Bronchiectasis (pūkahukahu haua) is a lung condition where the airways within the lungs (bronchi) become permanently damaged and enlarged, usually as a result of an infection. Mucus can build up in the damaged airways leading to frequent chest infections.
It’s estimated that over 8,000 New Zealanders live with severe bronchiectasis, and approximately 132 people die from this condition annually. To mark World Bronchiectasis Day on Tuesday 1 July, the Foundation talked to 27-year old Lara Mead about her experiences living with bronchiectasis.
When were you diagnosed with bronchiectasis?
I was first diagnosed when I was six years old after becoming really ill one winter. The doctor misdiagnosed me with croup and sent me home. It was actually pneumonia, and I shouldn’t have been sent home. My mum rushed me back to hospital as I started turning blue. My family was in Hawera at the time and I was sent to Starship Children’s Hospital in Auckland and my mum was told that it was unlikely I would make it. I was pretty much on my death bed; I spent six weeks in Starship, five of those weeks on life-support. I needed dialysis, I had viral pneumonia, septicaemia and I had a superbug. When I recovered, they told me I had bronchiectasis, as a result of the damage to my lungs caused by pneumonia.
Do you remember much about that time?
I had a year off school recovering from what happened. I had to learn to walk again due to being bedridden for so long, but I don’t remember too much more. I do recall having to wear a blue mask every night when I was in hospital, which I think now was a bi-pap mask. I really hated that which is probably why I remember it so many years later.
How has having bronchiectasis impacted your life?
Growing up I did miss out on school and sports sometimes. I got used to having to take antibiotics all through winter and coughing up green phlegm. I feel having bronchiectasis has impacts on my life, however having support from my partner, family and friends makes it easier.
How did you learn to manage bronchiectasis?
I had a wake-up call when I got pneumonia as a young adult. That was the first time I had been back to hospital since my experience when I was six. I realised that I wasn’t looking after my lungs as best as I could be. After that, I got into the routine of using a saline nebuliser religiously twice a day, followed by airway clearance to cough out any phlegm.
Another important part of management is keeping up my fitness. I go to the gym most mornings. Keeping up these routines means that I don’t need to be on antibiotics permanently, only if I get a chest infection.
What does having bronchiectasis mean for your day to day life?
I don’t really cough throughout the day or when I exercise so many people probably don’t even realise I have a lung condition. I nebulise with saline and do airway clearance in the morning before work and when I get home from work and that routine is really important to me. I don’t really like getting out of that routine so I do say no to some social invitations. It is hard for me going away because I don’t want people to hear me coughing. Fortunately, I have a really supportive partner, who understands and my work is also very understanding.
What would be your top tips for someone learning to live with bronchiectasis?
I think that airway clearance is really under-rated. It’s so important to clear your lungs regularly, because with this condition they can’t clear themselves. I would far rather do regular airway clearance than be sick in bed. I would also say getting sputum cultures (tests on mucus to identify bacteria) is really important to make sure you get the correct antibiotic to treat your chest infection.
I also would say exercise. Looking back now, I was involved in a lot of sport throughout my schooling life which was very important for my lungs and being able to keep fit and healthy.
How do you deal with the mental side of having a chronic condition?
It can get really hard especially when you lose a few weeks of your life to a chest infection. At those low moments, I wish that I had healthy lungs and I get frustrated when I see other people deliberately harming their lungs through things like vaping. What helps is having supportive people around and talking to them about how I’m feeling.
Learn more about bronchiectasis here.