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….

Results and Verdicts

…..Had my return session at RBH yesterday and came away feeling quite happy…..

Luckily, there hasn’t been too much change. Now remember, I’m talking bones and lungs here! I hadn’t had a DEXA for a good 2+years, and I must be doing something right as my bones have only decreased by about another 1%. This is a massive phew! for me. I know that Fosamax is very slow to work, or rather that bone density is very slow to build, but maybe after being on the drug for nearly 6 years things are now working positively. And the same for the high doses of Calcium plus Viatmin D that I take daily. Not that my asthma directly affects the bones, we all know it’s the dreaded Pred because of my asthma  that has caused me the osteo whatever side affects.

So that’s one positive result. The other was that I blew a really good (for me) set of lung function tests and therefore we are not going to move my base line and are still going to us my personal best PF as being 360. Last Tuesday I’d blown around 300 off meds for 4 hours and repeated this blow yesterday with my physio who also did a reversibility with me and I increased it to 330 which is about the best blow I have done in yonks! Plus my physio also gave me some good tips for dealing with my SOB in the evenings. Something I really suffer from.

My Consultant said my lungs were the clearest he’d heard them (!) and this being a few short weeks after I’d had another nasty bout of asthma plus infection, mid April. He attributes this to the hypertonic saline and autogenic drainage routine that I am now so very much in the swing of. The extra 20 minutes of lung clearing time twice a day is seemingly being positive.  I got over  that infection in 3 weeks rather than the usual 6. Plus we hit it with the right anti biotic, knowing I culture Staph Aureus.

Whilst we cannot crack the asthma: it’s there, it’s a part of me: maybe we can help the constant gunk and deep seated infection issues. I am certainly far less junky gunky at the moment though. Plus I am washing my nose out a whole lot each day-as routine. Another 10 minutes of dejunking and degunking. Wonder where has my free time gone these days?

Perhaps there is another reason as to why I do get these repeated infections-he isn’t sure, other than the bit of bronchiectasis I have, he thinks maybe my low white cell count (0.9) has something to do with it. Maybe my immune system is being knocked out by the pred? or maybe there is something else? I had a bunch of bloods done yesterday testing for immunoglobulins. I am sure everything will be fine though and it’s just because I’m a teacher 3 days a week and work in a germ factory that I get sick, often!

There is stuff to work at, besides the phyio though. I have to get my Pred back down to my baseline of 10mg and I’m currently reducing slowly and am at 25mg. This is only because it is allergy season and I’m quite twitchy, plus I ache like crazy and feel zapped of all energy-all pred reduction symptoms as far as is normal for me.

I also need to do add a few prophylactic med doses in that I haven’t necessarily always been taking. That idea of “keep what you have got lung wise open as best you can and you wont get infected?!” LOL, Andy! So one more lunchtime Atrovent neb has been added and a midday dose of mucodyne for always and not just when I’m junky/infected. Great!

And they want to see me with my next infection to run bloods and repeat some of the LF tests that will show up how bad I am during an asthma/infection exacerbation.

…..But if I can stay well, my next routine clinic isn’t now until August. That’s good news too!…..

Duvet Days!

….Do you have those days when you just need to escape from the world, and junk out with the TV and a pile of newspapers and magazines?….

Well, if you answered ‘yes’, then you’re certainly not alone.

This mid-October-iness is starting to edge me into my difficult time of year. Once Autumn really hits , I have the need to hibernate til practically March. And I’ll do anything during this spell of time to avoid my lungs landing me up in hospital. Gee, and how original that would be! So at that first twitch of ‘uh-oh!’ I climb into my divan in the spare room with everything I could possibly need to make myself stay quiet, resting , napping and, hopefully…..feeling better.

And with Julian now mid Night Shift and sleeping during the day, all this week, I need to be quiet in the house anyway, so the timing has been perfect for my few Duvet Days, if ever there could be perfect timing to feel like my lungs were becoming a little too stroppy and my energy level had drifted into non existence.

But I’m not as incarcerated in my home hospital cosy comfort, as I would be in real hospital-I am still running the house. There is always laundry to do and ironing, and meals to cook and washing up, and cleaning! Yesterday I made myself venture out into the front garden to sweep up the leaves. And this morning when J came home, I chucked on my sloppies and we sloped off to the grocery store as supplies were running low. I’m now stocked with stashes of snacks and hoards of healthy veggies!

