PHan Mail - PHNA

"PHan Mail" Pulmonary Hypertension Western Australia

Support & Information Team

Summer (February) 2013 - 1st Quarter - Edition 10

"It's Breath Taking"

What's inside this issue

Cover Story.........................................1 Birthday Club......................................2 The Hype ............................................2 Medic Alert.........................................2 Recipe for Health................................3 Notice Board......................................3 Donations.............................................3 Fundraising..........................................3 Meetings & Events Calender ..............3 Special Feature...................................4 Special Feature...................................5 Phocus...................................................6 Health Matters...................................7 Education & Awareness......................8 Special Project...................................9 PHWA in pictures.............................10 PHenomenal Lives.............................11 International News...........................12 Breath of Fresh Air............................13 Conversations in Care Giving...........14 Caregiver Shout-Out!........................14 Resources, Research & Reads............15 An apple a Day! .............................16 News from the Network...................17 Community Classroom.....................18 Family & Youth PHocus....................19 Useful Contacts ...............................20 PHWA at your fingertips..................20 Support Groups................................20 Disclaimer.........................................20

Proudly Supported By

Dependable Laundry Solutions Arthritis Foundation WA Lung Foundation Australia Guardian Pharmacy Landsdale

Business Foundations Carers WA

In late September 2012, the Robyn Barst Paediatric Pulmonary Hypertension Research and Mentoring Fund reached its stage-1 fundraising goal of $1,000,000 to begin awarding grants. This is the world's first research and mentoring fund established to support paediatric research in PH. Named for Dr. Robyn Barst, a pioneer in the field of PH who provided the gifts to launch this research fund, the Robyn Barst Paediatric PH Research and Mentoring Fund will provide grant opportunities that include both clinical research and patient care components. The fund is intended to provide young physicians with mentoring to develop clinical research skills as well as appropriate role models for patient care. Young physicians will be mentored by established paediatric PH physicians in PH centres.

Participating physicians will be trained on how to take care of children, and they will also be trained in clinical drug development intended to improve survival as well as quality of life. "It takes a lot of exposure," says Dr. Barst, since treatments and available drugs can change and vary rapidly over time. Clinicians and researchers must spend considerable time studying and treating the disease firsthand to reach conclusive findings regarding diagnosis and management. Dr. Barst has seen, and often been the catalyst of, advances in the field of PH. PH treatment options have increased since the beginning of her career when the sole option was heart-lung transplantation. Now patients can be managed on one of nine FDA-approved therapies.

Continued on page 9 >

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"THE HYPE"

from your chairperson Melissa Dumitru

Hello everybody and Happy New Year 2013, here's to a healthy, productive & enjoyable year for us all. I hope everyone had a safe and enjoyable festive season and a good rest ready for the year ahead. PHWA enters its third year now and we have many plans in the pipeline. A joint "special project" with Coordinator Jenni Ibrahim from the LIFE support group on a Pulmonary Pack for patients in WA is in its early stages. The newsletter will be expanding its pages and going quarterly and the first educational seminar for the year will be hosted by the Arthritis Foundation featuring Pulmonary Hypertension and Scleroderma in March of this year. It will be an all day event on a Saturday in late March that will include guest speakers, stall holders from various medical and health organisations and much more. We hope you will give your full support to this valuable event. I will keep you posted on the details so you don't miss out.

Our support group Christmas party was a wonderful occasion again with a room packed full of members, carer's, friends, volunteers and medical professionals. Our Christmas raffle was a huge success raising over $2000.00 along with our Santa Stall. These funds will go a long way to the continued running or our association. A special thank you to the Mitchell family whose tireless efforts went a long way in organising the tickets for sale and the wonderful raffle prizes, two of which came from their own family members. Your generosity of spirit is valued and most appreciated. We all had a wonderful time and it was great to see everyone enjoying themselves and each other.

Although many of us face challenges that may keep us from living the lives we hoped for I have found that you usually find a way to achieve what is most important. By all pulling together and supporting one another we have found a way to achieve so much through our group and have learned so much about our disease and many other valuable things. We have also gotten to know each other and built friendships that are valued and cherished. It is my hope for our team, our members and our extended sister groups that we all achieve great success in all that we do, all that we are and all that we hope to be in 2013. Happy days & blessings from the PHWA team.

ARE YOU PREPARED IF AN EMERGENCY ARISES? Do you have a "Medic Alert" bracelet? We strongly urge all PH/PAH patients to have some form of medical I.D on them at all times. If you do not have medic alert

jewellery, speak with your PH Doctor about what should be inscribed on the jewellery if an unforseen event occurs. There are medic alert application forms

available from GP or at http://www.medicalert.com.au - If you are on IV medication (continuous infusion such as Flolan via a Hickman line) you may want to

consider carrying a letter with you from your PH Doctor that can be given to emergency services or the hospital emergency triage nurse. If you have an

iPhone/Smartphone you can put a free application called ICE (in case of emergency) in your mobile phone, which stores all your important medical information.

You may also like to keep a credit card sized ICE I.D card in your purse or wallet.

"ITS YOUR BIRTHDAY"

FEBRUARY

Wendy Lunt, Donna Blaxill, Ann Cutler

Linda Franklin, Marlene Mitchell

MARCH

Mimma Versace, Brian Anderson, Dawn Bartley

APRIL

Christine Clarke, Viviane Boekelman, Pat Baker

QUOTE "Find happiness in ordinary things, and keep your sense of humour". (Boyd K. Packer)

- Page 2 -

Ingredients (serves 4)

400gm washed potatoes, peeled, cut

into 3cm pieces

1 tablespoon olive oil

80gm baby spinach leaves

4 eggs

2 egg whites

1 garlic clove, crushed

Salt & freshly ground pepper

Method

Cook the potato in a large saucepan of salted boiling water for 7-8

minutes or until tender. Drain well.

Heat oil in a 20cm diameter (base measurement) non-stick frying

pan over medium high heat. Add the potato and cook, stirring

occasionally, for 5-6 minutes or until golden, reduce heat to

medium.

Add the baby spinach leaves and cook, stirring occasionally, for 2

minutes or until spinach wilts. Preheat grill on high. Whisk

together the eggs, egg whites and garlic in a medium jug. Season

with salt and pepper.

Pour the egg mixture into the pan. Cook for 4-5 minutes or until

frittata is set around the edge but still runny in the centre. Cook

under preheated grill for 3-4 minutes or until golden brown and

just set. Cut into wedges to serve.

(Recipe courtesy of Central City Medical Centre Health News)

NOTICE BOARD

DONATIONS: Jennifer Cooke, Joyce Willis, Annie Cramp, Wendy Lunt, June & Andrew Violettis,

Anne Wilding, Joan Fielding, Len Mitchell.

FUNDRAISING: Christmas Raffle 2012 & Santa Cake & Craft Stall raised over $2000.00.

THANK YOU'S & SHOUT OUT'S: Wyllie Arthritis Centre who generously donate their function room to us

for each meeting. This is invaluable to us and we are very grateful. PHWA Sponsor Gabrielle Worthington!

She is very generously sponsoring us for the PH/PAH support group newsletters to be printed along with various

other administration materials we use. We are so grateful to Gabrielle and her team at Dependable Laundry

Solutions in Welshpool. This makes a big difference in allowing us to continue to provide PH/PAH patients,

staff and supporters with up to date informative and educational material. Tony Beard Business Foundations

who advises & guides us on our future planning and our Volunteers who work tirelessly to support our team and

its members, we greatly appreciate your assistance and kindness.

SUPPORT GROUP MEETINGS - PHWA: Please advise if transport is needed we'll do our best. Monday's - 11.00am - 2.00pm registration 10.45 - catered lunch $10.00pp (please advise dietary needs).

Dates: February 11th, April 22nd, July 8th, September 2nd, November 4th & December 9th Christmas Party!

SEMINARS AND EDUCATION SESSIONS FOR 2013:

Proposed education day for March 23rd on PH/PAH & Scleroderma, Proposed Lung Education Day May 15th

LFA. SPECIAL EVENTS FOR 2013: PHWA Mothers Day Raffle, Pulmonary Pack Launch.

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Continued >

The list of targets is endless - the flu, hepatitis B, whooping cough, malaria and cholera to name a few. The plan would be to use a pro-biotic drink or yoghurt with helicobacter infused with viruses to stimulate the immune system and produce antibiodies to any number of diseases, while causing no harm. As trial of 30 patients at Sir Charles Gairdner Hospital, which tested five strains of helicobacter, showed they had no major ill-effects on the stomach while producing a strong immune response.

HPS2 was considered the pick of the bunch and researchers now want another 24 volunteers to use it to give them the final tick-off in to its safety and effectiveness. First cab off the rank for the vaccine trial is likely to be the flu virus, which could not only help deliver quick and cheap vaccinations but has a potential global market of about $4 billion a year.

But Professor Barry Marshall also has a radical theory the bacteria could play an important role in helping people with immune problems, posibly preventing allergies and asthma in children. "It is based on the so-called hygiene hypothesis that argues children in developed countries are not exposed to enough germs to help thier immune sysstems develop properly. When kids spend time outside and around dirt it seems to give them some protection and that's why kids in developing countries might have higher rates of infections but interestingly have little or no allergies and asthma," Professor Marshall said.

