OXYGEN July 2013

July Edition 2013

2012-2013 COMMITTEE President Monica Jacques Secretary Jaclyn Bourke Treasurer Annabelle Symes Fundraising Team Jaclyn Bourke Linda Watts Monica Jacques Maxine Wignall 2013 QLTSGI Committee are Neil Finney David Bourke Linda Watts Larry Taylor Maxine Wignall Francis Privitera Fraser Scott Jana Piotrkowska THIS ISSUE
Mothers Day Carnival Of Flowers Calendar of Events Photos from a Mate Services of Remembrance Merchandise Mhar, Ross & the Tepace Loyd family Membership Info Advertise with Us Quilt Raffle Fuji Xerox donation Advertising Profile Story by Kylie Lowe

Mothers Day High Tea Review

As 3.00pm approached, last minute touches to our private function room took place. Lavish Mothers Day -themed decorations were strategically placed above each table. Magnificent paper rosettes, mauve and pink helium-filled balloons and silver-card Happy Mothers Day banner heralded the occasion. The once drab space was completely transformed into a opulent ladies sitting room. Guests, both ladies and gents, were warmly greeted on arrival and each received the obligatory name tag and a ticket in the lucky door prize. They were guided to their respective tables, but only after parting with some hard-earned moolah to secure a raffle ticket or three. Management at the Wynnum Manly Workers Sports Club not only donated hire of the room, but had provided a bottle of bubbly per table, so the champers flowed freely and friendly, light-hearted chatter began. Festivities kicked off with a harmless game of heads and tails, which had most out of their comfort zone, but having a bit of fun as well for a few brief moments. There were about a dozen raffle prizes, many donated, each beautifully presented by Monica, Larry and Janet (see photos). Prize draws were staggered throughout the afternoon and there were some extremely happy winners (see photos). At this juncture, I relayed some of my transplant journey, that so far spans nine years on 6th June this year. An auction was then held on the first of two paintings, donated by long-time supporters of the QLTSGI. Margaret Dunn (my oldest sister) is a local artist from the Redlands region and has her work for sale in some of the fashion and homeware boutiques in Cleveland. Marg donated an original painting last year as well and always helps out with the sale of raffle tickets in her area. Helen Lyons, a Support Group member, made the highest bid and was delighted to secure the original acrylic, entitled Falling Leaves, for her daughter. Next, High Tea was served and a scrumptious array of bite-sized treats was presented to each table of six on traditional three-tiered stands. Hire of the High Tea stands/plates was kindly donated by Evelyn Campbell, a tireless supporter of the QLTSGI. She was later presented with a Certificate of Appreciation for her generous efforts. A similar Certificate was also delivered to Margaret Dunn, who was unable to attend the function this year. At the conclusion of afternoon tea, Maxine Wignall, who is a fundraiser on the Support Group committee, kindly shared some of the experiences she had prior to and since her double-lung transplant in 2009.
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It was amazing to hear her brave story and realize just how unique the transplant journey is for each of us. Maxines wonderful husband Dave and their family shared in the Pre -Mothers Day celebrations as well. A second painting (print) depicting a decidedly Parisian-looking street scene, donated by Fraser Scott (also a Committee Member), was presented for auction. Bidding was fast and furious, to and fro, but finally, Kirsty Chen (a Support Group member), was victorious. She was ecstatic with her win, having spotted the painting when she first arrived. With the Lucky Door prize winner announced (see photo), raffle prize draws concluded and a very big Thank-You to club management, chef, staff, those who donated prizes, etc, organisers and of course, our guests, the High Tea afternoon to celebrate Mothers Day came to an end for 2013. It was an enjoyable and successful event for the Support Group and it is hoped it will be even bigger and better in 2014!
Review by Jaclyn Bourke

