Post IV clinic today and his lung function had increased..... not at all.
Why is this equation not working for us? The infection we know (his unwelcome guest of 12 or more years now, PseudomonasA). The drugs that these bacteria are sensitive to, we also know. He’s had a two week starter of Cipro, followed by a two+ week main course of IV Tobramycin and Ceftaz - he is treatment fatigued. Infection + treatment = improved lung function, right? But it isn’t, it hasn’t, it sucks, and therefore he started today a hefty dose of Prednisone for dessert.
Long time readers of this blog may remember that Pred (steroids) are our least favourite treatment option due to the side effects which are plentiful on as high a dose as he needs to take - we have been here many times before so know how it affects Isaac (reading the pamphlet; moon face, aggression and suicidal thoughts anyone? Super!), but the thinking is that the cycle of infection and subsequent inflammation means his inflammatory response has gone into overdrive (the blood in his sputum is indicative of this). So Pred it is. Hoping a short sharp course is all he will need (any longer and he will have been on a high dose long enough that he would then need to taper down the dose over many weeks, which is where the side effects really kick in).
We arrived at clinic today en masse (minus Dan who was working) as it’s school holidays. After lung function tests he was coughing up a whole lot more, but despite this we had a yummy lunch out and then went to a climbing wall. Making the most of it.
To sponsor us for our latest fundraiser, in which I will be walking 67km in a single day (by current training standard, will likely take me 14ish hours) alongside some amazing friends (shout out to my team Holywalkamolies!) raising funds for the CF Trust who fund groundbreaking research into CF treatments, please follow this link. Thank you so much for everyone’s support so far, donations large or small, every penny counts and means so much to us all. Have a great day x
A very rare picture of the lesser spotted teen.
And with the gappy toothed Rosa Banosa.
Large, small and medium today:
