The Biopsy BugleWinter 2018

The Australian Heart Lung Transplants Association Inc.

Since 1983

President’s Message

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It is hard to believe we are in July already, the year seems to have flown by. The AHLTA Committee continues to focus on the significant

issue of member engagement as part of its overall strategy to ensure the organisation is providing the supports and information members want.

One of the primary concerns is to ensure our membership list is current and accurate and I would like to thank the committe members involved for the tremendous effort being put into this.

We will be in a position in August to decide on the purchase of an appropriate Membership Engagement Platform which will provide critical technical assistance to reach and interact with our members to provide the support they want and need. Others at the Committee have been working on enhanced

promotion of AHLTA and dissemination of relevant and current information. Since the last issue we held another Thanksgiving Service in early June which was very successful with many in attendance. It was at this event that the Doll Ladies made their annual contribution to AHLTA, this year it was $16000. This is yet again an impressive result from our most stalwart supporters. Without this sustained support over the last 25-30 years, some programs would not have been successful. So thank you very much Doll Ladies for your sustained and important contribution to our organisation and to the well being of people as they go through the challenging transplant process.

Finally I would to thank our small but energetic Committee which is working so hard to achieve what we have to do to enhance AHLTA as an organisation. Thank you Lyn, Lisa, Susan, Andy, Joy, Lea, Libby and of course Babak. You have all made a significant contribution and it is much appreciated.

Jerry McNamaraPresident

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Thanksgiving Service 2018

AHLTA’s 34th AnnualThanksgiving Service was aday of reflection, support,joy, and friendship. Once again, we came together at the beautiful and historic little chapel in the grounds of the Sacred Heart Hospice opposite St Vincent’s, to celebrate the gift of life and thank those who generously gave us that chance.

We will never forget the day of our transplant surgery, which many of us consider the new birthday.

We recognise that this most wonderful accomplishment would not have been possible

without the selfless act by our donors. We all can agree now that miracles can happen!

Then, we all gathered forlunch in the seminar room.Lots of laughter andchatter happening there!Our wonderful Doll Ladiespresented us with a chequefor $16000, the results of theirstalls at Manly, Dee Why,Bunnings and Gosford.

Their prize winning jams, pickles and chutneys are amazing and the effort they go to raise money for us is awesome!

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Bi monthly Market stallGround floor entrance lobby SVH

Jams +cakesknitting + crochet

from the Doll Ladies

Tuesday 28 August 9.30AM to 2.30PM

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Story of my journey

My story is one of determination to survive from the moment my mother miscarried my twin. I caught whooping cough as a baby too young to be immunised. I was in hospital with pneumonia aged two when diagnosed with bronchiectasis. I have memories of doing jigsaw puzzles upside down, because in the early 50’s, sick children could only to be visited on weekends.

At school I was conscious of my cough, and could not swim because I had ear infections. I also had terrible handwriting as a left-handed person forced to become right handed with lots of detentions, instead of sport. I was blissfully unaware that I was suffering from a socially unacceptable condition, as I often had colds, sinus headaches and a gut [lungs] full of sputum. Although I won a scholarship to a Grammar school, I had feelings of low self-esteem, too shy to ask for help because

I was partly deaf from burst eardrums.

University was much more exciting. My cough was noticeable, but not an impediment until I really started mixing with more adventurous

architecture students, most of whom smoked. I met my future husband at this time. Life was stimulating, loud, technicoloured and smokey. I was invincible, until I experienced my first lung

hemorrhage and was sentenced to bedrest. My boyfriend had to give up smoking.If my friends smoked near me I would break their cigarettes in half.

We married when my husband graduated and I began my final exhausting year. The flu season put me in hospital with pneumonia. My lecturers allowed me to skip some assignments and submit my

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thesis in time to graduate with my mates.In the early 70s, we worked hard, saved enough to buy a ‘semi with potential’, selling it a couple years later to buy our house. It was a wide sandstone terrace, with a large yard, which with friends, we turned into a communal garden, extending our love of native plants throughout the local streets.

