IV antibiotics for two to three weeks at a time, at home if we’re lucky, on the ward if we’re not. Or a mix of the two....On IVs he feels worse to begin with, but his lung function steadily increases (massive relief)....Following IV’s he enjoys a few weeks of good health. Maybe six weeks if we’re lucky? Just two or three if we’re not...But sooner or later the symptoms increase and his lung function falls (massive disappointment)...We might try oral antibiotics (these used to work more often, why not now?) but more often than not, we’re back on IVs and the ride continues.....
During an exacerbation (CF talk for when his live-in bug, Pseudomonas, has a little flare up and makes him much more symptomatic than he usually is) of course he coughs alot, but how he feels can vary from being able to go to school, CrossFit, football.... to lying on the sofa all day, pale and exhausted, or in hospital, needing supplemental oxygen.
Right now, he is exacerbating. He missed football today, but he is well enough to stay home, try two lots of extra antibiotics and wait and see where this one takes us. Yesterday his doctor was saying that even the density of bacteria growth that the lab find in his sputum is not indicative of how poorly an exacerbation might make him - people with CF can have a light growth and be very poorly one week, or a heavy growth the next, but be able to stay home and cling on to a normalish life. I’m endlessly looking for rhyme and reason where there might not be any.
In the meantime, increased physio, and they are looking at his bloods for aspergillosis levels (a fungus that he has previously grown in his lungs too) and to see how well his kidneys and liver are coping with not only all this treatment, but the amount of painkillers he also takes (he takes some sort of pain relief most days, mainly due to his GI problems). He was given a small lecture about adherence to his Creon (the pancreatic enzymes he needs to take with food, which we think he ‘accidentally’ forgets at school), but he took it well. It’s not awful to miss it, the main consequence being pain and malabsorption, but it doesn’t help his overall well-being.
For a number of reasons (other family stuff included) this week has been a very hard one. But I have also been reminded of all the support we have around us, and we’re so thankful for our family and friends that wrap us up with love. Thank you x
Lucio Fontana - Concetto spaziale, attese 1967.
