’I was the unlucky one’
I was a right klutz, a right stumblebum. I had just had a privileged but confronting few minutes chatting life and death with Kristie Purton – one of the Cystic Sisters, and a young mum who has come home to die, Hunter Wells writes.
This spunky, freckle-faced 35-year-old who so very publicly and very positively made such a wonderful thing out of living.
“I am feeling pretty shitty, but dealing with life as it happens,” she says. Dying but smiling. “I have always thought I am strong enough, that I can fight this thing.” But her attitude is no longer enough.
“It’s got to the stage where my body is giving in … so, yeah.”
We are talking days. At best, weeks.
“I have lived with an incurable illness all my life, and I always knew it would claim me one day, but I never ever thought it would be now. It would always be sometime.” The wrong things can happen at the wrong time. And now ‘sometime’ is here.
You may remember the Cystic Sisters from their 65 days of good deeds – doing spontaneous, nice things for complete strangers. There was pre-paid parking charges, some cheer here, a cake there, scratchies hidden in library books and train ride tickets at Memorial Park. Small but big stuff that raised a smile here and a hug there.
They made happy days out of their challenging days because they were living with cystic fibrosis - a cruel genetic disease slowly suffocating them and slowly shutting down their lungs. Sixty-five roses, they called it, because it sounded like cystic fibrosis.
Kristie’s lying back in her lounge when I drop by, with a 24-hour lifeline of oxygen inserted in her nose. “If I took that away I couldn’t breathe, I couldn’t do anything,” she says. Her body aches and her chest cradling the transplanted lungs feels like it is caving in. “My whole body is tired.”
They call it chronic rejection – Kristie and her new lungs just don’t get on. There’s no way back, and no way forward.
But she’s so stoic. She’s unflappable as she calmly spills the most personal, most intimate information, knowing it will be shared with the world. “Go ahead,” says Kristie. “I am an open book.” After all, she announced the end was near on Facebook.
“Strong, yes, she’s very strong,” says Nikki Reynolds-Wilson, one of the joined-at-the hip ‘Cystic Sisters’. “To the point of being stubborn.” But stubbornness has served her well – when born, her parents were told she wouldn’t live past 18. She passed that threshold some 17 years ago.
So this reporter is probing away, asking some very personal questions with as much dignity as I can muster. Emotions are heaving, hearts are pumping and hands are shaking. Well, mine are. Then the aforementioned stumblebum moment.
I got my foot tangled in her oxygen tube, the 24-hour lifeline. I just about tore it out of her nose, or the cylinder, or both. “What are you trying to do, kill me?” she asks. That was the ice breaker.
Sometimes the wrong things happen at the right time. She quite enjoyed the attention being off her in that moment. At this time of darkness and hopelessness, of yielding to the inevitable, Kristie Purton’s indomitable spirit and humour are shining brightly.
Kristie wasn’t well when she competed at the transplant games in Australia last September, even though she won a fistful of medals. That stubbornness kicked in again. “I had been in and out of hospital with flus and viruses and they put it down to that.” But in the back of her mind, those dark words - “chronic rejection” - were floating around.
“Two weeks ago the doctors consulted colleagues in Australia. It was a very thorough investigation, with lots of factors to be considered.” They must rule out everything else before resorting to the rejection label.
“In the x-rays and scans it pretty much showed the lungs were scarred and shutting down,” she explains. “I can remember that moment.” Note her use of the words “the lungs”, not “my lungs”. She has emotionally detached herself from the organs. “The lungs have never attached, they’ve just been rejected.”
As she would later tell her three children – eight-year-old Haylee, Curtis, 10, and 16-year-old Zak: “I have done my best with the new lungs but they didn’t agree with my body. There’s nothing else we can do. It’s not my fault, I have tried everything.”
Even in hospital, after being delivered the chronic rejection verdict, a stubborn Kristie still believed. “I was sad, but I’d heard stories about how you could have a second transplant. There was still hope. I could have another try.”