"What we're seeing in the 21st century is more people having immune systems that are hyperactive, so we're seeing more of things like peanut allergies, particularly in children. The allergy clinic at Princess Margaret Hospital is seeing large numbers of children who are developing allergies from an early age, and one theory is that helicobater pylori could actually help to prevent things like allergies, infact eczema and asthma."

Continued page 5 >

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Professor Marshall said helicobacter was once "common as dirt" and almost everyone carried low levels of it a century ago before that dropped back to about 30-40%. Now he estimated it was as low as 15% of the population. He believed it was possible to harness the upside of his favoured strain to "dampen down" hyperactive immune systems linked to allergies and asthma. He says animal studies in conjunction with the Telethon Institute for Child Health Research had added some weight to the theory after finding mice infected with helicobacter were less likely to develop asthma. "The mechanism and association seem to be there, so we just have to do the hard stuff now and take it to the next level," he said.

Cathy O'Leary - Comment

Fleetingly I was a research guinea pig - known as patient 016 - after enlisting in a trial to test the side effects from a strain of bacteria. If all went well, I would swallow a concoction infected with a bug in much the same way as a famous Perth research tested a theory 30 years earlier about what caused stomach ulcers. Despite facing a fairly gruelling schedule of tests, I felt safe in the Nobel Prize winning hands of that same researcher, Professor Barry Marshall. The reimbursement was never the attraction but I did a double take when I read the patient notes and saw it totalled more than $2000.00. But it became a mute point after I was politely kicked out, deemed ineligible by and infection I never knew I had. Others would have to help Professor Marshall enter the next stage of his groundbreaking research into his famous helicobacter pylori. I had seemed to fit the bill until Sir Charles Gairdner Hospital clinical trials coordinator Jim Blanchard tested my blood. I had previously had helicobacter and developed antibodies. Apparently people often do not know they had the bug but took antibiotics for an unrelated infection and the "collateral damage" was that the helicobacter was wiped out too. I could not continue with the trial because my antibodies would resist any infection the researchers tried to give me. So I was off the hook to swallow the broth and have more tests, leaving me a little relieved but also disappointed. So far nine volunteers have passed the test, including doctors and students, but they need 24. Volunteers can call 0488 159 419 for enquiries.

Story courtesy of The West Australian newspaper with permission from Professor Barry Marshall

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PH CUS

About Remodulin

Remodulin is a type of medication called a prostacyclin anoalog that is used to treat pulmonary arterial hypertension (PAH). Prostacyclin is one of three important substances in the body that are known to play a role in PAH. In a person with PAH, levels of prostacyclin can be lower than normal, causing the pulmonary arteries to constrict or become narrow. This causes the blood pressure in the lungs to rise and puts stress on the heart as it tries to pump blood through the narrow arteries. Remodulin acts similarly to the natural prostacyclin that is found in the body, helping to keep the pulmonary arteries open and working properly so there is less stress on the heart.

Chemically Stable Prostacyclin

The first therapies introduced specifically to treat PAH focused on replacing low levels of prostacyclin in the body. Since its introduction, prostacyclin therapy has been shown to be effective in opening up (dilating) the pulmonary arteries and helping with the symptoms of PAH. The challenge has been that native prostacyclin - the prostacyclin that occurs naturally in the body and synthetic prostacyclin break down rapidly (it has a short half-life) and need to stay cool because it is sensitive to warm temperatures.

Remodulin is a synthetic analog of prostacyclin, which is an altered form of prostacyclin that stays active longer in the body (4-hour half-life) than synthetic prostacyclin. It also minimizes reservoir changes (patients can go up to 72 hours (SC) or 48 hours (IV) before having to change the drug reservoirs), and is stable at temperatures up to 104 F, so there's no need for ice packs.

Remodulin is also the only prostacyclin analog therapy that is approved for delivery by 2 different routes - either via continuous subcutaneous (SC) infusion or continuous intravenous (IV) infusion.

Select Important Safety Information

Chronic intravenous infusions of Remodulin are delivered using an indwelling central venous catheter. This route is associated with the risk of blood stream infections (BSI) and sepsis, which may be fatal. Therefore, continuous subcutaneous infusion is the preferred mode of administration.

The most common side effects of Remodulin included those related to the method of infusion. For subcutaneous infusion, infusion site pain and infusion site reaction (redness and swelling) occurred in the majority of patients. These symptoms were often severe and could lead to treatment with narcotics of discontinuation of Remodulin. For intravenous infusion, line infections, sepsis, arm swelling, tingling sensations, bruising, and pain were most common. General side effects (>5% more than placebo) were diarrhoea, jaw pain, vasodilatation and oedema.

