I wrote a long post, and then lost it! DRRRRR. So here is a shorter and much less eloquent update;
Isaac is coughing.
A lot.
Like, people stare at you in Tesco, coughing over the veggie aisle, and sleeping is miserable type coughing.
But when we took him in last week for an emergency review, he blew his best lung function in a year!
This, after it being at ‘stable-but-quite-shitty’ level for some months, even when he appeared well.
CF continues to surprise us.
Occasionally, how symptomatic he appears has no rhyme or reason with his lung function, supposedly the measure of wellness in CF.
Treatment is Azithro and brufen for inflammation, as the doctors feel after a year of intensive treatment of his infections, the coughing now may be due to an overly excited inflammatory response (calm lungs, calm!).
In CF, infection and inflammation form a vicious circle in the lungs, and if this treatment doesn’t work, he may need steroids (always the last option with him, due to the side effects).
As is his norm, Isaac is taking it on the chin, smiling on, and not letting anything hold him back.
…. Not many people get to live with their hero, but I do. He never ceases to amaze me with his courage, humour and tolerance.
Some pictures from my travels to Toulouse (holiday) and Madrid (work) recently….
More soon x
