Bunged up Bubbles!

…..This is one for Home O2 users who use a Bubble Humidifier…..

1. Don’t use tap water
2. Change/thoroughly wash/scrub out the bottle weekly
3. Check the O2 flow rate is exact.

Yesterday afternoon, I had to call out the O2 Engineer. Julian discovered my O2 concentrator wasn’t giving out the right amount and the flow rate I’d been breathing the night before last actually wouldn’t go above 1LPM. Disaster. It made me think was this the reason as to why I have been feeling so rotten every morning for more than the last week. Maybe what I thought were CO2 headaches were in fact lack of O2 headaches, like I used to get before I went onto overnight O2.

The long and short of it was that I hadn’t been changing the bubble humidifier bottle and I had been using tap water in it.

Two No-No’s!

So the tubing in the bottle was lime scaled up, and the flow rate was radically decreased due to the bunged-up bubble humidifier tube.

We also checked the O2 tubing (50ft round the top of the house) wasn’t kinked, and it was all fine. So the solution was easy!

1. Change Bubble humidifier for a shiny brand new one (see mine above!)
2. Put distilled water in it
3. Tell Susannah off!
4. Provide Susannah with distilled water and a bunch of new bubble humidifiers.
5. Lecture Susannah about not doing this again!

…..And the result-A good night’s sleep on the correct flow rate and waking up without a headache!…..!

Almost Two Thousand Hours!

…..or 1,999.96 hours, to be exact!….

I noticed the counter on Elliott my big oxygen concentrator, at about 1am, when I was waking up and having a bad asthma night and switched the light on.

It would have been quite nice if I had woken up right on the 2,000 hour mark!

Incidentally, I’ve always seemed to have this knack of looking at the car odometer when it is changing to a significant mileage, or looking at my watch when it is changing exactly on the minute. I noticed the counter in the night and just thought “almost two thousand hours”.

…..Doesn’t seem very much though, when you calculate I’ve had this concentrator for over a year, but I do use the other one rather a lot too!….

Bolus Dosing

….Yesterday I had to bolus dose a huge amount of Prednisolone….

I’d been back at baseline-10mg-for around a month but I could feel lately, things have been getting quite twitchy with all the pollen and rain and humidity. Yesterday was an awkward lung day. I cancelled my Physio as I thought it would be too extreme: Autogenic Drainage plus the coughing and no point in deliberately coughing myself into another attack or spasm. So I contacted my Consultant to say I felt I was slipping and could I whack a big Pred dose. The email came back immediately saying to take a whacking great 50mg or 60mg depending on how I was after nebbing from my O2 concentrator-which is slow, but does boost the vitals. My Sats were not terrible, mid 80s on air, but went back into the low 90s after a couple of nebs at lunchtime. And although the tightness prevailed, I knew I was still heaving air and very uncomfortable. So at tea time I bolus dosed a whacking great 60mg, which bumped my oral Pred for the day up to 70mg!

I have had a weird night of drifting in and out of wild floaty dreams, whilst propped up in bed on 5L of O2. And I am now greater than thirsty! Drunk a huge amount of water through the night and was craving coke before that-hoping that the theobromide in it would boost my Aminophylline levels! I do feel a lot better and have definitely nipped this attack in the bud and done the right thing.

I’ve also been instructed to take a lunchtime dose of my Advair for a few days-this will put me 3 times over the limit for the LABA component. Sigh, dodgy heart rate and chronic shakes!

If the proof that I am going to school smiling as usual is not enough, I blew a 59% which is low yellow and therefore proves the Pred has kicked in. Still dodging a pants FEV1 of 0.8, but hey, that’s me!

Medical definition says of Bolus dose = “medication administered rapidly to decrease the response time”

….Well, I sure did the rapid bit and it sure has worked quickly….

Obstructive Sleep Apnoea

…..Take this online test to see what you score, and whether you might be at risk from Obstructive Sleep Apnoea.…

Click Here to take their Pictorial Epworth Sleepiness test.

