The Biopsy BugleWinter 2014

The Australian Heart Lung Transplants Association Inc.

President’s Message

Welcome to our new look

newsletter! The production and change of this coincides with the development of our new website, both are steps towards making

the association work better for our members and be more accessible for you. This was a main goal of mine at the last year’s AGM. I hope by now many of you have accessed the new website, if not please do.

ahlta.com.au is our website and you can visit it today! We would love to hear your feedback; we are only as good as you make us.

With the new look newsletter comes a new editor, Babak Jafari, who we are very happy to have on board. It was with a heavy heart that our previous editor moved on. I would like to just take a moment to publicly thank Lorraine Higgins. Who worked tirelessly in putting the biopsy bugle together for many years. She also came

to Sydney from Canberra for many meetings, taking the minutes for us and also producing many a booklet for thanksgiving and the AGM’s. This is only a short list of what Lorraine did for me, us and many others. She is a kind soul, friend to thousands and would help anyone without a question in the world. Loraine is not a transplant recipient nor is she related to one but may as well be. She was brought to us by Peter Wicks past president and we will be forever grateful for the time, the years and the dedication she gave to the Association. Thank you Lorraine!

The 30th Anniversary celebration was a great success. I, myself will forever treasure that day. It was a day of laughter, catching up with old friends and for me meeting so many new and wonderful people. Everyone had a story to tell and I feel so blessed I got to hear many. Plus, listening to how things have changed in the past 30 years. We still have plenty of anniversary memorabilia if you would like to keep a little something from this special time.

Wnewsletter! The production and change of this coincides with the development of our new website, both are steps towards making

the association work better

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Stall days just continue to grow, as does my waistline with them. The selling is just a small part of the day; it’s the socialising that keeps me coming back for more. I love chatting to you all, whether you are new, old or waiting. I also love chatting to your families and, the weird and wonderful that manage to stop by.

Sutherland to surf is fast approaching which of course is the warm up to City 2 Surf. St Vincent’s Hospital is putting in a team this year. If you want to be involved contact their fundraising department. Please remind them that you are a member of AHLTA.

Lastly, winter is a terrible time for us. Remember to stay warm, eat well and exercise

where you can. Stay away from coughers, sneezers or anyone who just looks/sounds a bit suss. Good nights sleep; garlic and a warm blanket go a long way. Don’t let winter hold you back though. We still need to live. Don’t miss a minute of this wonderful life. I heard a saying the other day: ‘life is what you make it’. So simple but so true. If you are sitting on the lounge, make it great. Share that time with people you love. If you can get out, celebrate just getting out. Never forget how far we have come and always aim high. Fortune Favours the Brave.

K i m b e r l e y Kimberley Livingstone

Our new website is here… www.ahlta.com.au

Having an up-to-date website that is a reliable

source of information for you has always been a major concern for the committee. The results of the survey at the AGM showed that most of you agreed that new website could better assist you with the information you are

searching for. We are happy to announce that in response to our members needs, our new website has gone live. When you visit our new website you will notice some major changes which will make it easier for you to access the information you need.

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Our website will always be a work in progress to meet your ever changing needs and expectations. We will endeavour to frequently update our website to ensure our main source of communication is reliable for everyone.

Some of the changes that you will notice in our new website are:

• Easy to navigate: Navigation has been a prominent element of the new website. The new website is easy for you to quickly fi nd the information that interests you.

• Design: We strived to make our new website attractive for you by the use of colours, design and images.

• Content: Having good quality content has been our main focus to make the new website useful for you. This is the most important feature of our

new website. AHLTA’s new website provides content that informs you and is relevant.

• Mobile-friendly: As more and more people use mobile phones to access the Internet, having a mobile optimised site is a necessity for us! You can easily access your desired information via your mobile or tablet.

If you have suggestions to improve our website, or if you just want to give us your feedback, please feel free to email us at info@ahlta.com.au

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Story of my journey

Hi, my name is Russell Williamson and I live in Mansfi eld- Victoria with Anne, my wife of 41 years.

