At New Year 2021, a group of us sat on the deck of Carey ‘Wocky' Penn's bach.

Penn was, as usual, cheerful company, despite the clear plastic tube which snaked from underneath his shirt and back into the house. There was a moment's panic when someone closed the ranch slider on it.

He was deep into a draining routine of kidney dialysis while hoping for a transplant. Penn's own kidneys were functioning at 4 per cent, and the impact that had on him was clear. Everyday life had become an uncomfortable equation.

A chilling text message

He thinks it began the day he suffered back pain so severe he had to stop work and lie down in his van. Penn was building up his electrical contracting business, and that meant working long hours and into the night at home, so he didn't think it unusual when he started requiring a Berocca to kickstart his day. But the trigger was as simple as a nosebleed suffered at work, about November 2019.

At the suggestion of his wife, Gemma, a sonographer, he had the bleed checked by his doctor, mentioned his fatigue, and completed a routine blood test. That Sunday night, as they sat at home at their rural property just outside Hamilton, he received a text message asking him to return the next morning – he had stage 4 kidney failure. 'The first thing you do is Google it,” he remembers, 'and Google comes up with all the worst possible outcomes.”

Your kidneys filter the blood, removing toxins which are dispatched through your urine. Kidney failure means they've lost that filtering ability, causing waste to build in the bloodstream. Acute kidney failure can lead to death.

Penn was referred to a specialist, who said he should just continue living life while he could. His kidney function then was at 23 per cent, and he was still able to compete in 50km mountain-bike races.

But his capacity dropped to 19 per cent, then to 14 per cent, then 9 by Christmas 2019. Normally, says Penn, kidney dialysis starts at 15 per cent; at 20 per cent, kidneys are working so hard to function that once they start to fail, it happens quickly.

By now, he felt 'like an elephant on my feet, with lethargic, constant headaches – like a foggy, fuzzy head – and it was hard to make snap decisions. If someone throws a question at you, it takes a little while to compute.”

Penn delayed dialysis – the process in which the blood is extracted from the body and waste products and excess fluid are removed, effectively to clean it, replicating the work of functioning kidneys – in the hope of first securing a transplant. But that's a difficult and tortuous process, and in the end, he had to succumb.

In hindsight, he says, he should have pushed the transplant process harder, to avoid the pain and inconvenience that was to follow: 'We could have bypassed the dialysis, the nights in A and E, the throwing up in the bathroom.”

For dialysis to begin, Penn had a line inserted into his body and he visited a clinic daily for a week to learn how to live with that, and have his first sessions of dialysis. The process was to drain two litres of fluid into his body, leave it for four hours, drain it back out, drain two more litres in, disconnect from the machine, and then in four hours time, repeat the cycle.

Life was uncomfortable. He woke at least 10 times a night to urinate. His legs became incredibly itchy. He would usually be woken at 5am by the final cycle of the night with the strange feeling of the tube trying to suck tissue from his body. He lost the mental capacity to deal with problems. He'd get home from work and sleep for two hours on the couch, then fade again immediately after dinner. He cut seafood and processed meats from his diet, and then lost the taste for any complex flavours, and would eat plain vegetables and meat, or more often, just peanut butter on toast.

He was hospitalised twice with heart palpitations due to severe dehydration, and also had a night at A and E when his tube leaked blood. He briefly stopped breathing under general anaesthetic when the tube needed replacing. That procedure meant a two-week halt to dialysis while the fresh wound healed, but after 12 days Penn found himself in the middle of the night lying on the bathroom floor vomiting.

He was allowed to resume dialysis early, as long as he promised to lie on his back without moving for each four-hour cycle, for five successive days. It was probably his low point, and, as he felt his resilience weakening, Penn made himself consider each of the things he was grateful for – his eyesight, his hearing, his ability to walk. Each affirmation, he says, 'lifted me out of that spiral a bit”.

While that week completely incapacitated him, in general, having to tote around bags of fluid severely hampers the physical freedoms of kidney patients. Most patients would hang their bags from a curtain rail or door frame and stay seated while the machine did its thing. Penn found that frustrating: 'I don't like standing still; I don't like wasting time.”

So he constructed a home-made bag stand from some wood and steel piping which he would carry around with him. He took that prototype to two friends who worked in the steel industry, who built a more sophisticated version with a high hook for the fresh bag and a low hook to drain out the old bag. Penn had one for work, one for home and one for the bach – and had another seven made which he donated to Waikato Hospital to lend to patients who could not afford to buy one. Penn plans to run Hamilton's Round the Bridges race to fundraise for more stands.

Penn with one of his homemade dialysis stands.

The waiting list for a deceased donor, he was told, stood at about four years. So securing a living donor was a much more realistic path (donating is relatively low-risk procedure; the most famous example being the donation by radio DJ Grant Kereama to the late All Black Jonah Lomu).

Penn found himself able to joke with friends and family about experimenting with pig kidneys or kidnapping a tourist and stealing an organ from them, but found it difficult to have a direct conversation about donation. 'In hindsight, it would have been good for me to have an open and honest conversation with people, but I felt I was asking people to do something really big, and I didn't feel comfortable saying ‘hey, do you mind giving me your kidney?' ''

Neither of Penn's brothers felt able to donate, but a friend, Pieter Vreede, volunteered. Blood poisoning from a tattoo knocked him off the list. Then another mate, Matt Roberts, volunteered, but was ruled out due to blood in a urine sample. My partner, Emma Jones, was next on the list, but by then Vreede was recovered and ready, and told Penn: 'I want you to be able to be a husband and a father to your family again.”