The British Lung Foundation are running the test. I’m just interested to see how other asthmatics/chronic lungers score.

I do not have OSA, but do desaturate overnight so sleep with 3L O2. I scored 7. Julian scored 2. I am not a great night time sleeper but could easily drop off, most places, anytime during the day. I was relieved to find out I am only mildly at risk!

I’d be interested to hear how you all scored.

…..Please do take the test and post your score in the comments below!…..

Wednesday Weevils Wobble!

…..I wobbled after school  last night…..

Couldn’t get out of that after school Faculty meeting yesterday afternoon quick enough-was pelting down the corridors of doom on the top floor on full speed-even poor Scootie was puffing!

I got home and thought I was going to faint. That weird blood sugar low feeling when you come over all shaky and sweaty and very peculiar feeling. Checked my O2 SATS: 83%. That explained it. I’m also now almost at baseline Pred so this is my wobbly crucial time too. Texted Julian-mini riot act was read to me-put your O2 on now and sit still. So that I did. An initial 10 mins of 5L and then down to my rescue me 3L level.

No walking AB slowly round the block so I let her run amok chasing pigeons in the garden whilst I sat on the bench with E.T. in the shade and breathed in deeply. And had a cup of tea and some marmite rice cakes to pick me up off the floor, energy wise.

I used to get so air trappy on Wednesdays as it is such a hard teaching day for me and I back up so much stale CO2 talking like that-add to that a rehearsal p5 and a meeting and I was literally on my knees.

I couldn’t even detect the pollen or the ash cloud-double weirdness-it was all just my dysfunction not that of the air outside for once.

Going to have to check my enthusiastic pace today-I’ve got my band and some musicians playing for a Eucharist first lesson and have to keep going for another after school session-detention duty.

 …..I really don’t want to come home in that fit for nothing state again today!….

((Half term in 2 days and counting!))

Hand Luggage!

….Well, mine isn’t so much as hand luggage, as a wheelie suitcase!….

((@__Kerri: I’ve tried Ziplocs, even multiples of them! but they simply weren’t big enough! So….))

This trip I have progressed to a shoe box full of my packaged drugs. The complete list of what I have to take, and enough of them to last a week longer than our actual trip (just incase another Volcano blows it’s gasket on us!), can be found here.

But I have devised some methods to save on space in this already large hand luggage case:

• I choose to count out dossette boxes of all my everyday routine pill meds-4 weeks worth of them-and I keep a copy of my prescription with me as that means I am without the original packaging for many of my meds. It would simply be too much to cart around. If they’re unhappy about my being without packaging, at least I have my prescriptions and a hospital letter to show them.
• I also find that by emptying out the inside packaging from the boxes of nebs, I can break them into singles and get 40 nebules in one box, minus the extra and excess packging-that saves on space.

Just look at what I chucked out by doing that:

It is always a bit like packing a quart into a pint a pot, as we say here in En-ger-land, but I am pretty well practised at it!

This trip is requiring a myriad of extra wires and chargers though! I need 25′ of oxygen tubing for hotel rooms-plus my standard long one for the plane-which has a special airline oxygen tank connector on it, which United kindly let me keep (need one, ask me, I’ve got about 5 of them now!)

I have the charger for the battery belt for my POC, and the charger for the mains unit-both with their US leads attached (luckily, they’re lighter than the UK plug leads). Plus I have the charger that runs off the car lighter socket. Then I have the charger and lead for my Pari neb, plus my Yellow Submarine Pari neb unit (currently behaving himself again!). And, as I still have cylinders to use up in Palm Springs, I have the conserver unit and lead from my cylinder set up here to take.

Julian has already reminded me that if we happen to have a dust storm or a thunder shower in the deepest Arizona desert, it would be better for me to use my cylinders up, so we will be carting those from California to Arizona in the car too.

