WINTER EDITION 2012

"Pulmonary Hypertension Western Australia"

"It's Breathtaking"

PHWA

Support & Information Team

CONTACT

Coordinator

Melissa Dumitru

9302 3078 041 893 0291

meli@westnet.com.au

USEFUL CONTACTS

Scleroderma WA

Arthritis Foundation WA

general@arthritis.org.au

Ph: (08) 9388 2199

Lupus WA

admin@lupuswa.com.au

www.lupuswa.com.au

Ph: 9224 3144

Carers WA

www.wa.carersaustralia.com.au

Ph: 1800 242 636

Depression - Beyond Blue

www.beyondblue.org.au

Ph: 1300 22 4636

Medic Alert Foundation

www.medicalert.com.au/

Ph: 1800 882 222

Pulmonary Hypertension WA

Support & Information Team is

generously supported by:

Dependable Laundry Solutions

Actelion Pharmaceuticals

Business Foundations

Arthritis Foundation of WA

Kimmie & Dorothy our Laughter Yoga Guest

Speakers are presented with thank you gifts

from Team Leader Jan Lucas

Melissa, Linda & Sharyn are the

Joint Coordinator's of PHWA. Melissa and

Linda would like to farewell Sharyn as she

steps down as our newsletter editor & joint

coordinator. She has done an incredible job

and we are so grateful for all

her hard work.

"THANK YOU DEAR PHRIEND"

"THE HYPE"

from your chairperson Melissa Dumitru

Hello everybody and welcome to the Winter 2012 edition of "PHan Mail" our support group newsletter.

This is the first edition with a new editor, I am having a go until some kind soul offers to help me but

until then I will muddle my way through. I have a lot to live up too!!

I would like to take this opportunity to say a huge thank you to our previous Editor and Joint

Coordinator Sharyn Dyson who has now stepped down from this position. Without her incredible vision

and hard work this newsletter would never have been launched. She gave us the great name PHan Mail,

created a logo all of our own and the slogan "It's Breathtaking" to go with it. Such incredible vision and

insight doesn't come easily and I can't thank her enough for her passion, hard work and for giving us

such a great profile along with informative and interesting articles. You will be greatly missed my dear

friend and we wish you every happiness as you pursue your future dreams.

I would like to thank Kimmie and Dorothy from Laughter Yoga who came along to our first meeting of

2012 as our guest speakers. What incredibly inspiring women you are & both with such interesting

stories to share. You had us laughing, literally! As I looked around at the faces of our members during

your session I saw the amazing affect your "therapy" was having on us all and I cannot recommend you

highly enough, we look forward to hearing about Kimmie's trip to Rwanda very soon.

Thank you to Juliet and Jenny from the Australian Lung Foundation who came over in May and held

another Lung Education Day. The three speakers including our own Ambassador Professor Eli Gabbay

were all so informative and interesting and so much was learned that day. It was fantastic to see

everybody from all the different lung support groups attending and networking together.

"CONGRATULATIONS" to the LIFE Support Group (Lung Information & Friendship for Everyone) on

reaching a milestone 20 years of operation. The two amazing coordinators Edna Brown and Jenni Ibrahim

have been reaching patients, carers and families with a multitude of lung diseases with their wonderful

newsletters and monthly meetings for twenty years. We are so grateful to them for their energy and

dedication and wish them and their members the very best as they celebrate this wonderful occasion.

As the newsletter is now in review I would like to take the chance to ask anyone who may be interested

in doing a story on either themselves or a topic that would be interesting and educational or entertaining

to our readers. I am introducing a new segment called "Community Spotlight" on inspirational people who

do things for those with PH or just give in some way to others & the community in general.

Well thank you for reading and spreading the word of PH, I hope you enjoy this new edition and look

forward to sharing with you all again very soon.

Happy Days the Pulmonary Hypertension Team of WA

"I am the master of my destiny. I am the captain of my soul!" Nelson Mandela

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.

My Story

Lesley Allnutt

When I was 16 I used to imagine, along with my friends, about how I would look and where I

would be when the world had its 2000 year millennium. 48 years old seemed to be very old then,

but it came around fast and I spent it at Monkey Mia, all day in the bath warm water and the

sun. NOT A GOOD IDEA. Unknown to me, each day in the sun had triggered my systemic lupus

and the associated clotting. Hundreds of clots were forming in my lungs. They had been quietly

collecting there and solidifying for several months prior. I thought I was just out of condition

because I could not keep up with the other walkers, I thought I was just tired when I used to

fall asleep at evening meals with friends, I thought it was just the usual Lupus problems that

had shadowed my life for over 20 years.

