“We’ve had another clear swab” “Oh, well, we are super careful” “Arlo seems to have so many infections….”
I am paraphrasing slightly and none of these comments were meant with any malice but I think we can reframe the narrative around cough swabs for CF parents.
I received these comments since I shared the news that Arlo is on oral antibiotics again.
I used to be embarrassed/ashamed to say that bacteria had come up on Arlo’s swab - would people think we’re not careful, do they think I’ve done something bad that has put him at risk, I must have let him down… and so on! I expect I am not alone.
But here’s why we mustn’t beat ourselves up.
Let me start with the technicalities. A lot of people with CF are walking around with what we could refer to as a chest infection - because bacteria sticks to the mucus in the lungs. Most of the time, someone with CF probably has some form of bacteria in their lungs but in the world of CF we would not deem this as a chest infection because the bacteria might not be “active”. It might not come up on a cough swab (those swabs are around 30% accurate!) and there might be no symptoms at all. When it does get caught by the swabs, symptoms or not, we still treat the bacteria that is present to try and eradicate it so it doesn’t turn into what we call an exacerbation. The phrase “exacerbation” is what your CF team would use to describe when the bacteria is active and causing trouble - a fever, difficulty breathing, persistent cough, possibly needing more serious treatment options.
So when your child’s swab result comes back with bacteria on it - yes, it’s not ideal, we’d love for them all to be clear and no coughs to even darken our door. But it’s also not something to be ashamed of. Get those oral antibiotics in your little warrior - at least you know what you’re dealing with and you can treat it before it turns into something nasty - like an exacerbation.
And guess what else? It’s not because you weren’t careful!
Can we not treat it as if a cough swab result is a direct reflection on anything other than luck of the draw in a world full of all different types of bacteria and where there is only so much we can control (or clean) without taking all enjoyment out of life!
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