The Biopsy BugleAutumn 2018

The Australian Heart Lung Transplants Association Inc.

Since 1983

President’s Message

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Since the last issue, the AGM was held in December when the Committee’s work towards a strategic direction for the AHLTA was outlined to the

membership. Essentially there were five strategic options proposed which are: 1. Do nothing which is business

as usual but reinvigorated2. Narrow the Focus to Bugle,

Facebook, financial support and fundraising for research only

3. Merge with similar organisations

4. New ideas, launch a transplant support and fundraising app

5. Close down the organisation and ensure proper use of existing assets in a new home.

It was decided to explore the 3rd and 4th options and report back to the membership in May or June of 2018. The AGM also saw us welcome

three new members to the Committee who are Andy Gough (and Joy) , Elizabeth Maher and Lea Marheine. This reinvigorated Committee has been focussing on the implementation of the above options. Before making any major changes or investments the Committee also determined to initially focus on membership engagement (Phase 1) and developing initiatives to hear directly what our members want from AHLTA as an organisation. There are a number of membership engagement platforms available to assist us with this objective and we will obtain quotes from vendors with a view to making a purchase decision. Then we will install, set up activity and monitor ongoing performance. On further review it was determined that there was not a large appetite for the merge option at this stage. However there was significant value seen in having discussions with other similar organisations across the country to see how they do things and to determine if there were any

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opportunities to work together in a strategic alliance. This will be pursued in the coming months. With respect to the development of a Transplant App we need to fully establish the need for such and obtain some feedback from transplant patients, carers and clinicians. This is also specifically related to the benefits to our members

of transplant patients. It is also critical to determine the cost and potential funding sources for what could be a large project. This idea will continue to be developed as Phase 2 of the strategic project. Jerry McNamaraPresident

AGM and Christmas Party 2017

In early Decembe, once again our members, friends and family came together at FOYS Kirribilli Restaurant to celebrate end of another successful year with friends and fellow members.

The formal part of the AGM was only 30 minutes, followed by lunch and drinks for everyone at the party.

As always, the Christmas party was a great opportunity for many of us to meet new people who share similar stories as us and talk about our journey of transplant and have some laughter.

We would like to thank everyone who came along

and helped us to make the AGM and Christmas party another unforgettable day

Special shout out to Lisa Slater our secretary who organised this great event.

We look forward to celebrating another Christmas party with you in December this year.

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Story of my journey

Defying natural selection

So I was dying. That’s not meant to be sad or upsetting or said for impact, that was just the fact of the matter. I was never hung up on it or depressed over it, shit just happens, no point crying over it, that doesn’t accomplish anything.

But, not gonna lie, dying is so annoying! Getting breathless going up 1 flight of stairs and coughing 24/7 gets to you. I mean how could I try to pick someone up in a club and be sexy if im coughing all over them? How was I meant to clean up a chimpanzee paddock and climb up the walls to wipe chimp faeces off the windows of the zoo I worked at when I barely had the strength to carry the bucket of water? How was I expected to muster cattle on horse back when riding for more than 1 minute exhausted me? Oh and I very nearly died twice by having major haemoptysis, you should have seen my room, there was blood on the walls! Look literally like a horror murder

scene! My brother made the joke, after he helped carry me with the paramedics into the ambulance that I should have taken a photo and posted it with the caption, I got my period real bad today! But seeing as I was unconscious and literally drowning in my own blood, I my normal impeccable and sharp wit wasn’t up to its usual standards.

So, I got over it. I knew I wasn’t getting any better, my ‘healthy baseline’ was getting lower and lower until I was ‘stable’ at 33% lung function. It was the point where my lungs were so bad at being lungs, literally a dead persons lungs would be better.I could still live a relatively normal life. I wasn’t on oxygen and I wasn’t bedridden, I could still get around and do stuff, but it was as I mentioned before, very annoying. I refused to get to the point of needing to be on oxygen because if I had say, an office job, I could wheel my little tank around and sit at my desk and work. But for someone like me, a

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zookeeper/farmer, that wasn’t really applicable. So I thought I don’t have time to this, mother nature can eat shit Im going to get a transplant. I know people like me are anti evolution, we aren’t meant to be around! But I wasn’t going to let a little thing like 300 000 years of primate evolution stop me. (date needs fact checking not gonna lie) so I went to my amazing Cystic Fibrosis team at Westmead Hospital and told them I want a transplant now.

