A few bits of news and other thoughts after a couple of weeks of silence:
For those of you interested in the latest in CF care, I have started a new (and extra) treatment. It's a nebulised saline solution, but not 'normal' saline, which is 0.9%, but 'hypertonic' saline at 7%. Nebulising means that the liquid is turned into a mist which I then inhale. To get through 4ml of the saline takes about 10 mins. Imagine swimming in the sea (you can pick your favourite sea - mine would be at Loutro in Crete, see below) and getting a mouthful. Then swallow, and do it again and again for 10 mins. Ok, it's not that bad, but it is pretty darned salty! The main effect of doing this is that it makes you cough - it catches the back of the throat and in the lungs and a few fits of coughing later and the gunge starts to flow - and that's the point. It seems to have an amazing ability to move even the most stuck sputum (to use the official term for the gunk that lives in my lungs).
The docs don't actually know how it works. There are various theories - at the simplest end, the fact that it makes you cough is enough to move the gunge, at the other end it might be to do with the saltiness drawing water into the sputum in some osmotic way (I guess...) and so helping thin and rehydrate it, making it easier to move. Of course, if you've done your research, you'll know that the base cause of CF is a blockage in the chloride/water channel in the cell meaning the sputum doesn't get enough water and so becomes thick and sticky. Sticky sputum makes a great breeding ground for bacteria and, hey presto, before you know it you have a resident biofilm infection that is impossible to remove entirely.
Anyway, the hypertonic saline is helping. But it adds to my already cumbersome morning routine which now goes something like this:
1) Nebulise DNase (to help thin sputum by breaking down long strands of DNA in it)
2) Wait a bit for DNase to work (should be an hour, but not enough time for that...)
3) Nebulise hypertonic saline
4) Cough like hell. Use oxygen to stop fainting during coughing fits... Once reasonably clear (i.e. hard to force up any more sputum)...
5) Nebulise antibotic
6) Wash mouth out several times as antibiotic tastes absolutely foul and coats mouth with white yuk
7) Take Vitamins (2 types), antacid pill, antibiotic pill (Azithromycin - commonly used to treat Chlamidiya (sp?)), mucodyne (to help thin sputum...again - yep they really are throwing everything they've got at me...)
8) Take 3 types of inhalers to try and relieve chest tightness (a total of 7 puffs, each to be held for 10 secs)
and in short that is why it takes me an hour and a half to leave the house in the morning, which is frankly pretty good going.
On another note, I was meant to be in Papworth on Monday night for a follow-up Sleep Study after the marginal result 6 weeks ago. When it came to it I was feeling really grim and decided was too ill to be in hospital (ah, the irony..), so rang them to cancel. I spent Monday afternoon in bed after an abortive attempt at work on Monday morning, worried I had a rapidly developing chest infection. But then felt better Tues and instead Vicky was the one laid low and in bed all day yesterday. So it must have been some kind of short virus, meaning I can escape the prospect of IV antibiotics for a little longer.
Finally, if you are bored with your current remote control why don't you buy a magic wand from a company that a friend from University has set up with a colleague. See http://thewandcompany.com/
8 months ago