These last weeks have been confusing, to say the least. We are grappling with new diagnoses’, confusing and overlapping symptoms, additional meds, and multiple clinical teams (between which communication is not always the best). Today I offloaded a whole bunch of worries on a CF friend. Just talking it through helped clear my muddled, cloudy thoughts. Having friends in the CF community to talk has proved vital to my balancing of emotions, thoughts and learning. It’s not all clinical, the lived story is complex, meandering and never black and white.
Thankfully Isaac’s lungs are stable right now, following recent IVs, and he’s currently away visiting his girlfriend. Getting him well enough to live life to the fullest of full is always our top priority. Travel with chronic illness takes forward planning and preparation, but when you win, it tastes all the sweeter.
Due to these new complications he cannot, for now, take part in the gene therapy trials we had been on track to join and had pinned our hopes on. While we wait (somewhat impatiently) I’ll continue to shout about the needs of the 10% of CF sufferers for whom the new modulator treatments will not work, who cannot be left behind. This clip sums it up pretty well. Love love love x
