Kidney transplant recipient Chantelle Good and kidney donor Tom Davies catch up following their respective operations.
As World Kidney Day approaches, Te Awamutu Courier editor Dean Taylor meets two Te Awamutu people at opposite ends of the donor process whose lives have been changed.
In my job I have met many people who should be beyond despair through illness or adversity, but instead display strength, willpower and positivity that is hard to comprehend.
I have also met many people who are selfless and giving, who go out of their way, and even give up something important, to help others.
This story is about two such people — their stories related because the plight of one led to the extraordinary generosity of the other.
And, in the end, that extraordinary generosity benefited a third party — a complete stranger, who remains anonymous. But there is a happy ending all round.
The story concerns two Te Awamutu people, Chantelle Good and Tom Davies.
Chantelle has a genetic kidney disease and for eight years was on the kidney donor register.
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In the past I have described Tom as a serial blood donor.
On the day I started putting this story together I made my 171st blood donation — giving plasma at the New Zealand Blood Service Hamilton Donor Centre.
In August 2017 I did a story about Tom giving his 400th donation — and he is still an active donor.
He is one of New Zealand's few "super donors" — a fact relevant to this story.
But we will start with Chantelle.
Her disease is inherited from her father, Warren Good.
His disease manifested itself when he was 39 and he underwent a kidney transplant in his early 40s.
That was 16 years ago and he has been healthy ever since.
Chantelle's kidneys failed suddenly in April 2012 — when she was just 24 years old. She has familial focal segmental glomerular sclerosis (FFSGS) — a rare condition that can be traced back through seven generations of her family.
In most people the kidneys will get scarring when a person is ill, but it repairs. FFSGS prevents that healing.
She had known about the gene since she was 15 but didn't expect it to cause failure at such a young age.
Since then she has learned that having her son when she was 21 put extra pressure on her system and may have contributed to the early onset.
Now aged 10, her son Kameron also has the gene. He understands it is probable, but not definite, that he will have kidney failure also.
The family live with the knowledge, but don't let it rule their lives.
Chantelle started dialysis after her kidney failure and continued on a regular basis, as well as having to attend hospital on numerous occasions for emergency treatment.
The kidneys filter blood, get rid of toxins and manage nutritional flow.
Chantelle says if any of those processes don't occur she gets very sick, very quickly.
For two-and-a-half years Chantelle would undergo peritoneal dialysis, a daily routine self administered in the home whereby a fluid was circulated through a tube and into the abdominal cavity, where it would absorb waste products and then be drawn out and discarded.
It was a 10-hour process.
Chantelle says it wasn't that effective in her case and she changed to hemodialysis — also self administered at home.
As the name suggests, it is dialysis of the blood — Chantelle would connect the machine's tube to a fistula and blood would flow through the machine to be cleaned.
The fistula is a surgically created connection between a vein and an artery. Chantelle was using her fourth fistula up until a kidney donor was found.
She hadn't given up hope of a transplant — but she had waited a long time.
"I'm a hard match, apparently," she says.
"Many matches were tried, and failed."
Chantelle had been expecting to be put onto the donor exchange with Australia to try to widen the net when the good news came.
"It happened fast," she says.
To avoid identification of the donor, times and dates cannot be published — but a little over three-and-a-half hours after getting the early morning call, Chantelle had told her family, sorted care for her son and was at Auckland Hospital.
Nine hours later they were operating.
But it could have been very different.
"I slept through the first phone call," says Chantelle.
"Luckily they persevered and rang my partner, who was at work
"He rang me until I woke up and then I contacted the hospital.
"They just said 'come up and have a kidney'."
Chantelle has come through the first three months in good shape.
She says two biopsies show small signs of rejection, but it is being managed and is expected to go away.
She has clinics every week and blood tests every fortnight that will continue for a year. Then she will have annual check-ups.
Chantelle says she will quickly know if something goes wrong.
