This week Isaac wisely decided that he needed IV antibiotics. We had a call with his consultant, who praised his maturity of mind, agreed a treatment plan (Ceftaz and Meropenum with a side order of steroids). Yesterday, Dan and Isaac headed into clinic. Had his port accessed. Did the first dose while chatting to the team. Picked up the drugs, bins and the masses of required paraphernalia to complete the course at home and headed back.
It reminded me of a video I once watched where another CF patient was in a similar position; lungs protesting, extra physio and usual meds not nearly cutting the mustard, at some point you must concede bug defeat and just get on with the war on bugs. For many CF patients, IV antibiotics are inevitable when lungs scream. Certainly in Isaac’s case, putting them off never really works, so however much of a pain they can be, they are an accepted fact, and a tool we rely on. But after watching this video, I wondered into the darkest depths; the comments section (mistake, troll city) where the patient was criticised for her privileged conceit expecting her ‘doctors on speed dial’ and seemingly ‘choosing her own treatment plan’.
Whilst I rolled my eyes (as I often do at the fucking audacity of people who moan through the anonymity of their keyboards) and took breath, it reminded me of why CF awareness is so important. Because, as absurd as this obviously sounds to some people; this is our reality.
People with CF know their bodies better than anyone. They know when their lungs will respond to nothing less than the big guns (IVs). There is no way, on any planet, that anyone with CF would ever, ever, ever, choose to do more treatment than what was absolutely needed - no one thinks, ohh, what a great idea, let me pop a needle in my chest and inject toxic shit that makes me feel crap into my blood stream multiple times a day!
Moreover, CF teams know their patients. They know the bugs that are growing in their lungs. They know what drugs those bugs are sensitive to, or not. They know their patients medical history. Critically, they know that CF lung exacerbations escalate. Bugs don’t just give up, so nor can we. Proactive is the name of the game we must play. A game we never chose.
The relationship between CF patient and clinical team is probably a fairly unique one. CF is a chronic, lifelong condition. In paediatrics we had the same two consultants for the whole 16 years we were there. Now, we are building new relationships in adult care, and I can confidently say that we spend way more time with our CF team than we do most of our even closest family.
So yes, as crazy as it sounds, we can make a call, and make plans quickly. This might sound like a privilege, but that is because this is needed. We don’t have the same for other co-conditions (we wait for many months for much needed sinus surgery, on an almost annual basis), but lung infections? This is like our BAU, our bread and butter, we know this, we get it, we arm ourselves quickly and appropriately before the little feckers cause any more long term damage - and ultimately, this keeps us out of hospital as much as we can, saving essential NHS resources by caring at home as much as we can.
The relationship that we have with our CF team is one that we are so, so grateful for x