Toowoomba Carnival of Flowers

Sunday September 22nd
We have our bus trip to the Carnival of Flowers in Toowoomba. Well leave from West End Brisbane and make pickup stops for those wishing to join us along the way (via Ipswich Road and Warrego Highway). We have just 28 places available on the coach so if you would like to be a part of this colourful experience bookings are essential! With visits to 3 magnificent park locations, including Historic Spring Bluff Railway Station and a sausage sizzle lunch in Queens Park, tickets are a bargain at just $30 each. Time permitting well also visit some private prize winners gardens (gold coin donation). To book your place, please contact Jana on 0488 488 225 or email jana_petrovska@bigpond.com
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OXYGEN

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QLD LUNG TRANSPLANT SUPPORT GROUP INC CALENDAR OF EVENTS 2013

September 22nd Day Out to Toowoomba Carnival of Flowers + BBQ Lunch $30 inclusive
October 6th Bus trip to Gold Coasts Mt Tamborine, Gallery Tour + Lunch Full Details TBA November 5th Melbourne Cup Luncheon St Pauls On Leichardt Spring Hill December 7th Annual Christmas Extravaganza Kedron-Wavell Services Club Fantastic end of year event in the Long Tan function room Live Entertainment and Delicious Christmas Buffet Full Details TBA

For further details:

Contact Monica monica.jacques@bigpond.com Or Jaclyn angryant_2000@yahoo.com.au

Advertise with Us
From this issue and every issue onwards we will be offering free advertising space for our members who would like to place an add in our Oxygen newsletter. ship card or donation to QLTSGI. If you have a business card and or a short story about your business, hobby or craft we would be happy to submit it in our quarterly ediIf you have a business, craft tions of Oxygen. or hobby and would like to We will be offering a full page share it with our members free, in all issues of Oxygen dethen this could be another ad- voted to advertising. vertising outlet for you. We do Perhaps you might have a however encourage a discount carer or family member that to our members on presenta- may also like to advertise with tion of their QLTSGI member- us. If you are interested in taking advantage of this offer please scan your business card, logo, story and photos and submit to monica.jacques@bigpond.com
Oxygen Editor

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The Story Behind These Beautiful Cards Photos from A Mate

When my husband Kim Hickey passed away in June 2012, his friend Jeff Blackman an accomplished photographer from Portland Victoria donated these beautiful wildflower photos from his amazing collection. Jeff and Kim had been friends since their teenage years and had shared many good times together. The two men had a lot of interests in common. They both loved the bush and the wildlife, fishing and photography but they especially had a love and respect of the sea. Kim joined the Royal Australian Navy as a marine engineer and Jeff skippered his trawler in the Southern Ocean. Many amusing stories were told by Kim of his excursions with Jeff. Kim and I moved to Brisbane from Cairns in 2011 because Kim was on the lung transplant list and we needed to be closer to The Prince Charles Hospital to increase his chance of receiving a lung donation. As families and friends know this is a very difficult time and is made even more difficult when you leave your home and friends to a place where the only people you know are the staff at the hospital. Kim and I greatly appreciated the support of the QLTSG who were able to provide the emotional support and information that we really wanted and needed. We know that the QLTSG has two major goals. The first goal is support for pre and post lung transplant patients socially and emotionally. The second goal is to buy a house close to The Prince Charles Hospital where lung transplant patients living outside of Brisbane can stay at an affordable price and receive support and information from the QLTSG. Kim and I would have loved to know that a centre like this existed when we were in Brisbane. The first goal is now a reality but due to lack of funds the second goal is still a dream. Help make this dream a reality. Whilst Kim is no longer able to walk in the bush with his mate or enjoy the adventures of the sea, the sale of these beautiful cards will assist the QLTSG to achieve their dream and buy the house near the hospital which will provide many support services to lung transplant patients. Please support us by buying a pack of cards.

