Tuesday, February 23, 2010

Washed out at the car wash

I haven't blogged much about Abby and Oscar recently so here goes. Abby is now halfway through her first year at infants school and is doing really well. She is going for swimming lessons on Wednesdays (doing great) and ballet on Saturdays and she's turning into a very confident young lady (chatterbox!) of 4. Last week she won a spelling competition at school and won a prize so we were well chuffed.

Oscar we've been a bit worried about. Ever since he started nursery he seemed to catch every bug and cold that was going, in particular one weekend when he seemed to come down with Croup (barking cough sound, and seemed to have difficulty breathing) but in the end it wasn't too bad. I've mentioned in the past that it did cross my mind that he might have CF; when we did IVF we discovered my wife is a DF508 carrier and this led us to suspect the worst, however we contacted Leeds LGI and they said all donors are checked for CF so that would seem to make it highly unlikely. He also came back negative with the heel prick test. In any case in the last few weeks he does seem to have had a run of good health and this seems to have helped him gain some weight and he seems loads better in himself. His talking is coming on leaps and bounds as well, he is getting very good at mimiking and picking up some of the things we are saying to him. He can still destroy a room in 45 seconds as well!

I recently started a training blog It's completely no frills, it's just for me to provide a record of the exercise I've done and hopefully when I step it up and do more, I might see some improvement in my lung function. My misses bought me a mountain bike for my birthday, and I've recently been joining my mates on off-road courses. They all started early last year so their fitness level is a lot better than mine, then again I do wonder if my fitness level is where it is because of my CF related lung function (78%) . Uphill biking is very hard work. On my first ride my heart was beating so fast I thought I would collapse and I could see spots in front of my eyes. I was sweating like a stuffed pig as well (attractive ;-)) But I am starting to feel a tiny little bit fitter now (on my fourth ride) so hopefully there will be some long term fitness benefits. It's good fun going downhill as well ;-)

Some pics of me and the kids washing the car. Abby wanted to do most of the hosing but Oscar was interested too. When Abby wasn't looking he managed to grab the hosepipe and soak Abby from head to toe leading to a change of clothing halfway through the car wash. Very funny but it meant the car wash took ages as Abby insisted on eveything stopping until she got changed. A true diva in the making. :-)

Sunday, February 21, 2010


How fucking good is this? What a singer, sends shivers down my spine.

Friday, February 19, 2010

The real Lady G...

One of my favourite bands Goldfrapp is bringing out a new album very soon! I'm very excited! I want to post the video for the song "Rocket" (like everything at the moment it's a bit of an 80s pastiche, but a fanastic tune) but it's not on YouTube yet, so I'm going to have to paste this instead...

Monday, February 15, 2010

The Sundays

I had such a crush on the Sundays' singer when I was a student, I loved her voice. Further reading (and an excellent article) here. A very british band.

Tuesday, February 9, 2010

The New Outpatients

First visit to the all new outpatients yesterday. This was for a Tobi trial with the Ineb. They have put the outpatients in the old Pearce Ward, so the outpatient rooms are the old in patient rooms, which is a bit odd, kind of brings the memories flooding back. The last time I was in there there was a communal kitchen / social room where you could hang out, watch videos and fix yourself breakfast (this was about 10 years ago before the cross-infection rules kicked in for everybody, not just Cepecia patients)

The Tobi trial went OK, I got a new lilac coloured filter with a bigger container for doing the Tobi nebs. Nice. Unfortunately, the Tobi takes about 4 minutes to dispense, and you have to do 2 lots of it, which is a bit rubbish because I can neb Colymycin and Ventolin in 50 seconds flat. DNase takes about 2 minutes. Apparently it's because the Tobi is a lot thicker.

The blows before the Tobi test were a disappointing FEV1 2.7 FVC 3.6. The blows are in that area where they're not that bad but not that good; so it leaves me in a bit of a no man's land. If they were down a lot (say 2.3-2.4) I would go straight onto IVs, and if they were up high (3.0-3.1) then I would be happy as a butchers dog. Meh. When I do the spirometry test I get a high pitched wheeze so I think the 10% loss of FEV1 over the last few months may be down to that, because my sputum seems to be completely under control with nebbed Colymycin and now Tobi. In fact the last time I had IVs I didn't *really* need them I just had them to see if they would improve my FEV1, which they didn't have a massive effect on.

Anyway, I asked the physio about trialing Hypertonic Saline, as I want to see if this can reach the parts that other nebulised solutions can't ;-) Roll on next month...