPer Heroes group on Facebook for PH patients living long term with PH. We offer these insights, experiences and words of encouragement written by suPer Heroes for suPer Heroes:

Take Back Control!

"Ask for help. PH is a shock to the system. I thought I could conquer it by just doing the same things I had been doing. I was embarrassed to ask for help carrying heavy groceries or ask friends to slow down when walking a block. But I suffered because of my embarrassment and felt sick and more tired. I started asking for help, and people helped. I didn't play the victim. It's just a face that I have to slow down to survive longer". - Priya Balachandran "Don't let PH control your life. You need to stay positive and keep moving forward. Live everyday with love, happiness and don't let anyone stop you. It is your life! You control it. You are either going to sit and cry or pick yourself up or decide to make your life count. That's what matters! Do what makes you happy. Even with oxygen tanks, we live! I find really big, cute purses to carry my Helios tank. I don't let the oxygen stop me. I call my tank, "Prince Charming." With a name like that, I can deal with it better!" - Stephanie Layer

Take Care of Yourself!

"Don't take things for granted. Take the time to enjoy all of the little things in life. I try to spread my energy (an exercise that doesn't end). When I feel good, spacing out the things I would like to get done helps me to maintain that energy levels and not burn out. This takes practice!" - Diane Ramirez

"I have to maintain a healthy life style - eating right, exercising, and staying positive. If I gain five pounds, I start getting short of breath. It happens to be the greatest motivator I've ever had! Medications and doctors can do so much, but we have to take care of ourselves every day to prevent something minor from becoming life threatening." - Marilyn Clements

Deal with Fear

"I've had this disease my entire life. I honestly don't think I've really thought about dying with it. I can die at any time, whether it is health related, accident related, or who knows what? I don't plan things according to my health. I plan things according to what I like to do. If something happens along the way, well, then it happens. But I didn't stop my life just because of PH and wondering, "What if I won't be here?" That is just a question NONE of us can answer." - Colleen Schnell

Stand Strong with Every Breath

"PH is not who you are. Take time for yourself. Learn something new; walk where you haven't walked before. Eat light. Do your best for yourself. Your numbers aren't everything. They will change; you will change. Even embrace your down days. I once told a friend, the reason I got PH was that God wanted me to, shut up and sit down." Life is a journey. Learn to say no gracefully, and give eternal thanks to those who help you. Despite this disease, you have grace and hidden talents within you. Breathe as deeply as you can every day. Be grateful for every little bit of air that makes it to you heart, to your lungs. We are the survivors; we are the lucky ones." - Dale Rankin-Mack

You know your body better than anyone. Don't lose

your voice. If you don't feel well, don't give up until your concerns are addressed. There will always be people who don't understand our struggles and the true significance of our victories. Keep in mind that confusion can be cleared up and often stems from fear, while ignorance is a choice and all the awareness in the world won't change that.

Life with PH is an uphill battle both physically and

emotionally. Our ability to cope can wear out just as easily as our bodies. Surround yourself with people you love and people who truly love you. Our caregivers, families and friends are along for the ride, through the highs and lows. We need to thank them for absolutely everything. We also need to remember, though PH is attacking our bodies, there is no need to carry this burden alone.

One of my favourite quotes goes like this, "When you feel like giving up, remember why you held on for so long in the first place" (author unknown). Pathlight PHA USA By Katie Tobias, PH Patient, Long Term Survivor Advisory Board

PAGE TWELVE

The holiday season is often a time of love, joy, and celebrations; however, it can also be a time of stress, exhaustion, and grief. For some, holidays may prove to be disruptive to routines and schedules - the kids are home, out of town family and friends visit, services shut down, budget, diets and exercise go out the window...

Now that the holiday season is over it can be helpful to find some kind of routine to provide stability

and direction for you and your loved ones. So here is a list of things that may help you get back on track.

PAGE THIRTEEN

Helpful Health Hints

Common Mistakes with Asthma Inhalers

Asthma inhalers are the mainstay of treatment, classified as symptom relievers and preventers. Inhalers can be metered dose inhalers (MDI) or dry powder inhalers (DPI). Newer devices on the market add to common mistakes. Simple mistakes reduce the effectiveness of treatment, which is in no-one's best interests.

