One donor has the potential to help up to 10 people. Photo / 123rf
James Ledingham was 11 years old when doctors broke the news he would most likely need a kidney transplant by his 30s.
Diagnosed with genetic kidney disease Alport syndrome, it was predicted in the years to come he would face complete kidney failure.
As predicted, the years flew by and by the time he reached 30, his kidney function deteriorated to between 10 and 12 per cent - leading to dialysis for about nine hours a day.
Every day New Zealanders like Ledingham are having their lives turned upside down as demand for organ transplants continues to outstrip supply.
Waiting lists can span out to years, with the biggest demand for kidney transplants and about 450 people waiting at any one time.
That is despite life-saving organ transplant donations doubling in the last 10 years.
Figures from Waka Kotahi show that nationwide there are about 2.1 million current licence holders (57 per cent) who have indicated they're a donor on their driver's licence.
And 1.6 million (43 per cent) have indicated they are not donors.
Organ Donation New Zealand's (ODNZ's) clinical lead Dr Jo Ritchie said organ donation can only happen through the consent of the deceased's family, as required under the Human Tissue Act (2008).
She is urging more Kiwis to speak to their families about organ donation, so more people can benefit from life-saving transplants.
"Unfortunately, when you are in this situation you will almost always not be able to be part of the decision-making process around this because of how unwell you might be. Those decisions are left to your whanau," Ritchie said.
Further, organ donations can only happen when a patient has died in an Intensive Care Unit, and it needs to be performed very soon after death.
ODNZ's latest annual report shows throughout 2021, 191 people received heart, lung, liver, kidney and pancreas transplants.
That was the result of families of 66 people who gave their consent for loved ones to have their organs donated following their death.
Many more received tissue transplants - including eye tissue, heart valves, and skin from these donors - with one donor potentially helping up to 10 people through the donation of organs and tissues.
For Ledingham, up until his mid-20s his philosophy was to "live for today" and deal with the kidney failure as it came up.
He took great care in managing a careful diet, avoided heavy drinking, and took regular medications to control his blood pressure.
But as his body slowed down, Ledingham, now 34, faced extreme fatigue and struggled to do his work as a structural engineer.
"My mental capacity was quite important to doing a good job and I definitely noticed that was reducing as time went on".
On top of battling brain fog and struggling to retain short-term memories, outside of work Ledingham was losing the physical ability to do the things he loved.
"I was pretty into my mountain biking and sailing, and was definitely finding that hard".
Ledingham was on a waiting list for two and a half years before he received a kidney transplant from a deceased donor, which he said has been "life-changing".
Since then, problems he was facing have cleared up - from issues with sleeping to concentration levels returning - and being able to do things such as bike riding when he can.
"I am grateful that person and their family have decided to make the decision they did make to donate that organ."
There is a further push for more education on the topic in schools.
Maddie Collins needs a kidney
Until West Melton teenager Maddie Collins was diagnosed with kidney disorder, her family knew nothing about organ donation.
But now it has consumed their lives, as the search continues to find the 18-year-old a matching kidney.
Diagnosed at the age of 5 with a kidney disorder, the young Cantabrian has had two failed kidney transplants.
The family is now in the process of putting Maddie's case before a transplant committee to decide if she will be eligible for another transplant or not.
Maddie's mother Sarah Manson has concerns there isn't enough education on organ donation - especially at the critical time when most teenagers in their last two years of high school are taking their driver's licence tests.
"When you go to sign up to get your driver's licence, there is no information about it, there are no posters on the wall, there is nothing in the school curriculum during PE or health to talk about it," she said.
Maddie has already used her experiences to make a difference - speaking at many high schools in Christchurch about organ donation.
"For us, we have a number plate that says KIDNEY and it's great because every time we pull into a petrol station or a garden shop somewhere it triggers a conversation with a person."
Manson said finding the right donor for Maddie would mean she could pursue her horse-riding dreams, and further her study.
"Once you are given that gift of life, it is life-changing not just for that person but the whole family as well."
While ODNZ has resources in place, it would love to see more education in schools, Ritchie said.
The Ministry of Education's secondary tertiary interface group manager Rob Mill said driver education does not form part of the national curriculum and is at the discretion of individual schools to decide on.
It isn't only kidney transplants in high demand.
Figures from ODNZ show corneal transplants are surprisingly common, with about 350 carried out annually.
Cornea transplant life changing - Esmeralda Lo Tam
For Esmeralda Lo Tam, 32, her life drastically changed when she found out she had keratoconus.
The common eye disease is when a person's cornea - the dome-shaped surface of the eye - thins and gradually bulges outward into a cone shape, and blurs vision.
Having played sport competitively until she was diagnosed, Lo Tam is now using her experiences to help others and is calling for more conversation about organ transplants.
Studying a PHD in ophthalmology at Auckland University, Lo Tam is working to understand how it affects Māori and Pasifika communities.
The South Seas Healthcare Clinic care provider is also aiming to incorporate free eye screening at her work to help prevent keratoconus.
"I know it does affect our younger people a lot more as well as our ethnic counterparts. We also have the biggest risk of rejection.
"I remember being in hospital with a little boy who was maybe 6 years old and he had already had four corneal transplants. That showed me a lot of resilience for being quite a young age and going through all of that but also because his immune system as a child tries to fight off foreign bacteria."
Lo Tam said before she was diagnosed, she knew nothing about the eye condition.
"It wasn't something I knew I had and by the time I was told I had it (at 28), it was too late and I needed a corneal transplant.
Lo Tam had worn glasses and contact lenses when she played sports since the age of 12, but issues with her eyes escalated over time.
The pain became unbearable and Lo Tam, who was living in Samoa at the time, began to lose her vision.
Upon flying back to New Zealand, her cornea had practically eaten away at itself with only 5 per cent left.
She faced risking losing her vision, but the biggest difficulty was losing the ability to play sport.
"I was very used to training on a daily basis and to be told I couldn't do any of that because it would put too much pressure on my eye, that part was definitely life-changing," Lo Tam said.
But following the transplant she is on the mend, and while she is no longer competitive, she is back running and doing social sport.
Lo Tam is urging for more New Zealanders to talk about organ donation.
"Almost anyone can be a donor and I know we have it on our driver's licence but that conversation needs to be had within our families."
• Co-ordinates donation from deceased donors for transplant units in New Zealand and Australia, and New Zealand tissue banks.
• Organises all aspects of organ and tissue retrieval.
• Four donor co-ordinators provide information and support for families of people who have donated organs or tissues, in some cases for a number of years.
• Available 24 hours a day to receive referrals of potential donors.
• Transplant units and tissue banks decide on the suitability of organs and tissues for donation.
• Responsible for educating health professionals to ensure nationally consistent processes for donation.
• Service was established at Greenlane Hospital in 1987 at the same time heart transplants became available in New Zealand. Became known as ODNZ in 2005.
• Organ Donation NZ 0800 436 667
• Australia/New Zealand Donor Registry
• Transplantation Society of Australia/New Zealand
The 19-year-old disappeared without her wallet or mobile phone.