Turn, Turn, Turn

The old man requested this Judy Collins cover of Pete Seeger's song be played at his funeral about a month ago. Ah, he was well into his sixties folk :-).

His funeral was last Wednesday and leading up to it I was dreading the whole thing. In fact when we parked up behind the hearse outside the chapel and the funeral directors got the coffin out I was really paniky and freaked out, but halfway through the service I felt sad but somehow serene. If he was there in spirit then I think he was telling me it was OK to move on, let him go, and not to be too sad. I'm going to miss him loads though, even though he was house bound in recent years he was still a big part of our lives.

Dad

My dad died peacefully on Tuesday 13th December, 4.30 PM. He was 65. It was only the week after his birthday and on his 65th birthday we all went round and he told us (my sister, my mum and I) how proud he was of all us and his four beautiful grandchildren; we talked about lots of things (including the Tibetan book of the dead, Greek legends and all sorts) and it's just such a shock that this would happen because he was really upbeat. We talked about what he would have for his Christmas meal. (He wanted trifle!) I'd just set him up with a new digital recording box for his birthday and he seemed really happy.

He went into hospital Saturday evening with breathing problems, when I rushed in to meet him at A&E (I'd been on a night out so had to get a train and R had stepped in to help him out and persuade him he needed an ambulance) he was struggling but he was also talking about the City game in the afternoon and how crap one of our strikers was. His breathing seemed to settle although he was on O2 he seemed to barely need it. R went to get him some clothes and turn his fire off and at about 11 I left him to get some sleep just before he was moved onto a ward. When I got home the hospital phoned and told me to come back straight away. Shortly after arriving on the ward he had had a massive aspiration into his lungs, and he just never regained consciousness. We kept hoping, but in the end he was just too weak to come back from this trauma. In a way I think it's what he would have wanted, he hated being in hospital, he didn't want to end up in a home, and he kept his independence to the end, which at times was a real battle for him.

My dad had Myotonic Dystrophy; it wasn't diagnosed until he was 50. it's a form of muscular dystrophy and it was complications from this that led to his death. He had had his ups and downs with depression in the last five years due to becoming more and more housebound as the illness began to restrict his mobility and limit his ability to eat. In fact this year I was giving him half my Scandishakes (he was on Ensures as well) to help him keep his weight up. We talked about tube feeds and neck operations but he was too old and stubborn, he didn't want anything like that.

His mind was so sharp, he was a clever guy, a funny guy and he loved life. I hope the ongoing genetic research can one day eliminate awful, horrible, unfair conditions like this.

Mum and dad got divorced when I was 18 but after it had all blown over they stayed good friends and for the last years she helped with his shopping every week and they'd have a good natter.

I'm going to miss him loads and I'm really sad but I think he'd rather we remembered the happy times and I think he enjoyed life; he had great friends, family. He had two great jobs. He was a genius at micro chips/silicon chips. With his jobs / holidays he got to travel the world, he visited every country in Europe and most states in America. he got to ride the pacific highway from LA to San Francisco. He lived in Manchester and London, in London he lived in Caterham in a lovely house near the south downs with fox cubs at the bottom of the garden.

Love you dad.

xxx

Broken

My dad's currently fighting for his life in hospital, I was with him when he was admitted but he deteriorated after he moved wards. He's currently stable but he's unconscious and it doesn't look good. Going to get some sleep and say some prayers.

Love to all xxx

Impatient at the outpatients

It's been a while. Sorry. It's not you, it's me. I've had a lot going on, and I've been unable to articulate the thoughts in my head with any degree of clarity. I can't guarantee clarity anytime soon either. But I can guarantee it will be pretentious ;-)

Dah, well, I've had been feeling pretty good about health, life and fitness for the last few months, but cometh the winter, cometh the downturn. It all started about three days before my outpatient appointment, I'd been thinking how lucky I was to avoid getting a cold what with the entire population of greater Manchester having coughs and colds, when I actually came down with a cold; for the first three days it was just a bog- standard nose/throat cold, but on the fourth day, when my cold symptoms started to ease, the virus started to move onto my chest and my rubbish CF lungs started responding in their usual way by producing the thickest, gunkiest gunk this side of the Exorcist.

