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My story of 69 years with severe asthma – aren’t I fortunate to be here to tell of my lived experience. A life primarily lived farming in rural NSW with my family. I was a classic ‘atopic’ person – the trifecta:–asthma, eczema and hayfever.
As an infant, living 48 kms from the nearest hospital, on a dirt road, there were numerous emergency trips to hospital-adrenaline injections, oxygen, antibiotics and oral steroids. Naturally there were very anxious moments for my parents. I recall the kettle near my cot, emitting steam to relieve my incessant coughing. And bandages on legs and arms to stop me scratching my eczema. As I grew up, participation in sport and socialising were limited. For two years I was home schooled in an attempt to stabilise my asthma.
Coinciding with reaching the age where my health care was my responsibility, the quite rapid emergence of improved medications and management plans, hospitalisations became less frequent and participating in University life was ‘nearly normal.’ I was very fortunate to have an excellent family GP.
The 1970s saw the appearance of several inhaler devices-reliever Ventolin in an inhaler, inhaled corticosteroids, Intal (an non-steroidal anti-inflammatory) and many more.
Throughout my married life, running a farm and raising 4 children with my husband, I luckily managed my asthma well enough to keep very busy. This said, I would have multiple stints on oral corticosteroids, antibiotics and a blue puffer placed in all farm vehicles and around a large garden and home. My last ambulance ride with blue lights flashing was in 1980.
My interest and experience with Asthma encouraged me to obtain a Graduate Certificate in Asthma Education. This led to NSW Asthma Foundation contracting me to deliver their Asthma education program to staff in local schools. I felt confident I knew about not being able to breathe.
In 2018 I noticed Asthma Australia calling for Expressions of Interest to join their inaugural Consumer Advisory Council. My role as Chair of this Council has been so fulfilling. It has been my turn to give back to those involved in Asthma Australia and research-those who over the years have been responsible for me feeling so well now.
Another game changer for me was in 2019. Multiple shadows in my lungs fortunately turned out to be scarring from multiple infections but fast tracked me to our local and wonderful Respiratory specialist. I thought my breathing was good-he said the rattle was like a musical band out of tune. As a result, I am now on a biologic which I administer myself bimonthly-and my Ventolin puffers are mostly out of date. My asthma is well controlled now-but at the expense of several comorbidities-osteoporosis, thin skin, some arthritis and women’s health issues. Reduced reliance on oral cortisone is so important. Lots of dollars have been spent on treatment.
I’d like to extend a very strong message from my lived experience with severe asthma. Ensure you have a current Asthma Action Plan. Only about 35% of asthmatics have one at all. Be extremely vigilant in following the plan-with correct inhaler techniques and never be afraid to your healthcare professional if you feel your asthma is not controlled as can reasonably be expected. Remember, 90% of asthma hospitalisations are potentially avoidable, and around 60-70% of deaths may be avoidable. I personally know of four people close to me who have lost their lives to asthma-and shouldn’t have.
BREATHE better so you can live freely
