Real People

Meet some of our friends and supporters who have battled serious illness and disease to share their truly amazing stories of courage and survival thanks to the remarkable medical research and medical teams at the PAH.

2014 3 craig and leann hatfield

Craig and Leann Hatfield

Kidney Story

Craig and Leann Hatfield love each other, but they want to share it around. They have exchanged kidneys – but not even with each other!

Leann's kidneys started failing at the age of 27 and the mother of two progressed to dialysis a year ago when she was 38. Her husband naturally hoped he would be compatible for a live donation but when that wasn't the case, the search was on for an arrangement with another pair to find the ultimate kidney compatibility.

Now Leann and Craig are sharing their love with two anonymous couples who could be from opposite corners of Australia.

"This is really going to change our life. I'm very happy that he was willing to do this for me and for our family," said Leann.

"Being hooked up to a machine for dialysis every second day will keep you alive but it's not living, especially when we have young children."

Craig started the investigation into donating to Leann when she progressed to dialysis.

"I was very happy to donate a kidney to Leann but unfortunately I was unable to donate to her directly. When we heard about the Paired Kidney Exchange, we jumped at it," Craig said.

"I wanted her to have a kidney any way possible, and this was the way to make that happen."

Through the Australian Paired Kidney Exchange Program, a database enables an incompatible pair to be matched to a recipient in another pair. A match could result in two or more simultaneous transplants by exchanging donors at multiple transplant centres across the Australia.

"Most guys give their wives flowers and chocolates; I thought I'd up the ante this year and give her a kidney. That should put me in the good books for a year or two," he said.

Director of Nephrology, Prof David Johnson, said new programs are all about increasing the size of the donor pool.

"The actual pool of live donors who are clinically able to donate is fairly small so paired kidney exchange has essentially expanded the whole transplant program with a new donor group that we previously didn't have access to," he said.

PAH did about five paired exchanges last year with more and more people looking to be involved in exchange.

"There is a considerable shortage of kidneys for donation," said Dr Johnson. "The number of people coming onto dialysis is far exceeding the number of kidneys that are available with only 20 per cent of those dialysing able to receive a kidney and the gap is widening.

"There is an urgent need to expand the donor pool so programs like the paired kidney exchange and donation after cardiac death are improving the availability of kidneys."

With the advent of these new programs, PAH has improved the kidney transplant rate from about 110 per year to 160 per year.

"To continue to increase the options for transplantation, I encourage people to discuss their donation decision with family and friends – donation saves lives."

Find out more

Susan jones

Susan Jones

Heart Disease Story

Susan Jones' blackouts were a mystery until one killed her son. Susan suffers from a rare congenital heart condition – Catecholaminergic Polymorphic Ventricular Tachycardia.

"My children and I have suffered from blackouts since we were kids. Our condition remained undiagnosed until one of these blackouts killed my son Raymond while he was surfing. Not a day goes by that I don't miss my son and think about the high price we have paid.

Losing my son tore a piece out of my heart. Ray's heart is still beating inside his sister Sharron and me. Diagnosis and treatment changed our lives. If we'd had it earlier, it could have saved Ray's.

He was only 26. Sharron and I were referred to the PA and diagnosed with CPVT. Today, we both have implanted cardioverter/defibrillators, which monitor and regulate the heart rate, and help us to get on with our lives. Sharron's defibrillator has restarted her heart 14 times in the five years she's had it.

CPVT affects otherwise fit and healthy people. It causes the heart to beat dangerously quickly under physical exertion or emotional stress. This can result in dizziness, blackouts and sudden death. It is often mistaken for epilepsy and diagnosis and treatment are notoriously difficult. Many sufferers aren't even aware there's a problem, until it's too late.

We are now awaiting the diagnosis of Sharron's baby Jai. There's a 50-50 chance he'll have the condition. Heart Disease has taken a severe toll on my children and I, hopefully research can make a difference."

