Donor Organs Offer a New Lease of Life

Within a minute of getting together, the three of them are discussing drugs.

For almost a decade now, Pat Caughley has had a lung that once belonged to someone else. Murray Hosking has had his heart for seven years. Andrea Needham is the newest recipient - her double lung transplant was carried out in March.

All three need to take long-term medication to supress their immune systems and stop their bodies rejecting the donated organs. So a favourite topic of conversation is what drugs they are on and the varying effects they have on their bodies.

Andrea, 58, jokes that the prednisone she takes to help prevent rejection has the unexpected side effects of adding youth - her cheeks have become chubbier.

The trio were among nine heart and lung recipients who tackled the Around the Mountain Relay in Taranaki at the weekend. They took turns to walk on the 150 kilometre route, helped by three marathon runners and their "support people" -friends and family members who helped them get through the difficult transplant process. They completed their journey in 19 hours and 11 minutes.

The idea for the "Beaters and Breathers" team came from Andrea, who in her pre-transplant days had promised the organiser she would compete some day.

Through sponsorship, the team has raised about $10,000 for Hearty Towers, the recuperation centre for heart and lung transplant patients in Auckland.

Most patients spend about three months living there post-transplant and they often compete to see who can walk to the top of One Tree Hill the soonest after surgery.

Andrea says that besides fund raising, the relay team aims to thank the families of donors, to show them they are still alive and kicking.

Like most transplant recipients, she knows very little about her donor, but she does know that she she was a women in her 40s.

"My lungs are about 15 years younger than me. I think about her every day, without question. For us to live, someone has to die. That's difficult to live with sometimes."

The Oakura women spent 13 months on the active waiting list for her double lung transplant. Before the operation, she had been on oxygen and needed a mobility scooter to get around. Now she talks at top speed and it's hard to imagine a more energetic person.

"I can breathe and I can talk. I can dance and I can. Singing in the car is pretty cool."

She has also been able to travel overseas. In September, she and Pat travelled to Rome to take part in an international conference about their lung disease - alpha-1 antitrypsin deficiency, a genetic disorder.

People with "alpha- 1" have low levels of an enzyme inhibitor that protects lungs from a particular enzyme. If left unchecked, the enzyme can atttack healthy lung tissue. This can cause lung disease ( such as asthma, chronic bronchitis and emphysema), and less commonly, liver disease.

Pat, 64, found out she had the disorder in 1962, when she was a teenager working in a laboratory. She decided to screen her own blood but nobody could tell her what the signifigance of an alpha-1 antritryspin deficiency was.

"At that point, I was about 18 yeas old. I went off to university and I smoked and did all sorts of things you do in university."

People with "alpha-1" should not smoke, because it attracts massive amounts of the offending enzyme to the lungs - speeding up the lung disease.

"I did smoke and I had the full version by about 32. My full lung disease hit me very strongly," Pat, who lives in Wellington, says. At that stage, she was working for the diplomatic service and was on a posting to the high commission in India. "I didn't take it very serioulsy ... because I thought I was just unfit."

Over time, her condition deteriorated. When she was 49, she left her job to begin study at law school. "I used to go along with my oxygen under my arm and tried not to snort in lectures because it was to noisy. "I was on oxygen every night for two years before the transplant and quite often all day if I was running pretty low."

Walking around was hard.

"I drove my car a lot. I called my car the great equaliser."

By the time she had a transplant, at the age of 54, she was "extremely dehabilitated."

Success rates for lung transplants are lower than for other organs. According to Organ Donation New Zealand, the survival rate at five years is only about 40 per cent.

Life after a transplant is far from easy. Because transplant recipients have to suppress their immune systems with drugs, they are more vulnerable to complications from infections. And they are more prone to developing tumours and cancer.

Pat has had squamous cell carcinoma - the second most common form of skin cancer - three times now and lately her health has been declining. "I haven't been on a very good run for the last year."

She struggles to walk long distances. "I'm a very slow walker because I'm not breathing very well now. If I have to go up any hills, I'll be a complete disaster."

But after almost 10 years, she is pleased with how the transplant has worked. 'It's a very good length of time, actually. It's rather more than most people get. I've always thought that five years would be great. . I've already covered the odds, wich is extemely nice.

The transplant has made a "fantastic difference" to her life. "it's allowed me to walk outside."

Before the transplant, winds and smells could make her struggle to breathe.

She describes the relay team as a "neat" idea. "It says a big thank you to the donors' families and to show that we're still alive and enjoying life and this is because of you. We're all grateful for what they've done."

Murray had his transpant in 2000, at the age of 57. The donor was a young man. After writing to the donor's family a letter, trying to say things that "you can probably never eloquently express" he recieved one in reply. "I was absolutely blown away by their generosity and especially the fact that this was a heart transpant that could happen only because they had discussed that sort of eventuality."

Murray had a heart attack when he was 49, then a triple bypass in 1998. Doctors found his heart was irreparably damaged and it became clear a new one was needed.

The Lower Hutt man was on a waiting list for about 13 months.

I was incredibly unwell. I knew it would happen sooner or later. I was called up on a Saturday night just as I was sitting down to tea. I managed to get the last plane out of Wellington that night. I was under preparation within half an hour of arriving at Green Lane."

In the past "eight good years" since his transplant, four more grandchildren have entered the world and he has been able to return to work at the Conservation Department. Now 64, he's a fit, healthy-looking man.

He has become an advocate for people talking about their organ donation wishes. It is not enough to simply have "donor" printed on your licence, he says. Ultimately, the decision comes down to family members.

"And I guess that' the way it should be, too. But if the family knows what the poor person's wishes are then it's much easier for them to come to a decision.

"There is no substitute for families just talking it through. I think an increasing number of people do talk about these things.

"People never now what might happen. It's obviously better to talk about it without any threat hanging over anybody."