We lent our house and dog to friends in 1975 and travelled overland from Tibet to Turkey armed with antibiotics and good luck. We survived despite some anxious moments in Afghanistan. Wintering in London was very cold and easy for young architects to get work. Touring Europe in a fitted out kombi with two bicycles, weaving samples of local fleeces, baking bread and drinking the local wine was idyllic. Finally a Qantas steward welcomed us to come on board, a coming back home for Chrissie. It was 1978.

Time to renovate the house and the hormones kicked in to start a family. My obstetrician insisted he treated infections whilst I was pregnant and my ears were fixed by microsurgery when our daughter was 3

months old. Our son was born two years later. I was always tired but enjoyed motherhood. I finished my horticulture course and worked from home a bit.

My lung function dropped to 70%. My bronchiectasis spread to my large airways and I became an asthmatic. I learnt to use a Flutter valve, had sinus surgery, and sought medical help to keep infections under control . In retrospect it was a good time, despite a couple of recessions, and my husband’s practice survived and merged with a large practice. I didn’t work professionally again until my kids were in their teens.

I retrained with a masters in heritage conservation, electing to work in local government. Initially at Marrickville. I consulted with the multicultural community and the historical society and created many community events and exhibitions. Tough physical work. Next, I became part of the strategic team at Woollahra Council, My health declined till I could only manage two days at a time, working from home when struck by MAC and Pseudomonas. This was not agreeable to the council so I took a less demanding position

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in my local area.

When my lung function dropped to 35% I stopped working and started oxygen. My COPD physio group cheered when my oxygen sats reached 90%. I began the transplant work up at North Shore Hospital. I became house bound to oxygen and my space cadet Bipap mask and was regularly admitted to RNSH. Easter 2009 I suffered a cardiac arrest in hospital and woke up in ICU to Elton John’s crocodile rock playing endlessly at the next bed. Back on the ward, I suffered from delirium causing great embarrassment. Now my physician had to prove that I was still well enough to undergo a double lung transplant in 2009, age 60. I wanted a chance to see the next generation.

My transplant No 398 was a joyful painless success. A few days after discharge I returned with severe headaches - encephalitis.- an adverse reaction to Cyclosporim.

Luckily I have little memory of the next 3-4 months spent in ICU, with septicemia, pneumonia and influenza. My extended family played an enormous spiritual and advocacy role, willing my Irish

determination to pull through. Another 3 months in rehab I came home, albeit with multisystem degenerative peripheral neuropathy with Parkinsonism, which means I have little feeling in my hands and feet, a lack

of balance and noticeable tremors. We both cried when I came home. We hadn’t anticipated I would be disabled. A week later my husband was diagnosed with bowel cancer.

My wise old Chinese doctor had an advert for a carer who was hired immediately to look after us. She had a phenomenal knowledge of the health system and where to get personal things for independent living. Together we made plans to downsize from our home of

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over 40 years, to a ground floor apartment with enough garden for our dog and two cats, closer to my husband’s office and our adult children, all in the St Vincent’s health care area. Sue rules the roost through all our medical traumas, including my husband’s successful brain tumour surgery.

It was a surprise when paramedics gave me pain relief for a broken leg in 2010 and I arrested as the ambulance arrived at Gosford hospital. One night in 2013 I slipped getting back into bed, breaking an arm, elbow and shattering my hip. I went into cardiac arrest when given morphine. I have steroid induced chronic osteoporosis and a humped back. I was unaware that hormone replacement therapy would have been helpful in increasing bone density. The upside of steroids was cataract surgery on both eyes. I also have frizzy hair so thick that the paramedics said it may have saved me in a recent fall.

I’ve been relatively healthy until last year, catching flu, RSV, pneumonias and the dreaded shingles. I tried rehab

at my local private hospital, but apparently was given oxycodone, so back to St Vincent’s ICU where I took a trip on the other side. I awoke to a family gathering. No more painkillers.