Indication

Remodulin is a prostacyclin vasodilator indicated for the treatment of pulmonary arterial hypertension (PAH (WHO Group 1) to diminish symptoms associated with exercise. Studies establishing effectiveness included patients with NYHA Function Class 11-1v symptoms and etiologies of idiopathic or heritable PAH (58%), PAH associated with congenital systemic to pulmonary shunts (23%), or PAH associated with connective tissue diseases (19%). It may be administered as a continuous subcutaneous infusion or continuous intravenous infusion; however, because of the risks associated with chronic indwelling central venous catheters, including serious blood stream infections, continuous infusion should be reserved for patients who are intolerant of the subcutaneous route, or in whom these risks are considered warranted. In patients with PAH requiring transition from Flolan (epoprostenol sodium), Remodulin is indicated to diminish the rate of clinical deterioration. The risks and benefits of each drug should be carefully considered prior to transition.

Important Safety Information for Remodulin

Chronic intravenous infusions of Remodulin are delivered using an indwelling central venous catheter. This route is associated with the risk of blood stream infections (BSI) and sepsis, which may be fatal. Therefore, continuous subcutaneous infusion is the preferred mode of administration.

Remodulin should be used only by clinicians experienced in the diagnosis and treatment of PAH. Remodulin is a potent pulmonary and systemic vasodilator. It lowers blood pressure, which may be further lowered by other drugs that also reduce blood pressure. Remodulin inhibits platelet aggregation and therefore, may increase the risk of bleeding, particularly in patients on anticoagulants. Remodulin dosage adjustment may be necessary if inhibitors or inducers of CYP2C8 are added or withdrawn.

Initiation of Remodulin must be performed in a setting with adequate personnel and equipment for physiological monitoring and emergency care. Therapy with Remodulin may be used for prolonged periods, and the patient's ability to administer Remodulin and care for an infusion system should be carefully considered.

Remodulin dosage should be increased for lack of improvement in, or worsening of, symptoms and it should be decreased for excessive pharmacological effects or for unacceptable infusion site symptoms.

Abrupt withdrawal or sudden large reductions in dosage of Remodulin may result in worsening of PAH symptoms and should be avoided. Caution should be used in patients with hepatic or renal insufficiency.

The most common side effects of Remodulin included those related to the method of infusion. For subcutaneous infusion, infusion site pain and infusion site reaction (redness & swelling) occurred in the majority of patients. These symptoms were often severe and could lead to treatment with narcotics or discontinuation of Remodulin. For intravenous infusion, line infections, sepsis, arm swelling, tingling sensations, bruising, and pain were most common. General side effects (>5% more than placebo) were diarrhoea, jaw pain, vasodilatation, and oedema.

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Recently, Silver Chain Group was asked to give evidence in Adelaide to the Senate Standing Committee on Community Affairs, Inquiry into Palliative Care in Australia.

"This was a welcome opportunity for us to further support our submission to the Senate Committee", says Mark Cockayne, Silver Chain's General Manager Health & Director Hospice Care Service. "We were able to provide an overview of the way in which we provide palliative care to people at home, with a focus on what we believe are the real enablers of the service (such as our partnership with General Practitioners within our team) and the outcomes achieved by the service which makes it a best practice model of care across Australia.

"As a national organisation, we provide a diverse range of services to people living in metropolitan, rural and remote areas and our Hospice Care Service in Western Australia is one of Australia's largest providers of specialist community palliative care services," says Mark. Silver Chain's Hospice Care Service is provided throughout the Perth metropolitan area. Each year, approximately 3,000 people are admitted on any given day.

"Sixty% of people who are admitted to our Hospice Care Service are supported to die at home", Mark continues. "This is compared to the national average of 25-30%. "All Australians should be able to expect to die with dignity and have as much control as possible over the circumstances of their death including being with the people they wish to be present and whenever possible, in the place of their choice.

"It is widely believed that 70-75% of people want to be cared for and die at home - yet most will die in in-patient facilities across Australia," says Mark. Silver Chain looks forward to the Senate Committee's findings and is grateful to have been considered as part of the decision making process. If you would like to find out more about the inquiry please visit www.aph.gov.au.

Story courtesy of Silver Chain Link Newsletter

I have bronchiectasis and I would like to know whether salt therapy, i.e. attending a salt room and breathing in salt will make a difference to my breathing problems? I have heard that this may give relief to people suffering from respiratory diseases. There is no evidence that salt therapy or salt rooms will improve lung health and, in fact, there are concerns about the possibility of the warm, moist environment in these salt rooms providing opportunity for the growth of various other bacteria of concern. In addition, salt can irritate the airways. However, the idea of inhaling salty water (hypertonic saline) is certainly a valid one, and although there is no good evidence in bronchiectasis, it can be useful in selected patients. You should discuss the suitability of this treatment with your treating physician.