By the time the outpatients appointment came it was a complete no-brainer as to whether I needed IVs, so my cannula line was fitted and I was putting the IV boxes in my car ready to get on the home-IVs bus. At least that would have been the case if my Ultrasound appointment hadn't overrun so long that by the time I'd ran upstairs (on an empty stomach, stressed, and unseen!) to the CF outpatients it was already too late to get started on IVs, Arghhh! Note to me myself and I: if I have two appointments at the same time, one an ultrasound and one a CF outpatients then definitely go to the CF outpatients first! Anyway, I can't stress enough how professional my CF team are; when I told them what had happened. They ordered me some food, got me a cup of tea and ordered my prescription ready for the next day. Also, whenever I go in and say I need IVs (admittedly not that often, touch wood ;-)) they always agree with my judgement and just get on with the whole process with as little fuss and stress as possible. Makes it a lot easier for me. Blows were down some (FEV1 2.55) as expected, but I could feel that anyway with the increase in sputum and night coughing. I was going to do some running and biking this week to help with my physio, but with all the snow and ice, it might not be the best idea...roll on thaw!

I also have some stressful things going on at work, with my mates, and with my family, but I am all moaned out, so it will have to wait till another day ;-)

Oh Bramitob: We are so disappointed....

To give a bit of background, I started on Bramitob a week after I'd come back from holiday in Ibiza. I don't know about you, but holidays in hot countries always seem to have a good effect on my chest, and I usually feel clearer and dryer while I'm there; whether that's down to the dry air or the sea air I'm not sure; although the last time I blew a massive 3.3 it was straight after a week by the coast in Wales in the middle of the summer. Maybe the NHS should pay to send pwcf off for a week in spain every winter, it'd be cheaper than IVs and perhaps just as effective? Just don't tell the Tories, or the Daily Mail ;-) I also finished off an old course of Cipro I had after the holiday to make doubly sure my lungs were squeaky clean for the test.

Anyway, I went to the hospital to do the first neb of the trial with the physio (they do this just to confirm there is no sudden drop in FEV1 an hour after the first dose of Tobi) After a few blows, all was well, in fact halfway through I figured out my blow technique has been all wrong (I was blowing too hard) and thanks to that (relaxing and blowing slower) I was able to comfortably blow 2.9; great! so all in all there was no ill effects after the first dose.

For the first week all was well, apart from a slight sore throat and the Bramitobi tasting of cheese. I even went on a solo mountain bike ride (both my mates cried off with excuses) in the rain with no obvious problems. However; by the second week, I was starting to get both a tightness and a wheezy rattle. And also, there was something I couldn't quite put my finger on; even though my sputum was thin and white, it was as if the sheer volume of sputum I was producing was starting to increase, to the point where it was causing me breathing problems. My long-suffering misses even complained that I was breathing noisily or "weirdly" in the night (and I hadn't been drinking either ;-)) So after consulting with the phsiotherapist (and the ever knowledgeable Telamere, who was also doing a similar trial) I decided to stop it.

Gutted, it's meant to be a lot more effective than Promixin and can even reduce the amount of IVs you need. Ah well...

Son of Tobi: Bramitob

Earlier this year I trialed Toni through the INeb with less than spectacular results (my chest got wheezy, gunky and crappy and I ended up on IVs) Was that down to the Tobi or was that down to a virus, the cold, icy winter and weight loss? I've done Colymycin nebs for many years now with no problems and I've done Dnase since the mid noughties.

Whatever anway, the CF Manchester team did suggest we retrial the Tobi with a different, isotonic brand to see if it that would have a better effect. I'm just starting a months trial of this. so far so good but it tastes like parmeggiano cheeses (or smelly socks); I'm not sure which. Or is it goat's milk? 3 days in and OK so far. I've decided it doesn't taste like Parmeggian cheese, it's more like milk that has been left out of the fridge too long...the physio said they'd made an attempt to improve on the taste of Tobi as well. I'm trialing the Bramitob in a Pari compressor nebuliser and it takes about 5 minutes. The only downside is I need to deliver it near a window to avoid exposing the family to concentrated Tobi mist, and it's freezing! ;-) In trials Tobi is rated to be much more effective than Colymycin in blitzing pseudomonas which is one of the reasons I'm quite keen to get back on with this.

To Be Continued...