Her routine for looking after her new kidney is to watch her food — concentrating on a healthy diet and drinking what would be considered an excessive amount of water.
"It is important not to let the kidney dehydrate," she says.
"I have to keep it working."
The unfamiliar outcome for her is the strange process of having to "pee".
"I didn't pee for seven years on dialysis," says Chantelle.
"Its a weird feeling for me."
She has high hopes now with a new kidney.
"They told Dad his would be good for 10 years, and it has been 16," she says.
"I'm hopeful mine will be for a lifetime."
What Chantelle didn't know until after her transplant was that Tom had offered his own kidney for her — but they weren't a match.
Chantelle and Tom had been acquainted through the executive of the Te Awamutu Chamber of Commerce, where they both served.
On learning of Chantelle's disease, Tom started to mull over how he might help.
"I'm already a blood donor and have 'donor' selected on my licence," he says.
"I've told all my children to give away what they can when I die."
He says he found Chantelle's story inspirational and decided he would see if he could offer one of his own kidneys for transplant.
That was at the beginning of last year.
Tom approached the Waikato District Health Board Regional Renal Unit.
"I knew age would be a factor, I was 72, but I was healthy and fit, so why not?"
Over March and April he talked to his and his wife Jill's six children and their siblings and said if anyone needed a kidney in the next eight years they should tell him now.
He says it took a while for some of the children to accept the idea, but eventually everyone was supportive.
Between February and October he was thoroughly tested.
"I ticked all the boxes along the way," says Tom.
"The only one that didn't get ticked was being a match with Chantelle."
Tom understood the chance of matching her would be low — it is generally about a 20 per cent chance.
There were two other options.
The first was a paired match co-ordinated by the Australian donor agency; donating your kidney to another matching recipient, their donor to another matching recipient, and so on — until everyone gets a transplant.
Tom says that could be complicated and still not result in a successful match for Chantelle.
"Besides I didn't qualify because I was too old," says Tom. (Their live-donor maximum age is 70.)
The second option was to be an anonymous donor — and that is the option he chose.
"I had made up my mind to donate a kidney, so that's what I did," says Tom.
All the testing had been done, so it just meant waiting for a matching recipient.
In October last year he got a call and he and his wife Jill went to Auckland Hospital where the operation took place.
They were put up in a motel nearby where he would be able to stay afterwards for follow-up care.
On the operating table they removed his left kidney and four-and-a-half hours later it had been transplanted into the recipient.
He spent two days in hospital and was in Auckland under care for a total of 10 days.
Tom says recovery is going well, although he noticed small things like getting a cold take longer to shake.
In January, Tom had his three-month post kidney donation nephrectomy and was told he was doing well at that point.
He was also told by the kidney co-ordinator that his donated kidney was doing "fabulously".
Tom was given the go-ahead to take part in a 22km trail run, which he did on February 8, and resumed plasma donations in the middle of February.
And since the success of both transplants, Chantelle and Tom have had open conversations about Tom's offer and subsequent anonymous donation.
"I have no regrets about what I have done," says Tom.
"Presumptuous it may be, but since both her donor and my recipient remain anonymous I consider Chantelle to be my surrogate recipient."
March marks Kidney Health Month and Kidney Health New Zealand (KHNZ) is urging people to be kind to their kidneys and to raise awareness for kidney disease.
Kidney Kind is this year's message for Kidney Health Month 2020 – which also incorporates the upcoming World Kidney Day this Thursday, March 12.
The organisation says being kind to your kidneys means drinking water, eating good real food, exercising and getting a kidney fitness check.
It also says the best way to reduce the impact of kidney disease is by early detection, which is why getting fitness checks are important, the checks entail a doctor checking blood pressure, ordering a urine test to check for protein and ordering a blood test.
To find out more information about Kidney Health Month and kidney disease or to donate to KHNZ to support its work, visit kidney.health.nz.
'He has disregarded our voice and continued with this divisive kaupapa.'