Annabelle Symes

These Beautiful Wild flower Cards are sold in packs of 10 with envelopes

Only $10.00

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Queensland DonateLife Services of Remembrance

DonateLife Queensland holds nine Services of Remembrance with one in Brisbane and the rest in the regional areas of Cairns, Townsville, Mackay, Rockhampton, Bundaberg, Sunshine Coast, Toowoomba and Gold Coast. The services are becoming increasingly popular and are an important event for both donor families and recipients in the post donation and transplant process. This year, the Brisbane service, which is in its 22nd year, returned home to the extensively restored City Hall. About 1000 people enjoyed the renovated elegance which added to the dignity of the service. The regional services, though much smaller in number provide an important opportunity for local donor families and recipients to find support and recognition. Cairns Clinical Nurse Consultant Loren Ginders said that not only do donor families and recipients attend, but her service also attracts many members of the community who are not directly involved in but are touched by donation. Ms Coco said the Service enabled transplant recipients and the wider community to publicly acknowledge the generosity of organ and tissue donors. It is an opportunity to reinforce the message to all donor families that their loved ones have not been forgotten, and their death has meaning on a community as well as a very personal level, she said. It is an opportunity to thank them for their precious gifts. This year DonateLife Queensland developed a survey for the attendees to have an opportunity to feedback about the Brisbane service. We asked operational questions as well as invited respondents to suggest ways we might improve the service at www.surveymonkey.com/s/ donatelifeservice One telling remark came from a respondent who wrote: This service is essential for our family as we continue to work through our lives post transplant. It has been a wonderful way for us to say thank you to our donor and their family for such a beautiful gift.

To register to become an organ and tissue donor:

visit donorregister.gov.au to register online x call 1800 777 203 x visit a Medicare Service Centre Did you know one person can save up to 10 lives?

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Our Merchandise

Ladies Casual & Sports Shirts

Available in various colors sizes from 10 to 22 in stock $30.00 each Stainless steel Key Ring $20.00 each Never Give Up Caps $15.00 Support Group dog tags in Blue or Red $10.00 each Stainless steel key rings $20 Dog Tag style $10

Mens Polo Shirts

Available in sizes small, medium, large and extra large in colors RED, BLACK, WHITE and light BLUE Lung Transplant Support Group Inc Polo Shirts . $30.00 each To place an order please email Monica.jacques@bigpond.com

Mhar, Ross and the Tepace-Lloyd Family Roller Coaster

In 2004 Ross moved from Australia to Singapore to take up a new position as Manager Engineering with Singapore Airlines and, more importantly to unite with Mhar, with whom they had just met through the internet. It was a fun time in Singapore with healthy living being a theme of our life there. Ross helped Mhar learn to swim, there was squash to played and we regularly rode our bikes from our home to the runway approaches at Changi Airport. Our visits to Rawis in the Philippines were full of love and excitement swimming at the beautiful Onay beach, running and laughing with the children of the village. In 2006 the contract with Singapore Airlines drew to an end and at first we were going to semi retire with a contract with a local airline in the Philippines. At the same time a contract for a position in Australia was offered and that was accepted. As can be seen from the 2008 image above we were healthy, happy and really enjoying life (Mhar is in red and white on the far right).
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All came crashing down on the night of 25th March, 2010 a trigger had set off a chain of events we were not expecting. With just a few warning signs in 2009, that night in March 2010 was punctuated with dreams of drowning and chest pains. A chest xray revealed lung scarring, and extensive emphysema. Things began to deteriorate and we were referred to Dr Bob Edwards. Dr Edwards immediately diagnosed, in addition to the emphysema and lung scarring, sleep apnoea. Combined with our GP, a pulmonary rehabilitation program was commenced to stabilise the condition. Supplementary oxygen therapy was commenced in December 2010 and in March 2011 the oxygen was in use 24/7 and throughout 2011 the condition appeared to be stabilised. Our two girls who committed to provide for from when the youngest was first born were our biggest emotional supporters in keeping my condition stable and providing that special emotional support for Mhar. In January, 2012 the adoption of Jopai and Marejoice was completed in Mhars name which gave us added incentive to remain stable and enjoy life.