This response has been provided by a respiratory physician.

I am on oxygen and I find that my nose becomes very dry. I also experience discomfort behind my ears from the tubing. Is there anything that will help?

There are a number of strategies you can use to help alleviate these problems: Apply a water based lubricant or a sesame seed oil spray

called Nozoil, to just inside the nostrils two to three times a day. These products are available from most pharmacies. Paw Paw ointment is also very effective.

Do NOT use petroleum jelly (eg: Vaseline) or petroleum based lubricants with nasal prongs, as they may be

flammable and may irritate the lining of your nose. These products may also cause the nasal prongs to deteriorate. Some oxygen suppliers may have a different shaped nasal

prong you could try. Ask your healthcare team if there is an alternative to nasal

prongs that you could use during the day. If you are having trouble with rubbing behind the ears or

on the cheeks, use soft foam pads (available from your oxygen supplier), or use cotton wool or gauze (available at a pharmacy) to wrap around the tubing.

This information was taken from the Lung Foundation's resource, Getting Started on Home Oxygen. You can download a copy of this booklet from our website http://www.lungfoundation.com.au/lung-information/patient -educational-material/getting-started-on-home-oxygen or order a hard copy by calling our Information and Support Centre on 1800 654 301.

We invite you to submit your question to our panel of health professionals by emailing it to: [email protected] or posting it to: The Australian Lung Foundation, PO Box 847, Lutwyche, Qld, 4030 and we will do our best to include it.

Article courtesy of Australian Lung Foundation Lungnet News

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Continued from cover story >

Despite this, however, the management of paediatric PH remain limited with no FDA-approved treatments for children. "Children are not small adults," Dr. Barst explains, and should not be treated in the same way as adults. "Their response to drugs can be somewhat different. Dosing is different. Side effects are different." The common process of prescribing lower doses of adult medications may not necessarily be the best treatment method for children. When establishing the fund's goals, Dr. Barst insisted that she did not intend to raise money that would be completely dispersed and depleted within a year. She wanted to create a long lasting and hopefully life changing endowment-like fund to improve overall quality of life and improve outcomes. "I made it clear that this was to be an endowment-like fund. We want to be able to train physicians and, at the same time, do research and maintain a body of funds so we can do this for many years to come," states Dr. Barst. She hopes that such extensive first-hand involvement will help expand the number of PH paediatric experts.

When the Robyn Barst Paediatric Pulmonary Hypertension Research and Mentoring Fund recently reached $1,000,000, it was activated. Its next stage will be to move to $3,000,000 when it will be able to offer more robust grants. The fund will maintain a $1,000,000 minimum balance. It is also receiving global recognition and recently received generous gifts from PHA's sister organisations, PHA Europe and PHA Korea. PHA is proud to launch this fund to better understand paediatric PH. Awarding will begin in 2013. More information about Dr. Barst and the Robyn Barst Paediatric Pulmonary Hypertension Research and Mentoring Fund can be found at www.PHAssociation.org/BarstFund. View a video about Dr. Barst's commitment to advancing care for paediatric PH patients, the development of the first PH treatment and the advancement of the understanding of the disease at www.PHAOnlineUniv.org/PHTrailBlazer-RobynBarstMD. Read our "Meet the Doctor" interview with Dr. Barst in the next edition of "Phan Mail".

Article courtesy of Pathlight - PHA USA

Carers WA are dedicated to improving the lives of the estimated 310,000 family carers living in Western Australia. As the peak body recognised by both State and Federal governments, Carers WA represents Carers interests in the Western Australian Community and part of our role is to work in active partnership with you. Our orientation sessions are an opportunity for you to learn more about Carers WA services and how we can work together to support carers.

WHEN: Thursday 21st February 2013 9.00am - 9.30am registration Commences 9.30am - 12.30pm WHERE: The Carer Centre 182 Lord Street, Perth COST: FREE - also includes morning tea

If you have any special dietary requirements, please inform Carers WA when registering for events.

Please call 1300 CARERS (1300 227 377) or email: [email protected] to register.

www.carerswa.asn.au

"We care because you do"

QUOTE

"It's not what you look at that matters, it's what you see". (Henry David Thoreau)

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PHWA Christmas party 2012 was celebrated by over 50 members, carers, families, volunteers & medical professionals. A great time was had by all with a wonderful feast of Christmas fare, raffles, Santa bake & craft stall, spot raffles and prizes galore! We hope you enjoy looking at some of the pictures below of this very special occasion.

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Article courtesy Pathlight - PHA USA

QUOTE

Khalil Giran wrote, "Out of suffering have emerged the strongest souls, the most massive characters are seared with scars!"