You can help the PA Research Foundation bring research to life. Help now

Jo barron

Jo Barron

Rheumatiod Arthritis Story

"For the most part, I live my life positively and healthily - but I have a disease that affects hundreds of thousands of Australians – three out of four of whom are women.

It's an incurable disease that sadly carries a stigma.

It's a disease where sufferers feel isolated and don't believe they can ever get better - but it's not depression.

Women put off pregnancy, can't nurse their babies and take care of their families - but it's not breast cancer.

Quite simply it is arthritis - more specifically, Rheumatoid Arthritis (RA). The PA Research Foundation is trying to forever change the face of this debilitating disease and like the cervical cancer vaccine – bring the world a cure.

Never before have researchers been closer to providing a solution to a disease affecting the quality of lives of hundreds of thousands of Australians.

Researchers have discovered a mechanism enabling them to reset the immune system in RA – they have a preventative in their sights.

This mechanism re-educates the immune system and this discovery has led to the development of a rheumatoid arthritis vaccine known as Rheumavax – now in Phase I of clinical trials.

I am one of the many people on the trial who all share the same dream.

My son Jack, is only eight years old but already knows more about RA than the average Australian.

As much as I don't want this disease to define me – Jack understands its limitations. He accepts that my wrist is damaged beyond repair so that playing a game of tennis or ten pin bowling with him are my Everest's.

I was only 28 when I suffered a bout of food poisoning that triggered the disease, resulting in swollen toes and problems walking which ultimately led to a diagnosis that forever changed my life. I've had two arthroscopies on my left elbow and hand, a collapsed wrist and major joint degeneration in both feet that now requires surgery – but I can't afford to be off my feet, away from home and work for three to four months at a time.

Yet like all Everest climbers – I have my Sherpa – my guide on this indomitable challenge is Professor Ranjeny Thomas and through funding by the PA Research Foundation, I can truly say my pain is now constrained and managed.

That is the very reason I am part of this trial. I'd like to highlight that RA does not only affect the elderly, but people of all ages including young children. My pain is real and creates obstacles that don't allow me to give what I would like to those that I love, or to be the mother, daughter, sister, friend and partner that I'd hoped to be.

Please don't let my son remember me saying, "Sorry buddy, I can't do that because of my wrists" or have him grow up so fast he feels responsible to help me do simple tasks that I find difficult or painful.

There is nothing glamorous about RA – it is painful, disfiguring, debilitating and ruining the lives of millions of Australians. But we can do something about it."

You can help the PA Research Foundation bring research to life. Help now

Mick brett

Mick Brett

Prostate Cancer Story

I was diagnosed with prostate cancer after a routine check up in September 2009 and had surgery (radical prostatectomy) eight weeks later. I'm battling on and will soon again start radiation therapy.

"My name is Mick and sadly this is my story.

I say sadly because these are not memories I counted on in defining my life – I wanted stories of my daughter's first laugh, my son's first words – the very first time I said 'I love you" to someone and really meant it. Instead I am sharing with you a day that forever changed my life.

It's as clear today as it ever was - the doctor talking: his lips were moving so I knew that for sure – but my ears were filled with a roar so loud it drowned out all else except for three words pulsating through my brain like a drumbeat.

Thud, thud: you've got cancer; thud, thud – cancer: there it went again. I shook my head thinking it might clear my ears – this can't be happening to me – maybe he's saying something else, I should be listening.

I had heard about prostate cancer in the media so I asked my doctor to include a PSA – prostate cancer blood test in with some others. He told me it wasn't necessary – I insisted – that insistence saved my life.

That insistence brought with it paralysing fear, the nausea of radiation treatment and a series of operations that would save my life. That insistence took me to rock bottom, to consuming depression and fears I had never before faced. No one was concerned when my PSA level was high – the stats were on my side - only 1 in 1000 men in my age group (40-50) get prostate cancer.

No history in my family, check; not high risk, check. But statistics are funny things and I couldn't remember a single one that day the doctor gave me the news. All I could think about was the kids, the impact on them – living, dying, the holidays I never took and then I cried – I just cried.