In March 2012 I was admitted to hospital with multiple pulmonary emboli. This was our biggest scare as the first doctor we saw in March 2010 told us that I would probably have two years left. Dr Edwards put our name forward to the Lung Transplant Team at Prince Charles hospital in July 2012. Pretransplant Assessment was carried out at the end of October, 2012. At the end of November we met with the team and were given until the end of January, 2013 to think about the risks. At the beginning of January 2013 I was admitted to hospital for two weeks. It was at that time we feared that I would not see our two girls again. At the end of January 2013 we met with the Lung Transplant Team and they asked us if we had decided if we wanted to proceed which we had. At the end of February we met with the head surgeon who agreed to operate. On the 21st March 2013 we were listed for a bilateral lung transplant. The first call came on 29th March (Good Friday) but the transplant did not proceed. The second call came on 28th April and that did not proceed as the lungs Continued next page

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Ross Lloyd finally had his lung transplant Sunday 5th May after 2 Call ins..
Saturday May 4, 2013 just before midnight, I received a call from a lovely lady from Prince Charles to take Ross to the Hospital as soon as possible. We arrived in the hospital emergency just after 1.30 am, At 2 am Sunday May 5, 2013 Ross was being prepared for possible transplant at 5 am, Ross inform by the doctor that he has a high possibility to have transplant anytime from 9 am...my nerve was over the roof waiting for a good news but while we are waiting I and Ross still manage to laughed and joke about a sound of walking person approaching the room, our eyes are widely open instead sleeping, I think I did manage to. close my eyes for few minutes but my brain is working faster than the speed of sound...at 6 am the coordinator informed us that Ross will be going to the theatre at 7 am....Time went fast and suddenly I noticed nurses, coordinator and doctor are in and out of the room checking him and connect the fluid drip and medication....so intense that I and Ross felt the difference from previous attempts...8am the medical group back to our room for even intense preparation but with a lot of smile and jokes and suddenly the medical group disappeared and a man with the nurse arrived to take Ross to the operating theater...8.30am May 5, 2013 Ross wheeled to the operating theater, as soon as we get

to the front of the theater, a group of nurses with smile, full of energy and very friendly waiting for Ross,...I was given a few minutes to say goodbye, I kissed, hug him and hold his hand very tight for few minutes and left back to the ward...the first 45 minute was the longest 45 minutes I ever had in my life waiting for the final. word....2 hours past and haven't heard a final word but I told myself that No News Means Good News...I waited another few minutes for the good news then just before 11 am I ask the nurse if she can get information from the theater...First info I was given was 99% chance the transplantation surgery will happen but the remaining 1% could still stop the it...in 2 minutes the final word I been waiting was confirmed...2.30 pm had a call from the lung transplant group that Ross operation went really well and on the way to intensive care unit...May 6, 2013 at 10.30 am Ross was awake and ventilator remove and breathing on his own with the new set of lungs which I call it a Gift of Life...had his first walk at 2 pm and first solid meal at 5.30 pm...still in ICU talkative with his sense of humor doing great with high spirit and on his way to recovery... From deep within my heart I would like to thanks to all who gives us support and prayers...especially to the incredible Lung transplant group who work so hard to give Ross another chance to enjoy his life...I salute to all of you...god bless to every one and keep up the good work... The Gift by the Donors family

has given life not just to me but to a special part of their family member who has passed, to Mhar, to our two girls, our families and support network.

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Help us grow our Membership Base

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Our membership has recently g r o w n Benefits of Membership include: Becoming a member will assist the Queensland Lung x Membership Card Transplant Support Group in continuing our momentum x Stainless steel Qld lung transplant support key ring to assist lung transplant patients and their families. Membership is $20 (including GST). Our annual Membership x Access to DVD players and large selection of DVDs to choose from while in hospital Period is 1st July30th June. Please help us grow our membership base by mentioning to your friends and family. Our aim is to increase the overall awareness of our group and by expanding our members this will enable us to share our message and support you pre or post transplant surgery. Please direct your friends and families to our website for more information. which is currently under construction until mid August www.qldlungtransplantsupportgroup.com Alternatively please contact Jaclyn Bourke at angryant_2000@yahoo.com
x x

