How did childhood bronchiectasis affect your family?
There were the numerous hospital admissions, often in the dark of night, and often involving hours of waiting in the emergency department with the long-awaited outcome of admission to Ward 26B, at Starship Hospital. This was pretty much our life for the 10-year period beginning in 1994. Hospital admissions were frequent; sometimes there was a cyclical component comprising of a six-week pattern where symptoms were exacerbated. I recall thinking there was never enough time for wellness in between the episodic flare-ups.
As a young mum with three children and my part-time job to contend with, accompanied by interrupted sleep patterns, I often found myself fraught with the challenges that I can only suppose any unwelcomed chronic illness brings into a family.
How did the condition affect Miranda living a ‘normal’ childhood?
Swimming was an absolute effort, as I am certain too was concentration in class. The school environment, along with all its bugs, became a necessary but challenging place to send a weakened child into. Restriction, placed on any child to alienate them from peers, brings its own challenges. The isolation that bronchiectasis places on both patient and families was sometimes unbearable.
What helped to improve Miranda’s wellbeing?
Miranda’s love of music became a huge inspiration for her, and the effort involved in playing wind instruments (a few years later) offered her a sense of real achievement. I am sure this provided her lungs with added stimulation that pleased both patient and physiotherapist!
What’s one of your most memorable moments?
I remember how I would rate my daughter’s wellbeing... if ill health took us to hospital in the middle of the night, we would usually slow down past the lighting shop. This was indicative as to the level of her unwellness. The lights would either bring joy to her little face, or we would be instructed to keep driving, and fast.
What medical advice did Miranda take on board?
While approaching puberty, doctors were quite clear in their comments: ‘Never smoke – one cigarette could kill you’. I am certain this command was adhered to as my daughter now leads a life where, as a young adult, she is in command of what she does and does not do to her own self.
What advice do you have for families living with chronic conditions?
Ask questions, and if you don’t understand the answer, ask again, or ask someone else. Do your research. Get on board with the entire process and form trust in your treating health professionals. They are there for you and yours.
Embrace hope – hope is what gets us through tough times. Never leave it behind, nor lose sight of it.
These days Miranda is pretty much symptom-free and lives a healthy and fulfilling life. She is a university graduate and is a lead vocalist in a band that she joined in 2016.
This year Bronchiectasis Day takes place on 7 April 2017 to raise awareness.