It took about 6 weeks before one very persistent pulmonologist discovered the cause of my

breathlessness. I had seen several doctors, had numerous tests. It was suggested that I was

out of condition - despite being only 56Kg, with 4 children, a full time job at Graylands Hospital,

many friends and a high energy husband and active social lifestyle. It was suggested that I

deep breathe into a paper bag to counteract my dizzy spells. I had reached the point where I

could not walk from my bed to the shower.

Still no specialist knew what was wrong. One thought I had pericarditis, but the biggest and

most dangerous blunder was from the one who should have got it right. The radiologist (I think

that's the specialist who interpreted the lung scans) diagnosed me as having Legionnaires

disease. At this point I was in Fremantle emergency and almost an ex- Lesley. I was being given

antibiotics instead of Warfarin, but luckily Dr Peter Bremner was now in charge. He did not

agree and he sent me for the ultimate lung investigation, which showed hundreds of clots and

more than 40% of each lung completely and permanently blocked.

I did return to work after 3 months because I really like working with psych patients, but my

health was never the same, despite my co-workers treating me like Queen Liz. But as with all of

us my lungs deteriorated and about 3 years ago l I found myself at the PH clinic with Dr

Gabbay, Dr Musk and Nurse Jary. They have taken very good care of me, despite our regular

disagreements due to me always challenging Dr Gabbay even though he is the expert and I am

not. So officially I have pulmonary hypertension, anti phospholipids syndrome and a few other

things all basically caused by systemic lupus. I was spared the major thromboembolic operation

when I got on to the Ambriseten trials.

Well that's not stopping me from going off to England and Europe for 6 weeks this year. So if

any of you want to know about air travel (EMIRATES provide free oxygen) or the best travel

insurance (Alliance is covering me for half the price of anyone else they are the wholesalers of

insurance) just ask me at the next meeting.

NOTICE BOARD

THANK YOU!! Thank you to everyone who has given donations to PHWA in 2012 without your generosity we would not be able to

continue running our valuable support group.

Jennifer Cooke - $200.00

Annie Cramp - $50.00

Thank you to those who so generously donated such great prizes for our Mothers Day 2012 raffle and congratulations to

the winners! Donations came from member Viviane Boekelman, Val Alvins & Wendy Mitchell. A very special thank you to the Wyllie Arthritis Centre who generously donate their function room to us for each meeting.

This is invaluable to us and we are very grateful.

We would like to say a huge thank you to Gabrielle Worthington! She is very generously paying for the PH support group

newsletters to be printed. 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 patients, staff and supporters with up to date

informative and educational material.

Thank you very much to Tony Beard at Business Foundations Rockingham. Tony is our very talented business advisor

and a valuable member of the PH support network.

Thank you to all our volunteers you are so valuable to us and we could not cope as well as we do without your much

needed support at the meetings and behind the scenes.

Do you need a lift to future PH support group meetings?

We all know the strain PH takes on us medically, socially and financially.

We cannot make any promises but if you ring or email Melissa well in advance we will do our best to try to arrange a

Phriend (friend) to pick you up and drop you back home.

Raffles...If you know of a business that may be able to help with a donation of a raffle prize, please speak to us. We

always need funds to forge ahead and make 2012 a year to remember.

ITS YOUR BIRTHDAY

MAY

Janis Lucas, Joyce Willis, Brian Rystenberg,

Jennifer Cooke

JUNE

Lesley Allnut, June Violettis, Sylvia Andrews,

Helen Blanchard, Margaret Anderson, Gabrielle Worthington

JULY

Ann Webster, Alan Mitchell, Jean Gawthorne,

Jim Blanchard

"Community Spotlight"

Hi my name is Anne-Marie McKay, I work at Landsdale Guardian Pharmacy. I became aware of Pulmonary Hypertension through Melissa Dumitru. Melissa has been a valued customer of ours over the past years. My way of supporting Pulmonary Hypertension Western Australia was to put my craft skills to good use and make Melissa a cover for her portable oxygen cylinder. Melissa was having trouble with the cylinder banging around in the portable trolley and was looking for a way to make it more stable. Originally we talked about a scarf wrapped around the bottle. Then I came up with this great idea for a bottle cover. The cover looks much better and I think it suits her lovely personality. Melissa said it makes her feel less medical and more normal. I was excited to see that the cover made her feel so special and glad I could help in such a small way to support her and PHWA. Our Pharmacy has also helped by donating to the silent Christmas Auction & Mother's Day Raffle's held by the support group in 2011/2012. It’s important for a community Pharmacy to support their customers, even in a small way. It gives us a chance to let them know how much they mean to us. Quote:

Be who you are and say what you feel, because those who mind don't matter and those

who matter don't mind!

