www.findingcures.com.au
Finding cures. Saving Lives.
Jessica Sheerman, double lung transplant recipient
Produced by The Prince Charles Hospital Foundation. The stories in this book are presented unedited, as submitted by the patients.
On the 20th of November 2011, The Prince Charles Hospital Foundation is celebrating 25 years of finding cures and saving lives. To commemorate this milestone we asked the community to send us real life stories of people who can say “I lived” thanks to The Prince Charles Hospital. Included in this book is a selection of stories from the “I lived” campaign which we are sending to our Patron, His Royal Highness Prince Charles, in recognition of our journey.
Kate Ashton Chief Executive Officer The Prince Charles Hospital Foundation 627 Rode Road, Chermside, Qld 4032 www.tpchfoundation.org.au
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His demise was not heart related, but as a result of a traffic accident... to still be around forty years after your first lot of surgery is remarkable. Back then this was new technology and as a result of research, skilled surgeons, The Prince Charles Hospital and patients like Joe, it has now become routine with bypass surgery, valve replacements and transplants
Joe’s Story
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As Secretary of the Prince Charles Hospital Heart Patients Support Association Inc. (Heart Supp), which is a group that started in 1989 to help heart patients cope with the trauma of heart surgery and became “Heart Supp” in 1997, may I pass on a true story of a humble, simple man, Joe Adriaansen. Joe, a quiet, unassuming, small in stature, hard working family man was born in a small town in Holland. He was a prisoner of war in Belgium working in one of the labour camps that supplied food to the armed services. He married and then with one child and one on the way, he migrated to Australia more than fifty years ago. He had his first Heart tissue valve surgery in 1967 which lasted him until 1978 when he was about number 6 to have a mechanical valve replacement done. After both lots of surgery, he continued on with his job as a bricklayer, soccer coach and lawn bowls player until his retirement in 1997 when he joined “Heart Supp”. His demise was not heart related but as a result of a traffic accident. He was 88 years old. He is one of those people who had touched the lives of many. We look on him as sort of a pioneer in the field of heart surgery to be still around forty years after your first lot of surgery is remarkable. Back then this was new technology and as a result of research, skilled surgeons, The Prince Charles Hospital and patients like Joe, it has now become routine with bypass surgery, valve replacements and transplants to name but a few. On behalf of “Heart Supp” may we thank Joe for his contribution to the many patients that he helped over the years. He is survived by his wife, four children and several grandchildren and we wish them well for the future. “Heart Supp’s” mission is to support patients, or relatives of patients, suffering from heart problems. We do this by visiting the before their surgery, explaining the procedures and answering any questions they may have. We also visit after their surgery to see how they are coping and give guidance with their recovery. Our main message is that there is life after heart surgery and former patients may join our group and give back a little of the care we received when it was our turn.
Cheers, Bevan Dore Secretary, “Heart Supp”
Norm Wyndham has been a passionate advocate for the residents of McDowall since being elected in 2004 and again with an increased majority at the 2008 election. During his first term in Council, Norm has acted as the Lord Mayor’s Spokesman for Council’s Community Services Committee and was a member of the Environment and Sustainability Committee. Norm is also the Chairperson for Clean Up Australia Day. This is Norm’s Story.
