Former Labour MP Georgina Beyer is one of about 700 people on the waiting list for a new kidney. Photo / Hagen Hopkins
Of all the places to perform dialysis, the back seat of a car in the South Island's Lewis Pass must be one of the strangest.
Former MP and Carterton mayor Georgina Beyer, 57, admits she received odd looks from other motorists as she gave herself the treatment. But, in her third year of kidney failure, on the transplant waiting list, she sees it as a victory.
She must have peritoneal dialysis four times a day and having anything like a normal life is difficult. Taking her dialysis equipment and medication on the road was the only way she could campaign in last year's General Election, when she contested the Maori seat of Te Tai Tonga for the Mana party.
Beyer has no way of knowing how long she will have to live like this, or when the call might come for a transplant, and work is one of the things she misses most.
"I asked my consultant how the list works and it's not in order 'your turn's coming up', or anything. They look for the best match they can for deceased donor kidneys."
Beyer is one of about 700 people on the waiting list for a new kidney. About 170 people are added to that list each year, but only about 110 transplant operations are performed each year so the gap grows.
Beyer says the diagnosis of kidney failure was devastating and came without warning. Her ophthalmologist was conducting a final examination before an operation to fix her cataracts when he told her he could see capillary haemorrhages in the back of her eye.
"Cataracts turned into kidney failure. They did a biopsy and found my kidneys were functioning at only 6 per cent and declining."
The doctors could give her no indication of the cause. She is not diabetic and does not have auto-immune problems. Until that point, she had been fit and healthy.
"When they hit me with kidney failure I was just gobsmacked. I tried to work out why - had my misspent youth finally caught up with me? - but they said it is just one of those things."
Within two weeks, the dialysis catheter had been fitted and the effect of kidney failure started to hit. Beyer's health declined dramatically.
"I lost weight very quickly, to the point they were getting a bit worried and told me to pull myself together."
Her health is monitored constantly. A nutritionist helps keep her diet free of things that will be hard for her body to handle, such as potassium-rich bananas, tomatoes and even citrus fruit, which can affect her medication. She administers her own injections to counteract anaemia. Beyer reminds herself that children with diabetes manage to self-administer insulin, but it does not stop her stomach turning as she inserts the needle.
"While I'm in good shape, I'm a good recipient. If they rang tomorrow and said, 'Get in here, we have a kidney for you', they want to know that you are in the best possible shape you can be for the operation."
She lives alone and barely touches alcohol. "I'm a cheap girl to take out now. It was not always so."
At first, Beyer tried to tell doctors other patients, such as children or people with young families, should be given preference for a transplant.
"I'm single, unattached, no dependents. Someone with a young family, they need their parent. But that is easy to say when you are relatively healthy."
Beyer hopes she will receive a kidney before she deteriorates to the point where she needs hemodialysis, done in a hospital. "That is a nightmare. I had to be on it for a short time and I had to plug into machines for five- or six-hour sessions. I hated it. I told the consultant I don't want to go there. Please can we have the transplant before then."
But Beyer knows a transplant will not necessarily be a silver bullet. There will be drugs for the rest of her life, a higher risk of cancer and there could be further complications.
"Take Jonah Lomu's example. [Radio host] Grant Kereama donated his kidney and it all went tickety-boo but it only lasted seven years and now he is back on hemodialysis, hunting for another kidney."
But she has also heard from transplant recipients who made a dramatic turnaround almost within hours of receiving a new kidney.
"They say it is a new lease on life and virtually instantaneous if there are no complications. You could be back at work within a month."
While she waits, Beyer is trying to get out as much as she can. From her central Wellington home, she can walk to Oriental Bay and the waterfront. She says she will move mountains to get on the bus for the five-minute trip to the hospital when the call does come.
"I used to turn my phone off at night and I don't have a landline. Someone said, 'What if they ring you at 2am, you wouldn't know'. Now, I don't turn my phone off at night."
The usual wait for a kidney transplant is about five years but some people's health deteriorates too much in that time.
A live donor is an option, but Beyer says even that is not straightforward. She has been told the process can take up to 18 months as the donor must go through rigorous screening and counselling to ensure they understand the implications.
"If they kindly are willing to donate a kidney, they have only got one and what if that one clapped out? They are in the same boat as I am."
What Beyer misses most is contributing to society in a meaningful way. "I'm on the invalid's benefit and it cuts life short, really. In the first six months I was heading towards a depressive state because suddenly my life had come to a full stop and the future was looking bleak. I had to get out of that mindset because it is not healthy."
She takes any bits of work she gets, such as speaking engagements, but her political life is largely restricted to yelling at Parliament TV.
Her dream is to have the transplant and recover in time to stand at the local body elections next year. "You've got to have a bit of a goal. Last year, I tested it out by doing a favour for Hone Harawira and having a go for Mana. On a personal level it was a test. I've got to do dialysis four times a day - how do I get around the biggest electorate in the country, Te Tai Tonga? Well, I did it. I did not campaign as hard as I'd have liked but I did it."
She says "end of life" thoughts occur from time to time. "If I'm having a trough day I just curl up and go to bed. Who knew kidneys had so much to do with your good health?"
Nurse Jane Donnelly is going back to work at the end of next month and she can't wait.
Five weeks ago, she had liver transplant surgery. After five years of degenerating health that forced her out of work and made her worry she would lose her house, she is amazed at how well she feels.
"I'd kind of forgotten what to feel well is like. Every day I see little improvements," she says.
"The first thing I noticed was that my eyes were white. Suddenly I didn't have yellow eyes, I remember gazing in the mirror thinking 'this is incredible'."
The 58-year-old from Christchurch suffered cryptogenic hepatitis, the cause of which is unknown.
Last year there were 43 liver transplants from live and deceased donors.
Donnelly was put on the waiting list for a transplant in January but almost did not make it on to the operating table. Last month she was rushed to hospital in Auckland where she fell into a coma and was put in intensive care.
She was almost too sick to qualify for a transplant but Donnelly remembers, fading in and out of consciousness, telling her consultant that she was not ready to give up.
He found a suitable liver from a patient who had been on life support for six weeks.
Even her doctors have been impressed by her recovery and have told her she can now expect to live to be 90. "I went to the movies a couple of days ago. I stopped going because all I did was fall asleep but I watched a whole movie. It was so exciting to think, 'Wow, I can go to the movies now'."
Before she heads back home to Christchurch, Donnelly is determined to make it to the top of Rangitoto.
"I don't care if it takes me four hours, two hours, six hours, I'm going to get to the top of that island, nothing is going to stop me. That will be my celebration moment."
Donnelly wants to offer thanks for the support provided by Lions Transplant House in Grafton, where she has been recovering.
• Part 1: A new lease on life
• Part 2: The hardest decision
• Part 3: Faces at the front line
• Today: On the waiting list
They allege the Crown ignored Treaty obligations by not engaging with them.