I just wanted to write this letter in response to the 30th Anniversary of the Biopsy Bugle.

28 years ago, I arrived to St. Vincent’s Hospital with a heart ejection factor of 0.7%. My doctors didn’t tell me how sick I could be with such a low percentage of blood fl owing through my veins.

In 1971, I was diagnosed with cardiomyopathy on my 18th birthday. It was a diffi cult situation. Staying alive and hope that the technology will catch up with my disease was the most I could expect. This didn’t stop me from doing my apprenticeship as a carpenter.

I got married two years later at the age of 20. We built our own home and lived our lives not thinking too far into the future. I was able to work and enjoy my life without being pre-occupied with my underlying

heart problem.

In 1980, Anne and I decided to move to Mansfi eld in Victoria. I was working for a quarrying and concrete batching company. As you can imagine, the work was

strenuous. In 1985, I had a heart attack after batching concrete all day. As a result, I was sent to the Royal Melbourne Hospital for a series of tests. I was told I would be home in a few days. But, unfortunately,

they realised that my ejection factor was only 0.7%. I had to stay in the hospital until a bed became available at St Vincent’s hospital in Sydney. I stayed there for 10 days and the doctors kept my heart working by drug made of snake venom!

I was fi nally fl own to Sydney by Air Ambulance. After a series of tests, I was told by my cardiologist, Don Esmore, that the chance of receiving a heart for transplant on time with the right blood and tissue type was very slim as they had

strenuous. In 1985, I had a heart attack after batching concrete all day. As a result, I was sent to the Royal Melbourne Hospital for a series of tests. I was told I would be home in a few days. But, unfortunately,

they realised that my ejection

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to do two transplants in such a short time while I arrived to the hospital! By Thursday swabs were done. I was told to leave the hospital due to a staph infection and I was off the list for a new heart! But before we left I scrubbed myself with phisohex, did one more lot of swabs and I dropped them into the lab!!

We were discharged from the hospital to a fl at opposite the hospital to wait. It doesn’t really help to think on things like this so much, thus, we decided to see the newly released Crocodile Dundee movie at Bondi Junction. We laughed and loved the movie. The phone was ringing when we arrived home from the movie. The nurse was looking for me for hours.

The latest swabs were clear and a heart was on the way. I now need to prepare for the transplant. Needless to say, we arrived to the hospital in no time and met the nurse at the door with a wheelchair ready to take me to X-ray.

I remember Anne and I just rushing to the X-ray department with the nurse running behind us with a wheelchair saying “you shouldn’t be able to run like that with an ejection

factor of 0.7%”. But I was excited, nervous, frightened and a little bit of adrenalin I guess!

The rest is history. After receiving my new heart I went

on to break all the records in getting back home from a transplant hospital. We were back in Mansfi eld in six weeks (I did saddlery repairs and started to learn woodturning). I was ready to work, but not batching concrete again. Farming has always been my dream job and I am lucky enough to have worked on the land ever since 1986. For the last 20 years, I have worked for a great farming family and hope to do so for many years to come.

Ps still going strong 27 years later with no major health issues

Russ & Anne Williamson

factor of 0.7%”. But I was excited, nervous, frightened and a little bit of adrenalin I guess!

The rest is history. After receiving my new heart I went

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Health NEWS

Scientists explain stress-heart link SCIENTISTS say they may have unravelled how chronic stress leads to heart attack and stroke by triggering overproduction of disease-fi ghting white blood cells which can be harmful in excess.White blood cells “are important to fi ght infection and healing, but if you have too many of them, or they are in the wrong place, they can be harmful,” study co-author Matthias Nahrendorf of the Harvard Medical School in Boston said.

Doctors have long known chronic stress leads to cardiovascular disease but have not understood the mechanism.

To fi nd the link, Dr Nahrendorf and a team studied 29 medical residents working in an intensive care unit.

Their work environment is considered a model for chronic stress exposure given the fast pace and heavy responsibility they carry for life-and-death decisions.

Comparing blood samples taken during work hours and off duty, as well as the results of stress perception questionnaires, the researchers found a link between stress and the immune system. Particularly, they noticed stress activated bone marrow stem cells, which in turn triggered overproduction of white blood cells, also called leukocytes.