Non- Alcoholic Fatty Liver Fatty Liver Disease

Fat can accumulate in the liver of a person who drinks little or no alcohol. Usually, it causes no symptoms but a minority have liver inflammation (which rarely leads to liver failure). The exact cause is unknown. The liver has difficulty breaking down fats. Risk factors include obesity, high blood cholesterol, type 2 diabetes, metabolic syndrome and underactive thyroid.

Common errors with inhalers (that affect treatment) Not checking the canister expiry date Failing to shake well, before use Not exhaling fully before using the device Holding the inhaler in the wrong position Poor coordination of device activation with inhaling

(for MDI's) Inhaling too quickly and/or not deeply enough Breathing out too quickly after inhaling Not using a spacer device for children or the

inexperienced. Of course, not using inhalers as prescribed is a big problem, especially for those who need a preventer. And the right powder capsule must go in the correct DPI. Talk to your doctor, practice nurse, or pharmacist about correct use of your asthma inhaler. Source: www.nationalasthma.or.au

Symptoms, if they occur, include fatigue and pain in the right upper abdomen. Diagnosis is made by blood tests for liver functions and imaging (usually ultrasound, which typically shows fat deposited in the liver). In severe cases, a liver biopsy may be done.

There is no specific treatment and with no symptoms to treat in most affected people, management treats risk factors. These are all lifestyle related.

Maintaining a healthy weight, eating more vegetables and doing regular exercise are important, as is good control of any underlying condition like diabetes or hypothyroidism. Medications that are broken down in the liver are avoided, as is alcohol. Some suggest Vitamin E (but avoid unless recommended by your doctor) and coffee in moderation may befit fatty liver.

Source:www.mayoclinic.org/search"fattyliver"

Make your own FIRST AID kit

You can produce a variety of basic and comprehensive first aid kits from you local pharmacy or from providers such as Red Cross Australia or St John's Ambulance. However, if you would like to make up your own you can tailor the contents to suit your and your family's needs. A first aid kit, kept in a resealable waterproof bag or container, should contain the following:

An easy to read first aid manual Notepad and pencil A selection of adhesive

dressings strips or "bandaids" of various sizes

Non-adhesive dressings to apply to burnt or grazed skin

Cotton gauze swabs, for cleaning wounds and placing over non adhesive dressings

Triangular calico bandages to use as slings or to hold splints

Crepe stretch bandages of varying widths to compress injuries and hold dressings in place

Compress dressings to help control bleeding

Non-allergenic adhesive tape and safety pins to hold bandages in place

Sterile tubes of saline solution (at least 10ml) to wash wounds

Antiseptic cream Ointments that reduce the

itching & inflammation of insect bites

Hydrogel solution for treating burns if no cool water is available

Alcohol swabs Disposable gloves, preferably

non latex material and in medium and large sizes.

Hand sanitiser Rust resistant tweezers Rust resistant scissors Thermal blanket Instant cold pack A hand towel or packet of

tissues Several resealable plastic bags Resuscitation mask or face

shield for cardiopulmonary resuscitation (CPR)

Source: www.allianz.com.au PAGE FOURTEEN

COMMUNITY CONVERSATIONS ONLINE

A Social Bunch: Connecting with Other PHers through Social Media

Living with a rare, chronic illness like PH can leave you

feeling alone, but interacting with fellow patients and caregivers can help combat isolation and provide feelings or acknowledgement and support. Often those who understand aren't available in person, and that's why the PH community turns to social networking sites like Facebook, Twitter and Pinterest to create those helpful relationships.

PHWA & sister groups offers the community a number of specific Facebook groups: Facebook.com/ pulmonaryhypertenisonwa pulmonaryhypertensionsupportgroupaustralia suPer Heroes: Long term living with PH Generation Hope: Young adults living with PH PH Plus: PH plus another chronic condition ie Lupus PHA CTEPH: Chronic Thromboembolic PH PHA Teens

"Personal connection is so important, and if you live in an isolated area or just feel isolated despite being surrounded by people, then social sites can be a much needed haven," shares Stacey Gausling, who is living with PH and lupus.

PH patient Alex Flipse agrees, saying "We share our thoughts and fears about living with PH that most people who don't have Ph don't understand."

Additionally, there are several community created Facebook groups that can be found by searching "PH or "Pulmonary Hypertension" within Facebook's search function.