And I’m definitely feeling better for having had a weekend propped up on four pillows and with more newspapers and episodes of MTV Cribs to watch than you can calculate! Importantly, I didn’t take a PF for 2 days and I’m happy to report that today my PF and FEV1 have both elevated from their lowly depths. I’m also riding out this stage of my awkward Pred reduction with the enforced rest and Yes, distraction is the best cure for dyspnoea and crampiness. And mine has become pretty chronic of late. Also, in this little room I have my workhorse neb, my constant supply oxygen machine (Elliott) and two wonderful big windows to let in lots of fresh air, I’ve dozed a plenty under my duvet, in fact I think I’ve slept more or less anytime, like a cat: Scrabble on the iPhone does this heavy thing to my eyelids. So does watching endless episodes of Barefoot Contessa on the Video/DVD machine I’ve also got in front of me in this little bed.

Yes, this is my favourite room in the house, and it’s where I can be found when I’m home and J isn’t!

Blissful and Medicinal!

….And I’ll  probably hardly budge until I’m due at school on Wednesday….

Six Red Monsters!

….That’s 30mg of Prednisolone to those of you who understand lung  jargon!….

And six 5mg tablets is a good thing as it means-like my side bar has said since yesterday, I am starting to reduce. Rather a large reduction for  me, as I usually go down one 5mg tablet at a time, but I seem to have stuck at this level of yellow zone plateau for long enough to warrant a quicker than usual reduction. My crazy philosophy is that the quicker I get back to my baseline dose, the less chance of my lungs waking up and noticing. Absolutely barmy by any Doctor’s standards but I do try to ‘mind over matter this drug’. So what if I’m still Air Trapping a heck of a lot, this asthma purgatory isn’t going to go away but sitting on a 40mg daily dose of the red monster pills. I’m not burying my head in the sand here either-I’ve been in this situation many times before and I’ve spoken to my Docs this week, and have been given the OK to reduce if I feel I want to try to, plus I can stay on increased oxygen to help with the inevitable SOB I’m no doubt going to be feeling.

So whatever! 24 hours in-I’m still scoring 70% PF and as I’m such a chronic yellow zoner, that’s still very acceptable!

But the cramps and aches and pains have already got me. My knees, calves and fingers feel like I’ve been out in the snow too long, and I’ve got that whiff of a fluey achey feeling this morning. Not a cold coming, but just how a Pred reduction makes me feel. Gatorade and Kettle chips to the rescue!

If I get through the day with some degree of stability in the lung department I’ll be mighty happy-the plan is to try a swim this afternoon, because usually 48 hrs in I have to start toughing things out a bit more so tomorrow might not be as possible.

The first 10 mg drop is always hard-something of a shock to the scaffolding system. Pred is like lung scaffolding for me, and I know I’ll feel weak and wobbly when it comes to trying to breathe with less of it-but hey! my mind is strong and I’m tougher than you think.

So the current plan is to stick at 30mg this week and reduce another 10mg next weekend.

Crunch time (if I’m lucky and don’t pick up anything in the lurgy department), will come at the 20-15-10mg stage. I’d like to think that even though it’s definitely Autumn and Winter is coming, I can still get down to my baseline dose of 10mg. Although this time last year I was stuck at 20mg for a long time. If that happens again, I wont beat myself up-I’ve achieved 10mg for most of the Spring and Summer of this year. The whole idea is that if my bones are going to stand half a chance of not deteriorating any more, I need to be at my lowest possible dose for my lungs to cope. I have no Adrenal issues, I am relieved to say, so there is always the possibility of being off the oral stuff totally. I’m game for it.

We all hate the Pred. It saves lives but it messes you up in so many other ways. So whilst I go through the mental and physical craziness on it…

….I guess I’ll just keep polishing my horns!….

Desert Updates!

….Thought this would be interesting for me to trackback to, at least!….

• Pari Neb:  is totally behaving himself after my pre-vacation panic over his on/off switch’s reliability!
• Swimming: I am keeping it up by doing a daily 40 minute swim at about the same tempo= approx 1 km
• SATS: They’re seeming to be better, but I am dropping them after exercise-However, I definitely feel less SOB
• PFs: I’ve so far more than flirted with the green zone-almost managed a 90% yesterday. Improving!
• Walking: I’m trotting around in my usual slow/stop manner but with more energy and less cramps
• Sleeping: Definitely sleeping well here-the bed is enormous and unreal in it’s supreme comfort!
• Music-ing: I’m itching to play the grand piano in the lobby. Do you think if I whack out a Titanic rendition the Manager will give us another beautiful bottle of wine?!

….See how the desert is so good for me, and this is after just 4 whole days!….

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!….

Perceptions and Pain

….I am not very good at perceiving when I am really getting sick….

