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Woman tells tragic tale to boost awareness

A woman told last night how important it was for everyone to consider carrying a donor card after her husband died while waiting for a heart and lung transplant.

The 50-year-old woman, who did not wish to be named, was speaking publicly for the first time about his death, which happened in October, 1994.

She said her husband had been on a transplant waiting list for a year when his health progressively and very quickly got worse.

He died in hospital in Bermuda - two years before he was likely to get anywhere near the top of the waiting list.

He had suffered mysterious breathing and lung problems since he was a child. As they worsened with age, they took their toll on his heart, and when he was just 45-years-of-age doctors said he was living on borrowed time and needed to undergo the double transplant.

However, he never got the chance.

The businesswoman, who had been married to her husband for 20 years, said she hoped if just one person decided to be a donor after reading her tragic story, the pain of telling it will have been worth it.

"My husband had always had some underlying lung illness, but had always been able to live a very productive life," she said.

"He was active in sports and in the community. He was involved in a number of different organisations. He played tennis and was a soccer referee for a time.

"But then he just got progressively worse. I would say about five or six years before he died.

"I remember the day he came home and said he would never to be able to play tennis again. He seemed to get sicker and sicker.

"Doctors could not understand why he was so ill. He had never smoked and had been so active. It seemed so wrong that he was dying."

The couple struggled to come to terms with the fact that without a heart and lung transplant, he was not going to make it.

For them, the decision to opt for the transplant waiting list was an arduous one.

"It was a very difficult decision - no one wants to be in that situation," she added.

"He was a young person but he was dying. And then there was the issue that in order for him to have a transplant, there would have been a tragedy for somebody else. It was a lot to take in."

However, the couple did decide to go ahead with the transplant option and he had to undergo five days of extensive tests. Then the waiting game began.

The couple returned from the US to Bermuda, where they tried to maintain as normal a life as possible. They realised it could be three years before a suitable donor was found.

He was no longer well enough to work, and was on so much medication and oxygen, much of his day was spent keeping himself as well as possible.

For his wife, she had to maintain her job, and did so with the constant support of her employers, family, friends and network groups, including P.A.L.S.

"He was amazing throughout. He would always say 'mope or cope', and he really did cope. He never felt sorry for himself."

During his time on the Boston transplant list, his wealth was getting progressively worse.

But about a year after, it began to wane even further.

Even if a donor had been found, he would have been too sick to accept it.

He was admitted to hospital and a week later he died. He was aged only 46.

His wife said throughout it all, even until the end, she had never given up, always clinging to hope that her husband would improve and a donor would be found.

"Afterwards I went through the usual grieving stages that people do, including anger," she said.

"I think what used to anger me most, though, was seeing young people walking around smoking. These people were giving up their lives.

"Now I would just urge people to take care of their health and to get regularly checked out. And secondly, I want to tell people in Bermuda that there are some very good people on the transplant waiting lists.

"My husband was not perfect, but he was a good man who did not deserve to have this happen to him. He was a thoughtful man.

"I know every breath he took hurt, but he would not give up. He had a portable oxygen tank for some time that he would take out around town or wherever with him. He wanted to live as normal as life as possible.

"People need to come to terms philosophically with this issue. If just one person changes their way of thinking after reading this it will have been worth it.

"People should consider getting donor cards, but more importantly, they need to talk to their next of kin. This could be you or somebody you love who is in this situation. Don't think about it when it is too late."