"I find a lot of support online. If I'm having a bad day and I post about it, I get lots of prayers and support. As a sick person, I do not get out much to meet others, so my Facebook friends help me feel less alone," shares PH patient Kathy Van Osdale-Levitt.

Kathy Groebner, parent to a child with PH, finds support online from other parents caring for children with P. "It's the support; I find that it helps to hear how other parents and doctors have handled issues when I am looking for answers," she says. "Also, by having a way to connect, I have the ability to know who is visiting my area and when. My daughter has made real friends with people who have PH, and she knows she not alone in this journey."

For Lynda Cooper, her complex journey with chronic Thromboembolic pulmonary hypertension (CTEPH) was more manageable with social media. "I joined PHA CTEPH (a PH Facebook group), and a new world opened up. I heard stories from others living with PH, their struggles, their wishes and dreams, their negative and positive interactions with health professionals, their battle with side effects, their frustration at no cure, their courage and hope."

Lynda recently underwent the operation pulmonary thromboendarterectomy (also referred to as PTE), a surgical procedure to remove chronic blood clots from the arteries in her lungs. "I posted online throughout my journey with the PTE surgery that I had in Toronto this past November. All the comments on my postings were positive, encouraging and helpful. I actually purchased a tablet to take to Toronto to specifically keep in contact with friends and family on Facebook during this hospital stay.

Alayna Benoit agrees, "There was one day I was in so much pain, and I went online and expressed my frustration. A few girls commented and told me four beautiful words, "You are not alone."

To make the most of connecting through social media, Stacey Gausling shares, "Have a good working understanding of PH. It can be dangerous to generalise other people's treatments as your own. Also, try not to use it as your sole source of personal support. If you are facing issues in coping that are beyond the scope of a social site, please seek professional advice. Finally, be aware how your words can affect yourself and others."

You can also connect with other PHers online through

PHA's daily online support group chats, specialised email groups, a discussion board or an email mentor. Visit wwwPHAssociation.org/ConnectOnline to start the conversation today.

PAGE FIFTEEN

There's a first time for everything! As a PH patient, there's

that first time when you meet another patient, speak with a long term survivor or find a friend on the same medications as you. Many people will experience one of more of these at their first support group meeting.

Patients enter their first support group meeting with

vastly different emotions. Some are excited to finally meet someone with the same disease, others are scared, and a few might feel like a fish out of water if the other members are in a different age group or on different medications. Read on as four patients share their first experiences at support group meetings.

Patient 1 "Before my first meeting I was confused and overwhelmed. It was a relief to me to find out other people had caregivers. I had really been feeling guilty about needing help. At my first meeting, when I saw that my husband wasn't the only person who had come along to help, I felt better about my health and needing assistance."

Patient 2 - Support Group Leader "At my first meeting I was uncomfortable because I'm the youngest in my group. But I get so much information from our group's guest speakers and the wisdom from the others that not only did I keep going back, I offered to step up and be the new leader.

I was worried that they wouldn't accept or respect me

much because I was the 'newbie', but they have been so incredibly supportive. Through my support group I know of a woman who has been living with PH for 17 years, and while she's had some really difficult periods, she is doing great right now and still going strong".

Patient 3 "The other people in the group made it very welcoming. I have a great support group with the best group leader! It has been a blessing to be able to have such knowledgeable and, most of all, sweet, kind and loving gals in my group. I am blessed! I never miss a meeting now.

Newly Diagnosed Patient 4 "I found my group the same month I was diagnosed. They made me feel welcome and made me want to keep coming back. I don't know what I would've done without the others who were there for me during the hardest months of my life."

Find PHWA Support Group at www.phwa.info Go to the SUPPORT page and you will find us and all the WA groups you can attend who cater to respiratory diseases. Go to our FB page at facebook.com/pulmonaryhypertenisonwa or go to the back page of this magazine for our contact details. For a broader scope on all WA support groups contact Connect Groups Support Group Association WA,

Support Group Gatherings in Perth Western Australia

PAGE SIXTEEN

Have you had pulmonary hypertension for several years now and are feeling adjusted to your "new normal"? When you see a save the date postcard for a support group meeting in the mail, do you think, "Been there, done that"? Well, you still matter and your participation in support groups is very important. Most support groups could benefit from the participation of one of more "veteran" PH patients - someone like you who has learned tips and tricks for managing your PH through the years. Support group leaders from WA want you to know why you are important. Here are a few of the many reasons why support groups need long term survivors and long term survivors need support groups.