Vreede had researched the odds of anything going wrong, consulted his wife and daughter, talked to a previous donor, and had his sister lined up to donate a kidney if anything happened to his remaining one. 'Once you've offered, you know it's really hard to retract, so I wanted to do my homework first,” he says.

Having found family life a struggle after his own severe lower back injury some years earlier, Vreede could observe the impact on Penn's own domestic life. But Penn marvels at how an outsider could recognise what he had not. 'I didn't realise he could see something I couldn't: that I was struggling to be a father and a husband,” he says. 'It's amazing that he could see that way back then and I couldn't. He had seen those changes. When I was in it, I couldn't see them. Looking back, I can.”

While Penn says he 'never thought, ‘I'll die in six months'” and accepted life as it was, he says now that he realises he became snappy with his children, Molly, 12, Carter, 11, and Stella, 9, and his emotions were impacted – he found it hard to derive joy and happiness. He thinks he made rash financial decisions, like taking out a bank loan to buy a boat without consulting his wife.

'I think it is much harder on the people around you than the person going through it,” he reflects. 'You get on with it, but you don't see the impact it is having on other people. You're in survival mode. Gemma had the consequences of my daily actions and decisions … she might say I was a f...ing nightmare.”

Gemma Penn is quite forgiving. Recalling nights where she would find him asleep, passed out on the bathroom floor after vomiting, she says: 'He did the best he could, given how much energy he had, there was nothing extra left.”

The donation system dictates that only one candidate is prepared at a time and it was, says Vreede, a laborious process. He had at least 10 appointments – including a psychologist's consultation – before he got on the operating table. 'They are very good, and they give you an out all the time, but you are acutely aware you have just soaked up months and months of time that someone else could potentially be filling,” he says. 'Partly, I think it's to give you a chance to digest what's happening and give you a chance to pull out.”

The operation, finally scheduled for July 20 last year, was delayed at the very last moment – Vreede recalls the surgeon had already drawn his cut marks on his torso – due to a shortage of ICU beds because of the RSV outbreak in Auckland. Fortunately, it was put back only three days, before Vreede underwent four-hour surgery and Penn six hours under general anaesthetic.

The substantial scar which now arcs around his midriff is where they cut Penn open to install his new kidney – leaving the original two in situ, where they still operate at about 4 per cent capacity – and attach it to the main artery in his leg.

On the second day after the operation, he says: 'I thought this is not worth it, I wish I'd never had the transplant. I had a lot of regret.” Gemma laughs: 'He's not a good patient.”

Penn was in agony. He had a distended stomach because he was unable to pass a bowel motion for several days, which left him unable to sleep. Eventually, he had a tube inserted down his throat into his stomach to remove waste. It was removed once because it was so painful, and then reinserted. His 20-centimetre-wide wound leaked so much he slept on towels.

But by day three, he and Vreede – who was also experiencing bowel problems – were able to sit together and watch the Olympics.

Vreede ended up taking off a total of 10 weeks, and says his company, Electrical Supply Corp, was a model employer.

He says he would recommend donation to anyone. He even feels special, given his belief that within a generation medical science will have delivered artificial kidneys and rendered donation obsolete. 'Absolutely. If you can dedicate the time, and you're healthy enough, I would do it without reservation … The risk versus reward for me was a no-brainer.”

For Penn, Vreede has 'given me my life back. There's no way you can thank someone enough for that.”

Gemma Penn says: 'He has saved not only Wocky's life but our family – I am very grateful the kids have got a dad now who can partake in family life with us, have meals, go bike riding, go tramping, go on the boat and fishing, things he was never able to do before when he had no energy and because dialysis took up so much time.”

It's a cloudless January afternoon as we talk, sitting outside the same Pauanui bach. We walk down towards the beach together. A year ago, says Penn, looking to his right, he struggled to climb up the 367-metre Mt Pauanui, way behind the rest of his family. This year, he had strolled up without much effort.

On the beach itself, he would have worried about getting sand in his tube and potential infections. As he prepares to jump in the surf, he notes another tiny improvement: last summer, he needed a full wetsuit to venture in and would only last a few minutes before he felt too cold.

Last year, he had that ute-full of fluid; this year it's an ice-cream container of pills (he takes 16 a day, but the dosage is decreasing).

'I said to my doctor the other day: ‘I'm running at 80 per cent, and I need to be at 110 per cent.'” The doctor, he says, laughed and told him he needed some perspective – he'd gone back to work three months earlier than most, and it would take a full year before he felt fully well. Gemma puts him at a 'solid 60 per cent”.

But he has his happiness back, and is finding joy in the small things people take for granted – in particular, being able to get up, eat, and go to work without having to undergo dialysis. 'I just have an extra two-and-a-half hours a day to do things I want to do.” He can go in the spa pool with Gemma again, eat with the family, ride his mountain bike.

He's cheerful now, but he was cheerful back then as well. 'I've always felt really grateful,” he says. 'Grateful I didn't have anything worse.

'All I had was kidney failure, so I've got nothing to moan about, because there's always people worse off than me.”

-Stuff/Steve Kilgallon.