The Gift of Life

Organ donors leave behind one of the greatest gifts of all. "Someone had to die for me to live."

That's been the hardest thing for liver transplant recipient Linus Maxwell to get straight in his head.

The Blenheim man received a donated liver in July 2007 after being diagnosed with hepatitis C a year earlier. The gratitude he feels to the woman whose liver saved his life has been a powerful incentive to make the most of every day and look after his body.

Through the donor co-ordinator, he has written to the donor's family telling them he is really well and thanking them for the gift of new life.

Mr Maxwell was 17 when he contracted hepatitis C by sharing needles a stupid mistake of youth that came close to killing him 30 years later.

The disease was discovered in 2006 after a crash while racing downhill on his pushbike. X-rays picked up not only two cracked vertebrae but also an abnormal liver.

"In a way it was stink, but it saved me."

Six months later Mr Maxwell spent a week in Auckland Hospital's liver transplant unit while his suitability as a donated organ recipient was assessed. With 100 people wanting a liver and nowhere near that number coming up each year the odds were not good. But a week later he was sitting at No3 on the waiting list.

"They always said my positive attitude would get me through," he says, "I had no doubts, if I got an organ donation I would be fine."

At the time Mr Maxwell felt good. But only three weeks after returning home he was on a Flight for Life back to Auckland Hospital where first he fought for his life then focused on getting healthy enough to receive a transplant.

"I was bleeding from the bowel and lost 10 kilograms in four days. It was touch and go."

It was five months before he was well enough to eat, walk, talk and return home. A few weeks later he got a phone call from Auckland Hospital, saying "we've got a gift for you".

The anticipated 12-hour surgery to replace Mr Maxwell's diseased liver took only three hours and 54 minutes "a new record" and he woke up six hours later rather than the two days he'd been led to expect.

"My good physical state meant there was plenty of room for the liver and I recovered pretty well straight away.

"With fresh blood running through my body after months of being sick I felt like getting up and going for a run."

During the recovery period that followed, Mr Maxwell and his wife Gayle stayed over the road from Auckland Hospital in Transplant House funded by the Lion Foundation, a facility Mr Maxwell says was excellent.

"Having Gayle as a caregiver lying in bed beside me was great."

Three months after leaving hospital this outdoors man was back surfing.

Mr Maxwell was given a liver that had been exposed to hepatitis C but not affected, which meant it had some immunity. But just over a year ago, things went downhill; his new organ was getting sick and needed treatment.

In the months since Mr Maxwell has been taking powerful drugs that have triggered dozens of side-effects, including exhaustion, aching bones and muscles, nausea, grumpiness and irritated skin from head to toe. Worst of all was a crushing depression.

But giving up was not an option.

A month after completing the treatment (he was later told most can't withstand the entire course), Mr Maxwell joined friends on a charter trip to Stewart Island. Back with nature, he fished, scalloped ... enjoyed what life has to offer.

"It was awesome; a change of head space."

He's since ridden to the top of the Wither Hills bike park and run halfway up Mt Robertson behind Rarangi "me and the dog".

"On Sunday, I went out surfing for a three-hour session at Robin Hood Bay."

Mr Maxwell admits that before he got sick he had a phobia about doctors so largely stuck with Maori and herbal cures. Hepatitis C forced him to change his ideas. "You can be critical about the medical system but when you really need it it is there fully.

"I had to take my foot out of my mouth. The care I got from nurses and doctors was fantastic," he said.

One downside albeit small of being an organ recipient had been giving up alcohol, said Mr Maxwell. While the odd drink was meant to be OK, "I think stopping at only one would be even harder". Especially difficult was not being able to join friends having a drink at a party and being unable to return to a job he loved as a cellar hand.

"I got the chance to get a liver and don't want to blow that.

"If I abused a gift that someone else could have used, I would be a waster."

He is 52-years-old now and intends to live to 80.

FINDING THE RIGHT MATCH

It is a persistent myth that the families of people who donate their organs often over-ride that decision, says Organ Donation New Zealand clinical director Stephen Streat.

About half of New Zealanders tick "yes" to organ donation on their driver's licence, but only about one in 20 families then say no, according to Dr Streat, who recently visited Wairau Hospital in Blenheim to talk to staff who might look after patients who could become donors.

Donation was not possible in more than 99 per cent of deaths, he said. About 1100 of New Zealand's 29,000 deaths each year took place in an intensive care unit (ICU), and of those only 50 to 100 happened in circumstances where donation was possible.

"You need to be in ICU on a ventilator with devastating brain damage, usually a bleed in the brain, not trauma."

Dr Streat said most donors were in their 40s, 50s or 60s. About 60 per cent had died of a spontaneous haemorrhagic stroke and about 20 per cent from a physical injury to the brain.

Occasionally, donation was possible after cardiac death, Dr Streat said.

The liver was the most likely organ to be donated, followed by the kidneys, heart, lungs and pancreas. Other tissue, including heart valves and in some cases skin, could also be donated.

Surgery to replace a diseased organ with a healthy one cost $75,000 to $200,000 compared with perhaps $10,000 to $30,000 a year for ongoing treatment.

Some cultures believed that the removal of organs after death was disrespectful, but despite this, ethnic background was no barrier to donation, said Dr Streat.

"The Organ Donation NZ mission is to ensure that nationally, the organ donation opportunity is offered regardless of race, age and religion, and to ensure the procedure is carried out by people who know what they are doing."

Communication was possible between donors and recipients, usually via a letter delivered through the transplant service.

"The letter is required to be anonymous and respectful, and the donor family receives it only if they want to."

Increasingly, both sides were getting in touch through the internet, he said, but it was a trend he did not encourage.

"Interaction between donors and recipients is not all apple pie and sliced bread."

Recipients could feel, quite wrongly, that they caused the donor's death by wishing for a donated organ, and donors' families sometimes had the misconception that the recipient in some way replaced their loved one.

By Penny Wardle - The Marlborough Express

Photo by Ben Curran