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Jonah Lomu’s last chance

Jonah Lomu talks exclusively to New Zealand Woman's Weekly about facing his second transplant and his difficult next steps.

It’s the news everyone’s been dreading. Four months after Jonah Lomu was rushed to hospital in a desperate bid to save his transplanted kidney, doctors have told the rugby legend that despite intensive treatment, the kidney that has kept him alive for the past eight years has failed, and he needs another transplant.

“Unfortunately none of the treatment has worked – my kidney is exactly the same as it was when I first got sick in October,” explains Jonah (36), who now has seven hours of dialysis overnight, three times a week, and is currently back in hospital suffering complications from an ankle infection.

“Because Jonah’s immune system is so low, his body can’t defend itself so well against infection,” says his wife, Nadene. “What would normally be a minor problem was huge – Jonah couldn’t walk or touch his foot. His health plummeted.”

Not knowing what was wrong this time was a big shock for Nadene (33) who, along with her father Mervyn, rushed Jonah to hospital while her mum Lois looked after the couple’s two sons, Brayley (3) and Dhyreille (16 months). “I’m so thankful I had support from my family – it was really scary, really horrible,” she says.

But while Jonah’s ankle is showing signs of improvement, unfortunately the same can’t be said for his ailing kidney. “We were hoping to see some improvement, but nothing has made any difference, so the next step is to try and find a donor,” says Jonah.

But, as with any significant operation, a second transplant comes with some huge risks. “I know I was fortunate to get the first transplant, but there are more difficulties this time around,” explains Jonah.

“The match will be harder and the process of finding a suitable donor is difficult. The chances of my body rejecting this kidney are higher too.”

She’s been a tower of strength up until now, but the news has come as a blow for Nadene, who has been Jonah’s rock,

resolutely refusing to accept until now that his existing kidney could fail. “I’m struggling with it,” admits Nadene, who works as Jonah’s business manager from wherever she has to be, while he travels between Auckland and Wellington for treatment.

She often struggles to find respite from the constant stress of Jonah’s illness. “Normally, Christmas is my favourite time of year, but this last one was really tough. It’s been hard for me to accept that the best thing for Jonah is another kidney transplant.

“I often think about how we used to go about our daily lives, taking every day for granted. It’s not that I don’t cherish the good, but when trial after trial is smacked in your face, it can be hard. I’m beginning to wonder what else can go wrong.” There’s no sign of a change in sight.

Although several of Jonah’s friends have already been tested to see if they could donate a kidney to the sporting great, so far no-one has been deemed compatible. “If someone wants to get tested, I talk to them. Jonah doesn’t know about it until they’ve been tested, as he doesn’t want anyone to feel sorry for him,” explains Nadene.

“It matters to him that if people want to donate, they are doing it for the right reasons.” But the family are hoping a suitable donor comes through soon – because Jonah is pretty sick.

The 30kg weight-loss since his initial diagnosis is obvious and although Jonah still has immense mental determination to make the best of the situation, he has severe headaches and is exhausted for much of the time.

“That’s why I changed my dialysis time to overnight – so I can play with the boys during the day,” Jonah explains, nursing his thumping headache with Paracetamol – the only painkiller he is allowed.

“I go for treatment at 9pm. I try and sleep while it’s happening, but you take on fluids during dialysis, so I don’t feel crash hot sometimes.”

But rather than become a victim of his disease, Jonah is fighting back and has made the choice to start exercising again. “I need it – partly just so I have something that’s normal,” he explains. “It freshens the mind. But it prepares me too,

just in case everything goes pear-shaped. I want to be sure my body’s in the best condition it can be.”

And there’s no doubt Jonah’s beloved family is the reason the legend will never stop fighting. “It’s important right now that I make do with what I’ve got and make things as normal as possible – for the boys’ sake,” says Jonah, looking on with a smile as the ever-mischievous Dhyreille is fished out of a nearby ornamental pond he’s been investigating.

“He’s always on the go, that one. He’s a real piece of me. I just hope he doesn’t follow my footsteps in everything I’ve done!” laughs Jonah, referring to his more chequered past. “The fortunate thing is that I’ve been through a transplant before, but this time I have my family to think about.”

The boys are still very young, but Brayley especially is aware that Daddy is unwell. He is careful to avoid “Daddy’s ouch” – the tubes that are permanently attached to Jonah’s chest so he can receive treatment – and his young eyes are full of concern as he hugs his dad, which he does as often as he can.

“When Jonah’s away having his treatment, Brayley knows Daddy’s sick, but he’s constantly asking for him,” says Nadene. “He gets really excited if someone knocks on the door because he thinks it’s Daddy.”

“They are handsome boys. I see a lot of me in both of them – although, luckily they get their looks from their mum!” smiles Jonah.

“But they, and Nadene, are the reason I’ll never give up. If there’s one thing I want to leave with the boys, it’s to never give up. As much as I love my work, I’d rather instil in the boys the fight they need to enjoy life. By me not surrendering to my illness, I’m teaching them something I believe they’ll need in the future.”

And although this family isn’t giving up easily, their planned trip to Las Vegas so Jonah could speak at the US Sevens Rugby Tournament this month has been shelved due to his unexpected hospitalisation and they have no idea when they will get back to their home in France, where the family’s beloved dogs are waiting for them.

Jonah and Nadene have liaised with his transplant team to arrange dialysis in hospitals around the world so they can continue travelling with their business, which includes management of the Jonah Lomu Rugby video game, and his social media, charity and public engagements. “As soon as I’m better, we’ve got work to do in Vancouver and in Fiji,” explains Jonah.

While Nadene is a natural planner, she’s had to accept that for now, the family have to live one day at a time. She continues to run the couple’s business, looking after the boys and travelling between Auckland and Wellington to be with Jonah whenever she can. “Working is what we do – we enjoy it,” insists Nadene.

“Being part of all this, having the boys run around behind me while I negotiate contracts, is what I do, what I love. It’s part of me.” Despite their obvious trials, the love and warmth between Nadene and Jonah has only strengthened since Jonah became sick.

They’ve even found a way to laugh together about their situation. “I do often tease Jonah that I ended up with the wrong end of the stick – I got him after all the good stuff had finished!” laughs Nadene.

“But I love him and you have to have a sense of humour about it. And I wouldn’t turn the clock back for anything. I don’t have any regrets, and I wouldn’t change our life.”

A devout Christian, Nadene says her religion is helping her stay strong, but her faith has sometimes been tested. “None of us know what the true plan is, but I believe there are always answers to everything – just sometimes they aren’t always the answers you want to hear,” she explains.

“We’re going through a lot right now and I want to remind people to be grateful for what they have and to show love where it’s needed, because all too often, life is too short.”

While he knows there’s a hard road in store, Jonah is choosing to focus on the positives and appreciate every day as it comes.”I’m a pretty literal person – what you see is what you get,” he says softly.

“I’m really lucky – I’ve already lived more in one lifetime than many people would in six or seven lifetimes. The thing about being human is that everybody has to die sometime.

“For me, the important question to ask is can you look in the mirror and say you’ve done everything you can to enjoy life? Money doesn’t buy health – when you’re faced with a situation like this, enjoyment of life becomes number one.”

Location: Seafields Luxury Accommodation, Whitford, Auckland: www.seafields.co.nz

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Jonah & Nadene’s heartbreaking decision

Jonah and Nadene Lomu don’t allow themselves to think too far into the future. Faced with major uncertainties – such as the All Black legend’s continued struggle with kidney failure – the couple, who are parents to Brayley (5) and Dhyreille (4) prefer to take each day as it comes.