Since the Wedding last Saturday, I have been suffering from a bout of severe lung pain, almost entirely on the right side, and through the week it has been becoming gradually more intolerable. By Wednesday I was pretty much in agony-it really hit me on Wednesday evening that I probably shouldn’t be ignoring it any more-although it took me until Friday afternoon to go to the Emergency Care Centre and get it x-rayed in case I had a small pneumothorax developing. I have never forgotten the Doctor who told me I was at risk of them due to the fact that I am tall and skinny as well as with my type of lung condition.

But even then I didn’t entirely give in of my own accord. It was obvious something was up as my results and daily stats (that I show in my RH Sidebar), were basically, in my boots. I had at least whacked up the Pred to try and rescue my ensuing splat, or flare as we like to say here. But I ran my thoughts past Steve, our epic guru and asthma God and he said I needed to be checked out because, and I quote, “it wasn’t usual for asthmatics to feel so much pain“. But there we have it in another nutshell. I am not a usual asthmatic. Who here is!

So it comes to my thoughts about perception. And I do hope Steve will put up a post that explains things his way-I have very poor perception of when my illness is radically taking a turn for the worst. I am not sure why. Is there a stigma, is there an embarrassment factor in this? I am usually the last person who will give in and let me be seen in the ER or A&E. I always think I know best and my numbers, however low they may seem, do not always register in body with my lungs feeling that totally terrible. I didn’t really feel as bad as red zone when I went to school on Friday-but I did by 2pm!

But now that I do know there is or was a reason for my rapid flare from Wednesday evening to Friday, as I’ve been diagnosed with Pleurisy. It is about as painful as having the fires of hell burning in the side of your lungs with a ripping, rasping, sandpapery feel to them, every movement has been hurting like a sore pinch and as for a cough or even a wheeze, no wonder my stats were so low I simply was in too much pain to breathe  much at all, let alone properly. I’m still being treated for a severe asthma attack too, bucket loads of Pred and 2 hourly nebs, but the truck load of antibiotics I am taking for the Pleurisy are sure helping quickly. Praise the Lord indeed!

….I fully intend to be feeling totally better by school on Wednesday. And I am dying to swim again!….

T.W.T.W.W.T.W. So how were the lungs?

….That Was The Wedding Weekend That Was-So how were the lungs?….

In a nutshell, Pretty Good! Probably due to one word, adrenaline. I do tend to thrive on it to get through important events, but usually suffer in the come down from it.

But I have to say, I can’t complain one bit. I did of course take everything in the anti-asthma arsenal with me, and had it all laid out on my bedside table next to me. And used a fair amount of it too!

There you have it-all of the above, plus 25 foot of oxygen tubing trailing behind me around the hotel room and bathroom. And I could practically get to Mum and Dad’s room on the same ultra long cannula!

So how did I cope when the naughty little bellows started a-kickin’ off? Well, I made no secret of allowing myself necessary time out. I made sure I had my oxygen either with me, close to hand or in the car and topped up on it for 15 minutes at a time when I was becoming unbearably puffy, at the same time, double (ventolin + atrovent) or triple (2 ventolins +atrovent) nebbing!

I did have my quota of wonky lung moments-the worst of which was in the car on the way back from the church to the reception. I whacked up the O2 and got in a triple neb during the journey, and managed to clear the congestion and tightness that was building in an ominously uncomfortable way. It felt like I had been inhaling lumps the size of tennis balls right in the middle of my sternum-quite a nasty pain that had me almost doubling up on the walk back to the car after the photo shoot.

I seem to be using my oxygen almost all the time now, a good 10 hour overnight session and lots of out and about sessions during the day. I don’t know how I would have coped this past weekend without the ease and accessibility of my new portable concentrator and the trusty Pari travel neb.

I found the air in the hotel room quite hardgoing and humid too-no aircon-but we had a stand alone fan which J and I ran continuously for the duration of our stay and this really helped cool and move the air around, together with the window wide open.

In some respects the worst of TWTWWTW was the pollen in the countryside-we were both very dosed up on Fexofenadine and the humidity was at times, horrid, but the fan seemed to cure ours.

I am so pleased my lungs held it together-especially because I’d done a swift Pred taper in the few days before and was down to 20 mg.

….So that was how my lungs were in That Was The Weekend Wedding That Was!….

Postscript: The title of this post is somewhat of an homage to the satirical programme That Was The Week That Was, first broadcast during the960s, and absolutely hysterically funny!

Those Fit to Fly Tests!

….In a follow up to this post: Flying High with Oxygen…..