Cr Norm Wyndham Councillor for McDowall
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He did an ECG and found my heart was all over the place. He sent me straight to The Prince Charles (Hospital). They did various tests, and within a few weeks admitted me for repair of the mitral valve. Dorothy’s Story
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Dorothy Patricia Harris - Stafford
A Modern Day Miracle... Heidi’s Story I was born on Wednesday the 30th of July, 1975. I was the third child to be born to Max and Meredith Moore and their first daughter. They named me; “Heidi Belinda Moore”. As all newborn babies, the first few weeks can be a little hectic but Mum was particularly concerned I was not drinking enough when we returned to the clinic a week later. They told her not to worry and it was probably just wind. Her concerns continued until at 6 ½ weeks, my mother took me to Dr Bruce Richards, a Paediatrician who did many tests and diagnosed me with a Congenital Heart Disorder. At 7½ weeks I was admitted to Prince Charles Hospital for a spot on the lung and this was the beginning of an intense two year journey. At 16 weeks, I returned to hospital for an operation to close off the Patent Ductus (Friday, 21st November 1975 at 1pm). A Sister returned to take my parents to post-op where they were told the hole that they closed was very large. Clearly this was nothing but a modern day miracle considering Dr Gross performed the first successful operation in 1939.1 Catheter-based closure of the structure was first performed in 1971. As cited in www.emedicine.medscape.com/ article/904895-overview This surgical procedure first performed just four years prior to my surgery. I was discharged on Sunday 30th November and all went well until Christmas Day when I became sick with temperature, vomiting and a cough. Early in January 1976, I was sick with pneumonia. Early March 1976 I was sick again and in heart failure for the second time in five weeks. Upon consultation with Doctors, (Dr Maruff and Dr O’Brien) it was decided another operation would be necessary, Open Heart Surgery. My operation was scheduled for 25th May 1976, after signing consent papers my parents were informed that I was sick again Pictured: Heidi and her family with temperatures. My operation was yet again cancelled. I was very sick for nine days and lost 18ozs. I was weighing 10lbs 10ozs at only 10 months of age. On Wednesday 9th June, surgery began at 1pm and finished after 5pm. Dr Greg Stafford, who was my main Cardiac Doctor, explained that the hole was the size of a ten cent piece. When my parents were allowed to see me they said that I was a beautiful pink colour. My recovery consisted of dedicated doctors, nurses, physio and other staff as well as a lot of prayer from many people. Over the years, I have had regular yearly checkups at The Prince Charles Hospital. I am now 35 years old and I have no health complaints. I am married with 3 children, Isabella 8½ years, Annaliese 7 years and Scarlett 2 years. I now live at the Sunshine Coast and work at Buddina State School as a Teacher. I am forever thankful to all the Surgeons and staff at the Prince Charles Hospital for their dedication and commitment to making a difference in someone’s life. Miracles do happen... I am one of them!
Heidi Taylor - Sunshine Coast (letter submitted online)
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I had the Aortic Valve replaced with animal tissue, and two by passes, with tissue from my leg and chest... I am so very grateful to Dr Garlick and his team for their unimaginable skill and dedication to their profession. Joan’s Story
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I refused to give in.
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Jessica’s Story
“She was swimming at the beach on Saturday, admitted to the hospital on Thursday and then the following Saturday the hospital told us to come and say goodbye,” says Jessica Sheerman’s mother Marion. After coming to Brisbane to support mum Marion through breast cancer in 2005, Jess Sheerman found herself unexpectedly needing a whole lot of family support too. Unless you saw the fading scar, you wouldn’t even guess Jess has been sick, let alone had had replaced what her surgeons called the worst lungs they’d ever seen. For 22 years Jess lived a perfectly normal life. For her 21st birthday she got a round the world ticket. She travelled to Thailand, America, and Fiji. Her friends thought her occasional cough was due to asthma. Even her best friend didn’t know Jess was born with cystic fibrosis, the world’s most common life threatening genetic disease for Caucasians. “I don’t want people to think of me as someone who’s sick,” Jess says. “I used to get sick and do IVs but I’d work it in and no one knew I was sick. Friends I had for years didn’t know.” During her 2005 holiday, Jess developed double pneumonia and pleurisy and was admitted to The Prince Charles Hospital. She crashed on Christmas Eve and two weeks later was listed for double lung transplant.
Pictured: Jessica Sheerman with butterfly
After seven weeks in The Prince Charles Hospital, Jess was able to return to her parents’ home in Brisbane. She spent 18 months trying to get healthy enough to travel home to see the friends who had farewelled her for her brief holiday.