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Article courtesy Pathlight Winter 2013 - PHA USA

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Courtesy of Link - Summer Edition 12 - Silver Chain

Carer Counselling & Support

Carers WA offer free telephone counselling on 1800 007 332 for you to call when you need to talk things over with

someone who is not directly involved in your situation. The Counsellors at Carers WA are non-judgemental and

respect that you know your circumstances best. They do not give direct advice; however, they can assist you to

develop new strategies for coping with carer-related difficulties through problem solving, encouragement and

insight. Carers WA also offer low cost face to face counselling - [email protected] for those who prefer to put

it in writing. Fees for face to face counselling can be waived, dependent on your financial situation.

Need Advice?

The Carers WA advisory team is there to provide you with assistance or advice on many different caring issues. If

you are feeling overwhelmed with the services available to you, we may be able to help you filter through your

options or point you in the right direction for getting a problem solved. Contact our friendly advisory team on 1300

227 377 (1300 CARERS).

Helping to ensure carers know what's happening when the person they care for is in the hospital

After consultation, the WA Department of Health recently updated their Clinical Handover Policy. "Clinical

handover is the transfer of professional responsibility and accountability for some or all aspects of care for a patient

or group of patients, to another person or professional group on a temporary or permanent basis." Accurate sharing

and recording of information during handover is vital to the wellbeing of the patient and is an important opportunity

to involve and inform patients and carers. Carers WA successfully argued that carer involvement was crucial when

a handover from one clinician to another was taking place. The policy now requires that, where practicable,

handovers be conducted in the presence of the carer if the patient has one, and that where practicable, carers be

invited to attend the handover. It has been acknowledged in the policy that the carer's contribution "can be vital". As

a carer of a person in hospital our hospital team advises that you speak to the Shift Coordinator to find out what time

handover is likely to occur so that you can plan to be present if possible or make alternative arrangements for being

included in planning for the care and discharge of the person you provide care to. More information is available

from http://www.safetyandquality.health.wa.gov.au - (Courtesy of Newslink Carers WA)

If you have a story or statement you would like to include in the newsletter on a caregiver please contact the Editor directly to have it included in one of our future editions.

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Here are the top reads for this edition

The Top Five Regrets of the Dying: A Life Transformed by the Dearly Departing Published by: Hay House - $17.95

What We Can Learn

Happiness is a daily choice and it's a moment to moment choice.

We all have our challenges and go through struggles, but there's always an opportunity to find

something beautiful in among all of it. And each time we can do that, we're finding a moment of

happiness when we're in the midst of pain.

The Door

"Ever walk into a room with some purpose in mind, only to completely forget what that purpose

was? Turns out, doors themselves are to blame for these strange memory lapses.

Psychologists at the University of Notre Dame have discovered that passing through a doorway triggers what's known as an event boundary in the mind, separating one set of thoughts and memories from the next.

You brain flies away the thoughts you had in the previous room and prepares a blank slate for the new locale."

It's not ageing, it's the door!

Story courtesy of Silver Chain Link Newsletter

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Make no mistake about it - your body needs H2O - water!

Drinking water is a health habit you can't afford to disregard. But why does your body need water?

Every system in your body depends on water. Your skin tissues need moistening, your body temperature needs regulating, your joints need lubricating, your colon, kidneys and liver need flushing of waste products, and your cells need nutrients carried to them. The minerals and nutrients you eat must be dissolved to make them accessible to your body.

Your body doesn't function as well without a continuous flow of water. There are few liquids that can do what pure water does for your body, so choose your fluids wisely. If you don't like water on its own, find alternatives consisting of mostly water and with few or no empty kilojoules. Milk and juice are composed mostly of water as well as coffee, tea and soft drinks, but these certainly should not be a major portion of your daily total fluid intake. Many fruits and vegetables, such as watermelon and tomatoes, are 90% or more water by weight and can add to your intake as well.

You need water to replace the fluids your body loses through normal everyday functions. You lose water when you urinate, sweat, and even when you exhale. It is necessary to routinely and regularly replace the loss. In our increasingly long and hot Perth summers we lose a lot of water by sweating, even at night. Most experts agree a healthy quantity is eight 250ml glasses on a normal temperate day. But remember, your body will need even more water:

1. In the summertime or when visiting a hot climate 2. When you exercise or are physically active 3. When you have a fever 4. If you experience vomiting or diarrhoea

The US Centres for Disease Control and Prevention recommends:

Carry a water bottle for easy access when you are out and about. Freeze water in some freezer safe water bottles. Take one with you for ice cold water all day

long. Choose water instead of sugar sweetened drinks. This also helps with weight management. One

large 600ml sugar sweetened soft drink will cost you about 2740 calories. Choose water instead of other drinks when eating out. Generally, you will save money and

reduce calories. Give your water a little pizzazz by adding a slice of lime or lemon, or a sprig of fresh mint. This

may improve the taste, and you just might drink more water than you usually do.

