When NZME visited Carruthers at her home in Halcombe, Manawat\u016b, in February, her rare lung condition had deteriorated to the point at which she was permanently on oxygen to survive.<\/p>\n
Carruthers\u2019 disease \u2013 alpha-1 antitrypsin deficiency \u2013 is a genetic condition that causes a heightened susceptibility to inhaling noxious substances, dust and pollens.<\/p>\n
As a young person, she smoked for about 12 years, but was not aware of her heightened risk of developing the rare condition.<\/p>\n
\u201cYou never think about breathing until it\u2019s all you can think about,\u201d she says.<\/p>\n
In order to live, she was moving around her two-storey home with a long cord that connected to an oxygen machine.<\/p>\n
Trips outside the home required a heavy, portable oxygen tank.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Last year, organ donation could be considered after only 1.6% of deaths in New Zealand.<\/p>\n
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.<\/p>\n
\u201cIt\u2019s often really sudden and really hard for them [the family],\u201d Ritchie says.<\/p>\n
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.<\/p>\n
This amount was significantly lower than countries with comparable health systems, such as the United Kingdom at 20.37, and Australia at 19.74.<\/p>\n
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.<\/p>\n
\u201cThey [organ donors] are not a dime a dozen,\u201d Ritchie says.<\/p>\n
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.<\/p>\n
Ritchie says there needs to be better resourcing for organ donation experts \u2013 who are typically nurses \u2013 to be present in hospitals to speak with families in situations after a sudden death when organ donation is possible.<\/p>\n
The UK and Australia undertook large reforms in organ donation in the past two decades and invested heavily in transplantation services.<\/p>\n
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.<\/p>\n
Life with a stranger\u2019s lungs<\/p>\n
There remains an aching pain in Carruthers\u2019 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.<\/p>\n
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.<\/p>\n
Aimee Carruthers’ condition required her to carry an oxygen tank before her lung transplant. Photo \/ Eva de Jong<\/p>\n
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\u2019s family to thank them.<\/p>\n
\u201cThey are somebody else\u2019s lungs, but now they\u2019re my lungs,\u201d Carruthers says. \u201cI know some people really grapple with that and struggle. I don\u2019t think I have, but I do get really emotional when I think about the donor.<\/p>\n
\u201cThat\u2019s tough, because somebody lost their life so I could live mine, but I try to remind myself that it was their wish.<\/p>\n
\u201cI can never explain how grateful I am … I truly believe it\u2019s a gift.\u201d<\/p>\n
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. <\/p>\n
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.<\/p>\n
\u201cI knew if I stopped, it was going to go downhill quickly.\u201d <\/p>\n
What if I have donor on my driver\u2019s licence?<\/p>\n
Having \u201cdonor\u201d written on your driver\u2019s licence is an \u201cindication of intent\u201d, but is not a legal requirement, Ritchie says.<\/p>\n
Families typically respect the wishes of the deceased, but sometimes they are unsure what the person would have wanted.<\/p>\n
\u201cPeople need to have that conversation with their family. It\u2019s much more powerful than just having it on your licence.\u201d<\/p>\n
A request written in a will is futile, because this will not be read until long after the person has died.<\/p>\n
\u201cWills don\u2019t work in a timeframe that\u2019s conducive to tissue or organ donation,\u201d Ritchie says.<\/p>\n
There is no age limit to organ donation, and it doesn\u2019t matter if the person has been a drinker, smoker or had other diseases. Each situation can be assessed on its own merits.<\/p>\n
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.<\/p>\n
\u201cI know some people feel like, you know, some people might not deserve it because they\u2019ve been drinking or they\u2019re a drug addict … but people really are so grateful and it\u2019s a second chance,\u201d Ritchie says.<\/p>\n
Carruthers says the transplant team from Greenlane Hospital and Auckland Hospital were \u201cabsolutely incredible\u201d, and so too was meeting and recovering alongside other people going through transplant journeys.<\/p>\n
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.<\/p>\n