But no. The doctors disagreed and proceeded to talk her through it. A second transplant was not an option. “I just broken down,” she says. “The outcome was that there was nothing else they could do for me. I said ‘so I just go home and there’s nothing more?’, and they said ‘no, there’s nothing more’! I will never forget those words.”
Kristie drove home from Auckland to Tauranga with just one thing going through her head, and it wasn’t her own mortality.
“It was my three kids. How do you tell three kids so young that they won’t have a Mum?”
She sat them down, and after explaining that her lungs simply don’t agree with her body, she reassured them of how proud of them she is. “I talked about all the good stuff they do and how they are my world. Of course they broke down, and they wanted to know how they would live without their Mum. We pretty much cried all day.”
Nikki will be there. She will be there for her sister’s kids. “We have always promised each other that whoever went first, the other would adopt their kids. I will keep that promise forever,” says Nikki.
Kristie says she will be there fighting until her last difficult breath. They may have rejected her, but she will make those lungs pump until the last possible moment.
“The prognosis was pretty much ‘go home and you will have week’. They took three x-rays over the five days I was in hospital, and the damage to the lungs is happening at a rapid rate. They said I could have really good days and I could have bad days, so just make the most of the good days.”
At daybreak one day last week, the champagne flowed atop Mauao. Whenever Kristie came out of hospital, the summit of Mauao was her holy place. “I wanted to go back one more time, and 80 people came with me,” she explains.
They offered to carry her up, but that stubborn streak got her there under her own steam – oxygen bottle and all.
“I explained to the kids that when I am gone, they can come up here when they are sad. You will always remember this day and you will remember me. I asked everyone to live their lives to the fullest.”
Kristie also has some advice for cystic fibrosis kids – don’t use her own outcomes as a measure of anything, because it’s extremely unlikely to happen to them.
“Any kid out there with cystic fibrosis is one of the strongest people in the world. They have to confront stuff no-one else will ever understand. They will go through life tough, but because of what’s available to them these days, they will be old before anything bad happens.
“I was the unlucky one – my lungs didn’t agree with me. But most people have the most amazing outcomes. Look at my sister. Three years on and her lungs are amazing. She will live forever.”
She says it is the luck of the draw. There’s a whole bunch of straws and she drew an unlucky one. “There’s nothing you can to do to prevent it or change things,” she says. “It’s life.”
Her Mum and Dad are struggling on many levels. “They have done everything in their power for us our whole lives. The possibility of having to bury their own child pretty much broke them.”
Her brother, who dodged the cystic fibrosis gene, is also struggling.
“You always forget the one who escaped it,” says Kristie, “but he’s suffered watching his Mum and Dad go through all of this and knowing his sisters aren’t in good health and might die. I don’t think his support and courage get acknowledged enough.”
It was the middle of 2016 when this reporter and the Cystic Sisters were down on Chadwick Road in Greerton doing what made them famous – giving stuff away, doing little favours, making people happy and making folk aware of cystic fibrosis. It was their very own brand of kindness and good will.
They had just stopped a retired teacher by the name of Mary Elders. “People are always asking for things, never giving. This is an absolutely lovely thing to do,” exclaimed Mary, as the Cystic Sisters thrust a little posy of flowers at her. There was a spontaneous round of hugs and pecks between people who, seconds earlier, were total strangers.
The moment was made even more poignant when the teacher explained she had lost a pupil to cystic fibrosis. It encapsulated 65 days of kindness. Perhaps that’s Kristie’s legacy, and the kindness will continue.
This reporter gets up to leave. The oxygen is still flowing, no thanks to me. There’s a spontaneous hug. Then Kristie rocks me. “Goodbye,” she says. “I have enjoyed knowing you.”
No see you soon, no catch you later. There was an uncomfortable finality in her farewell. Goodbye Kristie – the privilege was all mine.