Reproduced courtesy of the Manawatu Standard - June 16 - 2004

Caring and Sharing

As dialysis patients waiting for kidney transplants outnumber the supply of kidneys donated from those who have died by five to one, more and more people are looking to their nearest and dearest living relatives for help. Health reporter Janine Rankin talks to Levin woman Sue Clapperton about her pending gift to husband Bryce.

WHEN Foxton mechanic Bryce Clapperton was accepted for the national transplant list for a new kidney, he and wife Sue enjoyed a moment of celebration. After years of oscillating health, he was deemed sick enough to qualify for a chance at a better quality of life.

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He’d proven he was a compliant patient, who could manage his dialysis, who would take his medication, follow the rules and take care of a new kidney. But then the awful reality of the waiting list sunk in.

 â€œWe realised it might be another four years, or another seven years, or he might never get a kidney because of the importance of cross-matching. “He might become sicker, and no longer qualify, and might die first,â€? says Sue.

There are close to 350 people on the waiting list. Last year, 37 people who died offered their kidneys for transplant -offering hope for 74 patients.

But it’s not as simple as waiting. Donated kidneys go to the patient with the best match, not the patient who has been waiting longest.

And so Sue began the process of finding out whether she could offer a way around the problem.

It was once rare for spouses to be able to donate, as siblings, parents and children tend to provide the best chance for a close tissue match.

But under pressure to find a solution, and assisted by improvements in anti-rejection medication, it’s no longer so unusual.

It’s a gift that costs, but a spouse has the greatest incentive to try.

The Levin family’s health saga began quite suddenly, more than nine years ago, when the children - Heath, Jabin and Rachelle -were all pre-schoolers.

A fit 32 and running 70km a week, Bryce had no idea of the irreparable damage that had affected his kidneys until he collapsed in the toilet one morning.

His case is something of & mystery. Doctors have never found the cause. It wasn’t diabetes, there was no history of likely infections, no clues in his family or in his childhood. And against the odds, he went into remission.

Once he was stable on medication for blood pressure and changed his diet, some kidney function returned, and he was able to keep on working without the need for dialysis.

Sue says members of the “church family� prayed for a cure.

That didn’t happen, but the temporary improvement bought time until the children were older and the couple were better placed to cope with the challenges.

It wasn’t until December 2002 that Bryce started to turn orange, have skin problems, tire easily and lose concentration.

It was time for dialysis, for the frequent hospital visits that would eat up the couple’s sickness and annual leave entitlements, and for a lifestyle organised around Bryce’s dependence on artificial kidney devices.

 For a time he used CAPD - continuous ambulatory peritoneal dialysis. It involves feeding fluids from a bag through a catheter into the abdomen to help remove water and waste from the blood, with the used fluid draining out by gravity.

Bryce had to carry out a bag change four times a day.

He was able to keep on working, with his own private space set up at the garage where he could do his lunchtime change.

“He has never stopped working. He’s never been sick enough for a sickness benefit, and he’s wanted to work anyway, even though there have been times when he wished he was at home, and times I think he should have been.â€?

It’s been a pattern of work, eat and sleep, interspersed with singing and playing the bass guitar and the family’s love of music.

Later, he moved on to a cycler machine - an automated version of the peritoneal dialysis process that continues overnight while the patient sleeps.

“It made life simpler. It meant he didn’t have to change a bag at work and so there was less chance of infection,â€? says Sue.

“But from 8.30pm the bedroom looks like a hospital room while he’s attached to a machine.â€?

Although using the machine gave the couple more freedom during the day, there was a daily deadline to meet.

A late start meant Bryce would be late for work. The whole family learnt how to warm and prepare the fluids and attach Bryce to the machine in case he was ever unable to do it himself.

Planning was paramount, including planning for power failures and accidents, and planning the budget.

As Bryce’s driver, Sue hasn’t found it possible to work full-time. The Guide leader works part-time for ’s Radio for the Print Disabled. And she’s very conscious of the costs of being a donor.

Eleven times she’s had medical appointments during the work-up. There’s no compensation for the lost earnings, or for the time off when she eventually has surgery.

“I sometimes feel that if the Government can pay for people to go overseas with a caregiver to wait for other types of transplants, why aren’t they helping families in ?

“I feel everyone should have the opportunity to have an organ if that’s what’s needed, without anyone being put off by the cost.â€?

After the first blood test that showed she might be compatible, there was an air of excitement.

“But you have to be prepared that with every test you have, the door could shut. And you have to be mentally prepared for the risk that the kidney you donate will reject and it will be wasted.�

The compatibility testing process began last September, and now there’s only one final test to pass.

“We’re a very good match for non-blood relations. It’s quite amazing, and scary;â€?

The prospects for a successful transplant are higher with living donors because the tissue matching has been more thorough, and the

 kidney removal happens at the last possible moment, without the panic of courier packs and bleepers in the night.

And Sue takes extra satisfaction - from knowing that by donating to Bryce, she’s also helped free up a space on the national waiting list for someone else.

It’s like giving twice. In the meantime, Bryce has stopped dialysis, and his kidney function has improved to about 21 per-cent.

The couple are now waiting for that to drop to 19 percent before the risks and benefits of surgery tip into balance.

“Personally, I don’t mind waiting,â€? says Sue.

‘A successful transplant might only last 10 or 15 years. So the longer we wait, the longer we’ve got at the other end.â€?

She’s also hoping Wellington surgeons will have time to perfect the art of keyhole surgery so that her operation doesn’t have to be such a major one.

And after that, there’s the hope that Bryce will be one of the fortunate 90 percent of living kidney recipients who can look forward to years of feeling well, of having more energy; and swapping dialysis for a handful of anti-rejection pills.