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“What’s new at the Network this month”

Welcome to the PHNA eNews Edition 2  - November 2018

Hello & first words 
 
Hello PHamily, thank you for joining us again this month to read our November eNewsletter. To kick off November we would like to start off with another great quote. 

"My mission in life is not to merely survive, but to thrive", Maya Angelou 

Bold words indeed, which I apply to myself wholeheartedly. Working full time as the Founder and CEO of our growing organisation, while living with pulmonary arterial hypertension offers up some unique challenges indeed.  
Ending up in ICU in October with life threatening sepsis pretty much took care of the last month. The minute I was stable I was begging our team to bring in the laptop so I could get back to work! The internet was very spotty in the hospital and I was forced to rest and reflect instead of work, which is torture for someone who is as driven as I am. This is one of the major challenges we face when living with chronic disease, the interruption of normal daily life. So how do I bounce back while in recovery? I spent considerable time sorting through all my photos on the Ipad and reminiscing, I also started planning for the future. This is something a lot of us stop doing when we are diagnosed with this disease, when the future is so uncertain. End of life care planning is something that a lot of us have had to consider and discuss with our loved ones. I thought I was prepared, only to find that I was woefully unprepared. As such I want to introduce you to an amazing organisation called "Your Life Talks", based in Queensland. Check them out below and lets get the conversation started!

We hope you enjoy our monthly offering to the Pulmonary Hypertension Community in Australia and beyond. Please let us know if you have any feedback, or input you’d like to share with our PHamily, we are very inclusive, and everyone is welcome.

Be kind to one another, Melissa Dumitru & Team PHabulous

November Awareness Month

PHNA will be bringing you all the news and pictures from around the globe in our December edition of eNews, stay tuned!

PHNA 2018 Superhero Awareness Awards Finalists

CONGRATULATIONS TO THE FINALISTS
This initiative is proudly supported by our Junior Ambassador Tyler Wilding,  and the Lion's Club of Whitford WA.  The nominated finalists are from three categories. Awareness Warrior's include: a person living with pulmonary hypertension, a carer, a support group or organisation, and lastly a medical or allied health professional, who has contributed to raising awareness in Australia, in the field of Pulmonary Hypertension.


WINNERS will be announced November 30, for Pulmonary Hypertension Awareness Month

Community Support 

The PHNA Spring edition of our quarterly magazine is out now for your reading pleasure. Click to download or subscribe, and to read previous editions.

Your Life Talks

Click to discover the "Your Life Talks" website. This is an innovative and creative way to get those conversations started, which might ordinarily be a little tricky. 

Why have these life talks?

We talk about the weather, our weekend, sports and our holidays with ease….so why is it so difficult to talk about our life’s journey and our end of life wishes?

It is natural for us to want to downplay our importance, and avoid burdening those closest to us with our wishes.

However, initiating conversations to recognize our loved ones’ intrinsic need to remember and celebrate their life and achievements, and share their plans for their future, is the key to understanding why these conversations are extremely important.

What most people need is a reason or a little bit of encouragement to kick-start these conversations. The graphics below will take you on a safe and comfortable journey to help get the conversation started.

Breaking News

The ConnectGroups Association inaugural Lifetime Achievement Awards were held with their annual AGM earlier this month. Bankwest  hosted this lovely event at the Towers in the city, over a delicious brunch.

We were so thrilled when Ron Love was awarded the WINNER for his incredible long service to our community, in multiple areas. His selfless contribution to so many despite his own hardships as a 'forgotten Australian' have not deterred him from helping others. Ron is a lovely person who is warm, kind and incredibly humble. We are so thrilled for him, this award is well deserved. 

 

Community Spotlight 

 
 
Our PHNA community support group gathering in October was supposed to include the long awaited guest speaker on the latest from the World Health Organisation. Unfortunately our Patron Professor Eli Gabbay had to cancel, so we gave a presentation about the 'Patient Experience'. (A Health Consumer Council initiative).  We had some lively debate about our individual experiences and a great discussion about a case study from Bethesda Hospital on how they have integrated the patient experience into their everyday care of patients. To read more about the patient experience initiative Click.

The Heart & Transplant Foundation of WA - Honour Donor Families

Every year the HLTF hosts its annual Tree Planting & Thanksgiving Ceremony in honour of donor families and recipients. They celebrate the incredible highs of receiving an organ and the tragic lows of losing a loved one who became the donor.  This includes people who received organs but died after transplant. Everyone is celebrated, including the incredible medical teams who perform the life saving surgeries. 

Dr Rob Larbalestier was the first speaker. He put this subject into context by stating that their should be a national day celebrating all donors and their families for their incredible bravery, selflessness and what can only be seen as heroism.

We listened intently as a young wife of a donor husband spoke about his sudden death and how her and her two young children made the decision together to donate his organs. Lastly we heard from a young woman who has spent her whole life battling CF and received her first lung transplant at a very young age, before needing a second transplant in her twenties. Their stories were inspiring and moving to say the least, and there were more than a few tears shed as they spoke. 


PHNA were invited to attend and host an information table. We were so grateful to have been included in this moving and emotional tribute, particularly as one of our founding support group members Linda Franklin was a recipient who died three days post transplant. It was very healing and beautifully presented.  (Please note that due to the sensitive nature of this event we could only share a few photos with you).

Demand Films Presents: Dying to Live

"Dying to Live" - The Premiere of this fabulous film highlighting organ transplant in Australia

The documentary film DYING TO LIVE reveals deep beneath the complex world of organ and tissue transplantation and the heart-wrenching stories of real people awaiting life-saving organs in Australia. Why must they wait for so long? Are changes in policy required – or shifts in perception? Or is it as simple as signing up and having the conversation with loved ones? Why do we avoid the topic of death? What does it take to support a desperate family member running out of time as they hope for a stranger’s generosity? How difficult is it to consider the death of a loved one as a chance at life for someone else? And how much love and understanding does it take to make the compassionate decision to register as a physical philanthropist?

Please remember, "Intent is NOT Consent", complete an organ donor form today, and inform your loved ones of your wishes. 
 
https://www.youtube.com/watch?v=SFJ7rznlBdQ 
Dying to Live - Official YouTube Preview

Now Available - PAH Webinar on Exercise 

Click to take you to the latest Webinar about Pulmonary Hypertension and Exercise from the Lung Foundation Australia. While you are there, have a look at some of the other great short clips, enjoy! 

PAH and Medications Webinar coming to you in December

Self Help & Support Groups Awareness Day

Carer Support & Services

National Carers week was hosted around Australia with many people holding events in honour of carers. To check out more Click and follow the news.
Subscribe to Carers Australia

Mental Health Moment

Mind Your Health! Your mental health is just as important as your physical health. Let's take care of it together. This was the theme for 2018.  Mental Health week is an annual, national event that aims to improve community awareness and interest in mental health and well-being. World Mental Health Day is marked every year on October 10th.  For news on the events held around Australia Click  

Recipe of the Month from the PHNA Kitchen

Almond and blueberry smoothie - Click for full recipe

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