The gifted artist started painting again and was invited to enter an exhibition in June 2008. From that show, she was one of 10 artists chosen to paint some pieces for another gallery later in the year but was already having trouble sitting for the hours required to do her work. In late 2008, 26-year old Jess got pleurisy again and was re-listed for transplant. She was admitted to hospital where she had constant physiotherapy during the day to keep her airways clear. “Everyone was great. The physios were amazing,” she says. “I didn’t eat for weeks. I was tiny, only 34 kilograms.” While she slept overnight, Jess would literally start to drown as fluid filled her lungs. She had a special bed that folded into a chair which could be lowered enough for her to get in and out. Jessica’s aunt, uncle and grandmother all flew over from the UK to give support. “They definitely gave me a lift and helped keep me going,” she says.
For three months Jess held on, getting weaker every day. She was coughing up blood, but had torn too many blood vessels for them to be repaired. The hope of a transplant kept her going every day. “I would bet with myself, gamble. I knew if I gave up it could come the next day or the next week. I just had to hold on one more day,” she says. “You have to be stubborn. You need to hold on and refuse to give in.” A few days after she was told she wouldn’t survive another week, Jess was told at 6am on Sunday she was fasting. She assumed another test was going to be performed. At 6.30am, she was told she was having her transplant that day. Jess was prepped and sterilised. Because she was fasting, she was unable to drink which made it hard to clear her airways. For 18 hours, Jess and her family waited, unable to touch each other due to the sterile bed. She was sterilised twice because of delays, still unable to eat or drink because it could be any minute. “My bed was like a stage. It was like everyone was just waiting for the show to start and I was the star,” Jess says. Finally it was time. They wheeled Jess into surgery and her family had another eight hours to wait to find out if she would survive. Each member had tasked themselves with jobs to pass the time. They cleaned her room out, gathering up four months worth of home comforts. Anxiously they waited at The Prince Charles Hospital for surgeon Graeme Hart to deliver the news they needed. When he came out he told them he couldn’t believe she’d made it so far with such bad lungs. After surgery, the anaesthesiologist visited Jess to ask if she remembered what she’d said as she went under. “He said just before he put me out, I pointed my finger at the surgeon and told him, ‘Make the cut as low as possible. I want to wear a low-cut wedding dress!’” Because she was so sick going into the transplant, Jess’s recovery has been rough. She had lost her muscle mass and was weak. After needing so much salt and fat in her diet to keep her lungs working prior to transplant, she’s now adjusting to the discipline of the post-transplant diet. Jess is also adapting to being healthy again. She’s considering studying bookkeeping and her plan is to eventually start a children’s art class. Having already received a commission, Jess has started painting and is wondering how her recent experiences will affect her style. She says The Prince Charles Hospital’s great care and fantastic people make it the best. “This will always be my hospital. I couldn’t go through it all again starting from the beginning anywhere else.”
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I had been transported by ambulance to Prince Charles from Ipswich General following a relapse after intensive care in about November 1984. The particular bed I was in was one of four assigned to a screened area in which a convex mirror was mounted high on a wall so that Sisters in the nursing station could monitor all four patients. By looking up into this mirror, one could see part of the next bed and its occupant over the top of the adjoining screen. Came the morning inspection by senior medical staff. The team approached an elderly man in the next bed who was clad in the memorable white surgical stockings. “Good morning Mr. Smith. How are you today?” “Not so well Doctor.” was the reply. “Why, Mr. Smth” said the eminent surgeon, “Do you have pain?” “Yes.” the man replied. The doctor asked, “Where do you have pain Mr. Smith?” “In my big toe.” was the reply. “Mr. Smth!” the doctor thundered, “I am a heart surgeon. What you need is a toe surgeon. Good morning!.” And with that the entire team moved along onto the next patient. The rest of the tiny ward was rolling about laughing, and I never did find out if Mr. ‘Smith’ received treatment for his ailment. There were other little humorous asides during my visit, and the staff were above and beyond what one would normally expect in an intensive care unit.