"I have finally learned how to live with PH successfully and not be angry and afraid all the time. I make plans for the future now, which I didn't do for years". "It's still challenging but I have strategies now to cope with just about anything."

PH Patient and PHWA Founder Melissa Dumitru. As of 2016 I am a long term survivor 'thriver' of PH.

"After many years of great highs & lows and over 3 years to be diagnosed correctly. With the right balance of combination therapy I am optomistically stable at this time and making the most of every minute".

Long term survivors inspire newly diagnosed patients

"A new person and his or her family leave the group meeting feeling as though a 100 pound weight has been lifted of their shoulders after meeting someone thriving with the diagnosis of PH for more than 17 years," says a support group leader. "Long term survivors, or as they say 'thrivers', are invaluable." Long term survivors provide great encouragement and hope to someone trying to come to terms with the reality of a PH diagnosis.

The knowledge that long term survivors have acquired is invaluable for others to learn

Long term survivors are an integral part of the meeting. The knowledge many possess is priceless, in addition to the encouragement and hope they provide. It would hurt our support group if we didn't have the long term survivors. We have many newly diagnosed patients, and they have many questions, and some I can answer if they are in my experience and some I can refer to others who are more than happy to share," says Melissa PHWA support group leader. "This goes for PH and patients with other respiratory and lung diseases as we have a valuable WA Network that is working for its patients all year.

Long term survivors still need support, and they can find that support from one another

As another support group leader says "About 80% of each group that I lead of consists of what we consider long term survivors. I feel that their presence at meetings is what keeps us going long enough to be long term survivors - they give others strength."

Connection with others who are living with PH whether newly diagnosed or veterans of the disease can be inspiring at any stage of the PH journey.

When long term survivors don't come to support groups, their absence leaves a noticeable hole

"Unfortunately, a lot of long term survivors do not come to meetings. The newly diagnosed patients need to meet them. It gives them hope. Every voice in the PH journey is important. We need your support too.

Ultimately, long term survivors provide hope for the PH community

"We have all been newbie's at one time, meeting long term survivors is very important...they give you HOPE, and they teach you how NOT to give up."

If you are a long term survivor who has not been to a support group meeting recently, consider getting involved again. You are extremely important to our community of hope. Find a support group in your area by visiting www.phwa.info/support/supportgroupswa or contact us directly our details are on the back page of this magazine.

Coping with PH Over the Long Term

PHWA & PHA USA have resources to help you deal with the emotional, social and spiritual aspects of having pulmonary hypertension as a long term survivor.

Visit: www.phwa.info/education/living&copingwithPH or www.PHAssociation.org/CopingLongTerm

PAGE SEVENTEEN

Study Finds Insufficient Evidence for Anticoagulation Therapy in Patients with Pulmonary Arterial Hypertension (PAH)

Written by Phyllis Hanlon, Independent Journalist - Original Source PHA USA January 2016

Clinicians have long used warfarin (Coumadin) as one of several approaches to treating idiopathic pulmonary arterial hypertension (IPAH), in spite of limited evidence of its effectiveness. Moreover, there is lack of data on the effects of anticoagulation in other forms of PAH, such as scleroderma-associated PAH (SSc-PAH). To better understand how well this treatment works, Ioana R. Preston, MD, and colleagues conducted a study, and published their findings in the December 22, 2015, issue of Circulation.

Based on data collected from the Registry to Evaluate Early and Long-Term PAH Disease Management (REVEAL), the authors assessed survival rates for two categories of patients: those with IPAH and those with SSc-PAH. Subjects were matched on warfarin use, type of diagnosis, and recruiting site. Unlike similar studies, this one closely examined patients who had not previously taken warfarin and did not factor in the time between diagnosis and initiation of Coumadin.

Upon completion of the study, the authors reported that many subjects stopped taking Coumadin, which they interpreted as poor tolerance to the medication. In patients with IPAH and SSc-PAH who initiated warfarin while in the study, there was no survival benefit given by warfarin. Moreover, SSc-PAH patients seemed to do worse if they were started on warfarin. These factors prompted the authors to determine that use of warfarin in IPAH and/or SSc-PAH patients did not show a significant survival advantage and that in SSc-PAH patients, anticoagulation may even be harmful.

