‘Mugged’ of air by Mist and Fog!

…..We woke up to a right pea souper yesterday….

Of course, the temperamental bellows knew what was out there even with the curtains drawn and every window in the house shut. I guess it comes in through the CO2 vents in the windows! AB wasn’t amused either-she sneezed when I took her out at 5.45am. We had to get up early. I was driving J to work at 7am-something which turned into rather an adventure in such horrid driving conditions. I had to get out the manual for his car as I didn’t know how to switch the fog lights on!

And all the way to the BBC, the lungs were protesting so. J sounded like a record getting stuck “You need a neb”  and “Promise me you’ll have a neb as soon as you are home” turned into “Make that a double neb, please!”

Actually when I did get home a little after 8am, I ended up on a triple neb whammy, a double ventolin plus an atrovent and then a super seven percent saline one and a spot of gunk clearing physio.

Fog is my worst enemy.

Forget Floridian Humidity, which in itself finishes me off, Fog is evil, with a capital E.

I may have done my good deed for the day in driving J to work to help him, but silly me, I didn’t exactly help my lungs in time. And then spent the day in bed, accompanied by my mini Furry Fajita who herself does not appear to like the Fog either.

It did lift mid afternoon-my friend Tasha saw to that by single handedly blowing it away, all the way from Holland

Today the fog is lesser this morning-but I took the time to wrap a scarf around my face before I entered into the great beyond to water the dog at 7.30am. Thus doing a wonderful impression of a burkha woman.

I’ve had a rather broken night-up twice for nebs. Oh how these little barometers do annoy me so. I’m in for a bit of a duvet day again here, no doubt.

….Reckon the time of year has arrived to dig out all the scarves and gloves!…..

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….

Bad timing lurgy!

….So my cold went South….

Such an annoyance. I’ve kept J awake and he’s been on an exhausting Late shift for a few days. I’m hoping I haven’t passed this to Anna-Bell who has been sneezing A-LOT (mind you, the whole world has hayfever atm!) People are running out of sympathy and disbelieving me when I say I have a ‘rotten cold’ as they are all trying to tell me it’s ‘hayfever’.

S-O-R-R-Y! I know my lungs and I’ve had more than my fair share of lurgies to know this ain’t just a seasonal sneezing thing. Plus I have been running a temperature all week-very, very unlike me.

It’s the Easter Holiday weekend and with Easter being so late this year it’s pants that I’m feeling so rough right when I need to be “all batteries recharged” and ready for school again on Wednesday. I suspect much of this is to do with the fact that with ABs op I have been living off of adrenaline for the last few weeks, and was flat out exhausted from the end of term but didn’t really get to recover from that before we were dealing with our doglet. Never mind.

So it’s Action Stations here. I’m having to fire the “Added on Extras” to my regular “Anti Asthma Arsenal” now.

• Whacking the Pred up to 40mg from NOW!
• Whacking the emergency Antibiotics from NOW too!
• Doing 20mins of Autogenic Draining twice a day (very boring and uncomfortable and exhausting)
• Nebbing the 7% hypertonic saline that my Physio prescribed on Tuesday twice a day.
• Sinus Douching twice a day with Montesol (hefty saline and Dexpanthenol)
• Taking my Carbocisteine 3 times a day from now on, with the extra dose being the liquid form at lunchtime.

I knew this would happen. My Physio on Tuesday said to me I was crackling and sounded really nasal and I knew on Tuesday I had a cold. And like all  gravity, it went South.

And we have a smog alert over much of the UK at the moment, so what chance have I got of shaking this off easily?

….Bad timing lurgy or what?….

The Tortoise won!

….I am not good at being patient!….

But since becoming ill at the end of October I have had to lose the ‘hare’ in me and develop an uncustomary amount of ‘Tortoise’ in my persona!

I am very happy in these final days before Christmas, to be reporting that I have finally, hopefully conquered this long and really nasty bout of chest illness and am now up and about doing Christmassy type things like playing Carols in the background and wrapping presents. I suddenly feel I have more energy and verve and do not feel like I am being dragged into gloom and doom by my lungs, like I have been for so long. In fact I am probably more fully functioning than Heathrow Airport in this dreadful snow we have been having.

I guess I am lucky that the snow hit when it did, as just as I was thinking I was Wonder Woman again and could perhaps venture out further than the Drs or a hospital Appt, we all became housebound due to the weather!

It has taken a great deal of recovery and drugs to get me through this. And now, looking back on it, I should have given in and gone into hospital for IV treatment, but my track record of hospitalisations in the run up to Christmas is not good and I was so worried I would still be incarcerated on December 24th, but I’ve done it, the Tortoise has won.