And apart from all that medical stuff, and my Medical Forms, Fit to Fly Letters, Prescriptions, etc etc, I have two Jumbo Crosswords, sellotaped onto a large sheet of cardboard-because I am a crossword fiend-and it helps me to drop off to sleep on the plane when I sit back and stare at them!

….This bag may be full, but it is within the size limit and incredibly, doesn’t require a Russian Weightlifter to carry it!….

POSTSCRIPT EDIT:

….And you know what I totally forget to say was also missing from the above hand luggage case…

• The MacBook I am currently typing this on! Plus it’s charger!
• And the iPhone charger my iPhone 4 is currently plugged into!

….Phew!….

Elliott is snoring!

….I shot this little video of Elliott snoring this morning….

You met my newest member of the mounting anti-asthma cavalry , on here, yesterday, but I thought it would be cool to show him in action. Excuse my early morning lungs and grogginess!

….The sound of the bubbling is about to lull me to sleep now!….

Introducing Elliott (my Home O2 machine!)

…..Introducing E.T.’s big brother, Elliott….

Here he is bubbling and snoring away!

And here are his space age controls!

The Oxygen company gave us 2 models to choose from and Julian went through all the spec and we both liked this one for my needs, better, eventhough it turned out to be the slightly heavier of them. But it is now upstairs in my ‘home hospital room’ so weight doesn’t matter (23lbs). Elliott is an Invacare Perfecto2.

He snores and purrs gently, (37Db) and is currently bubbling too, as I am using a bubble humidifier with him, as I am not yet used to constant continual flow O2 at home. I have been using cylinder O2 on constant when I have been flaring and needed an emergency boost, but little E.T. my POC is pulse dose, and I actually prefer pulse dose for many reasons, not the least of which being it does not dry my nose out! I also like to hear that I am breathing and therefore still alive and kicking!

This will be a whole new experience as well as a continuation of the new world opened up to me in the short time (since late May/June) that I have been on overnight O2 and  pretty much using it 24/7 /PRN.

My SATS after my night on 2.5L constant were 96% but the moment I take it off and move around they drop and sit around the high 80s/low 90s on air. This, for an asthmatic, is unusual, but my lungs have been damaged. Being on oxygen is allowing my body to repair itself and prevents my heart from over working, because as with all the nebs and the drugs, I have a very high heart rate and have been getting a few random palpitations this year.

I actually tried nebbing my morning drugs through the oxygen machine which is a huge benefit in an emergency. It needs to be turned up to maximum then though, well above my usual flow rate. This is what they do with me the instant I arrive in the Emergency Room. Many hospitals in the UK neb through the plumbed O2 supply, as they can’t supply so many neb machines, particularly in my local hospital.

I had one stretch of 4hrs solid sleep last night, so deep that I did not hear my phone go off 3 times, and had Julian (at work on nights) very worried. The difference in me in the mornings after a night on oxygen is unbelievable. I have energy because my body has rested and I don’t wake up with that dull CO2 headache, unless it’s a migraine, and I’ve had enough of those recently, due to a tonne of stress, the humidity, thundery weather, and at this stage of the school year, complete and total exhaustion.

So that was my first night with Elliott. It was a shame J wasn’t home to monitor things, but he is still on Nights. We have been like ships passing, this week, coupled with some highly necessary about to start emergency building work going on at home, still another week and a bit of school to trudge through, and a marked change in the weather. My lungs and head are currently having a battle with my will to function!

Elliott is great, I already love him- he will join the family of hilariously named medical equipment, keeping me going in  this crazy, stressful, severely asthmatic life of mine.

….I’m off to school later, with E.T. for the day!….

A Big Thank You to O2!

….You can interperet this any way you like, but….

I’d like to say a mighty big ‘Thank You’ to the O2 Store in Brent Cross shopping centre.They treated me with utmost respect and care when I turned up to queue for my new iPhone 4G yesterday afternoon.

When I explained I had 2.5hrs of O2 in my concentrator, and after being told the queuing time could be 3 hrs, they took me under their wing. Not by queue jumping, how frightfully unBritish and unsporting that would have been!

