Organ donation. That’s something that affects other people.
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Or so was the attitude of two Glen Innes organ donor recipients whose life changing experience has turned around their families’ attitude to organ donation, and they’re hoping to spread the word farther.
You would never think it to look at her now behind the counter at Kwong Sings where she works, but four years ago Lynda Ludlow was given just days if not hours to live. She had been diagnosed with primary pulmonary hypertension, meaning high pressure in her lungs was causing her pulmonary valves to constrict which in turn caused her heart to swell to double its normal size.
“When I was diagnosed, I just thought ‘that’s something that happens to other people’,” she said.
Only 44 at the time, she became reliant on oxygen and eventually bed-ridden unable to speak or move. On Christmas Day 2007 her family was called in to say their goodbyes, although she was determined her death wouldn’t spoil her son’s wedding on January 5.
Her deteriorating condition took her to the top of the organ waiting list, and on January 8 she received a double-lung transplant from a donor who wasn’t an exact match.
“At that stage it was all about finding a donor, and then worrying about whether they were a match,” she said.
She said statistically of the 3,000 Australians who die each week, only six are organ donors.
Mrs Ludlow said she is alive today because, “they (the donor’s family) said ‘yes’”.
She is able to contact the family through the hospital, and it’s on her bucket list of things to do.
Barbara Chard’s condition was more chronic, forcing her through eight years of peritoneal dialysis which she was able to do at home, with the ‘night cycler’ putting up to 1,000 litres of fluid through her stomach each night.
It didn’t slow her down too much, though. The family still sent camping, “although we always needed a powered site,” she said.
“You’ve got to make it (the condition) live around you, not you around it.”
She said her children ranged in age from five to 10 years at the time of her diagnosis, so giving into the disease wasn’t an option.
“If you don’t do the treatment, you die,” she said.
Although at the beginning she was uncommitted to the idea of a transplant, due to the side-effects of the anti-rejection drugs, when the call came on March 13, 2004 that a kidney was available, she drove to Newcastle and was undergoing surgery by 7pm that evening.
Two close family members were possible live donors, but Mrs Chard said she didn’t want to put them through that.
Both women credited their children with keeping them going, and said the experience now has their families all in favour of organ donation.
But Mrs Ludlow foresees that as new people join a family through marriage ,attitudes can be different and organ donation needs to be brought up as situations change.
“There are a lot of religious barriers, and some people see the black market side of it,” she said.
Mrs Chard feels her donated kidney may only have become available due to the publicity on the importance of organ donation surrounding the death of a well-known cricketer a week before her surgery.
Although she continues to have challenges – such as slight rejection of the new organ six months after surgery and a bout of pancreatitis six months after that which has left her a diabetic, plus issues with the anti-rejection drugs she’ll be on for life – she has no regrets.
“I wouldn’t give it back for quids,” she said.
The two women have discussed forming a support group for people in their situation, not necessarily organ recipients but anyone going through a medical trauma, and their carers.
“We’re all on the same wavelength,” Mrs Ludlow said.
“We can share our experiences.”
Primarily, though they would like everyone to discuss organ donation with their loved ones.
“The soul goes to heaven, but your organs stay behind,” Mrs Ludlow said. Anyone interested in getting together for some mutual support can contact Mrs Ludlow on 0412 622 975 or Mrs Chard on 0427 325 352.