Manchester Run

On the day, I woke up really early, I was a bit nervous. I kept waking up too early, then forcing myself to go back to sleep where I would wake up dreaming of running, or being late for the run. Needless to say, I ended up having a rubbish nights sleep and then had so many butterflies that I found it hard to eat anything in the morning. Oscar was still a bit poorly (he'd been sick the day before, once in his cot and once in the car. R's in-laws had very kindly offered to look after the kids while me and R took part in the 10K run. So once we'd packed them off we were all set.

We arrived in the car park super-early; last year we were in the last (pink) wave and Manchester seemed packed at the later time, this time with us being in the early (white) wave Manchester seemed eerily empty. We went down to the start, got some free isotonic drinks and waited. The bit before the start is a bit rubbish, you just want to turn up and run really and you always get too cold waiting around in your shorts before the run, and if you take a fleece or a coat or something then you will be lumbered with carrying it for the run, which will be a bit of a pain. What they are now doing is encouraging you to take your old jumble clothes to keep you warm before the race and discard them on the side of the street to be collected by the scouts for charity when the race starts. Which sounds like a good idea, if only we had known ;-)

Anyway, after huddling up with the other runners trying to get warm like penguins in the Antarctic, we were off. R soon peeled away from me; I think I stayed with her for the first 1KM, but my chest was giving me jip so I basically eased off and ran at my own pace, which generally involved running for 10 minutes, then getting out of breath and walking for a bit, then starting again. If only I could figure out a way to run without stopping, I'd be sorted! Anyway, before I knew it, I had gone past the first 5K; halfway, and then the real work starts! Unfortunately, my muscles started to ache, and I started to feel a bit low on energy...but I basically gritted my teeth and slogged my way to the finish, thankfully my chest had more or less been sorted itself out by then after the first half of coughing, so I could concentrate on trying to ignore my aching legs.

When I got to the final 500M, I actually really wanted to stop and take a breath before a sprint finish, but by that time there were crowds all around watching and cheering as the runners came to the finish, so I then pushed myself through a horrible bit where my lungs, heart and stomach felt like they were all thumping in unison, screaming for me to stop, and I wanted to puke! There was a guy with a mike on the finish line, I kept thinking "don't talk to me, I feel like I'm going to throw up...." Thankfully he ignored me. If it seems like I'm moaning, I'm not; It was a slog, but at the same time it was a great experience, and the crowds were wonderful, always doing their best to cheer us on...if my body holds up, I'll be back next year :-)

For the last week before the 10K I had been feeling a bit poo because a cold / sore throat I'd caught from Abby/Oscar had moved onto my chest and it was making me produce loads more mucus at night; this is always a big pointer for me when my LF starts to slip, when I produce so much mucus that it builds up during the night and interrupts my sleep by making me cough. When I'm on top of my health I don't produce enough in the night to wake me up. Anyway, I had kept up with a little bit of running just to keep me ticking over and I'd even cheated by injecting some left over Ceftazadine for a 4 day period, just to try and keep the mucus at bay really. Thankfully my chest seems to be a lot better since the run. Although at the outpatients on Wednesday my FEV1 was an average 2.675 / 3.8; so I am on 2 weeks oral antibiotics Ciprofloxacin and Augmentin, and we'll see how it goes.

Lakes Bike Trail In Pictures

IV League

FEV1 2.8 FVC 3.8 sputum from last month showed Staph and Pseudo. Has the Staph come back? I've not been keeping up with the Flucloxacillin, maybe I should start taking it at night again. Otherwise the visit at the end of the IVs was good enough, even if Doctor R did annoy me a bit with his questions. I also brought up the VX-770 trial, and he said I was giving him news. Which was a bit disappointing, shouldn't he be telling his patients the news? Anyway, hopefully we'll hear how the trial goes soon.

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.