They were very surprised. They said that it’s always the team trying to convince the patient to consider getting a transplant, not the other way round. But as they then said, I was not like most of their patients, being an expert in using an IV pole as a scooter and doing my own treatment when I was admitted, changes fluid bags and doing my own observations and of course, using dying as a great source of comedy material. So the work up started.

Pap smears ,(to which my Dr looked up and went, ‘hmm that’s odd” very reassuring thing to hear at your first pap smear!) sleep studies, dental checks and skin checks. Then I met the team at St Vincents, they seemed cool. The surgeon went through all the risks and made it sound like a pretty risky and shit thing, and I had some second thoughts,

but then I figured don’t worry about it, you only live once right? So I was put on the list, and I had a funny feeling I wouldn’t be waiting long.

Once you are on the list, every time the phone rings you panic and your heart jumps in your throat. One night, just 10 days of being on the list, my phone rang at 1am and I jumped up thinking oh my god this is it! Turns out it was only one of my drunk friends calling me… I went back to bed thinking pfft now that iv been woken up once I bet theyl call me tonight. I must be psychic because at 3am I did get the call, the nurse said ‘ so we’ve got some lungs if you want them, so yeah come

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in soon if you want’ to which I replied, “yea ok why not?’ just as if someone asked me if I wanted fries with my meal. I had already planned what my facebook statuses would be prior to even being listed because im a loser like that who thinks im the funniest person ever. So at 3am I wrote ‘hospital called and the lungs I ordered have come in. going to get them installed now. I wanted to pay extra to get the newest version but they only has second hand ones. Oh well as long as I get the extended warranty” of course all my friends in other countries where it was day time saw it first and got all excited.

So went to St Vincent’s emergency room and where my story would be just like every other patients. Cannulated, bloods, changing and theatre. I remember getting a bit bored, I was in the waiting bay all ready to go for like an hour, so I started chatting to the nurse about the mating habits of Tasmanian Devils. My parents were not quite so chilled naturally. So surgery happened and I woke up, luckily I didn’t need to be intubated while waking up

because that was the part that I was most scared of, not dying on the table but intubation, gross, just thinking about it makes me gag.

People always ask me, ‘what was that first breath like??’ to which I reply ‘eh it was ok, pretty painful’ also I was as high as Snoop Dog on pain relief so I don’t remember specifics. Fentanyl and ketamine are pretty sweet. I thought hmmm im at Kings Cross, I should go sell this stuff just outside on the streets and make some good money, because I was on A LOT. Trying to update my facebook status to let everyone know I was out and alive was difficult because I couldn’t focus my eyes very well from being so stoned. It went something like this ‘you have now levelled up to level 50. You have acquired new item “new lungs” equip the item for + 67 stamina, + 46 strength and +30 dexterity and +20 magic points. Special effects of new lungs include immunity to coughing and 30% weight gain and 20% fire damage” because only I would make a nerd video game reference to let people know I wasn’t

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dead. I said I was a loser before remember?

So then the long process of recovery began. Well it wasn’t too long I was out after 2 weeks and back at work after 4 weeks (only cleaning the little animals like meerkats exhibits, wasn’t up to chimp paddocks yet) The side effects of all the medication was pretty crap, for anyone whos ever been on prednisolone knows how you become the biggest hangry bloated fat faced monster that cries because they saw a cow. And building up muscle tone took awhile, I could barely walk 5 metres, it was a huge accomplishment to get up one flight of stairs without my legs collapsing. At the time I didn’t think the pain was too bad, but with hindsight, I realise it was being high that made me not quite grasp how painful the recovery was, yea chest drains suck and hurt. However, it was all fine and worth it because now, 2 years later my life is totally different. There were a few hiccups along the way with stomach ulcers and bowel obstructions (I get those at the drop of a hat, if I was an animal I would be a horse because they get

colic just looking at the wrong grass)

I can run. Which is insane, it was unfathomable to even imagine I could run 1km straight before. I moved out and am currently studying agricultural production and management in Maitland, working on beef stations, dairy’s, sheep stations and racing around on quad bikes and tractors. My zoo keeping career is now actually possible because I can now actually carry a bucket full of lion shit (which gets surprisingly heavy)

And breathing is pretty great too. I can finally understand what all the hype everyone else talked about before. So I’ve given nature the finger and continue to defy evolution. However, knowing me im going to die soon of something really dumb like falling down stairs or getting my head stepped on by a horse so what are you going to do.

