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Struggling to draw in each breath is the reality of daily life for Aimee Carruthers.
A rare lung condition has left the 41-year-old, who lives in Halcombe in the Manawatū district, relying on an oxygen tank to survive.
Ten years ago, Carruthers’ life changed when the constant breathlessness sheassumed was a result of her asthma turned out to be a rare genetic lung condition.
She was diagnosed with stage-four chronic obstructive pulmonary disease (COPD) and early-onset emphysema caused by a rare genetic condition: alpha-1-antitrypsin deficiency.
Halcombe woman Aimee Carruthers, 41, is living with a rare lung condition that requires her to carry a oxygen tank. Photo / Eva de Jong
Despite her condition, Carruthers is relaxed and remarkably upbeat as she sits cross-legged on the couch in her barn-style home.
At her feet rests a bulky oxygen tank weighing about 7kg which she must carry with her when she wants to leave the house.
With three children aged between 17 and 22, Carruthers wants to continue to be a mum, work in her beloved garden and finish renovating the family home on a section of farmland.
But each day gets harder as she is struck by sudden bouts of breathlessness that feel like she has “just run a marathon”, leaving her gasping rapidly, with her chest squeezing in on itself.
“The worst thing you can do is panic, but obviously that’s hard not to do,” Carruthers said.
Aimee Carruthers and husband Darryn Carruthers outside the barn-style home they are renovating while Aimee battles a rare lung condition. Photo / Eva de Jong
Even simple activities, such as having a shower, brushing her teeth or cooking dinner, are exhausting with her hyperinflated lungs struggling to take in air.
But Carruthers remains positive and refuses to let the difficulties of her illness stop her from continuing to live a normal life.
“I try to push through it,” she said.
“When I painted the laundry, I would roll probably two streaks at a time and then have to sit down and get my breath. It took me a long time but I got it done.”
Each day, she pushes herself to walk as far as she can on a treadmill, usually for three to six minutes, and is working to remain strong enough for a future lung transplant.
It has been a long journey over the past 10 years, witnessing the slow deterioration of her lungs.
“Previously, I used to hide my illness,” she said.
“But now I’ve come out into the open with it, the words of support and the generosity we’ve received – I’ve just been floored by it.”
Without a lung transplant, her condition will continue to get worse and lead to complications such as heart problems and a weakened immunity against any small colds.
A lung transplant depends on the availability of a donor lung that is a good match. Even in those circumstances, the surgery comes with significant risks and has an 80% survival rate of one year. The five-year survival rate is 60%, according to Organ Donation NZ.
Families should get tested for lung condition
Following Carruthers' diagnosis, four of her family members were also found to have one of the genes associated with an alpha-1-antitrypsin deficiency.
Their conditions are far less severe (Carruthers has two problematic genes) and they can take precautions to ensure the continuing vitality of their lungs.
Asthma and Respiratory Foundation NZ medical director ProfessorBob Hancox said the deficiency was a genetic condition that meant a heightened susceptibility to smoking or inhaling noxious substances which damaged the lungs.
Hancox said options for treatment for alpha-1-antitrypsin deficiency, such as augmentation therapy, were available internationally but difficult to access in New Zealand.
“One reason is that New Zealand is a small country and therefore, for the manufacturers of these devices or medicines, there’s just not as big a market.
“Secondly, the funding system in New Zealand means that often when these medicines are here or approved, it takes a long time for them to get funded.”
Aimee Carruthers is fundraising for a lighter, more portable oxygen tank that will allow her to keep enjoying gardening and outdoor activities. Photo / Eva de Jong
Carruthers said she wished she had received an earlier diagnosis for her condition and there was more investment in treatment options in New Zealand.
“It’s such a simple blood test and, if I had known when I was younger, I would have lived my life differently – I used to smoke,” she said.
“Ten years ago when I was diagnosed, if that [augmentation therapy] had been an option, I potentially wouldn’t have been as bad as I am now.”
Hancox said the effect of an alpha-1-antitrypsin deficiency could also impact people who had never smoked.
“Probably because they are breathing in other substances that people around them smoke or are working with noxious substances that harm the lungs,” he said.
It was important for people with the condition to get their family tested.
New Zealand should participate in more international studies on lung diseases to increase the potential availability of treatment options, he said. Conducting research locally was difficult because of the low number of sufferers.
Surviving on oxygen
When Carruthers is at home, she has a long cord that hooks up to an at-home oxygen machine. To go outside, she now needs to carry a heavy, portable oxygen tank.
“You almost feel trapped,” she said.
“As soon as I walk, my oxygen levels will drop to below 80.”
Her husband, Darryn Carruthers, said maintaining a sense of normalcy through shared activities like fishing or going shopping in town was crucial.
“I think it’s important to find those times because, in those moments, all of a sudden the struggle just vanishes,” he said.
“She often feels like she burdens me, but I will find little things that I need her help to do and we’ll work together.”
The couple have been fundraising through a Givealittle page for a publicly unfunded oxygen machine that is much lighter and will make it easier for Carruthers to move around. Additional funds raised will go toward servicing and filters for the machine, and for Carruthers' trip to get a lung transplant assessment.
“It kind of feels like the health system isn’t geared up for people to be on oxygen, and to be out and about,” Carruthers said.
Hancox said most people who were being treated with oxygen did not need it to be portable, so portable machines were less available in New Zealand.
Carruthers is continuing to take each day as it comes.