But they brought me a chair and kept checking me in the queue every 10 minutes or so. Asking how my oxygen was going and bringing me cups of water. I was soon so waterlogged I began to think I would have to leave the queue to waddle off in search of a restroom! They even asked me if I’d need an ambulance if my oxygen ran out.

But I got to the front after 1hr 20 mins, and was served on a soft sofa by the Manager who understood it would be difficult to ask me to stand at a pod,  and I was presented with my prize for queuing (after presenting my credit card!).

So here is iLudwig 4G as he is affectionally and musically known, and hopefully the last grainy picture on this blog, taken with my old iPhone 3G:

And I am eternally grateful for the kind and considerate way in which all the Staff at Brent Cross treated me, yesterday.

But especially to Danesh, the queue supervisor and Gary the Manager who served me.

It was an impromptu shopping trip, with a superb finale.

But seeing as I am such a great advocate for the little Airsep Freestyle O2 concentrator,

….I do wish the company would hurry up and reply to my email letter….

….You can also read about yesterday’s purchase experience on my Project365 blog, day 29, here!….

The Heat is ON!

….And so is our Air Conditioning and the Irrigation system….

We do not experience such hot spells of weather very often in the UK. Global Warming, or rather, Climate Change has affected us differently-more that we get a year long mish mash of temperate weather. So the coldest, snowiest UK winter on record has been followed by what is showing all signs of being a boiling summer. We are officially in a drought now-with no measurable rain for 3 months.

And, being British, we all like to complain about the weather. Every time I look at FB, I see copious numbers of my friends’ updates mentioning ‘it’s too hot’, ‘it’s too humid’, ‘who stole the air’ (guilty for that, I’m sure) and others.

And of course, most of my friends have lung issues of varying degrees and we are all affected differently by the various weather and air conditions.

I for one have wet lungs, and therefore love dry desert heat. I need my daily 5 minutes in a sauna. I love the heat we are currently having but find the pollen, humidity and pollution of living outside of London affecting me badly. But in order to get animated during the current World Cup and Wimbledon matches, I am needing to wear my O2 at rest-because I am almost leaping off the sofa sometimes, and any amount of activity in this hot, airless environment has me gasping!

Others of my friends are moaning so much about our current summer, but then, they also moaned during the winter. We’re British, we moan about the weather-didn’t I already say that?

I have a good friend who loves humidity for her lungs-she goes in the steam room at her club and enjoys Florida holidays-but that would finish me off. It is sad to think I can never go to The Everglades again.

It is too humid in London and my one saving grace is the shade of our cool sunken patio or being able to retreat inside to our air conditioned bedroom.

And so far this Wimbledon they have not had to close the roof over Centre Court for rain. And my school are allowing pupils to leave their Blazers at home and arrive in their shirt sleeves. And we have already had it put to us that if the temperature is above a certain 30C/85F we will cancel Sports Day. Well, it’s supposed to be 30C/85F this Thursday actually! And Sports Day is still 3 weeks away.

Unfortunately though, my £21 million new school campus has windows that don’t open and CO2 vents that still don’t seem to work properly and the worst air con you’ve ever experienced. so I am better off in my at home air, although I do love my job. If it wasn’t for the fact that I have my own oxygen supply permanently on these days at school, I’d really be wilting and even more SOB.

Dear Brits, we get such awful summer weather usually, please try and enjoy this and stop moaning, for once.

Celebrate the sun and it’s healing love and warmth, and be happy about it!

Thank You!

And it’s not just the heat inside and out, it’s the dryness of the ground and gardens. Luckily back in 2003 we installed front and back garden irrigation for ourselves and both of our families have it too. But I am now needing to run it manually as well as on auto, and need to get the sprinklers going on our dried up lawns. Hose pipe bans here we come. Will this be another 1976 when Hyde Park resembled the Gobi desert?

….I dread to think what our electric and water bills are going to be this quarter!….