You see this is NOT an old man's disease. If you have turned 40, you should start this as a routine test annually. If your wife or girlfriend can have a pap smear, the very least you can do is a blood test.

And eat tomatoes – that's a joke from my son. We laugh a lot now but it was pretty tough for a while there. Nick and I share a special bond – he lived through the surgeries, the highs and lows as I came to accept incontinence and impotence – my body so ravaged by the drugs, surgeries and the cancer that just wouldn't release its grasp.

He was only 14, making my lunch and his before heading off to school, knowing I was too weak to even get out of bed. He has grown up too quickly and understands his risk of cancer. I'm worried for him so I remind him to eat tomatoes – they contain lycopene – said to protect against prostate cancer.

There has been a major breakthrough in the treatment of advanced prostate cancer in Australian men.

The Cell Search machine, the first of its kind in Australasia and the Fluorescence Microscope came about with the assistance of the PA Research Foundation and they are now in use - saving lives.

This was a major leap forward in our fight. The machines are being used by the multidisciplinary team clinic at the Princess Alexandra Hospital, the first of its kind in Australia, where specialists from several disciplines work together on a patient's needs.

Men don't want to talk about prostate cancer – so those of us who do and who can, have to speak louder than ever before."

You can help the PA Research Foundation bring research to life. Help now.

Nyree dilger

Nyree Dilger

Breast Cancer Story

"I'm sorry Nyree, but you have breast cancer"

April Fool's Day 2011 was no joke for myself or my family. It was the day I was diagnosed with breast cancer.

I was immediately referred to the PA Hospital where doctors discovered I had Triple Negative Breast Cancer.

When the doctor told me and my family that, ''things look grim'', I just fell apart. How could I leave my 11 and 14 year old daughters, what would my husband do, would he be ok?

Just as I was finishing my chemo treatment I was hospitalised with an infection.

I really thought I was in trouble now. I had fevers, I was weak due to the chemo. I just wasn't sure what was going to happen.

But somehow I managed to pull through and so began radiation therapy things started to improve for the first time and there was a glimmer of hope on the horizon.

It didn't last long… October 2012, I found a lump on the side of my neck.

I was diagnosed with HER 2 + with ER – and PR – components.

Research has discovered that when breast cancer returns it doesn't come back in its original form.

I was told to go home to my family and to prepare ourselves for the worst...

After more rounds of chemo in 2012 and 2013 I decided to get on with living. I have two daughters and a husband to live for. I went back to work and got busy getting better. I started to exercise, changed my eating habits, and started meditation.

Everything was going well and the scans were clear but 6 weeks later it came back. I just couldn't believe it.

I had tried everything, I had changed the way I live, I had used every single bit of positive thinking to pull through and again I felt like I had been defeated. This was my lowest point and I wasn't sure if I would make it. I felt like I had been beaten and the fight had left me.

I still had HER 2 + and so begun ANOTHER round of chemo in June 2013.

In March this year, scans revealed my results are stable but I will remain on treatment for the rest of my life.

As you read this I am actually waiting the results of my recent scans. I'm not sure what my future holds, but with your help you can change the future for other women and their families by supporting breast cancer research.

Research that will one day save the life of someone you know.

Donate to Breast Cancer Research Today

Ian tanner

Ian Tanner

Prostate Cancer Story

Looking back now I believe there were symptoms....

Ian Tanner is no stranger to cancer having lost his dad to bowel cancer, and also a brother in law and sister to law to cancer.

However, when Ian was diagnosed with Prostate Cancer in 2015 at the age of 61 it came as a bit of a shock as he had been leading a very fit and active lifestyle.

"I decided to go to the doctor and have a check-up after our financial planner suggested I should cancel a life insurance policy. I agreed but first decided to go and get a full round of medical checks to make sure everything was ok.

"I was and I wasn't surprised given our family history but the doctors found the cancer early and thankfully it hadn't spread. Looking back now I believe there were symptoms before my diagnosis, but as most men do we chose to ignore them."