These findings differed from eight 10-year-old observational studies, six of which were positive for IPAH patients with long-term Coumadin use. To complicate the picture further, the European database Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension (COMPERA) reported a substantial decrease in mortality rates for patients with IPAH, although results were not necessarily attributed to the use of Coumadin. Survival rates for patients with SSc-PAH were not favourable.

In response to Dr. Preston’s study, Robert P. Frantz, MD, of the Mayo Clinic College of Medicine, suggested that any consideration of warfarin use in IPAH patients should include discussions around the extent of clotting and how it might cause worsening of the disease. Patients who take Coumadin must have routine blood draws to ensure they are receiving an appropriate dose, which complicates the disease management process. Dr. Frantz pointed out that, in addition to monitoring dosage, clinicians should pay careful attention to drug interactions and potential liver damage. He urged caution when using this therapy in SSc-PAH patients, who are prone to gastrointestinal bleeding and at risk of cerebral haemorrhage.

Dr. Frantz’s main message focused on individualized treatment based on the best available clinical data and ongoing research. Since several effective treatment options for PAH currently exist, the use of warfarin in this disease raised several important questions regarding its place in therapy.

PAGE EIGHTEEN

The Lowdown On Pulmonary Hypertension

What is pulmonary hypertension, and how is

it different from hypertension? Hypertension refers to high blood pressure in the arteries that deliver blood throughout the body, meaning that the force of the blood pushing against artery walls is higher than what is considered normal. Hypertension usually has no symptoms, but it can increase the risk of stroke, heart attack, heart failure and kidney failure. If the high blood pressure has no identifiable cause, it is called primary hypertension. If a cause can be identified, for example, medical conditions such as kidney problems or medications such as birth control pills, and then it is known as secondary hypertension.

Pulmonary hypertension, which is also known as pulmonary arterial hypertension, refers to high blood pressure in the arteries in the lungs. In pulmonary hypertension, blood vessels that carry blood to the lungs from the heart harden and narrow. As a result, the heart needs to work harder, and it weakens over time. This can lead to heart failure.

While hypertension is often referred to as the silent killer because often it exhibits no symptoms, pulmonary hypertension typically does have symptoms. Symptoms of pulmonary hypertension include shortness of breath during routine activities such as climbing two flights of stairs, tiredness, chest pain, a racing heartbeat, pain on the upper right side of the abdomen and decreased appetite. As pulmonary hypertension worsens, it can become more difficult to do physical activities.

Diagnosing pulmonary hypertension is a bit more involved than diagnosing hypertension. Most people are familiar with getting their blood pressure taken with a cuff around the upper arm. Hypertension is diagnosed with that. In contrast, diagnosing pulmonary hypertension involves reviewing medical and family histories, a physical exam and diagnostic tests and procedures. The diagnostic tests and procedures are used to confirm the diagnosis, identify the underlying cause and find out the severity of the disease. Tests such as echocardiography, an electrocardiogram (EKG) or a chest X-ray are used to confirm a diagnosis.

Procedures such as a chest CT scan, a chest MRI, lung function tests, polysomnogram (PSG), lung ventilation/perfusion (VQ) scan and blood tests are used to identify the underlying cause. Many tests are needed because there are many possible causes of pulmonary hypertension. To determine the severity of pulmonary hypertension, a person undergoes exercise testing, such as the six-minute walk test.

Pulmonary hypertension is a serious condition, and unfortunately it cannot be cured. Instead, treatments, including lifestyle changes, are used to manage symptoms and to treat underlying causes such as heart or lung disease. Treatment depends on the underlying cause and severity of the disease.

Elise Eller is a volunteer at the Grillo Health Information Centre, which offers free and confidential research to help improve health decisions. If you have a health question, please contact the Grillo Centre in person at 4715 Arapahoe Ave., by phone at 720-854-7293 or online at grillocenter.org. No research or assistance should be interpreted as medical advice. We encourage informed consultation with your health care provider.

