Wednesday, 30 September 2009

Odds and sods

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

Thursday, 17 September 2009

Chris is running to see off CF

My very longstanding friend, virtually honorary cousin, Chris Sturdy, is running a half marathon in a few weeks and is aiming to raise £75 for each mile he runs. The money will be split between CF and two other charities. You can sponsor him here. He has already shelled out for a second pair of trainers having worn through the soles on the first ones so I'm sure he would appreciate your support!

Tuesday, 15 September 2009

Devon and a certain piano

Leaving Minehead we took a fabulously picturesque road over Exmoor and after 40 mins or so arrived at the beautiful house of some family friends of Vicky, where we were to stay the night. These friends happen to run a music festival (The Two Moors Festival) which became famous a couple of years ago when the piano, a Bosendorfer grand, which they'd just bought at auction fell off the back of the delivery lorry onto some granite steps at their house. The Mail still have the story online here.
Anyway, the story was resolved wonderfully when Bosendorfer offered to donate a piano to the festival (partly we guess because of the huge amount of publicity the story had generated). Of course, the most expensive piano was requested, which in Bosendorfer's case is the quite extraordinary model 290 Imperial at a cool £85,000.

So to cut a long story short, I asked if I could have a tinkle on the ivories and they said 'of needs playing'. So I had the rare opportunity to play what many consider to be the Rolls Royce of pianos. And it was amazing.

The 290 Imperial. All 9'6" of her...

...and me playing

The unique thing about this piano is the extra 9 keys at the bottom of the bass, coloured black rather than white so as not to put the player off. Very few pieces have been written to use these keys. When you play these notes it is almost difficult to hear the real pitch of the note, they just grumble. They are supposed to add colour to the piano's sound as they sympathetically resonate with the notes being played. One of the pieces written specifically for the piano is Debussy's La Cathedrale Engloutie - I only found that out once I'd got home and was reading up on the piano, but happened to play it when I was having a go - mainly because it is nice and loud!

Extra black keys.

Monday, 14 September 2009

The Skoda of Adventure: Four Go To Foxes Earth

A happy weekend this one. Maddy started at Foxes Academy on Saturday and Will and I went down to Minehead in Somerset with her and my mum. After tearful goodbyes to the house, the dogs, sister Chloe, the cat etc etc, we headed off in mum's shiny new car, bound for the seaside. When we saw Butlins we knew we were almost there. Maddy's new accommodation is at Foxes Earth, along with eight other female 'learners'. It was fantastic to see where she'll be living, to help her settle into her new room, and to feel what a relaxed and positive place Foxes is. As soon as we got there Maddy was super-cool, and there were no tears at all when we left her to it. (Well, I nearly cried, but managed to get a grip so as not to embarrass her.) It was a completely beautiful day and we managed a potter on the beach in the sun before reboarding the Skoda, just three of us this time, for the next part of the Adventure...

Recording the moment
Maddy's new home

Friday, 4 September 2009

35 eh?

Thank you for all your birthday wishes via email, snailmail and text. I've had a lovely day off work doing nice things involving Michelin starred restaurants and relaxation.

In a small note to bring the blog back onto its original footing, the current life expectancy for CF-ers is 31, so I am now officially 4 years ahead of the curve and aint slowing down in the near future! Hurrah!

Increasing fame...

ok...and the Independent, Mail, Mirror and Express!

Vicky is famous!

Vicky hit the mainstream media yesterday when the Cambridge Evening News ran a story about the population explosion in Cambourne near Cambridge. Then it got into the Telegraph and this morning we discover it ran in the Sun!

Vicky is quoted and is obviously annoyed that a) she sounds quite boring and b) that they took various numbers out of context, but I think that having your name and quote in the Sun is something to be proud of!