Discount on hospital television (weekly or monthly) 40% discount on 5 day consecutive all day pass at Metro undercover Parking $48.00 on presentation of membership card. Fresh flowers or fruit after your transplant Phone cards Access to emergency funding Quarterly Oxygen Newsletter Discount on all social events Discount on certain outlets Discount on accommodation Continued support to patients and their families

x x x x x x x x x

The Heart/Lung Support Group Calendar 2013

When: Support Group Meetings first Monday of each month or following Monday if there is a public holiday Where: Extended Care Unit Meeting Room 2 opposite Palliative Care car park outside Breeze Caf Time: 11.30 1.00 pm
We will be encouraging every transplant recipient to attend at least one support group meeting pre transplant and all post transplant patients are encouraged to come to provide you expertise and experience. Coming along to support group meetings is a great benefit for those people thinking about undergoing lung transplant surgery. By sharing your stories, gives them so much more than you can imagine. It gives them hope, and better understanding about life post transplant. That we really do survive, have normal lives and continue to do so. So if you are at clinic on the 1st Monday of the month pop into the meeting and show your support for those about to take the journey. Tea and coffee supplied. Please bring a plate of nibbles / biscuits or cheese / crackers or similar to contribute to the table. August 5th Tai Chi Physio September 2nd Motivation and stress management Jo/ Michelle Social Work / Carers October 7th Transplant Pre and Post discussion coordinators transplant team. November 4th Support network-Michelle/ Jo December 2nd Christmas Party

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Flower Quilt Of Hope Raffle

This Beautiful handcrafted quilt, was created by the dedicated work of the East Ballina Quilters (Aka Sat Arvo Girls) from Northern NSW.. The group consists of Maree Willis, Jane Rooney, Ann Potter, Lyn Anderson, Jan Hayes, Karin Storey, Maggie Hiddle, Maree Smeal and Kathy Crump. Under the leadership and guidance of Maree W and Jane this quilt was born. Made from a collection of fine quality cottons, and carefully stitched with many hours of love and support over a period of 2 years. This beautiful QS Quilt would certainly look amazing in any bedroom setting. Kindly donated to the Qld Lung Transplant Support Group Inc to help raise funds towards our long distance accommodation plan Gasper House for lung transplant patients and their families .The Quilt is valued over $2000. If you would like to Support this wonderful cause, by either purchasing a ticket or by taking a book of 25 to sell to friends and family. Your generosity will help make Gasper House become a reality. Tickets are on sale now ! By contacting Monica on 0417736919 monica.jacques@bigpond.com or Jaclyn / angryant_2000@yahoo.com.au
Tickets $5.00 each

Kindly donated to The Qld Lung Transplant Support Group Inc last month by the Qld State Manager of Fuji Xerox Garry Gray who presented Monica with a DocuPrint CP305d double sided printer to help continue with the production and distribution of the support groups OXYGEN newsletter for those pre/post lung / heart transplant patients who do not have access to email. As well, distribution outlets throughout Brisbane CBD Monica said this will also be a great help with the distribution of the Newsletter to those remote areas in Rural Queensland. Below Monica presents a Certificate of Appreciation to Garry for his kind donation.

were not good enough. On the night of the 4th May (just after midnight) Mhar took the call that was the start of a new life and a commitment by us to care for the lungs we had on loan as a gift from the Donors family. PAGE 11 We are part of a unique family of Recipients and Donors.

OXYGEN ADERTISING SPACE

Mhars post on Facebook - Mhar may not have perfect English but this is near enough to perfect,,,,,,,, @@@GIFT OF LIFE@@@

Able 2 Rock

For Bookings

0411892864

E: thecarlady@optusnet.com.au Phone Karen on : 0413862646

Advertising SPACE

Available
HERE !

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A Dream Come True by Kylie Lowe