I need to highlight exactly what those of us with lung diseases (that cause de-saturation), have to go through, in order to be able to be insured to fly and indeed, passed fit enough to fly.

This was me inside the Body Plethysmography Box in 2006 (sorry I haven’t got a more recent photo available!)

There are no side effects to having any of these tests done-well, nothing more than a little nick to your ear lobe to test your blood gases, or your wrist if you choose, a bit of mild claustrophobia if you suffer from it, and a bit of breathlessness if they have you walking the corridors and climbing stairs for the 6 minute walk test.

So I am one of these people who 5 years ago found out that on my regular and routine flights to California I was feeling increasingly more unwell. I used to vomit, feel very spaced out, feel very heavy in my chest and breathing, and really quite light headed and faint by the end of 11 hours in the air.

This is because the air pressure in an aircraft is reduced, and therefore the oxygen level is lower during the flight than on the ground. The Fitness to Fly test assesses how much additional oxygen will be required during flight.

The test takes 60 – 90 minutes. I was required to sit with an oximeter on my finger, plus I  had a few drops of  blood taken from my earlobe to provide more detailed information about my blood oxygen levels.

I was given a low level of oxygen via a mask for 20 minutes to simulate the aircraft cabin environment, and then a higher concentration of oxygen to bring my results back to normal.

When I repeated these tests a couple of weeks ago, I desatted to 72% and now know I require a constant flow rate of 4L to bring me within the normal range. Last trip, in April, I did not feel completely well on 3L so suspected I was going to have it increased.

I found out my results immediately and then we went on to the discussion about my (now historical) overnight oxygen trial.

In my case, the tests were performed inside a body plethysmography box-luckily I am not claustrophobic!

This is just mildly off putting, as I found it hard to breathe against the stoppage of the air shutter. This is however necessary to:

• Measure the volume of air in the lungs.
• Diagnose lung disease or assess its severity.
• Determine whether the airways are obstructed and to what extent.

I also now know that my lungs are currently slightly better than I thought, at around 50% LF, although I am requiring more oxygen during the day, and permanent overnight oxygen as well as increased oxygen to fly.

So I now have more accurate data, a better oxygen prescription and more knowledge into my lung disease. These tests are not a cure, just a more accurate diagnosis of what is going on.

….I still need those darn forms filled in and signed by my Doctor though-and now the POC one too!….

(No travel insurer will insure me to travel unless I have the correct documentation that states my physicians think I am well enough to travel. This is always the case with any severe or chronic condition. My Fit to Fly forms fulfil both the Airline’s request and that of our insurance broker)

Horoscopes and Harnesses!

….I don’t often read my horoscope, but….

Incredibly, when I do, it seems to make some degree of sense. Call that a calling or whatever, as a Christian, I shouldn’t exactly be believing in what is very often an amount of guesswork and claptrap,(please don’t now shout at me for that comment!) but why then did my June horoscope in The Sunday Paper say “You need to begin monitoring your health condition better” Nothing but co-incidence, IMAO, but to think, barely a week ago I hardly blew a PF let alone whacked the pulse oximeter on my finger, and now I’m a daily pro keeping records to email my Docs, and knowing exactly how I have to administer my O2 prescription. Funny, eh?

We arrived back from the South coast in time to pick up my package from J’s Mum’s-we’d had it delivered there as we were out of town.

I now have the US leads for E.T. and a smart new backpack style carrybag, which is more like a glorified harness.

See what you think:

Lots of comfort straps, a handle a carry handle and the inside is nicely padded too.

There are many reasons for my using a backpack style bag when out and about.

1. It will hang on the back of my Scootie at school easier
2. I have a bad back!
3. I already lean to one side-(mild scoliosis)
4. I have been warned by my physio not to carry an uneven amount of weight on one shoulder as I’m already crooked and it squashes one lung.
5. Carrying a weight on your back helps open up the lungs and pulls the shoulders back into alignment.
6. It encourages good posture in a lunger-especially as I already hunch and lean forward when I’m struggling to breathe.

I can only think the bag for the Airsep Freestyle unit was designed by an older person who likes to wear a heavy handbag/purse on one shoulder and thinks backpacks are for the younger generation.

And what’s with all these old people pictures of O2 users. There are plenty of us younger generation people who need to use O2.

(That sentence was not meant to offend anybody!)

….But I feel like writing to Airsep and saying, ”hey please use a couple of kids, teens, or 20 somethings in your ads” It’s just that I feel rather left out as I’m not 70+ and grey haired or a COPDer….

(What do you reckon, shall I do it?!)