My family was always a sitting duck when it came to head lice. We never had a chance. Our primary school would send home letters regularly. ‘Be vigilant about inspecting your child’s head.’ ‘Warning: There has been an outbreak of head lice in your child’s class!’ Unfortunately for our kids (and our school) vigilance doesn’t come naturally to me, especially not for something as unseen as head lice. I’m kind of a big picture person. Or at least that’s what I told myself as I slid the warning letters in the bin with just a cursory scan over the three little heads.
But living with CF has forced me to focus on some other microscopic critters. Yes, I have become a tyrant about bacteria. Because, as we all know, bacteria really matter in CF.
Bacteria are the starting line to the trouble that can cloud the future. Most of us quickly become familiar with the ‘gateway bacteria’ like haemophilus influenzae and staphylococcus aureus which often appear very early in the lungs. These, in turn, make way for potentially nastier bugs like pseudomonas aeruginosa. Names like burkholderia cepacia and the totally unspellable stenotrophomonas maltophilia worm their way into our vocabulary and, often, our nightmares. I recall being plagued by paranoia after my eldest son’s CF diagnosis, fearing bacteria in each splash of water, speck of dirt or doctor’s office toy.
Data in Australia (from 2012) show that pseudomonas is still the most commonly identified bacteria in the lungs of people with CF. Its prevalence grows with age: in 2012 it was found in 8% of those 0-12 months, but was present in nearly 90% of those aged 30+. Depressing? Maybe. But only about one-third of those people were growing a clearly smart (mucoid) version, the kind that generally won’t ever vacate the premises. Importantly, there is good evidence now to show that the majority of pseudomonas infections can be eradicated if caught early and hit hard.
Personally, I decided years ago that in order to sleep at night while fighting the battle of the bacteria meant developing a vigilant surveillance regime. I adopted a routine of snatching sputums regularly‘ – and definitely when a cough appeared unexpectedly. We have stumbled on cepacia and pseudomonas from routine home sputums when there were no symptoms. Initially I stressed about the cost to the health system of testing negative samples, but I now know one saved admission is worth the minor lab costs. We routinely request a supply of pathology slips so there’s no need to bother staff when we drop them in. But it’s always (ALWAYS) worth following up on results that often slip through the cracks.
For some, pseudomonas is now a permanent resident. But a quick glance through the lengthy list of other potential CF bacteria may send even those people off to the lab, pathology slip in hand, to nip things in the bud before trouble starts with another pathogen.
Maybe this is the positive slant we can take on this barrage of bugs – the one I never took with head lice. If CF gives us a window of opportunity to keep them at bay, to eradicate bacteria while there’s a chance, then that’s worth doing. Because, as Benjamin Franklin once famously said, ‘An ounce of prevention is better than a pound of cure.’