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Anston woman in donor appeal
AN ANSTON woman who is 'living on a knife-edge' awaiting a double lung transplant has made an emotional appeal for society to embrace organ donation.
Helen Miller, 38, was given weeks to live by baffled medical experts when she was struck down by an ultra-rare auto-immune disease in her teens.
This week the Guardian highlights the desperate need for life-saving donors who can give people in Helen's position a prolonged and healthier life.
The self-confessed strong-willed South Anston resident, battled to regain a normal life after months being hospitalised at just 16.
She climbed the career ladder, married and defied doctors' predictions by becoming a mum-of-two.
But when Helen began feeling out of breath five or six years ago, specialist tests showed the full extent of her illness and the need for a transplant.
"Since then I have gradually deteriorated," she said. "As soon as I get up I'm out of breath. It's like climbing Mount Everest every day of my life."
Increasingly housebound, everyday tasks have become exhausting for Helen, who has been on the transplant waiting list for close to a year now.
"You have to be well enough to have the operation but poorly enough to need it," said Helen, whose place on the list was only confirmed after several strenuous trips to Newcastle's Freeman Hospital.
"Every day I am waiting for that phone call to say a donor has come through. And it's such a long, long wait and it's like living on a knife-edge all the time."
"I can't even brush my hair or wash it, everything is such a struggle now."
Husband John, a 43-year-old landscape gardener, works locally so he can check on Helen at their Hawthorne Avenue home several times a day.
Mum Pat Eaton, 62, helps care for her during the day and children Abbie, 18, and 15-year-old Daniel help out at the weekends.
"It's hard for John and the kids," she said. "They can see me just fading away, losing weight and not being able to get up."
"So it's difficult to get across to them when I'm actually feeling okay inside some days."
"I was in hospital two weeks ago and they were all hoping and praying that I would come out. I'm strong and try to stay positive about it, and I think if I wasn't then I might not even be here now."
"It's all about your mental attitude and how you want to live life," added Helen, who is just two assignments away from completing a Cert Ed teaching qualification at RCAT in Dinnington.
"That's been purely something to take my mind off everything. I just want to get a normal life back and work and be a wife and mum."
"I keep thinking 'when' I've had my transplant, not 'if'."
Helen, whose working life saw her go from working in a call centre to being a training manager at Abbey National, says everyone has the opportunity to help by signing up to become a donor.
And she supports the Government's opt-out proposal, where people who do not wish their organs to be donated would have to make it known - not the other way around.
"I would like everyone to make a difference," she said. “You’re in this life now, but who will actually remember you when you’re gone beyond your family and friends?”
“If you can give the gift of life once you’re gone then you are making a real difference.”
“And it’s not that people don’t want to, it’s often that they never get round to carrying a donor card.”
“That’s why the opt-out idea makes much more sense, because if someone is adamantly against it they can say so.”
“But it’s not about them, it’s about the people who say ‘Yes’ but never get round to actually doing it.”
She reckons society’s attitude towards organ donorship should shift to be more in line with blood donorship.
“People need to talk openly about it and the emotion needs to come out of it. We have got to change. You see adverts on TV for giving blood all the time, but when have you ever seen one for organs?”
Life remains a day-to-day struggle as Helen awaits THE phone call she has desperately craved for 12 months.
“I just want to get across what it’s like living with something like this all the time, and show how anyone can make a huge difference.”
“Sometimes I just don’t want to get out of bed and wish I wasn’t here,” she admitted.
“But on my good days I’m positive about the future.”
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Saturday 04 February 2012
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