Friday Tune (Best of the last decade part 3)

Sod it, it's Friday, it's just a nice tune :-)



Well I'm into my second week of IVs, lungs seem **mostly** clear, so I decided to celebrate it with a half hour run. I felt good on the run and even had some energy left at the end to do a sprint finish, which is unusual for me.

But, (big but) about halfway through the run I developed a rattling wheeze. I sounded like Darth Vader. It was a wheeze that I could feel more on the inhale breath than the exhale. I've had it for the last few days more so in the afternoon / evening. And no amount of huffing/coughing would shift it. I''m wondering if this is asthma related, (possibly ABPA, I've had it in the past) does asthma effect you more on the inhale or the exhale? Anyway, I rang the hospital and they're gonna do an X-Ray next week when I go back and also do Aspegillus blood test so we'll see what happens...

Rantline

I haven't swore on this blog much, coz it's a limited form of communication, isn't it? Yesterday I felt like it but it would have just turned out like "the fucking fuckers fucked, it can get fucked for fucks sake" or something. And all I really have is questions with no answers. And I feel like I've been hit by a stealth CF infection with added wheeze factor. Last summer I was 10 stone 10, now I've dropped down to 9 stone 12 which has completely mystified me; I have no idea how this happened. Can a stealth pseudomonas infection really rob me of so many calories? The doctor reckons it could be but I remain baffled...On the plus side my stomach is really flat...;-)

The other day at hossy my blows were down (FEV1 2.4, FVC 3.8) my weight was down 9 Stone 12 and I was pissed off. Since the start of this year I've been doing everthing right, started Tobi nebs, done loads of exercise (3 hour bike rides through the hills, training for the Manchester 10K) and yet despite all these efforts the LF and Weight is at it's lowest since 2005. I wonder what the hell CF wants from me, I've played by the rules and I get my arse kicked ;-)

Anyway, I'm back on IVs (Cefttazadine and Tobramycin) and Scandishakes. The IVs give me the runs so I'm having Immodium to slow my guts down, which impacts on my appetite, combine this with 500 calorie scandishakes poured over my cereal and my guts are churning and gurgling like Johnny Vegas's private sess pit after he's had a night on the curry and beer. Meh!

Dorset Break in Pictures

Timecapsule - spot the PWCF ;-)

There is a person with CF on this picture. He/she is 9. It's 1981 or 1982. I think (memory isn't what it used to be). He/She has just learnt how to add fractions. There is no creon, only pancrex. No ciprofloxacin. No nebulised antibiotics. He/she has just been diagnosed, and is trying to get his/her head around the fact that he has to take enzymes with low fat food, skimmed milk(!), no chocolate(!), flucloxacillin and do physio with postural drainage....those were the days :-)

Fear, Loathing, and Physio Time (!)

Went to the all-new outpatients to do the hypertonic saline trial with Leslie (the physio) yesterday. I went in my lunch hour hoping it would only take an hour to complete; unfortunately it turned into a bit of an epic visit and I wasn't back in work till 4! Oops. Anyway, since the last trial of Tobi I've been having some problems with my chest; nothing I can put my finger on but I've been producing more mucus on a daily basis, and I've had a growing wheeze which (handily) means the mucus is harder to bring up. This all started at Christmas when I asked on the CF Forum about what was good for bringing up mucus plugs and the majority answer came back as hypertonic saline. Hypertonic saline is a high salt (7%) solution that works (in theory) by drawing more water into your lungs by osmosis, so if you have hard dry plugs or sputum that is in general hard to bring up then it should moisten these and make them easier to bring up.

We did the FEV1 blows before the Hypertonic trial (FEV1 2.75, FVC 3.75) which was down but not too bad, considering. We then nebbed some (preventative) ventolin followed by the hypertonic saline. We then did some physio to clear out whatever the hypertonic brought up. I've got to say, I found this a bit awkward as I actually hadn't done physio with anyone at Manchester since my last inpatients stay (10+ years ago). This meant I had to get over my reluctance of spitting in front of strangers, but the physio techniques she did -all variations on the active breathing cycle that Mary taught me ages ago- were very effective in getting mucus out of the small airways and into the large airways where they can be huffed up. It was a good refresher course in physio techniques; breathing shallow and deep but holding back a forceful huff or cough -which closes the airways- as long as possible. Over the years I'd simplified the technique in my head into slow deep tummy breaths followed by an almighty forceful huff. What she did was more subtle with breathe and hold followed by gentle and then faster exhalations with vibes to try and ease out the mucus. All good stuff, and (hopefully) it's improved my technique quite a lot. Over the past few years I've had very few problems (touch wood) so I'd gotten a bit slack on the physio front. Now I'm determined, for the sake of my long term health, to be more regular with my physio. We'll see how long it lasts ;-)

After the trial my FEV1 blows came back 2.45 which was down 10%, this is classed as a significant drop so Leslie referred it to Jen/Roly, which turned the visit into a full on consultation and they decided to step back from the hypertonic trial until they could get to the bottom of what was causing the wheeze and the possible current infection. I also asked about trialling Spiriva (I'd never tried it), but Roly said it was throwing one too many ingredients into the mix, as they want to figure out what's going on first, so I'm on two weeks oral antibiotics (Cipro and Rifamplicin) before the next appointment, so fingers crossed it all calms down by then.

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. :-)

Utopia

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

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...