Some of our gorgeous PHWA members with our guest speakers from Laughter Yoga.

The Lung Foundation of Australia - Lung Education Day May 2012

Guest Speaker Professor Eli Gabbay - PHWA Information Stand & assorted stall holders

Sharyn, Glenda & Annie enjoy the lung education day at our table

Professional stall holders and official sponsors of the event. LIFE support group stand.

Heart Friendly Recipes from Taste.com

BEEF STROGANOFF

A low-fat and low-carbohydrate version of a family

favourite. This beef stroganoff is heart friendly too.

Ingredients (serves 4)

olive oil cooking spray

500g beef fillet, trimmed, cut into thin

strips

1 brown onion, thinly sliced

2 garlic cloves, crushed

250g button mushrooms, sliced

1 teaspoon smoked paprika

3 teaspoons cornflour

1/2 cup salt-reduced chicken stock

1 tablespoon worcestershire sauce

3/4 cup Greek-style yoghurt

1/4 cup flat-leaf parsley leaves, finely

chopped

600g steamed vegetables, to serve.

Method

1. Spray a heavy-based frying pan with oil.

Heat over high heat. Add one third of the

beef. Cook, stirring, for 30 to 60 seconds

or until browned all over. Remove to a

plate. Repeat with oil and remaining beef

in 2 batches.

2. Reduce heat to medium. Spray pan with

oil. Add onion and cook, stirring, for 5

minutes or until soft. Add garlic and

mushrooms. Cook, stirring, for 2 to 3

minutes or until mushrooms are tender.

Stir in paprika and cook for 1 minute.

Combine cornflour, stock and worcestershire

sauce in a small jug. Stir stock mixture into

mushroom mixture. Cook, stirring, until sauce

comes to the boil. Reduce heat to medium-low.

Simmer for 2 minutes. Add yoghurt and cook,

stirring, for 2 minutes (do not boil, as mixture

might spit). Return beef and juices to pan. Stir

until warmed through. Stir in parsley and season

with pepper. Spoon stroganoff onto plates. Serve

with steamed vegetables.

Give a gift from your heart with these beautiful

Coconut Ice Biscuits.

Makes 20

Ingredients

Vegetable oil, to grease

300g (2 cups) pure icing sugar

1/4 tsp cream of tartar

395g can sweetened condensed milk

3 1/2 cups desiccated coconut

6 drops pink food colouring

Cellophane bags, ribbon and labels, to decorate

Method

1. Brush a 30 x 20cm rectangular slice pan with oil, line

with non-stick baking paper.

2. Sift the sugar with cream of tartar into a bowl. Add

condensed milk and coconut and stir well. Place half the

mixture in a separate bowl. Add food colouring to one

bowl and stir well to combine. Press uncoloured mixture

into base of pan, levelling well, then top with pink

mixture, pressing firmly.

3. Refrigerate for 1 hour to set. Cut into rectangles, place in

cellophane bags, tie with ribbon and label.

Taken from Keep Trac newsletter Summer Edition printed by Actelion Pharmaceuticals

PH CUS

"INFLUENZA & OSELTAMIVIR"

In September 2011 there was talk of the H1N1 flu being unresponsive to Tamiflu ® (oseltamivir). Here's more about this issue from the Australian Department of Health & Aging which regularly monitors the patterns of influenza in Australia and elsewhere in the world.

Following uncharacteristically high out of season influenza levels in most Australian states and

territories, the 2011 influenza season started in early June. Over August and early September 2011

influenza notifications peaked and started to decrease in Queensland, NSW & South Australia but

continued to increase in all other states and territories.

Nationally, the majority of virus detections in 2011 have been the pandemic (H1N1) 2009 with co-

circulation of Influenza B, with proportions varying across jurisdictions. High levels of influenza Tup

A/H3N2 seen early in the season have dropped considerably with only Western Australia currently

reporting significant numbers.

More than six percent of positive influenza samples in Australia have been sent to the WHO

Collaboration Centre for Reference and Research on Influenza (WHOCC) for antigenic characterisation.

The vast majority of these were auntigenically similar to strains in the current trivalent influenza

vaccine. The WHOCC also tests isolates for antiviral resistance.

Only one pandemic (H1N1) 2009 virus had tested resistant to oseltamivir (Tamiflu ®) until a cluster of

cases was identified from the Newcastle, NSW region. This cluster consists of 25 people, of whom 6

were hospitalised and three were pregnant. None had been treated with oseltamivir prior to their

positive test for influenza.