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James John Marriner - Bribie Island (letter submitted online)
“ I’ll never forget the night I nearly died laughing!” I had suffered from Tachycardia most of my life but I did not know what the problem was until I was 60 years old. Every year or so, my heartbeat would soar to 220 beats or so - for no apparent reason. I would feel faint and dreadful but by the time I got to the doctor it would have stopped and no-one was able to detect what the matter was. Had I been making it up? After living in Papua New Guinea for twenty years we bought a house on the north side of Brisbane. The attacks continued but I never received treatment in time to record the heart-beat – and thus the diagnosis. Then came the evening I shall never forget because it was the night I nearly died laughing, but it was also the night I became a patient of Prince Charles. The evening began like most evenings. I was at home peeling potatoes for our family when my heart began to pound and vibrate until I felt my chest would burst. My brother who was a vet was sitting opposite me. When I complained about the pain, my son helpfully suggested I get down on all fours my vet brother would know where all the body parts were! Soon I was stretched out on the couch and my daughter produced a pair of old socks with large holes in them which she put on me as I was complaining of cold feet. My husband found a sheet and covered me with it right over my face as well.
Tachycardia is a fast or irregular heart rhythm, usually more than 100 beats My brother protested ‘Don’t cover her face - she hasn’t carked it yet!’ per minute and as Although I was gasping for breath by this stage I couldn’t stop laughing at their antics. The ambulance was called and duly arrived. My husband said to many as 400 beats them. “You must take my wife to the Prince Charles hospital!’ per minute. At these “No!” They answered, “She must be a previous patient to go there” elevated rates, the My husband insisted and I was duly whisked off to the Prince Charles. In the ambulance I was still chortling about my family and my heart was still heart is not able vibrating badly. As we were entering the emergency area, the ambulance to efficiently pump men implored me. lady, take that smile off your face. We’ve done a lot of hard working oxygen-rich blood to “Please to get you to Prince Charles, please look sick!” your body. So with some effort I complied with their request. This time my heart was still racing when they took the reading and diagnosis of tachycardia was forthcoming. I was given an injection to fix the problem and that evening was back home. But I needed follow up treatment and Dr Masterton put catheters up my arteries into my heart and burnt off the offending tissue. I had to return for a second lot of treatment. During the procedure I had to be awake and could see the catheters on the TV screen poking around my heart. I thought I would rather watch the cricket! Still it was worth it and I shall be ever grateful to Prince Charles Hospital for fixing my fluttering heart. Now many years later I have never experienced the rapid heart beat again. Thankyou Prince Charles and Dr Masterton but I’ll never forget the night I nearly died laughing!
Mary Mennis MBE.
Every scar tells a life story. Alison’s Story
The scars and missing toes are the reminder of how close she came to dying. “The night I went in to The Prince Charles Hospital they put me in a coma and then it was touch and go for the next four or five weeks,” says Alison Schuttloffel. “I didn’t ever anticipate it was going to be like that. It was shocking really because no one knew swine flu was that bad.” The 37-year-old Brisbane mother of five was sick for several days in July 2009 before realising she might have swine flu. The pathology backlog due to the pandemic meant she was sick for about 10 days before being hospitalised. Although she didn’t look particularly sick, Alison’s kidneys and liver were already struggling when she was admitted, she had pneumonia and very little lung capacity. Asking her mother to turn down an imagined heater in the car seat on the way to the hospital was the last thing she remembered until the end of August. “I spent 52 days in The Prince Charles Hospital but I don’t remember about 90% of that time,” Alison says. “I had memory loss due to induced coma. It doesn’t feel real. It’s like you’re looking at a picture. It’s like I wasn’t really there.” Alison was treated with ECMO – extracorporeal membrane oxygenation – which took her blood through a machine to force extra oxygen into her heart and lungs. She suffered frostbite on her hands and feet, causing some of the tissue to die. “You can survive without hands and feet,” she says. “They had to focus on my heart and lungs to keep me alive.” Husband Alex stayed by her side while she was in an induced coma for five weeks. Alex was told many times that Alison was unlikely to survive the night. There were times ICU staff sent Alex home to rest after days not leaving her bedside. The couple’s five children, aged from 2½ to 11 years old, remember needing gloves to visit, they were laregly protected from the severity of Alison’s illness. “I think my four-year-old son was greatly affected by it,” Alison says. “He would say ‘You held my hand but you didn’t talk to me, Mummy.’”