Ibiza In Pictures

Chicken Curry

Well, as it stands, I'm not sure whether we're gonna make it to Ibiza this weekend. Oscar has got chickenpox three days before the flight so we'll just have to see...anyway in the meantime this is my submission to CF Talk's food issue:

Woody’s Quick Chicken Curry Recipe (Serves 2)

Ingredients:

• Chicken Legs/Thighs (4-6 pieces, leave on the bone)
• Onion (chopped)
• Garlic (1-4 cloves to taste, chopped)
• Ginger (small piece, peeled and chopped)
• Chillies (1-4 to taste, chopped)
• Tin Chopped Tomatoes
• Whole Garam Masala mixture, (ground with a pestle and mortar or spice grinder)
• Vegetable Oil
• Rice

Instructions:

1. Add the oil to a non stick pan or non stick casserole dish.
2. Add the chicken pieces and lightly fry them for 2-3 minutes until they are golden (no need to cook through)
3. Take them out and put them in a bowl for later
4. Add the onions, fry for 2-3 minutes until golden brown
5. Add the freshly ground garam masala. The frying pan should be hot enough to heat the spices through so that the lovely flavour really comes bursting out.
6. Add the garlic, ginger, chillies. fry for a minute
7. Add the chicken back in
8. Add the chopped tomatoes, add water to taste (the more water you add the longer it will take to reduce down to a thick sauce)
9. Bring to a boil, put the lid on, turn the heat down and then simmer slowly with the lid on for about 30 minutes.
10. You can check the chicken is cooked through by skewering it with a knife down to the bone; if the juice runs clear, you’re sorted.
11. For the rice, get one cup full of rice, two cups of water should do for 2 people.
12. Add to a saucepan, bring to a boil and then simmer for about 10 minutes when the rice should be ready. Stir occasionally to make sure it doesn’t stick.

This is my basic student curry recipe and it probably saved me from malnutrian when I was a student. I like chicken on the bone because it has more flavour and doesn’t dry out like chopped chicken can. You can adapt it in loads of ways; if you don’t want chicken on the bone? Chop it up. Want it with lamb or beef, fish or prawn? No problem, just remember lamb or beef may need longer to get tender, and don’t over cook the fish. If you want to add mushrooms and peppers, go for it. Want to add yoghurt or chopped coriander at the end? Simple, but turn the heat off and stir the yoghurt in really gently. You can buy ground Garam Masala from the shops but it loses it’s flavour really quickly so I would always recommend the whole spice version. You can pick up the whole Garam Masala mix from most supermarkets these days and all Asian grocers sell it.

Who ate all the pies?

I had my best hospital visit for a while back on Wednesday. Weight is back up to 10 stone 5; so I've put on half a stone since losing load after Christmas. Hurrah for Scandishakes! With the help of a Scandishake with breakfast nearly every morning, my weight has slowly crept back up again. My blows have stayed pretty steady at 2.7/3.9, my flight SATS have somehow got better since my last test a few years ago. The only thing to watch is the aspergillus levels which have risen a bit, and the glucose tolerance test, which shows my blood sugar does dip quite low 2 hours after the test.

A bunch of us went camping last week near Ullswater. The kids coped really well, it helped that they had loads of kids their age to play with. The weather wasn't great but it didn't rain and you can't ask for more than that. The cheap supermarket BBQ meat was pretty gross though, it was so bad none of us could eat it and the dogs that went past in the morning steered well clear as well ;-)

Proud Brother

typical, my sister inherits the long legs and I get the short and stumpy ones ;-)

Last weekend my sister was finally given her BSc Hons in Geography. Me and my mum went to the graduation ceremony with her boyfriend, then we all went out for a drink and some noodles to celebrate! Happy times, even if the ceremony was a bit boring (A massive procession of students being clapped, and J was right at the end...)

Current Eating/Treatment Regime

PWCF need to eat a lot to stay at their current weight. I think I'm lucky in that I don't have to eat as much as some, but still, in the last 6 months, I've somehow lost about half a stone without my appetite dropping or without eating any less so I have had to add a scandishake to the mix. I had a meeting with the dietician the other week at my annual and she suggested adding another scandishake at the end of tbe day.

Food / Med Diary (Week)

• 6.30AM Get up
• 6.45 Azithromycin and Flucloxacillin
• 6.50 do Dnase on INeb
• 7.00 Breakfast Scandishake with full-fat milk and cereal
• 7.00 Vitamins, uniphyllin, calcium chew
• 7.45 Drive to work, drop off kid(s), do some physio in car, spit into empty creon pot in car. (Timing is everything in this ;-))
  
• 8.30 Arrive at work.
• 8.30 Do Colymycin Neb in car at work
• 10.30 Apple, banana
• 11.00 2 Pork Pies
• 1.00PM Lunch (Sandwich, Mayonaise, Meat Filling, Crisps, Tango or Tea)
• 3.00 Chocolate bar (note: Boost is 300 calories!)
• 5PM Leave work, pick up kids.
  