I’ve taken a total of 5 courses of 3 different antibiotics, have dosed down 4 bottles of Mucodyne Syrup and have so far had 5+ weeks at 40mg of Prednisolone. I’ve also been through 5 boxes of Hypertonic 6% saline nebs (that’s 15mls a day nebbed on average) and countless, yes countless boxes of Ventolin nebs-I’ve been nebbing PRN but up to 2 hourly, and on a few days hourly. My GP said to keep all nebs and meds at their max in this time so when I announced last week that I was hoping to reduce the Pred, she said “not at the moment”. But I’m more or less back to my baseline drugs of 2 -3 Atrovent nebs and Ventolin nebs 1st thing in the morning, lunchtime, evening, and night time with puffers in between. This is brilliant for me. My Aminophylline level came back as 15.1 so that is also very good-high, and no doubt the result of all the antibiotics I’ve been on which have pushed the level up! But I’ve been told by the hospital to stay on the Mucodyne Syrup for the time being. It really works for me.

I’m still in a whole lot of lung pain and am still harbouring a gunky cranky cough, which I have to produce yet another sample of this morning-cue the picture of the sputum pot-no, just joking! But my breathing is, I guess, fair to middling, Yayness! I beat this pneumonia!

So my one final thing then is to show you the weather and the proof that this little Tortoise is now alive and kicking!

I also figured that to stand outside in the freezing cold for a few minutes would probably do me good! Apparently snow gives off a lot of oxygen and the extreme cold would have killed off the remaining bugs in my airways (I so hope!)

….And I would have asked J to take me to the Club for a Sauna afterwards, except they’s sent out texts to say they were shut due to being snowed in. Fail!!!….

The Whole Coughing Rainbow….

…. It’s an education in itself!….

So apart from the fact that the Locum GP made me quite unhappy yesterday, she did come up with some interesting and informative thoughts on the current state of my lungs! I thought I would share a little as I am trying to educate myself as well as my readers here!

Amongst the myriad of crackling and wheezing, how is it that I know that my cough infection is clearing up, when I’m coughing  practically as much, and now, apparently, wheezing more?

Well, of course, I don’t want to gross anybody out so I’ll be as tactful as possible, but  you may have previously come across that song, Brown Sputum, you know, the one sung to the tune of  the Rolling Stones, Brown Sugar! If not, you can find it here!

But during the last month, with my “mild pneumonia/chest infection/flu that wasn’t flu and now Acute Exacerbation of Asthma”, I’ve been through the whole Coughing Rainbow, more like the following colour splatter, ie, a more subtle and sligtly less gross to look at chart!

So why is it, that every time I cough, Julian or my Doctor, if I’m there, says to me, “What colour is it now?’

Believe it or not, it’s not the colour, but the change that matters. If your usual is one of the above, and you deviate from it then this is the indication for there being an infection, and not so much the colour itself. I was always told that having green phlegm meant your immune systen was working hard, and it doesn’t necessarily spell i-n-f-e-c-t-i-o-n. It could just as easily be a virus.

But I think with all chronic lungers, be they Asthmatics, COPDers, or people like myself who are a mixture of the two, knowing exactly what is going on down there, and keeping up with the bug busting remedies is very, very important.

I guess therefore, that having had this underlying Yeuch Couch going on for 4 weeks now, I am at least relieved that after 3.5 weeks on strong antibiotics it is somewhat less infected. But somehow, amongst the crackles and the wheeze I still have to shift the rest of the gunk, because, as my Doctor firmly stated yesterday, if it stays down there, it’s going to continue to feed the infection zone. And my lungs have fast become a one way road to Phlegm City…

So her ideas now are, try and wheeze less, therefore, extra ventolin nebs to open things up, extra saline nebs with the PEP to cough more up, and continue the bed rest to allow my body to heal up! Drink lots of  hot drinks to soothe my tight and twitchy little airways, and above all turn the heat up: warmth in the house will give myself the best chance to recover from this.

And so her prescription yesterday was:

….Another week off work….

(And that will be another post in itself)

Watch Out-They’re About!

….It’s that time of the Seasonal Shift again!….

The time of year when the Summer gives way to the Autumn and the EPPs (Evil Pollen Particles) disappear in favour of their cousins, the EMSs (Evil Mould Spores).

Watch Out! They’e About and they got me last night!