White blood cells, crucial in wound healing and fi ghting off infection, can turn against their host, with devastating consequences for people with diseases like atherosclerosis — a thickening of artery walls caused by a plaque buildup.

The study then moved on to mice, which were exposed to the rodent equivalent of stress through techniques like crowding and cage tilting.

The team chose atherosclerosis-prone mice.

They found that excess white blood cells produced as a result of stress accumulated on the inside of arteries and boosted plaque growth.

“Here, they (the cells) release

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enzymes that soften the connective tissue and lead to disruption of the plaque,” said Dr Nahrendorf.

“This is the typical cause of myocardial infarction (heart attack) and stroke.” He added leukocytes were only a part of

the picture — factors like high cholesterol and blood pressure, smoking and genetic traits also contribute to heart attack and stroke risk.

Source: Theaustralian.com.au JUNE 23, 2014 8:34AM

Did you know that AHLTA is a Zoo Parent at Taronga Zoo? We have supported Taronga Zoo for 6 years and each year we receive a family pass to the zoo and a certifi cate. This year’s certifi cate features a beautiful white tiger.

Melveta James at the clinic has the pass and all heart/lung transplant patients and their families are welcome to use it. The cost of using the pass for one day is $25 plus $5 deposit. You will receive your $5 back on return of the pass.

To access this great service please call Melveta on02 8382 3294 and book your pass today.

Enjoy!

Taronga Zoo

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30th Anniversary

When organising any event there is always a level of stress and anxiety, but this year was different. I was stressed yes, but gee I was excited. We were celebrating 30 years of what saved my life, what has saved so many of my friends. We are celebrating 30 years of medical magic! The service was very up lifting and moving as always. Father Laurie again shone and Lora Stopic gave us the music of angels. Magic fi ngers she has I’m sure of it. For the fi rst time in the 5 years I’ve been attending the church was full!! Standing room only. This warmed my heart right from the beginning. We then moved into the function room of the hospice and feasted on an array of delights. With over 100 people squished into one room, the fun was just about to begin. I provided a brief history of transplant, where it started and how its changed. Can you believe Cyclosporine was the only anti –rejection drug for many years!! We had the pleasure of having Professor Alan Glanville, Professor Peter MacDonald, Heat Transplant recipient Len

Goldsworthy, Lung Transplant recipient Mandy Jones and a Donate life representative join us. These fi ve enlightened us to the ways of the old, ways of the new and future plans. Both doctors gave an insight into new research and how we will be benefi ted (you can view this on our website). Some very exciting times ahead for transplant. The association then generously gave $10,000 to heart transplant research and $10,000 to Lung transplant research. All in the name of making a better and brighter future for all the members. Our guest from Donate Life gave us an insight into the other side of transplant, the donation side and provided some very valuable information to the audience. Thank you again to our fi ve brave panel members. You did a great job and I know it wasn’t easy fi elding questions from the audience. The Doll Ladies amazed us again with a donation of $20,000 from their stalls throughout the year. I don’t think I’ll ever understand how much jam that is! I am however very grateful for these amazing selfl ess woman.

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The weather was absolutely stunning, members mingled with young and old. Everyone had a story to share and details to compare. We stopped just short of comparing scars. I would like to take a moment to thank Evan Pussel, one of the founding members of now known AHLTA and the longest recipient. A beautifully humble man who, as is his wife, are a wealth of knowledge on all things transplant, St Vincent’s

and AHLTA. I feel honoured they were there to spend the day. There were many others who I was so lucky to meet and feel so honoured that they made the journey to celebrate with us. A select few, who have been there since the beginning, a group of recipients with a common interested supporting each other.

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My name is Helen and I would like to share a little story with you, about how I fought back from a heart problem that nearly cost my life, to starting a new career in the fi eld that I always wanted. I had been reasonably fi t and well all my life, despite being a bit overweight and a smoker. So when I landed what I thought was a dream job, I was thrilled but found that I struggled to perform. I was shocked and scared and wondered what was wrong with me. It wasn’t normal to feel so breathless. Off to the doctor I trotted and, as quick as a fl ash, they did some blood tests and before I knew what was happening, I became an inpatient at our local hospital for seven weeks.

