Transplant recipients ready for games

WHEN Jennefer Penton’s primary school classmate gave a news presentation about her uncle undergoing a heart transplant, Jennefer failed to see what was so unusual.

‘‘So?’’ she interrupted.

‘‘My dad had a heart transplant, my grandad had a heart transplant and all my uncles and aunties have had them,’’ she announced to the classroom.

The next day Jennefer’s parents were called into the school to discuss her new fibbing habit. But she hadn’t fibbed. Her stepfather Brian Penton, who she now refers to as dad, received a heart transplant in 1994 and her biological grandfather was also a heart transplant recipient.

As for the aunties and uncles, this was how she referred to close family friends from the National Transplant Games. 

Jennefer and her sister Jessica are now in their late teens and Brian said for most of their lives his daughters had been surrounded by people with transplants.

This circle of friends is largely from the transplant games, a biennial event where people who have had organ and tissue transplants come together to compete in sports. Nabiac resident Brian has regularly attended the games since 1995, competing in cycling, shooting and volleyball, and said those involved became ‘‘like one big family’’.

‘‘We’ve all been through the mill,’’ he said.

‘‘And it’s not to get together to whinge or to share symptoms, it’s to get together as old friends.’’

Brian met his wife Joanne Penton  at the World Transplant Games in Sydney in 1997. Joanne’s father had a heart transplant and while he has since died, she has remained on the organising committee. 

The two hit it off during the games and married two years later.

This week, the 13th Australian Transplant Games will be held in Newcastle with events taking place at venues across the city from today until Saturday, October 6. 

The games will include sports such as swimming, tennis, golf, squash, badminton, lawn bowls and athletics.

The games are  a celebration of organ and tissue donation and a way to demonstrate the quality of life that can be possible after a transplant.

The event provides an opportunity to network with other people in similar situations from transplant recipients, donor families, living donors and those waiting for a transplant, to close family and friends who have lived through the process.

Brian certainly never thought he would be one of these people.

‘‘I never thought in my wildest dreams I’d end up with a transplant, but it happened to me,’’ he said.

At age 37, Brian was a fit man  in the army reserves when he went into cardiac arrest. It was then  he learnt he had cardiomyopathy, a disease of the heart muscle.

‘‘I never knew of anyone in the family who’d had heart disease and I didn’t know what I was in for,’’ he said.

He urgently needed a heart transplant but would remain on the waiting list for 11months. During this time he deteriorated to the point where his heart was only working to 5percent of its capacity.

‘‘I was on oxygen 24hours a day and had dropped a lot of weight.’’

Brian wore a pager to alert him if a donor heart had become available.

‘‘It does wear you down,’’ he said.

The night he got the call he was at a friend’s place for dinner with no bags packed. After trips in an ambulance, air ambulance and police helicopter, he made it from Adelaide, where he was living, to the Prince Alfred Hospital in Melbourne.

There he was wheeled straight into the operating theatre.

‘‘It all happened too quickly – I didn’t have time to take it in.’’

Brian said when he received his transplant 18years ago it was frowned upon to get in touch with the  donor’s family.

‘‘All I know is that he was a male about my age,’’ he said.

Through the hospital, he wrote a letter to the family to say thanks. 

‘‘I basically said, ‘thank you sounds not enough for what your father, son or brother gave me’. 

‘‘‘Your decision has given me the gift of life’.’’

Brian said he had thought about what a ‘‘horrendous decision’’ it probably was for his donor’s family.

‘‘But people should know the organs are taken tastefully and with dignity,’’ he said.

‘‘Plus, it’s no good putting organs in the ground.’’

Brian said a transplant came with ‘‘no written guarantee’’ but with the knowledge to live each day of your second chance at life to the full.

‘‘It could last you 18years, it could last five.

‘‘But I don’t put off tomorrow what I could do today because tomorrow might not get here.’’

Brian’s life-long friends from the transplant games share this attitude.

‘‘There’s a sense of camaraderie at the games. We’ve all been through the same turmoil whether it be heart, lungs, kidneys.’’

For Maitland resident Alison Brown it was her kidneys. At age 31, after the birth of her second child in 2000, she discovered she was in the final stages of renal failure.

When doctors tried to figure out what sent Alison into labour two months early with her son Oliver, a biopsy of her kidneys was taken.

“The doctors came in and said: ‘You have three options: death;  transplant; or dialysis’.’’

Alison said having her mortality thrown in front of her like that sent her into a state of ‘‘absolute terror’’ but she stayed strong for  two- year-old son Alex and newborn baby.

‘‘The whole time I just kept thinking of them growing up without a mum.

‘‘It really made me focus on keeping as well as I could so I’d get that precious gift of life, a transplant.’’

After this diagnosis she spent six hours every second day on a dialysis machine. She also underwent a series of tests to see if she was well enough to go on the organ donor waiting list.

‘‘It was then that my heart started to fail because of the toxins in my blood.’’

She needed a transplant, fast. 

As kidney transplants can come from live donors, the transplant co-ordinator suggested her siblings as her best match.

‘‘This information and my deterioration promoted my brother Adrian to come forward.’’