Alison’s own memories of her seven and a half weeks at The Prince Charles Hospital are fragmented and fuzzy. She has some recall of physiotherapy, being on the tilt table when she wanted to lie flat, of terrible hallucinations and of hating rehabilitation. Alison returned home in mid-September and was running her mobile hair extension business again by October, initially from her wheelchair. “I just wanted to get out of there and get home,” she says. “I’m not a hospital person. That’s probably why I had problems getting in there in the first place. I didn’t want to go to hospital hence I was so far gone by the time I got here.” Until December, Alison had twice-weekly physiotherapy and excruciating podiatry sessions to remove dead flesh from her toes, so painful she required anxiety medication and painkillers to get through the treatment. . “My toes were like they’d been dipped in tar,” she says. “It feels like you’ve got ants biting your feet because all the nerve endings are healing. I would have to shake my feet like a cat on wet ground.” Although she doesn’t really remember the experience, Alison is grateful to the hundred or so people who treated her in ICU, in the wards, and in rehabilitation. “Thank you to everybody for putting up with me and actually saving me and getting me here today,” she says. “And here I was just thinking I’d have an upset stomach for a couple of days and I’d be right. But a week and a half later and then 52 days later I woke up in The Prince Charles Hospital.”
Pictured: Alison after her remarkable survival
“I am alive today because of The Prince Charles Hospital” Desley’s Story
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Do I have Prince Charles to thank for my life, and years of my life? You bet! So this is my story in brief. Margaret’s story
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It all started on Friday 10 May 1996 when this 52 year old professional working mum, who walked, swam, sailed, danced, line danced daily, and thought she was the fit and healthy girl, ended up in an ambulance with sirens from Sandgate to Prince Charles. I got up that morning and did the regular run with my little pom Nibs. Then, feeling like I was running on adrenaline, I thought I would climb the ladder, fix something on my little renovated cottage, do the other morning chores and then get dressed for work. Oh dear, look at the time, running late, so lock up, into the car, drive to Sandgate, run for the train, hop on board, hop off at Brisbane, and better do a quick jolt through Post office square to Riverside Centre, the working place. It was on that little part of the journey that I started to feel not too good. Got to work, told the girls I didn’t feel too hot, went to sit in the toilet. I must have looked a little worse for wear as they kept checking on me. Do you want us to take you to the doc downstairs? No, get me a cab and I’ll go to my doctor at Brighton. Again they must have taken in my appearance so they took a work car, one girl drove, the other sat in the back with me. I remember, walking to the car, driving in the car, getting out at my doctors, and being told I had to wait three quarters of an hour to see her. I remember telling my work mates to please phone my old close next of kin, two sons, one working in Sydney, the other in the Navy on a ship off NZ. I remember sitting in the doctors with sweats and maybe pain, but eventually I was in the room, and my long time doc telling me that “she was sorry to tell me but the ambulance was on the way as I was having a heart attack.” I remember so much about my entry to PC, the doctors / specialists and their questions, and help and the assistance in support and advice for me and my boys. The Navy was so great. The nursing staff were my rod. I had had the biggest shock in my life and within a day had lost my confidence and lost my dreams of future. Just before I left those first days / week there, I remember asking one male nurse “how will I know it won’t happen again, how can I have the ability to walk around the block again?” He said “just listen to your body my darling!” To which I thought “garbage – how can you listen to your body? Yes I was admitted a couple of times again in the following six weeks – but only to find out I was having panic attacks with loss of self confidence. I was a lucky one who came into for extra tests, saw the specialist and was told I didn’t need any op then, but I had to review my lifestyle and start to take care of ME. I remember in those recouperating weeks considering my life and one a few occasions looking upward and saying “please god, let me just see my boys progress in life a little more, just give me a little more time with them.” Well I did what I was advised to do and did review my lifestyle. I learnt some of the reasons of why I had pushed my body too hard without dealing correctly with things in my life. I got to understand what the nurse had told me, and I was able, and still able, to listen to my body when dancing and sit down when needed. I am now the privileged 66 year old grandmother of three beautiful little girls, 6,4, and 2 and have seen both my sons grow up, succeed in life and their professions and I wake up each day thankful for the ability to have that extra time. Yes I am the lucky one, I still walk, dance, dance on stage with the local U3A, swim, garden, and ride my trike!! Around the block like “queen bee”. Yes I am the lucky one, and yes when I do wake up each day, I am thankful to those above, and more so I am so very thankful to Prince Charles and those who gave me a second chance in life. Thank you from the bottom of my damaged but still working heart for just being there for me that day.