Ian remained positive and was fortunate to be approved for a prostate cancer trial funded by the PA Research Foundation and conducted at the PA Hospital.

Doctors at the PA recruited prostate cancer patients to take part in the Prometheus Trial to trial a new, non-invasive way to treat prostate cancer which negates the need for surgery, but also delivers a quicker and more target radiation therapy.

Radiation Oncologist David Pryor says "This means treatment will become shorter and will have a higher chance of getting rid of the cancer.

"We are using a technique called 'stereotactic radiotherapy' which is an ultra-precise means of radiation therapy.

It involves using special technology that delivers radiation to a very, very tight volume and it also uses technology that monitors the [prostate] so if there were any movement, the treatment can be paused."

"When the opportunity arose to be a part of the clinical trial I discussed it with my wife and family and decided this was the better option for me considering my age and the minimal impact it would have on my health, time off work and it also had less side effects," says Ian.

"Radiation therapy started in February 2016. For seven weeks I underwent treatment every weekday evening for an hour. It was painless, and side effects were tolerable – better than expected because of the clinical trial as I had less treatment sessions, and less risk of burning nearby tissue.

"The ironic part is this prostate cancer diagnosis has contributed in a positive way to my long-term health benefits, because I made a few health changes.

"Some people I have spoken to believe that the cure for PC can be worse than the treatment which is not the case. I know some of the testing for PC isn't pleasant but it's better than the alternative.

"I couldn't have asked to be in better hands than with the team at the PA. I wouldn't have had that opportunity elsewhere and I will be forever grateful to them.

"The key to survival is early detection as the treatments available today have come a long way thanks to medical research, which means it's not necessarily a death sentence, you can survive and thrive.

"My future looks very positive, the threat has been lifted and lifestyle changes have been made so I feel like a brand new and improved model. There's nothing like this kind of event to help everyone focus on what's important."

Drawing on his experience to support others, Ian strongly believes in encouraging men to have regular check-ups, particularly if prostate issues run in the family.

Ian will continue to have regular check-ups for a while to track how his is going but his medical report has been given the tick of approval with A's all the way for successful treatment and survival thanks to medical research at the PA Hospital funded by the PA Research Foundation.

Made a donation to Prostate Cancer now

Sophie

Sophie

Childhood Cancer Story

At the age of three Sophie was diagnosed with Neuroblastoma, a cancer that develops in the nerve cells and affects children under the age of five with only a 50 percent survival rate.

"I was in shock, I knew nothing about childhood cancers. When the doctor told me she had Stage 4 cancer I was like, 'That's good, right?"…the poor doctor didn't know what to say and he just sat there staring at me and said, "There are no stages left. We need to act now!" Sophie's mum Kimberly says.

In May 2014, Sophie contracted a urinary infection but the GP told Kimberley that Sophie would be fine but she had a feeling something was very wrong when both of Sophie's feet started turning in as she walked and was in a lot of pain.

"It was a nightmare. It only took a week from her feet turning inwards until she couldn't walk at all. We took her to the hospital for further tests and that's when we received the cancer diagnosis."

The nightmare continued as Sophie endured six cycles of chemotherapy and underwent a major operation to remove multiple tumours as well as her left kidney, but doctors then found her bone marrow was also riddled with cancer.

To attack the remaining cancer, Sophie was sent to the PA Radiation Oncology Centre for treatment.Sophie was one of the first children to have radiation treatment at the centre, which also continues to treat many adults every day. She had to lie in the radiation room all by herself in the presence of big machines she wasn't used to without her mum and dad who could not go in with her. Sophie always put on a brave face.

"Often after they let me in I could see she'd been crying. But it wasn't obvious to the nurses. She was so brave. She didn't shout out, she just lay there and sung 'Let it Go', and the staff would also join in and sing along which was wonderful.

"After months of treatments and many stays in hospital Sophie is now on the road to recovery and back running around with her big brother having a great time. If it wasn't for the amazing PA doctors and research team we would be living a completely different life, one I don't want to think about."