A further two oseltamivir-resistant pandemic (H1N1) 2009 viruses sampled in July and August were

found to belong to the Newcastle cluster. These samples were both from untreated, otherwise healthy

children, one from Sydney and the other from Orange. These are the first viruses of the cluster that

have been received by the WHOCC from outside the Hunter New England region. Apparently neither the

children nor their families had travelled recently to the Hunter New England area.

The potential spread of pandemic (H1N1) 2009 viruses resistant to oseltamivir will be monitored closely

through the provision of a proportion of samples to the WHOCC for antigenic characterisation and

antiviral resistance testing from laboratories in all jurisdictions, and from a proportion of influenza

positive samples collected from patients presenting with influenza like illness to Australian Sentinel

Practices Research Network (ASPREN) Gp's.

The vast majority of the pandemic (H1N1) 2009 viruses received from around the country in August

were still sensitive to oseltamivir (even from the Hunter New England area). Viruses of the other two

circulating lineages (H3N2 and type B) are also sensitive.

So at this stage the effectiveness of oseltamivir should not be affected in the great majority of cases.

These viruses are also sensitive to zanamivir (Relenza) and they are not showing any antigenic changes

that would affect their recognition by vaccine-induced antibiotics.

Seasonal influenza vaccination remains the most effective preventative measure.

Based on Australian Department of Health & Aging statement 12 September 2012 - http://tinyurl.com/86v3skx

(Article courtesy of Breath of LIFE Support Group newsletter)

SHORT HUGS

If you have trouble paying your electricity, gas or

water bills and are at risk of disconnection, you may

be eligible for help under the Hardship Utility

Grant Scheme (HUGS). Contact your utility provider

and explain your situation. If you might be eligible,

they'll ask you to see an independent financial

counselling service that's registered with HUGS.

Financial Counsellor's Association of WA Hotline 180 007 007

(Article courtesy of Breath of LIFE Support Group newsletter)

Portable Oxygen Concentrators

"News Update"

(Article courtesy of Lungnet News ALF)

We have recently heard several reports of portable oxygen concentrators being purchased

online from overseas suppliers, or on EBay at vastly discounted prices. However, please be wary of purchasing oxygen concentrators online!

One patient who purchased a machine from an overseas company took it to their doctor and

found that it was not delivering the supply of oxygen they required. Oxygen is a medical

therapy for which you must have a current prescription from your doctor and oxygen

concentrators produce medical grade oxygen. These devices should be delivered to you by a

trained technician who can take the time to go through all aspects of your machine, such as

initial set up, recharging, power management, safety tips and oxygen settings. If you have been

prescribed oxygen, please talk to your health professional and reputable oxygen suppliers in

Australia to ensure that you purchase a machine that meets your needs.

The Lung Foundation has published a useful resource on oxygen called "Getting Started on

Home Oxygen". You can download a copy from their website at

http://www.lungfoundation.com.au/lung-information/patient-educational-material/getting-

started-on-home-oxygen or purchase a copy for $8.00 plus P&H by calling 1800 654 301.

"The Power of One"

From a kitchen table to around the world

10th International PH Conference and Scientific Sessions

Held June 22-24, 2012 Orlando, Florida, USA

As you know we were unable to send a representative to this very important conference despite

being offered an educational grant we just didn't have enough funds, but maybe we will have

another go in two years when it is held again.

In the meantime I have included the preliminary schedule items so that if there is any

information taken from each session in particular people would like us to follow up on we can

contact the USA PHA Association who has kindly offered to be of any assistance we need, in

any way possible.

Conference opening & keynote address

Patient/family led sessions

Skill building workshops

Medical update dinner

Power breakfast: network with a medical professional

Medically led sessions

"Journeys" luncheon

Medically led sessions

Support group meetings

Fashion show

The power of one founders dinner

Next generation of PHA breakfast

Medically led sessions

"I leave the Conference with a great feeling of inspiration and encouragement. Never in my life have I experienced an event like

this. I never dreamed that so many special people would impact my life after I was diagnosed with PH. Thank you". 2010 Conference Attendee

Chairperson & joint Coordinator Melissa Dumitru

thanks Sharyn Dyson former newsletter editor &

joint coordinator for her hard work as she steps

down from this position.

Volunteers and members June & Andrew Violettis

man the registration desk at the May 2012 meeting.

The lovely Margaret Nunn, Convenor of the

Scleroderma Association of WA draws the

mother's day raffle 2012 from the box held by

PHWA Senior Advisor & member Alan Mitchell.

PHWA Senior Advisor & Raffle Mistress member

Marlene Mitchell sells off the last of the tickets for

the Mother's Day Raffle.

Yummy morning tea supplied by

Lady Cupcake Boutique Kitchen

The PHWA Resource Library offering information

and materials on various associated groups as well

as PH.

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.