Margaret Ansell
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1996 I went to my doctor with chest pains, had ECG, told I had a good heart beat, indigestion. 1997 went back with chest pains, had ECG, told something was wrong would have to go to hospital. 10 days later still in hospital thinking I only have indigestion, and after stress test then angiogram and eco test, told I have two arteries blocked 100% and one 80% AND a clot on my heart. triple bypass needed, couldn’t stay waiting on the public list so paid and had my operation three months later. That was 13 years ago, I was 46 years old, I have just had an eco/stress cardiogram last week,doctor says all looking good. I heard about this web site while I was doing my hours morning walk, a have an old head radio to listen to. So thanks to doctor chan, this is my story .
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Rhonda Badrick - Wynnum West (Letter submitted online)
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The Prince Charles Hospital Foundation and Me Alison’s Story
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Last year (2009) I had my second heart transplant. I had my first in Melbourne in May 2000. We moved up here for my husband’s work.I started to go down hill but did not know what was wrong with me. After more biopsies and angiograms they found that I had vasculopothy and that the only way I was going to live was to have another heart transplant. (If I could get one) I waited nearly 11 months when we got the call to come into the hospital and I was really “running on empty” by this time. I had my transplant and it was only the excellent skill of the surgeons Bruce Thompson and Peter Tesar that I am here today. I died for eight minutes whilst they were trying to take the old heart out. I was unwell for about six weeks in and out of hospital and hve been “well” since then. The heart transplant team and ward 1B are the real heros in this story because without the skill and dedication of all these people I would not be here today. I have had three other open heart operations,about sixteen angiograms, six pacemakers and am still alive to tell the story. Forget about politicians and sports people being Australian heros it is the families that donate loved ones organs in their time of greatest distress and the surgeons, cardiologists, nursing staff and other medical staff (including the physio’s who are really tryng to help not hurt you) Thank God for Organ Donation and the Prince Charles Hospital and its wonderful team that help people like myself who otherwise would not be here. THANK YOU EVERYONE!!!
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Lynnette Frances Knight - Coombabah (letter submitted online)
Queensland’s 300th heart transplant recipient Keith’s Story Twenty years after he was told he’d need a heart transplant, Keith Narramore became the recipient of Queensland’s 300th donor heart. Good heart failure treatment, exercise and determination allowed Keith to reach the still young (especially at heart) age of 58 before he could no longer postpone the life saving surgery. When he was 34, Keith had the first of three heart attacks. A few years later he got a bug which weakened his heart to the point where he needed three weeks in hospital before being transferred to The Prince Charles Hospital for transplant referral. At the time he was told he might be able to delay the need for two or three years. “I said to myself ‘no way in the world’. I was only 41 at the time,” Keith says. “So I got myself fit and with medication and exercise, I kept ok.” A defibrillator gave him another six years before he was relisted for transplant mid 2008. Five months later, thanks to the generosity of his donor and their family, Keith helped The Prince Charles Hospital reach its milestone of 300 hearts. Already an avid boxer, runner and weight lifter, Keith plans to buy a boat so he can finally get back to fishing.
Pictured: Keith with the catch of the day!