Original Source PHA USA January 2016

PAGE NINTEEN

PHWA at your fingertips

Pulmonary Hypertension Western Australia Home Base: 144 Hellfire Drive, Darch WA 6065 T: 08 9302 3078 - M: 041 893 0291 E: pulmonaryhypertensionwa@gmail.com FB: facebook.com/pulmonaryhypertenisonwa W: www.phwa.info

Lung Health Support Groups in WA All affiliated with Lung Foundation Australia - www.lungfoundation.com.au

NAME OF GROUP CONTACT PERSON - TELEPHONE & EMAIL TYPE OF GROUP Lung Information & Friendship for

Everyone (LIFE) Support Group

Jenni Ibrahim - Coordinator 9382 4678 - life@resphealth.uwa.edu.au (Facebook)

All Respiratory Diseases

Pulmonary Hypertension Western Australia (PHWA) Support & Information Team

Melissa Dumitru - Coordinator & Patient Educator 041 893 0291 - 9302 3078 - www.phwa.info pulmonaryhypertensionwa@gmail.com (Facebook)

PAH/PH PH related diseases Transplant/Rare disease

Altone Improvers Roberta T: 9297 4779 M: 0410 155 717 E: rubymurray@bigpond.com

Respiratory

Bentley Bronchiatrix

Anne T: 9451 4676 E: abbg@ozemail.com.au

Mike - 9359 2025 E: mikebank@conceptual.net.au

Respiratory

Rockingham Respiratory Support

Jan - 9528 2965 janthair@yahoo.com

Respiratory

Heavy Breathers - Midland Walkers! Bernice & Greg - 0418 415 200 - 9250 7006 heavybreathers@outlook.com

Respiratory

Huffers & Puffers Meets at RPH, contact Sandra, Respiratory Educator T 9224 2903 E sandra.daly@health.wa.gov.au

Respiratory

Northern Easy Breathers Support Group Meets Heathridge Leisure Centre, Contact John M: 0412 017 789 E: john.neale43@gmail.com

Respiratory

South West Impaired Lungs Support (SWILS)

E: imaginegriffiths@bigpond.com Janelle & Barry M: 0429 631 559 E: imaginegriffiths@bigpond.com

Respiratory

Wheat belt Wheezers

Yarraly Midwest Group - Geraldton

Rockingham Respiratory Support

Australian Online Groups

Search for group at groups.yahoo.com

Contact Colin Easther 0468 452 962 avoncopd@gmail.com

Contact Michelle T: 0432 580 613 E: yarraly@yahoo.com.au Facebook

Contact Jan T: 9528 2965 E: janthair@yahoo.com (Use free Yahoo email account) Lungaroos (Aus & NZ)

Bronchiectasis, Alpha 1 Antitrypsin Deficiency, Ozlung

Respiratory Respiratory

Respiratory Respiratory Online

Useful Useful ContactsContacts

NAME OF ORGANISATION CONTACT DETAILS Carers WA T: 1300 227 377 - www.carerswa.asn.au Arthritis Osteoporosis Foundation WA T: 9388 2199 - www.arthritiswa.org.au - Scleroderma Support Group Health Consumer Council T: 9221 3422 - Freecall: 1800 620 780

E: info@hconc.org.au - W: www.hconc.org.au Lung Foundation Australia T: Toll Free 1800 654 301 - www.lungfoundation.com.au Silver Chain T: 9242 0242 - Country - 1300 650 803 - E: clientliaison@silverchain.org.au Connect Groups Support Group Assoc. T: 08 9364 6909 W: www.connectgroups.org.au/ - Facebook

Disclaimer & Advertising Policy Statement

Products and services advertised in PHan Mail magazine are not necessarily recommended by PHWA. Some readers may assume that anything that is advertised in these pages has been cleared, vetted or in some way approved by the organisation. This is not so in some instances. PHWA is not equipped to test and approve products and services that are available to the general public. Please exercise your own judgement about whether the item, service or information advertised is likely to help you personally and, where appropriate, obtain professional advice from your doctor or specialist. The information contained in PHan Mail magazine is provided in good faith and believed to be reliable and accurate at the time of publication. However, the information is provided on the basis that a reader will be solely responsible for making their own assessment of the information and its accuracy and usefulness. PHWA will be in no way liable, in negligence whatsoever, for any loss sustained or incurred by anyone relying on the information, even if such information is or turns out to be wrong, incomplete, out of date or misleading. We act as an information and support team only. Our logo, slogans & articles cannot be used without prior permission.

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