After many tests, education sessions and consideration they went ahead with her transplant in February 2001 at the John Hunter Hospital transplant unit.

Alison gave the first transplant games medal she won, a gold medal for golf at the 2002 games on the Gold Coast, to her brother.

Engraved in it were the words: ‘‘Without you this wasn’t possible.’’

‘‘It’s a bit of a tradition at the games for people to dedicate the first medal they win to the donor’s family.’’

The transplant games have been a large part of Alison’s life since she got her brother’s kidney.

‘‘These games send you on a roller-coaster of emotion,’’ she admitted. ‘‘One minute you feel exhilaration knowing that you are one of the lucky ones having survived the end stage organ failure and the next moment you see the facts of donor families who have lost loved ones and experienced such deep grief.’’

She has competed at games in Adelaide and Geelong as well as taking part in the international transplant games in Gothenburg, Sweden.

Like Brian, Alison’s children have grown up accepting organ transplants to be a normal part of life. Alison also shares in the lifelong friendships formed at these games.

‘‘Anyone at the coal face of organ transplant has a connection: from the recipients to the donor families and live donors to the partners, parents and children and, of course, the dedicated doctors, nurses and surgeons who make it all happen.’’

Outside the games Alison is fiercely dedicated to all things related to organ transplants and was part of the organising committee for the Newcastle games.

She  chairs  the Newcastle Kidney Transplant Group and is part of a new venture of innovative transplant research under the Hunter Medical Research Institute (HMRI). 

It was through Alison that neighbour Melissa Campbell, whose seven year-old son Jack has had two heart tissue transplants, learned her son was eligible to compete in this year’s games.

When Jack was born his heart was hardly pumping. He was diagnosed with critical aortic stenosis, an extreme narrowing of the aortic valve. 

‘‘They had to take away my newborn baby that I had never nursed and they brought him back with a million and one tubes all over him,’’ Melissa recalled.

“We were just in some sort of surreal state. Morgan [her first child who was three at the time] was healthy so we just assumed Jack would be.’’

Jack was taken from Maitland Hospital to Westmead Hospital in Sydney where he underwent a balloon dilation at three days to try to open the valve.

Instead this caused the valve to leak.

‘‘The specialists and cardiologists were just shrugging their shoulders.’’

Open-heart surgery was on the cards but Jack was only given a 12.5percent chance of survival and there was up to a 50percent chance of permanent brain damage. The only other option was to bring him home to die.

‘‘We had to put our feelings aside and think what sort of life Jack would want,’’ Melissa said.

‘‘We took him home.’’ 

Melissa said the decision was unimaginably hard but what was even worse was trying explain it to her three-year-old daughter Morgan.

‘‘We think Jack is going to go to heaven and be a special star in the sky,’’ Melissa explained to her.

‘‘Does that mean he won’t be able to jump on the trampoline with me?’’ Morgan answered.

Melissa said this perspective through her daughter’s eyes was one of the most heartbreaking things she and her husband Chris had to cope with.

Brought home with a short period of time left to live, Jack defied the odds when his heart began to respond to medication and his left ventricle began to pump.

Melissa said by 10weeks the cardiologists were confident they could perform successful open-heart surgery to take Jack’s pulmonary valve and put it on his aortic side and place a donor valve on his pulmonary side.

Melissa and Chris never met the donor of Jack’s heart valve.

Doctors told them the donor would have been a newborn, as it was the only valve that would have fitted Jack’s tiny heart.

‘‘I would love to meet the donor’s family,’’ Melissa said.

‘‘But Chris said he would feel really bad to know they had lost someone.’’

Jack’s heart valve had to be replaced again this year and he had a successful operation in June.

Just three months after this major surgery Jack is geared up to compete in his first transplant games. He has chosen to compete in tenpin bowling, a 50-metre run, shot put and long jump.

Melissa wasn’t aware that Jack could compete, having only received tissue and not a whole organ.

Alison explained to the family that he was  eligible.

Jack is incredibly keen on  the games, particularly after missing out on playing soccer this year because of the worsening of his condition before his surgery.

‘‘At the beginning of the year he was so sick I was carrying him into school.

‘‘Now he has more energy than we could have ever imagined.’’

Melissa said Jack was even surprising himself with the amount of go in him these days.

‘‘He said to us: ‘I’m running and I can still run and I’m not tired.’

‘‘We are so proud of him, we just never thought he would be able to do this.’’

His sister Morgan, now aged 10, is also allowed to compete in the games with Jack, just not for medals as these are reserved for the transplant recipients. 

Jack, on the other hand, is aiming for gold.

Melissa said when Jack was a baby she and Chris felt like they were the only ones going through this sort of ordeal.

The games will be an opportunity for the Campbells to honour Jack’s donors, celebrate his new-found energy and form deep bonds with other families who understand what they have been through.

‘‘Bring it on!’’ Melissa said.

The community is invited to watch the  opening ceremony tomorrow at 10am in front of Customs House on the Newcastle Foreshore. 

There will also be a wreath laying ceremony to pay tribute to the organ donors and their families at Nobbys Beach at 11.30am.

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