At 78, Lawrie Rodgers wasn’t expecting to have any new additions to the family. And then his daughter Claire announced she had finally fallen pregnant. “We never expected to see a granddaughter,” Lawrie says. “When Claire told us she was pregnant we couldn’t believe it. It’s changed our life!” Dedicated to spending as much time as possible with nine-month old Sarah, Lawrie is still finding time to continue his commitment to volunteering with Heart Support, the group which shares their personal stories with heart surgery patients. Lawrie joined Heart Support after his bypass 12 years ago. “A lot of patients can’t believe you can get back to living a normal life again after major heart surgery,” says Lawrie, now 79, who is bouncing back again after a valve replacement this February. “It makes you realise you’ve got to put more into your life. You realise this time is precious and you’ve got to use it.”
Pictured: Lawrie and his Granddaughter, Sarah
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I lived to be a grandpa!
Lawrie’s Story
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I would need a VALVE IMPLANT because the other one does not close properly and no blood goes to the brain.
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Lilly’s Story
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In 1993 I had a hemorrhage from my lung
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Geraldine’s Story
Geraldine Price
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My story begins july 15 1965. As a new born it was discovered that I had a coarctation of the aorta and a hole in the centre wall of my heart. As this type of surgery on kids was in it’s infancy it was decided to wait until I was strong enough, 8 years old, to do the operation. Dr’s O’Brien and Stafford repaired me and now I’m 45 years old, married , 2 kids, and living a great life. thanks Prince Charles Hospital.
Peter Bakker - Toowong (letter submitted online)
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I had just given birth to my first child a Boy whom we called Brodie James, we were so excited, my pregnancy was a dream pregnancy and I had a really quick labour and easy delivery with no complications. I thought to my self this giving birth and having babies is easy. The next day when Brodie had his doctors check up my world came crashing down. I was told that my tiny little beautiful baby boy had a heart problem and may need surgery. I stayed in hospital for a couple of more days, so that the medical staff could keep an eye on Brodie to see how things were going. But it was decided that Brodie needed to see a cardiologist at the Prince Charles Hospital ASAP. We had our appointment and we were told that Brodie had 2 holes in his heart 1 in the Atrium and 1 in the ventrical and a pulmary stenosis. Of course this was the scariest thing I had ever heard I had no idea what this meant and all I could think was my little baby boy was going to be taken away from me. I thought that I would not be a mum and I would not see Brodie grow up. I was so frightened and I pretty much went into shut down, I could not cope. With the reassurance from medical staff, nurses and family and friends, we made it to the day that Brodie finally had to have his surgery. It was an early start and a long wait whilst my baby had his surgery.
Deanne Swinton - Carseldine (letter submitted online)
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“I knew I wouldn’t get another chance” Graeme’s Story
Dehydrated and cramping, he pushed on, drawing on hidden strength to make it across the finish line. With five years of triathlons under his Karate black belt, Graeme Fulton knew he couldn’t pass up a lottery entry into the World Iron Man Championships in Hawaii, even though his heart valve was deteriorating. Graeme has been a regular at The Prince Charles Hospital since he was 12. He was born with a narrow heart valve and had a valve replacement in 1995. The active Toowoomban has been fortunate to have no rejection and no need for ongoing medication. Returning home after years working in Mt Isa, Graeme decided to get back into sports. His first major undertaking was the 10km run at the Gold Coast in 2003, where he was inspired by the marathon runners. “Mum wasn’t thrilled about it!” he says. “The marathon ended near the finish line of the 10km run and I saw all these people coming in and thought I’d never be able to do that.” Three years later, Graeme competed in the Gold Coast Marathon, coming in just outside the top 300. The following year he entered the Australian Iron Man Championships and finished 800th out of a field of 1600. To compete at the Hawaiian event, participants need to qualify in the other national events, but there are also 50 lottery spots offered. Graeme entered and was thrilled when he won the chance to compete. “My heart valve was deteriorating but I knew I wouldn’t get another opportunity to compete in Hawaii,” he says. “I made a special appointment with Dr Pohlner at The Prince Charles Hospital before the race. He said I’d be ok, as long as I didn’t make a habit of it.” With the race having moved to the end of the Hawaiian summer, Graeme had to brave Toowoomban winters to train at least five hours a day. When the weather got too bad, he went to Townsville for three weeks to acclimatise. On his surreal day competing with the professionals, Graeme started at 7am, fit and ready to take on the other 1799 competitors. After gaining an excellent 900th place in the 3.8km swim, things started to unravel. Somewhere along the way he lost the salt tablets meant to stop cramping. After tackling the 180km cycle, Graeme started having chest pains during the full marathon and and couldn’t breathe. He slowed down to a walk for an hour managed to slowly increase to a jog and finally ran the last 10km into town. Graeme finished the race in 12 hours and 53 minutes, coming in at number 1292. The winner, also an Australian, finished in just over eight hours. “He was lucky I let him win on the day,” Graeme laughs.