References: Centres for Disease Control and Prevention, Mayo Clinic, Cleveland Clinic. Source: www.human-military.com/library/pdf/copd-newsletter-summer-2011.pdf

Article courtesy Breath of Life Newsletter

Editor's comment: If you get a lot of mucus you will find it becomes thicker and much harder to dislodge if you don't drink enough water, so keep up the fluids this summer!

Don't forget to adhere to your fluid restrictions if you have been told by your treating physician to limit your fluid intake, always check with your doctor if in doubt.

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Article courtesy of Pathlight - USA PHA

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Read All About it: Survival Guide Fifth Edition Now Available

The brand new 5th edition of Pulmonary Hypertension: A Patients Survival Guide is now hot off the presses! Called the Survival Guide for short, this book serves as a soup-to-nuts resource covering many of the questions patients and their loved ones might have about living with pulmonary hypertension. The new edition included updates to these chapters:

PH Drugs Children and PH: Babies, Kids, Teens and Family Planning What to eat when you have PH Dealing with emergencies, doctors, colds and flu You're not the only one with the blues The active life: working, exercising, travelling and living Insurance and legal matters (USA) Resources

The PH Drugs chapter has been revamped and separated into three, easier to swallow chapters: PH Drugs: Prostanoids" and "Other PH Drugs" provides details about current drugs that treat PAH, while "More on PH Drugs" covers related topics like participation in clinical trials, combination therapies and new treatment options on the horizon. The book also covers weighty topics like life expectancy, the risks of different treatments, and how PH can sometimes be inherited. There is a dedicated chapter for caregivers, as well as an ever useful glossary of PH terms. Gail Boyer Hayes, the original creator and author of the Survival Guide, wanted to have a resource fellow PH patients could easily grasp. First published in 1998, it was the first book of its kind on PH, a comprehensive and easy to understand resource amidst the complicated medical texts that were available at the time. Updates to the Survival Guide happen annually under the guidance of medical editor Dr. Ron Oudiz, as well as by the many medical professionals and patient volunteers. To order your copy, visit www.PHAssociation.org/OrderSurvivalGuide or call 301-565-3004 Or speak to the Editor of "PHan Mail" about making contact on your behalf. Support Group Member Lesley Allnutt has read the last edition of a Patients Survival Guide from cover to cover and gave it rave reviews, PHWA has their new copy on order.

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Parenting a child or living with someone with PH can feel like riding a roller coaster that you can't get off, enjoying some exhilarating highs while also fearing the long, unexpected drops. It can offer gifts: growing inner strength and wisdom, gaining perspective that directs our attention to the "big things," and the closeness that comes from friends and family. It also offers many challenges, including fear for the future, unexpected hospitalisations, disrupted schedules, and expenses that are financially burdensome. These challenges can lead to conflict between you and your partner, your child, and family, even within the strongest of relationships.

Decide what your roles can and should be. Are there strengths that you each bring that may be perfectly aligned with your child/family members (and your) needs? Are there areas where you struggle, but your significant other is a "natural" and may be willing to take on some tasks?

Be honest. Talk about what the future may hold: for you, your child, your relationship and other members of the family. Assure your significant other that there will be time to share together. Your sick child/family member will not

It is common for two partners to have different parenting and coping styles. In families with a chronically ill child or member, these differences can lead to unspoken tensions and assumptions about acceptance of illness and sharing of responsibilities on both sides. One parent/family member or couple may be primarily focused on the day to day needs of the sick person, while another may focus attention on tangible tasks during difficult times, such as maintaining a job to keep the medical expenses and household accounts up to date. While all are necessary to sustain the stability of the family, the different approaches can lead to conflict.

always require complete, undivided attention (and , face it, even sick people WANT some autonomy), and your relationship(s) with others are critical to your resilience and coping. Your partner knows that already, but it helps to hear you say it. Discuss a standing "date night" or alone time and how it will affect your own life and your family life. You need this time too. Give your partner some examples of how you do what you do. Focus on YOUR strengths. Give them a chance to do the same thing. Remind each other that the qualities that

Similarly, one parent or family member/couple may reach out to family and friends for support, while the other may need time alone to process their feelings and reactions. It is important to know and accept that everyone copes in different ways. As your sick family member progresses, you will

drew you together were likely based on values, priorities and characteristics that can help you manage your family members PH.

Educate your significant other. You both want to know all that you can to help nurture your sick child/family

experience new challenges and needs in relation to his/her PH. Though every family and relationship has its own way of dealing with chronic illness, communication is critical and there are ways to lay a positive foundation when you have these discussions.

member. Help keep you and your partner on the same page with your knowledge of PH and your family's needs.