Recovery with medication for the side effects of transplantation is only part of my story. Depression comes afterwards. My emotional low about my recent near-death experience and the despairing impact it had on my family took a lot out of me last year. With counseling I have turned the corner. Every day is positive again, despite my stupid falls.

I have been very lucky surviving these traumatic moments, and have just celebrated my 70th birthday with my family and my grandson. I have contributed years of transcribing for the library, a bit to the AHLTA committee, encourage everyone who can to support other transplantees, and encourage organ donation.

I have also taught my family much about resilience and optimism.

Elizabeth (Libby) Maher

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AHLTA Bunnings BBQ

We held another successful Bunnings BBQ Day on 9 of June in a cold and a little rainy day Belrose NSW.

There were lots of sausages, onions and bread to be served to many hungry customers as well as the fabulous jams, cakes and pickles made by the lovley Doll Ladies. The day was a little long and as usual, we started from 7AM and finished around 4.30PM.

It was great to see some of our members and committe members to come along and help us with serving customers during a busy day.

Thank you to all the wonderful helpers who helped to make the day such a success!

We made well over $1,500 on the day and we look forward to our next Bunning’s BBQ in 2019.

Please get in touch if you if you are interested in helping out on the day.

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Health NEWS

Arielle ‘like a free bird’ after Royal Children’s Hospital’s heart transplant. NEWBORN Arielle was dying. But a radical move by the Royal Children’s Hospital rescued her failing heart in a way never before attempted in Australia, and the now-four-year-old is now the face of the hospital’s annual Good Friday Appeal fundraiser.

ARIELLE is the living result of a brave and radical move by the Royal Children’s Hospital to rescue the failing heart of a newborn — barely the size of a walnut — in a way never before attempted in Australia.

But the meticulous planning and expertise of the cardiology and cardiac surgery teams in supporting eight-day-old Arielle with artificial circulation has paved the way for other babies to receive ventricular assist devices.

The VADs, which take over the pumping function of the heart, have kept them alive and given them the time to grow big and strong enough for a heart transplant.

Now four years old, Arielle is the face of the Good Friday Appeal, the biggest annual fundraiser for the Royal Children’s Hospital.

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Everyday Victorians who put their hands into their pockets during the appeal are part of the large team that makes success stories like Arielle’s possible. It funds education, equipment and research to support the 17,000 surgeries performed each year, the 48,000 children admitted to wards, the 322,000 appointments with specialists and 86,000 children who seek emergency help.

Before Arielle was born with dilated cardiomyopathy, VADs were used only in children aged over 12 months and 10kg as a bridge to transplant.

Given the scarcity of deceased infant heart donors and complications risks, RCH cardiologist Dr Robert Weintraub said the team had significant reservations about using the devices in patients younger than that.

“In the past this would have been considered to be too difficult a problem,” Dr Weintraub said.

“It was unclear to us whether we could get a baby to develop normally, and grow to the size that was required for a transplant.

“A VAD is used not just to keep someone alive. It needs to keep them alive in good enough shape that when a donor becomes available they can be transplanted.”

But newborn Arielle was dying. The left pumping chamber of her heart was enlarged and not pumping as it should. After finetuning the rate and volume of blood the VAD would deliver, Arielle become the youngest in Australia to be placed on such a device. At eight days of age, the Melbourne girl is still the youngest child in Australia to be fitted with an artificial heart.

She then received her lifesaving gift of a new heart when she was five months old, and is one of the youngest to have a heart transplant. Now, as she enjoys her second year of kinder, mum Genevieve said she would be forever grateful to the RCH.

“Everything she wants to do in the world, I want her to do it, like a free bird,” she said.

“She inspires me. We can’t thank the hospital enough.”Source: NEWS.com.au Date: February, 2018

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Website ahlta.com.auEmail Lslater6@gmail.com Phone 0439 598 205Postal Address: PO Box 309 Kings Cross NSW 1340

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