Trevor’s Story Getting dressed in the morning took Trevor Carr half an hour. Struggling to breathe, he needed to rest after putting on his shirt, his pants, his socks. Even in the shower he had to hold himself up and take a break before reaching for his towel. But knowing baby William, his first child, was on the way gave Trevor the strength to keep going while he waited for a double lung transplant earlier this year. Born with cystic fibrosis, which affects one in 2500 babies, Trevor was extremely sick as a child. In and out of hospital, he credits his parents for keeping his airways clear, giving Trevor and his sister physiotherapy for four hours a day. “They got me into swimming when I was about five,” he says. “When I was sick, Mum would pick me up at lunch from school to do physio and take me back.” Managing cystic fibrosis requires a high calorie diet and Trevor had malnutrition problems as a child. From the age of 12 to 15, he had a nasal gastric feeding tube. About that time he suffered a severe fungal infection in his lungs which nearly killed him. Then for about a decade, Trevor was relatively healthy. He played golf, went fishing, surf-skied and coached softball. In his 20s he started primary school teaching and took a job in a remote community in Cape York. “I enjoyed the lifestyle, the fishing,” he says. But after a year Trevor’s illness worsened and he returned to Brisbane where he was close to his doctors. In 2001, Trevor met fellow teacher Natasha and in 2006 they were married. Meanwhile, Trevor’s illness was getting progressively worse, and then he rapidly deteriorated. About five years ago he had to move to a part time job in curriculum development, leaving the classroom he loved. “It took ages to walk 50 metres,” he says. “All my energy was spent concentrating on breathing.”
Pictured: Trevor and his son, William
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My baby son gave me the will to live.
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One of the effects of cystic fibrosis can be infertility. Trevor and Natasha underwent a gruelling IVF process with several failed attempts before Natasha finally fell pregnant.
On his birthday this March, Trevor was referred to Dr Peter Hopkins, the Director of the Queensland Centre for Pulmonary Transplantation and Vascular Disease at The Prince Charles Hospital. By that time, Natasha’s pregnancy was more than half way along and they were both still working. It was only a few weeks after being listed that Trevor’s transplant came through. He spent a fortnight in hospital, with Natasha now overdue. The excited ward staff worked out a plan to help Trevor be present for the birth, but he was discharged just nine days before 11 pound William made his appearance. “The baby spurred me on,” Trevor says. “There’s a whole more to live for with a baby coming.” Having only known Trevor since he’s been unwell, Natasha is amazed at her husband’s rapid recovery. “He’s been sick the whole time we’ve been together,” says Natasha. “Now he’s lifting the pram and carrying William.” “I can’t believe how he survived on so little breath before,” she says. The instant relief provided by his new lungs have Trevor chomping at the bit. He’s got a huge list of things to do, including getting back to the classroom, seeing his beloved New York Yankees play a home game and learning to play golf properly. “I haven’t been able to go to the beach and swim,” he says. “I’d love to take a four-wheel-drive trip to far north Queensland.” But most importantly, Trevor’s now able to spend time with his new son, and his wife Natasha whose love and support never wavered throughout his illness and in post-transplant recovery. “The world is my oyster,” he says. “I can do anything I like.”
The Prince Charles Hospital Foundation is the charity which supports lift changing research and care at The Prince Charles Hospital in Brisbane
Telephone: (07) 3139 4636 627 Rode Road, Chermside, Qld 4032 www.tpchfoundation.org.au