We all have them. Moments when we hear something so significant, so stirring, that we remember it for years. And repeat it to ourselves, like a mantra, so we never forget.
For me, one of those moments came about ten years ago, listening to a Swedish doctor speak about cystic fibrosis care. I was very interested in the differences in care between countries, her aggressive approach and her passion. But it was her answer to a simple question which set my hair on fire.
“We should never accept a decline in the health of any patient if the only reason for it is because they have CF. That’s just not a good enough reason.”
Hang on a minute. I thought CF was a disease of decline. How many times have we heard the figure of an average 3 per cent decline in lung function per year? What does it mean to not accept a decline? The Swedish doctor was talking about vigilance in the face of small changes, not allowing slight deteriorations to accumulate over time.
That’s easier said than done. Our lives are often ridiculously busy; we have plenty of other priorities to manage. And we may not always notice subtle changes. Have I always felt this tired on the stairs? Isn’t that the same cough she has always had…or is it a little worse? When did he start wheezing at night?
Thankfully, it’s not our responsibility alone to notice these changes. Hopefully if we have a true partnership with our clinician, they’ll be working side-by-side with us to detect—and halt—any decline. Yet there can be a lot of ground to cover in a two-monthly appointment and it’s hard for them to spot a problem in a 15 minute snapshot. And while we may not try to mask negative developments in our health (or our child’s) a slight change in wheeze is possibly not the most pressing issue at home right now.
Therein lies the challenge and it’s the nub of what the Swedish doctor is saying. We—adults and teens with CF, parents, healthcare professionals—need to somehow remain militant about even slight changes. CF generally wins the battle not by storming the ramparts in some great dramatic moment of illness. It wins by the daily insidious decline, creeping up on us; lulling us into thinking that a few percentage points in lung function isn’t so much or that it doesn’t really matter if I drop a few kilos. They do matter, because once we lose them we might struggle to ever get them back.
Cystic fibrosis is particularly challenging because it requires both a long-term commitment and a daily vigilance—every single day. That’s difficult. And, unfortunately, sometimes even when we do everything right, things go wrong. But every day that we fight and win a little battle (eradicating a bug, putting on a kilo), we stay one step ahead in The War and hopefully remind ourselves that just having CF is not a good enough reason to admit defeat.