WTF? By which I mean, what the fungus has been going on with Dave’s lungs?
A fungus has been having about as much fun in Dave’s lungs as a freshly arrived Schoolie on the Gold Coast and his lungs have been reeling from the sudden onslaught.
This fungus is Aspergillus fumigatus. A lot of people with CF cultivate a colony of A. fumigatus and most of the time it doesn’t cause any problems. A subset of people with CF develop an allergic reaction to the fungus. The allergic reaction, rather than the fungus itself, causes issues. Namely – falling lung function, shortness of breath, chest tightness, chest congestion, reduced exercise/life tolerance, cough and fatigue – that all of our tried and tested tricks of the trade frustratingly fail to improve.
Our theory is that Dave is one of these people and that his lungs freak the hell out at the first sign of A. fumigatus.
At the end of a long winter of ill health, when his stats were the worst they have ever been, we decided that we had to pursue every treatment approach available to at least try to stabilise this quickly escalating situation. We scrabbled about in our bag of tricks and the only thing he could try was this: pause the Orkambi trial, begin taking an anti-fungal medication to reduce the fungal load and steroids to treat his allergic reaction.
It. Has. Helped. For the first time since Easter he is feeling and acting bett-er. Happy dance! We then ummed and aahed about whether he still needed an admission to address his bacterial load and decided that he would indeed benefit. He waited five days for a bed and is now installed in the penthouse suite of the Hilton with three aged ex-smokers who, incidentally, can’t speak any English, and in addition, have a touch of dementia thrown into the mix to hamper communication even further.
On his arrival we noted that the excessively dripping tap from his last admission is still dripping. Conversely we were astonished to find a new toaster, microwave and sandwich toaster machine in the communal kitchen. The marmalade now comes in a tube that is almost entirely impenetrable, and once the substance is finally liberated, to the consternation of Dave and the surgical team that was paged to slice open the darn thing, tastes nothing remotely like marmalade. Dave has reported that the omelette is still not edible but the steak with mushroom sauce is really rather good. His specialist has an exceptionally good-looking registrar in tow which has buoyed Dave’s spirits and he has somehow found it within his heart to forgive her for ordering an excessive number of blood cultures and denying him ibuprofen during his last admission whilst he was in the throes of fever. Dave has dusted off his honorary medical degree and started giving me updates about his roomies: “The man opposite is saturating quite well on 1.5L but he is a CO2 retainer so they are having to titrate carefully and use NIV, of course”. Well, of course.
Onward he goes. And hopefully upward!