Be sure that your partner knows what to do in a crisis or when he or she may have important questions. Have your partner come to clinic visits, support groups and related

Try to have "the conversation" when there is NOT a crisis. You can think more clearly when you are not reacting to an immediate concern or need.

Remember, you (as well as your sick family member) are the expert! Even though you know what you need and what to do, and can probably do "it" by yourself, it is often helpful and comforting to have someone else go through events with you. Tell your significant other your reason for including them and what is most important that he or she take away from your conversation. Your knowledge is bound to instil confidence and respect, and honesty is so often rewarded with the support one needs.

Recognise that while you have come to adapt and excel at dealing with the situation, elements of shock, fear, reluctance, grief and distress may still arise in your partner. You likely had some of the same emotions (and maybe even still do) and needed to take time to process them. Your partner may be at a different stage in processing, accepting and coping with your child/family member's diagnosis, particularly if new health concerns develop.

Trust your instincts. If the conversation is not going well - stop! Don't put yourself through the process of being vulnerable without the respect and time it deserves. Return to the discussion when you feel you can, when your partner seems interested (or, better yet, initiates it).

appointments. Attend events together where possible. Familiarise your partner/family with the basics of medications, when to call for help when needed, and what symptoms to look out for and respond to.

Be yourself. Be the advocate you are for your sick child/ family member and that will transcend the boundaries of other relationships in ways that are positive and build respect. It may be a challenging series of discussions, but the benefits that result will be invaluable. You and your sick child/family member will add another "expert" to your base of supporters. You will have a renewed sense of mastery as a parent, a partner and a caregiver.

While there is no guarantee of what the future holds, you do what you can to normalise, champion and survive the impacts of PH with each person in your family. Your ability to sustain yourself through the ups and downs, and balance the routine stressors of life, is admirable and an inspiration to others and the PH community.

Article courtesy Pathlight - PHA USA

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"It's Breathtaking"

Pulmonary Hypertension Western Australia Support & Information Team

Home Base - 144 Hellfire Drive, DARCH WA 6065 Contact - Coordinator Melissa Dumitru

041 893 0291 - 9302 3078 - [email protected]

NAME OF GROUP CONTACT PERSON - TELEPHONE & EMAIL TYPE OF GROUP

LIFE

Support Group

Jenni Ibrahim - Coordinator

9382 4678 - [email protected]

All Respiratory

PHWA

Support & Information Team

Melissa Dumitru - Coordinator

041 893 0291 - 9302 3078

[email protected]

PH/PAH

Respiratory

Orphan Diseases

WASSP - Support & Social Group Margaret Nunn - Convenor

9386 4096 - [email protected]

Scleroderma

Altone Improvers Bill - 9377 0778 Respiratory

Bentley Bronchiatrix Mike - 9359 2025 Respiratory

Rockingham Respiratory Support Jan - 9528 2965 Respiratory

WA Transplant Support Group

The Beat

(Newsletter available also)

Sharon Lawrence - RPH

[email protected]

Transplant

Heart & Lungs

NAME OF ORGANISATION CONTACT DETAILS

Carers WA T: 1300 227 377 - www.carerswa.asn.au

Arthritis Osteoporosis WA T: 9388 2199 - Country: 1800 011 041 - www.arthritiswa.org.au

Health & Disability Services

Complaints Office (HaDSCO)

T: 6551 7600 - T: 6551 7620 - [email protected]

Health Consumer

Council

T: 9221 3422 - Freecall: 1800 620 780

E: [email protected] - W: www.hconc.org.au

Lung Foundation Australia T: Toll Free 1800 654 301 - www.lungfoundation.com.au

Lupus WA RPH - T/F: 9224 3144 - E: [email protected]

Beyond Blue T: 1300 22 4636 - www.beyondblue.org.au

Silver Chain T: 9242 0242 - Country - 1300 650 803 - E: [email protected]

ODAT (Organ Donation &

Transplant Foundation of WA)

T: 9361 2225 - M: 0412 912 929

E: [email protected] - W: www.odatwa.org.au

Donate Life Australia T: 9222 0222 - [email protected]

Commonwealth Respite & Carelink T: 1800 052 222 - www.health.gov.au/ccsd/

Quitline T: 13 78 48 - W: www.quitnow.info.au/

Palliative Care T: 1300 551 704 - www.palliativecarewa.asn.au/

DISCLAIMER

The information contained in PHan Mail newsletter 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. Pulmonary Hypertension Western Australia does not

recommend or endorse any products, drugs, treatments, procedures, medical or health professionals in this newsletter. We suggest you discuss this information with your PH Doctor or General

Practitioner. We act as an information and support team only.

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