There are thousands of types of mould, however, only a few of them are currently available for allergy testing. It is estimated that 60% of the population may be allergic to pollens and about 20% of those may have mould sensitivity issues. If you have been tested and you know what affects you then you’ll hopefully have an action plan from your Doctors. Even if you don’t have asthma issues, these are some of the possible effects of mould irritation:

I know I need to step up my steroid tablets, (Prednisolone), and double the dose of my nasal spray, (Nasonex). The worst lung infection I have ever had was from a colony of Aspergillus which can cause pneumonia type symptoms. It thrives in damp soil-And I love to potter in my garden-this is another reason why people with a ‘wet’ lung disease, such as some types of asthma and CF, shouldn’t keep house plants. They are a breeding ground for moulds.

See these two factors below for more information and clickable links:

• Aspergillus is a common indoor and outdoor mould, also associated with allergic bronchopulmonary aspergillosis.
• Moulds can also cause severe immune reactions as a result of colonizing (living in, but not causing an actual infection) the lungs (hypersensitivity pneumonitis) and the sinuses. Moulds are also well known to cause various allergic diseases, such as allergic rhinitis and allergic asthma.

So if like me, you are mould sensitive and are having symptoms; (I had a full blown asthma attack that required 4 nebs to recover from at 8.30pm last night, simply because I went out into the garden to check on something random-well, my grass seed!), then see your Doctors. You may need to step up Protector/Preventer and/or Reliever type treatments or take a course of Prednisone to get you through this month.

Autumn is a time when, because the weather is changing, we may not be needing so many windows wide open, and so by shutting them, particularly, (like you should do for pollen), in the evening, you may find you can keep the EMSs out! Wash net curtains, damp dust, invest in a de-humidifier if your house is really damp. (I lived in the country, in a very old stone cottage in the mid 90s and Boy!, was I sick in the Autumn, every year-that place was dripping water from the walls it was so damp).

Oh, and if you live in the UK-listen to the Sky News weather forecast as they are giving out mould spore readings, much like the forecasters do for pollen.

….I was not at all surprised to find out that the current reading for London and the South East, is Very High for EMSs!….

Sunny, Stingy!

….This is what I looked at whilst lounging on a raft in the pool, yesterday!….

Unfortunately, just as I was nodding off for a nap, one of the many desert critters decided to nibble my foot. It got thwhacked by J and promptly died-a wretched wasp!

Luckily for me, it did not sting me in a particuarly thin skinned place, and the bite only swelled up a tiny bit, whilst stinging to high heaven. Also luckily for me I am not at all alergic to wasp or bee stings, unlike my Mother! Plus, with a decent amount of Pred permanently in my system, it didn’t get a chance to cause any sort of a reaction!

Best treatment for wasp stings has been found to be a big frozen strawberry margarita-certainly numbed the pain!

But we had great fun with our friends who we will see more of today-going up to the spa at Desert Hot Springs. J and I are still very much in necessary relaxation mode and apart from a trip to Cabazon (the factory stores), on Wednesday, are still acclimatizing.

My lungs are working hard to degunk. I have a filthy cough at the moment. This always happens for a few days then things settle down. I have used my oxygen more in the evenings and overnight of course, although I managed to really drop my SATS swimming yesterday (86%) so I’m going to need to monitor that more-but I generally don’t take my monitor with me when swimming at home, so it might be my norm. My PFs are up-I have managed another 312 just now. I have also found my need to neb is already less. But again, I can never get lazy there, must always be prepared and have Baby Omron with me!

….So far, so good. The weather is ‘cooling’ for the weekend, it’ll be mild at about 108F, they’re saying!….

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!….

Pari has a Problem!

….Now is not a good time for anything medical to go wrong!….

So you can imagine how freaked out I became on Sunday when, arriving at the hotel in London, I went to have my neb and Pari was just not behaving himself. It appears the on/off switch has developed a small issue-well, a large issue-one of temperament. He simply decides when he wants to stay switched on-and when he wants to not be switched on at all.

Julian thinks it is the contacts inside and they probably just need a squirt of some of his magic alcohol based cleaning fluid. But I do not want him tampered with in any way what so ever, (Pari, that is, not Julian!). I seem to be able to make him work by lightly touching the on/off switch. He then appears to work normally, as this video, shot earlier this morning when he was being surprisingly well behaved (isn’t that always the way?), shows:

Oh well, I guess I’m not overly worried, as he does work. It’s just that he is my favourite travel companion, neb-wise, and the thought of him doing a total splat on me this close to a trip would mean I would have to lug the Medix (big blue toilet of a neb machine), and I already have enough oxygen gear to transport without having to make space and extra allowances for a huge workhorse neb to come. Baby Omron is always in my handbag but he is best for prophylaxis and not emergency treatments!

….Sigh. These things are sent to ‘try’ us. Sigh again!….

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!….