Manawatū mum of three Aimee Carruthers recently needed a double lung transplant for a rare genetic condition. Photo / Anna Heath
The first thing Aimee Carruthers remembers after waking up in the intensive care unit with a stranger’s lungs inside her body is the wave of relief.
“I just thought, thank God I’m alive.”
When emerging from the haze of anaesthetic and painkillers, she was struck by a feeling of euphoria and “absolute happiness” at seeing the smiling faces of her husband and daughter at her bedside.
That same morning, she had to say a painful farewell to them, knowing there was a significant risk involved in the six-to-12-hour surgery.
When NZME visited Carruthers at her home in Halcombe, Manawatū, in February, her rare lung condition had deteriorated to the point at which she was permanently on oxygen to survive.
Carruthers’ disease – alpha-1 antitrypsin deficiency – is a genetic condition that causes a heightened susceptibility to inhaling noxious substances, dust and pollens.
As a young person, she smoked for about 12 years, but was not aware of her heightened risk of developing the rare condition.
“You never think about breathing until it’s all you can think about,” she says.
In order to live, she was moving around her two-storey home with a long cord that connected to an oxygen machine.
Trips outside the home required a heavy, portable oxygen tank.
At her lowest point, she sobbed in the car while driving to work, worried that she would not be able to make it through the next weeks or months until an organ donor became available. In many ways, she felt trapped in her body.
Even walking up stairs and taking short showers required her to stop constantly to catch her breath, and left her weak and heavily fatigued. She lost weight and her skin turned grey from the low oxygen levels.
Last year, organ donation could be considered after only 1.6% of deaths in New Zealand.
In these cases, the individual almost always cannot communicate their wishes, and it becomes the choice of the family whether they allow an organ donation to take place, Organ Donation New Zealand clinical director Dr Jo Ritchie explained to the Weekend Herald.
“It’s often really sudden and really hard for them [the family],” Ritchie says.
The International Registry in Organ Donation and Transplantation said there was a rate of 13.2 deceased donors per million population for New Zealand in 2024.
This amount was significantly lower than countries with comparable health systems, such as the United Kingdom at 20.37, and Australia at 19.74.
Seventy people donated organs after they died in New Zealand last year, which helped 213 people receive lifesaving transplants such as kidney, liver, lungs and heart.
“They [organ donors] are not a dime a dozen,” Ritchie says.
The ripple effect of one person not receiving an organ means a longer wait for those on the list behind them, and a continuing pressure on the health system to support those patients.
Ritchie says there needs to be better resourcing for organ donation experts – who are typically nurses – to be present in hospitals to speak with families in situations after a sudden death when organ donation is possible.
The UK and Australia undertook large reforms in organ donation in the past two decades and invested heavily in transplantation services.
Other countries have starkly different methods for carrying out organ donation. In Northern Ireland, all adults are considered potential organ donors unless they choose to opt out or are in an excluded group.
There remains an aching pain in Carruthers’ sternum and a large scar that stretches across her chest. They are a constant reminder of the precious gift of life she received from a stranger.
Since surgery, her lungs have been functioning well, and the change has felt like the flick of a switch in allowing her to breathe again.
The transplant process is anonymous, so Carruthers does not know who donated their lungs to her. However, every transplant recipient is given the chance to write a letter to the anonymous donor’s family to thank them.
“They are somebody else’s lungs, but now they’re my lungs,” Carruthers says. “I know some people really grapple with that and struggle. I don’t think I have, but I do get really emotional when I think about the donor.
“That’s tough, because somebody lost their life so I could live mine, but I try to remind myself that it was their wish.
“I can never explain how grateful I am ... I truly believe it’s a gift.”
Infection and rejection of the organ are risks involved with organ transplants, and it means she will have to take immunosuppressants and be monitored for life with regular check-ups.
Carruthers was determined throughout her illness to continue going to work, helping with renovations on her dream home and lugging around her oxygen tank to spend time with her three children.
“I knew if I stopped, it was going to go downhill quickly.”
Having “donor” written on your driver’s licence is an “indication of intent”, but is not a legal requirement, Ritchie says.
Families typically respect the wishes of the deceased, but sometimes they are unsure what the person would have wanted.
“People need to have that conversation with their family. It’s much more powerful than just having it on your licence.”
A request written in a will is futile, because this will not be read until long after the person has died.
“Wills don’t work in a timeframe that’s conducive to tissue or organ donation,” Ritchie says.
There is no age limit to organ donation, and it doesn’t matter if the person has been a drinker, smoker or had other diseases. Each situation can be assessed on its own merits.
Tissue donations, such as eye tissue, heart valves or skin, are also valuable, and can help in cases such as babies and young children with congenital heart conditions or for people with severe burns.
“I know some people feel like, you know, some people might not deserve it because they’ve been drinking or they’re a drug addict ... but people really are so grateful and it’s a second chance,” Ritchie says.
Carruthers says the transplant team from Greenlane Hospital and Auckland Hospital were “absolutely incredible”, and so too was meeting and recovering alongside other people going through transplant journeys.
In February, Carruthers said her dream was to be able to go for a long walk. She has since made it up One Tree Hill twice.
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