Real Life

Cystic sisters' double blow: We could kill each other

They’re so close, yet have to remain far apart

Tauranga sisters Nikki Reynolds-Wilson and Kristie Purton have always considered themselves best friends. They live just five minutes apart and speak most days. But sadly, doctors have told them they must never go within four metres of each other if they don’t want to endanger their lives.

The close-knit pair both have the life-threatening genetic disorder cystic fibrosis, which causes severe respiratory illness. It’s advised that people with the condition don’t hang out together as they carry bacteria in their lungs that could be harmful to the other. But with such a sisterly bond, it was a risk Nikki and Kristie were willing to take – until last year.

For their health’s sake, sisters Nikki (below, left) and Kristie are under strict orders to keep their distance.
For their health’s sake, sisters Nikki (below, left) and Kristie are under strict orders to keep their distance.

That’s when Nikki, 26, underwent a successful double lung transplant. Now doctors’ strict orders are she absolutely must now stay away from Kristie, 33, to avoid her picking up potentially harmful bacteria.

“It has been hard because we’re so close, but now we can’t even be in the same room together,” explains Kristie. “We still see each other, but we have to keep our distance. We never come inside each other’s houses. She doesn’t want the risk of picking up any bugs that I may have, otherwise it could take over her lungs and have a deteriorating impact. It is really hard, but I’d hate it if anything happened to her.”

Born seven years apart, life was often tough for the siblings, who called themselves the “Cystic Sisters”. They spent large chunks of their childhood in hospital with the disorder, which affects a number of organs in the body, including the lungs and pancreas, by clogging them with thick, sticky mucus.

Kristie Purton and Nikki Reynolds-Wilson
Kristie Purton and Nikki Reynolds-Wilson

“We’ve been in hospital together when we’ve both been having treatment,” tells Kristie. “We’ve experienced the same things and we’ve always supported each other.”

Growing up with a condition where people rarely reach adulthood took its mental toll and Kristie says because of her predicted life expectancy, she adopted a carefree attitude as a child. “I grew up thinking I probably wouldn’t reach 18, so I lived life to the full,” she says. “I made every day count.”

Against the odds, Kristie fell unexpectedly pregnant at 18 and in 2002, she gave birth to son Zack, who’s now 14. Her new responsibilities brought about a fresh attitude. “My outlook changed as I realised I had to live for my children and be around for them,” explains the keen sportswoman, who has completed two half-Ironman races, comprising a 1.9km swim, 90km bike ride and a 21.1km run. In 2004, she married Craig and the pair went on to have two more children – Curtis, eight, and Haylee, six.

Kristie’s good fortune acted as an inspiration for her sister, who is mum to five-year-old Skyla with husband Brendan. But in recent years, Nikki’s condition worsened and with her lung function at 23%, a transplant was her only hope of survival.

Nikki was put on a waiting list, but because of her height – a little under 1.52m – finding a match was difficult due to a shortage of small donors.

However, after 16 frustrating months, her prayers were answered in August last year when she received a call from Auckland Hospital that they’d found a match. “Every day you’re waiting for the phone to ring,” tells Nikki, who with Kristie was nominated as a finalist for a “Spirit of Attitude” award at the 2016 Attitude Awards, which honours outstanding achievements of Kiwis living with a disability.

Nikki holds her old lungs.
Nikki holds her old lungs.

After eight hours of surgery and six weeks of rehabilitation, Nikki returned to her home city with her life transformed.

“I used to wake up every morning and it took me an hour to get out of bed, but now I pretty much jump out of bed and I’m ready to go,” says Nikki, whose new lungs are expected to function for about eight years. “I can now run around with Skyla and play in the ocean with her for hours.

“To have new lungs is my second opportunity. It’s cool to know I can now dream of doing what I want to do.” Kristie has been delighted in the change in her sister, but is sadly experiencing a real decline in her own health now. With a lung capacity of around 30%, Kristie struggles to hang out the washing or play with the kids and she’s desperate to be put on a lung transplant waiting list.

“Seeing what Nikki has gone through has been quite hard,” says Kristie. “I just want to be where she is and I know what I need to do to reach that point.”

It won’t be a straightforward process. Many of Kristie’s veins have become clotted, making the surgery potentially dangerous. But she’s hoping her specialists will give her the go-ahead.

“To know how well Nikki has done is keeping me positive,” says Kristie. “It is great to see what she can now do with Skyla and how she’s loving her new life.”

And should Kristie undergo a successful lung transplant, she dreams of hanging out with her sister again. “It would definitely be cool to sit down by each other and have a laugh, and joke again,” she tells. “It’s an awful feeling at the moment knowing we can’t be that close.”

Words: Steve Landells

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