Please donate to the PA Research Foundation and help to ease the fear and isolation children face as they undergo radiation therapy for deadly cancers.

Donate to Sophie's Appeal here

John coulter

John Coulter

Prostate Cancer Story

I was a typical Aussie male who worked hard, enjoyed a great family life and ate reasonably well, and I didn't think I was particularly at risk for prostate cancer," says John.

Thankful to be alive, prostate cancer survivor John Coulter has a fresh perspective on life. He is committed to helping save lives and never misses an opportunity to talk to men about the importance of getting regular check-ups with their GP.

Diagnosed with prostate cancer three months after celebrating his 60 th birthday in 2014, John underwent prostatectomy surgery early 2015 at the PA Hospital and is now responding very well to treatment.

"It was after a routine check-up with my GP that he referred me to the PA Hospital because of the presence of PSA in my blood. The hospital then did an MRI on the prostate and a biopsy which revealed I had a highly aggressive form of prostate cancer.

"The last few months has been a rollercoaster bigger than we could have imagined. I have had loads of tears, fears and dark times. I have oddly enough laughed also. You have to get through your fear of the unknown and try and stay positive."

Prostate Cancer is the most common cancer diagnosed in Australia; sadly, 19,993 men were diagnosed with prostate cancer in 2011, and in 2012, there were 3,079 deaths caused by prostate cancer, accounting for 13% of all cancer deaths in Australian men.

Professor Colleen Nelson, Executive Director of the Australian Prostate Cancer Research Centre - Queensland, based at the PA Hospital, says gram for gram the prostate is the most disease prone organ in men.

"After around age 50, it is common for the prostate to enlarge or become inflamed due to non-cancerous reasons, and on top of those problems, the occurrence of prostate cancer starts to markedly increase," Professor Nelson says.

"In plumbing terms, the urine pipe (more like a hose) runs straight through the centre of the prostate which is a highly confined space. Therefore any prostate problem can disrupt the flow of urine, cause blood in the urine and make men feel urgency y to urinate, especially at night. These are tell-tale signs something is awry with the prostate. Men should discuss these issues with their doctor, no matter how private they may think it is."

"Having regular check-ups and then surgery has benefited my life as it has given me a future I didn't think I would have had.

"I have four children and nine grandchildren, so I want to grow old with them and watch them grow up, and I believe it's important for anyone facing cancer to know you can come out the other side; there is life after cancer.

The most important lesson John has learnt through his experience and one in which he would like others to learn is that men should never feel ashamed about prostate cancer and not get put off by the side effects of surgery.

"I tell anyone who wants to listen - make sure you have your regular check-ups and give as much support to those battling the disease. Prostate cancer is the most common cause of death in men which means a man close to you may die from it.

"This alone is a big enough reason to support the PA Research Foundation's Men's Health Initiative and help raise funds for Prostate Cancer Research at the PA Hospital. Early detection is vital to a good outcome and having a great medical team behind you like I did at the PA is lifesaving."

Find out about more Men's Health Information.

Hege

Hege

Help Parent's like Hege

Hege has Triple Negative Breast Cancer, one of the most aggressive and hardest forms to treat

When Hege found out she had a breast cancer, she was terrified for her two young boys. But even then, she had no idea what she and her family would have to go through.

Hege has Triple Negative breast cancer, one of the most aggressive and hardest forms to treat.

Her doctors attacked it from every possible angle: a mastectomy, then months of intensive chemotherapy and radiation.

But just months after finishing her treatment, the cancer was back in Hege's lymph nodes. Another gruelling round of radiation followed. As Hege was recovering, she had a seizure and was rushed to hospital.

There doctors gave Hege more devastating news: she had a tumour in her brain.

Our researchers are looking at how an existing drug could make it easier to beat cancers like Hege's.

You can help fund an exciting clinical trial of this drug next year and make a real difference for people like Hege, who are running out of options and time.

"The toughest part was seeing the boys trying to be brave for me and trying to fix it. You don't want your kids to suffer but you know there is nothing you can do to change it."

Donate to Breast Cancer Research Today