It consists of stories, poems and pictures of people involved and gives readers an insight into patients’ experiences with organ and tissue donation, transplants, the wait for a transplant and, most of all, hope.
Organ donation rates can be improved if people make their wishes known through family discussion, the book launch was told this week.
Clinical nurse specialist Mary Campbell said the failure of people to talk to their relatives and inform them of their wishes was one of the main obstacles to an increase in transplants.
Ms Campbell said less than 60 per cent of families gave consent for a donation to proceed and the only way to improve that statistic was to raise awareness and ensure people discussed the subject and made their wishes known to their families.
Ms Campbell said there was light at the end of the tunnel with a record number of transplants taking place in NSW this year and, with increased efforts to create awareness, prospects for the future were markedly rosier than in previous years.
The Book of Life will travel around NSW this year after which it will become part of a national collection and donated to the State Library of NSW and the National Library in DonateLife Week 2012.
Banora Point kidney recipient Cheryl French’s story is part of the book. Cheryl received a kidney from her partner Greg around 20 weeks ago and spoke, at the launch, of her experience.
After doctors told Cheryl she needed a transplant to survive, a number of tests ruled out her immediate family for kidney donation so her partner Greg stepped up and provided the much-needed matching kidney.
Cheryl said the transplant, at the Princess Alexandra Hospital in Brisbane, made an already close relationship even closer and she felt a distinct responsibility to make the best use of her partner’s generous gift.
Although Cheryl wasn’t quite ready to go back to her work as a primary school teacher and still needed to visit the hospital every two weeks, she said she felt great and hoped she would be able to return to work some time next year.
Double-lung transplant recipient Marion Walsham, also from Banora Point, said she felt a duty to look after her donated lungs and make the most of her newfound health.
Marion said she didn’t feel she had two ‘alien’ lungs inside her body and felt nothing but gratitude and concern for the donor’s family.
‘You think about them every day,’ she said.
Marion said rejection was a major concern to recipients, and patients were never truly ‘out of the woods’ as rejection could take place any time. Recipients were often forced to take medication constantly to ensure the organ was accepted and functioning.
Ms Campbell said changing the current situation by introducing the approach taken in countries such as Spain, where citizens are deemed to agree to donation unless otherwise stated, was not being considered in this country.