Pictures, hair & makeup: Selina Nunn
Growing up, Jess van Slooten never thought about organ donation. She didn’t have to. For most of her life, the 39-year-old has been a fitness and outdoor fanatic, who’s spent every spare minute skiing, hiking and surf lifesaving.
“I’ve always been an active adventurer for as long as I can remember,” says the Christchurch health and safety expert. “I even moved to Wānaka for my last year of high school so I could spend more time in the outdoors.”
But while she was finishing her health science degree at Auckland University of Technology, things began to change.
“I started getting fatigued quite easily and wasn’t able to exercise as much. It got to the stage where I couldn’t walk up the stairs without being out of breath.”
Jess visited her GP, who wrongly thought she might be asthmatic and suggested the use of an inhaler.
She found another GP who referred her to a specialist, who diagnosed her with lymphangioleiomyomatosis, a rare degenerative lung disease that affects women of childbearing age and can be fatal if left untreated.
“Basically, my immune system was attacking my lungs and creating cysts,” shares Jess. “Apparently, my lungs looked like bubble wrap!”
Medication helped raise Jess’ lung function from around 38% to 75% of what it should be. But while she knew a double lung transplant was inevitable, she tried to put it off as long as she possibly could.
“Doctors told me I probably wouldn’t make it to my 30th birthday,” she recalls. “But I’ve got a very stubborn streak and wanted to live my best life while I could. Against their advice, I booked a one-way flight to Greece, where I spent two years skippering yacht flotillas based out of Corfu.”
On her return, Jess moved to Auckland, where she completed further study and began working in the health and safety sector. But when her lungs began to fail again, she agreed to a transplant.
Although she wasn’t sure how long it would take for donor organs to become available, in the end, Jess spent only 30 days on the waiting list. In early 2020, she received two donor lungs in a five-hour transplant surgery at Auckland City Hospital.
“I spent seven weeks in hospital recovering,” tells Jess. “But that surgery was the best thing I’ve ever done because it gave me back my life. Six months after the transplant, I was skiing on Mt Ruapehu and nine months after that, climbing Nelson’s mountains.”
Her second shot at life also produced her soulmate – engineer Lewis Avenell, whom she met via online dating.
“We’re getting married in December!” she gushes. “We’ve also recently moved from Auckland to Christchurch, where I’m from, and we’re building a house. None of this would have been possible if someone hadn’t been generous enough to donate their lungs to me.”
While organ recipients in Aotearoa aren’t able to meet or find out about their donors, they are able to write them an anonymous letter.
“I wanted to say thank you for my donor’s gift because the last five years have been the best of my life,” she reflects. “I’ve re-engaged with family and friends, and am doing everything I want to. Without the generous decision of a person and their family to donate their lungs, I wouldn’t have this amazing life.”
It hasn’t been all plain sailing, though, with Jess having to undergo three-monthly check-ups and, due to a severely compromised immune system, experiencing on-going health issues, including being hospitalised with Covid and pneumonia.
“But I’m so thankful for the surgery. I don’t think about it as walking around with someone else’s lungs – I know they’re donated, but they’re my new lungs.”
Her transplant has also spurred Jess on to become a motivational speaker. She wants to help others to “harness their pivotal moments so they can live their best lives”.
“I want to help others on their transplant journey. If I can come out the other side, then so can others.”
When Woman’s Day calls, Jess has recently returned from the Australian Transplant Games in Canberra. There, she represented New Zealand in a number of sports, including tennis and 10-pin bowling, winning seven medals.
“It was a real honour to be able to compete against other transplant patients and to lead the Kiwi team. I’m hoping to do that again next year at the World Transplant Games.”
She’s also working on Organ Donation New Zealand’s Thank You Day. It’s a reminder for Kiwis to thank donors and their whānau, as well as the importance of speaking to loved ones about your wishes when you die.
“One organ donor has the potential to transform the lives of up to 10 other people. That can have a profound impact. It’s an amazing legacy to leave.”
Organ Donation New Zealand’s Thank You Day is this Saturday. For more info about becoming a donor, visit donor.co.nz.
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