I had contracted an infl uenza virus and it was attacking my heart. I was now fi ghting for my life in hospital. The doctors told my family I only had 10% chance of survival. “You just don’t come back from this”, he said, “she is dying”.

AHLTA’s Tax Appeal

Our world had just collapsed around us.

I was referred to the Heart Lung Transplant team at St Vincent’s Public Hospital in Darlinghurst, where they discussed a heart transplant. What followed next is all a bit of a blur. I was told that a transplant was my only hope. A large number of tests were performed and numerous

months later I was listed as an organ recipient. At that stage my heart was just functioning on 23% capacity for an agonising nine months, when I

fi nally got the long awaited call that saved my life.

Life after transplant doesn’t always run smoothly, I’ve had a few hiccups but most importantly I knew I wanted to get my life back on track. I decided to look for work. It was not as easy as I was expecting. I am in my 50s and have been out of work now for nearly three years, not to mention I now have a long medical history that may impede my opportunities.

I was lucky enough to be

was wrong with me. It wasn’t

months later I was listed as an organ recipient. At that stage my heart was just functioning on 23% capacity for an agonising nine months, when I

fi nally got the long awaited

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given a few job opportunities; however they all ended up the same way. Employers found out about my condition and slowly started cutting my hours. This really affected my confi dence and belief in myself. I wasn’t in a good place.

After some discussion with my husband I decided to reach out for support, and the best place to start was with AHLTA, the Australian Heart Lung Transplants Association. I wasn’t completely sure how they could help me; I just knew that they to provided assistance for transplant recipients and their families, but I wasn’t aware of their Financial Assistance Program.

I contacted the President of the Association, who provided me with all the information I needed. She also offered invaluable guidance and vital support. At that time our money was getting tight and there wasn’t a lot to go round. I applied for a loan from AHLTA to help pay for a Certifi cate III in Aged Care and Disabilities at TAFE. I have always had an interest in this fi eld but did not think I would ever be able to work as a carer. But with the help of AHLTA, I was fi nally able to study what I always wanted,

and two months later – with my certifi cate in hand – I was formally qualifi ed for the job I had always wanted to have.

I am now working in an aged care hostel and I love every minute of my new job. It’s a chance for me to give back to the community. The best part is that my employer knows of my medical background and it doesn’t change a thing, because I am respected for the work I do, not judged for my medical history.

There is no way I would be where I am today, if it wasn’t for the fi nancial, as well as the emotional support that I have received from AHLTA! They gave me a hand-up when I was down on my luck and created an opportunity for me. And now I feel that I have the world at my feet again. For this I will always be thankful.

And today, I am writing to you to ask you to make a donation to AHLTA if you can, so that other transplant recipients, whose lives have been turned upside down, can continue to rely on the great and priceless work that AHLTA does.

Warm Regards

Helen CroweAHLTA Member 13

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Please help support AHLTA by making a donation!Donate nowYour donation will make a difference to AHLTA’ current and future services for heart and lung patients, their families and carers. In return for your generous contribution, AHLTA will guarantee that your donation is applied to provide service to members in need.

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Would you like to receive your Biopsy Bugle via email? If so please go to our website – www.ahlta.com.au and complete the Contact Us details including your name, email address and phone number with a request to send your Bugle via email, alternatively, you can complete your details below and email it to us at info@ahlta.com.au

The advantages of receiving your Biopsy Bugle via email is you will get your Bugle much more quickly, no more waiting for the snail mail and it will save your Association the costs of printing and postage and well as being good for the environment. All members who request their Biopsy Bugle be sent via email in the next 3 months will go into the draw to win a Coles/Myer Voucher.

Good Luck!

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Website: ahlta.com.auEmail: Info@ahlta.com.au Business Development: 02- 9797 5313Postal Address: PO Box 309 Kings Cross NSW 1340