Katie BreckenridgeAHLTA memebr

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Once again we are hosting a Bunnings BBQ to raise funds for our association. Please come along and help your fellow members on the day. We are always looking for volunteers to help out throughout the day from 9am to 4:30pm.

Where: Belrose Bunnings Niangala Cl, Belrose, 2085 Date: Saturday, 9 June (Long Weekend)Time: 9am to 4.30pm

Please let us know if you can come along and help us on the day.

AHLTA Bunnings BBQ

Our this years thanksgiving service will be held on Saturday, 23 of June 2018 from 11am at the Sacred Heart Hospital followed by light refreshments in the hospital seminar room from 12PM.To RSVP please please email lslater6@gmail.com or contactLisa Slater on 0439 598 205

AHLTA Thanksgiving service

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Health NEWS

Girl will be able to hear her heart beat inside another childALISHA Kapoor is about to make medical history as Australia’s youngest heart-lung transplant recipient — who will then give her own healthy heart to save another child’s life and become a living heart donor.

ONE day soon, little Alisha Kapoor will be able to listen to her own heart beating inside another child.

She may not fully understand it but the four-year-old is about to make medical history.

Not only is she set to become Australia’s youngest heart-lung transplant recipient but her own healthy heart will then be given to save another child, making her one of only a few living heart donors in the world.

Alisha suffers from a rare condition known as Surfactant C ABCA3 deficiency, which means her lungs lack a protein needed to help them expand and contract.She has spent her whole life in hospital and Dr Chetan Pandit, her respiratory specialist from The Children’s Hospital at Westmead, said she would die within minutes without life support.

“She is only alive because of the ventilation — she is completely dependent on it, so she still lives on the edge all the time,” Dr Pandit said. There is no cure, which means Alisha will need a lung transplant. She has been on the transplant list since March. Any day now she will be flown to Melbourne when a donor becomes available.

Lung transplants were not performed on children under the age of 12 due to the technical difficulties.

“It’s easier to replace the heart and lung together.”

But doctors at the Alfred and the Royal Melbourne Children’s Hospital have now pushed that age down to age five. Even though Alisha’s heart is perfectly normal, Dr Pandit said it is easier to do a heart-lung transplant. Lung transplants are always risky but, in tiny children such as Alisha, the complex connection between the heart and lungs means a lung transplant alone carries a higher risk.

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A heart and lung transplant together from the same donor is safer.

“In someone so tiny, it’s virtually impossible to separate the heart and the lungs. The lungs are technically more difficult to transplant alone as all the airways are so small, so in children, we always prefer to do a heart and lung as a block,” Dr Pandit said. “It’s easier to replace the heart and lung together rather than separating them, it’s better to do them together. They have nearly lost her many times.

“Alisha will be Australia’s youngest recipient, previously the youngest was six.

“Her heart is perfectly normal, so she can give her heart to save another child.”

Alisha’s parents, Nerraj and Roma Kapoor from Blacktown, are thrilled their daughter’s heart could save a life.

They have nearly lost her many times. Most children with her condition die in their first year and the couple has had palliative care discussed with them.

“I feel very good about it, maybe Alisha’s heart will save someone’s life and someone else will save Alisha’s life too,” Mr Kapoor said.

The Kapoors are now all listed on the donate life register for organ donation.

“So many times she has been in ICU and we almost lost her,” Mr Kapoor said.

The family will move to Melbourne for four months when Alisha has her transplant. To help them financially go to www.gofundme.com/helping-alisha.

To register for organ donation, go to register.donatelife.gov.au

Soruce: NEWS.com.au

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

Donation Slip

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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