On Thursday 9 February 2012 I was placed on the list for a double lung transplant. Having being diagnosed with cystic fibrosis (cf) at 6 weeks old, I have always known that I would never make old bones however the swiftness that my health has deteriorated was overwhelming. I began working as a switchboard coordinator 6 years ago and when I started my job I was full of health and happiness, ready to start a new life for myself. I had just ended my marriage and had decided to create the life that I have always wanted rather than settle for the life that I had found myself in; marriage to a wonderful man but feeling more like his mother than his lover, working only one day a week for pocket money and just a couple of friends because I was supremely shy and didn't make friends easily. Within the space of a few months I found myself in a new job that I loved with huge responsibilities, proudly becoming a single homeowner as I was able to buy my ex husbands share of our marital home and meeting and mingling with new people everyday. I LOVED my life, there were no two ways about it. I LOVED it. I loved whom I worked with, I loved my independence and I loved the large circle of friends that I established because for the first time in my life, I discovered that people actually like me! Yes! They like me for who I am; silly, funny and dorky all rolled into one. And did I party. I had met my ex-husband and become engaged when I was 16 and Michael was 17 then we married at 21 therefore we never really experienced the party lifestyle that our peers did. I found myself in the wondrous position of being free to party and earning the money to fund it as well, yay! Unfortunately a few years down the track I began an increase in hospital admissions with chest infections and my lung function started to decline and not recover even after weeks of intensive iv antibiotics. In my last admission I was given the news that if my lung function continues to drop at the same rate that it has been, I most probably have around 12 months left to live. Since March 2011 I had been undergoing assessment for a double lung transplant and I was told that because I was so underweight I probably wouldn't survive the surgery therefore they would not place me on the list until I was doing naso-gastric feeds at night and I had put on weight. Therefore I commenced sticking a tube up my nose and down my throat, hooking up to a machine and being fed a ultracalorie dense solution overnight. Thank goodness it worked and I put on 4 kilos in a week and I was then placed on the list At 5.19 on Sunday morning 6 May 2012, just 3 days short of being on the transplant list for 3 months, I received the call I had been waiting for:

Having being diagnosed with Cystic Fibrosis at 6 weeks old..

I LOVED my Life ,there were no two ways about it. I LOVED it !

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donor lungs had been offered, however it was very early in the proceedings and there was a big chance that it would be a false alarm. I was already in hospital with a mild infection so I all I had to do was wait. My gut told me that this was the one, there was no false alarm and this was it so while my family and Brad were nervous wrecks all day, both my mum and I knew this was it and we both felt calm and peaceful all day. In fact I predicted through numerology that I would get my transplant this May. I was given the 'yes its a definite go ahead' at 1.00pm and I then showered and hopped into sterile gowns. I was wheeled into the operating suites at 2.00 and I said my farewells to my family at the doors; I was taken directly into the operating theatre. I spoke with an anesthetist and she agreed to take some pictures of my old lungs for me. The next thing I knew I woke up in Recovery with the intubation tube in and I was gesturing for it to be taken out; when it was I was taken to a private room in ICU and I woke up again the next day. I would like to say that my breathing immediately felt good but it was far, far from it. I was woken up by the physio whom explained to me how to breath with my new lungs and then asked me to cough. The only word that comes to my mind and it does not even come close to describing the sensation, is PAIN. The pain I experienced was beyond my comprehension however the physio was wonderfully caring and supportive and had me stand up and then stepping on the spot off the ICU bed, I later walked with huge assistance around the ICU room. I left ICU after 3 days and was in a normal ward for 3 weeks then I went home to begin my new life. It has now been 12 months since my transplant and I can say this: Life is good. I went back to work 3 months after the transplant, which was 3 months earlier than we had planned but I was so bored at home and I missed work so much! The first few months after transplant were a little rocky with a few infections however I have had no rejection at all and I have completely adjusted to my new life. While I was still in hospital recovering from the transplant I wanted to plan some-

thing big to do for the 12 month anniversary so that I had something to look forward to if I made it to 12 months so Brad & I planned on an overseas trip. So on the 1st of May this year we flew to Las Vegas for our big holiday and we eloped at the Little White Chapel; we had planned to get married in Vegas all along so the trip was a combined celebration/honeymoon. We also had a few days in Auckland where we did the Auckland Harbour Bridge climb. Life for me is different to life with just cf; as a cf patient it was all about recovering from the inevitable infections however now it is all about avoiding what can harm me. And it has been a challenge to get my head around the fact that I am now a healthy person. So I'm now 38 years old, married to the man of my dreams with a healthy body and full heart. I am the most blessed woman on the earth.

Kylie Lowe

Outside The Little White Chapel in Vegas