• 6PM Dinner with kids (have to play it safe so kids have something to eat so we normally have chicken, brocolli, peas and mash, or bangers brocolli and mash, or Lloyd Grossman's Tomatoe Chicken Balti and Rice, or Spagetti Bolognaise or Pasta and Roast vegetables which the kids will actually eat.
• 8PM Kids in bed. And relax. Either go for a run/bike ride or get the wine out, depending on how healthy/lazy I'm feeling.
  
• 9-10PM Colymycin Neb

What an exciting life I lead. Need to try and squeeze in another Scandishake at the end of the day but at the moment it's a struggle, my tum needs a rest ;-)

Tumbles day

A tumbles day is a day to forget, and I've just had one. Yesterday I decided to work from home to make it easier to drop off Abby today and sods law; one of the big bosses decided to pay a visit to the office to see me, so I missed him. He also dropped off a request list that I should have had in May for a dealine at the end of the THIS month. Grump, grump, grump! ;-) And to top it off Abby threw a mega strop at the cricket club on the way back from the school summer fair because we wouldn't buy her any more sweets. Does anyone have a manual on how to be a firm parent? Because I seem to be made of mush when it comes to discipline.....anyway, I've got the wine out and I'm sulking. With three hours of Glastonbury I taped from last week.

Turkey Break in Pictures

Lost: The Bad

OK, We've had the good, now this is the bad (I still liked it though) :

1. Episodes where nothing happens in the plot and you get a boring flash back. The interminable episodes of Hurley's flashbacks (The Dharma VW van episode "Tricia Tanaka Is Dead") and virtually any episode with Charlie's band in the flashback. Fast forward material!

2. Jack's a bit boring. Maybe it's a flaw in the script, but his over-earnest acting started to get annoying by the third season. Particularly when compared to Sawyer; he never really changed throughout the series whereas Sawyer had definite character development.

3. Kate's a bit of a lightweight as well. OK, we get it, it's a love triangle! Just make your choice freckles, and get on with the plot ;-)

4. Locke vs Jack / Fate vs Free will / Man of science vs Man of Faith. Interesting at first, but became a bit tedious towards the end.

5. Llana, the french woman, Alex, Walt and all the other under-developed characters that the writers obviously planned to do something with but ran out of episodes to do it in so wrote them off! Naughty, lazy writing boys! ;-)

6. * New! Claire abandoning Aaron then disappearing and then reappearing as a mad women. I just never bought it. Also, Kate deciding to adopt Aaron for 3 years forming an emotional attachment and then abandoning him to go back to the island. Also, what happened to the two kids in the tail section? Kids in general were given a raw deal by the script writers

Lost: The Good

So LOST is over, what do I watch now? Well before I watch anything else I need to find some closure, before I can properly move on ;-). I have decided that Lost is, was, and always will be 50% Brilliant and 50% Bollox. So with that I'm going to list the things I liked and disliked about the series.

The Good

1. Episodes like "The Constant". Desmond flips through time desperately searching for his Lost love Penny like "The Time Travellors Wife" and finally contacts her. One of the best episodes IMHO.

2. "The Looking Glass." All the season finale's were exciting, but this closer for Season Three was so good it actually gave me heart palpitations for a few hours after I saw it. Poor Charlie; I'd spent most of the time being annoyed by his Mancunian-druggy-rocker character, so it was a total surprise how gutted I was when he sacrificed himself for Desmond.



3. Sawyers nicknames/one liners. Son of a bitch ;-)

http://www.youtube.com/watch?v=8WurBi2yQeI

4. Hurley. Dude ;-)

http://www.youtube.com/watch?v=HOk9pIbM-T4

http://www.youtube.com/watch?v=eZErJDc6978

5. Sawyer grows up, becomes a leader after Jack and Locke disappear, and settles down with Juliet in the 70s. And why not? ;-)

6. They killed Juliet. You bastards!



7. The ambiguous mysteries of the island. The thing about mysteries is that not knowing what they are is always better than the explanation. Explanations are always a bit of a let-down.

Lost: spinoff series...?

No, I haven't seen the final episodes yet, so I'll thank you not to post any spoilers please!

In the meantime, how about a spinoff series with Sawyer?
:-)

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.

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...

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.

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...