Archives: Oxygen

Being exhaustedly tired didn’t seem to do much – if anything – for my ability to sleep as I once again lay awake until gone 3am.  Annoyingly, it was the kind of lack of sleep where you are so nicely chilled and relaxed that getting up is pretty out of the question, but somehow you can’t complete the transition from awake to asleep.  At least it was 3am tonight, not 7am like last night.

As promised, apart from waking for Tac at 10, I did manage to sleep myself through till midday, which was a lovely battery-recharger.

Many moons ago, soon after Emily got home from her transplant last year, she offered to pass on to me her smaller, more portable oxygen concentrator, which gave me the freedom to visit other people’s houses without worrying about when my O2 was going to run out – all I had to do was plug Claire in and I’d be sitting pretty for as long as I liked.  Since I’m now blessedly no longer in need of it, Em and I put our heads together and came up with a friend of ours who would benefit from Claire’s friendship and emailed her to see if she wanted her.

Since the initial email about 2 months has passed and I have forgotten no less than 3 times when I’ve seen Em to pass Claire on to her as Sam only lives about 15 minutes from her.  After my final act of stupidity last week when I was in London seeing Em and only about 15 minutes from Sam’s house myself, I decided that I couldn’t beat about the bush any longer or try to wait for or engineer meetings to hand stuff over and just bite the bullet and drive to South London (Sutton) and drop Claire off.

As it happens, there was almost no traffic at all on the roads yesterday, everyone travelling for Easter clearly having done so the day before or that morning.  So while everyone else in the country was playing happy or not-so-happy families, we trundled our way down the M1 and round the M25 through some of the craziest, mosy bizarre but brilliant weather I’ve ever seen.

We would go from bright sunshine to torrential rain through sleet, snow and hail all within the space of a few miles.  There was one amazing moment on the M25 when we were driving along in brilliant sun and ahead of us we could see what looked, totally honestly, like a piece of cloud had broken off and fallen down onto the road.  There was just a sheet of grey mist falling sideways across the carriageway and dumping itself onto the road in front of us.

Surprisingly, there were no crashes and no major hold-ups and the journey took precisely as long as the AA website told me it would, which I had thought pretty generous considering quite how far round the London-loop we were going.

On the way round, K spotted a signpost for Southampton, where my Dad’s family are from and near where his dad and sister still reside.  Once K had pointed it out and mentioned (in jest) that we could go, I got to thinking that I’d not seen any of my Aunt’s family since my op, apart from my eldest cousin who stopped in to the hospital the week after her mum had.  And from South London, it’s really not that far to their house.

So, once we’d dropped Claire safely at Sam’s to start a new life of independence-making (hopefully), we set off down towards the South coast to drop in and surprise my Aunt and her clan.

We eventually arrived (after a slightly longer journey than we anticipated…) around 6ish and everyone was duly surprised, luckily in a pleasant “great to see you” kind of way, not the usual “oh no, not them again” kind of way.

We stopped and stayed for a cuppa (or two) and my Uncle introduced me proudly to Jeeves, his pride-and-joy in the garage.  It’s an old… car that’s really very pretty and cool and as my cousin pointed out, means they can now play gangsters up and down their road properly, as they have the wheels to hang off with their Tommy guns and three-piece-suits with Trilbys.  Being that they live right out in the contryside not far from Winchester, there’s not a whole lot of people to gangster at, but I suppose they could always go rough up some sheep.

After persuading them that we really didn’t intend to impose ourselves on them for dinner and that they didn’t have to make it stretch (which they probably couldn’t have anyway, what with my appetite and three near six-foot teenager boys in the house), we headed off just before 8pm and rolled back up the A34 through Newbury and Oxford to MK, rocking up at home just before 9.30pm.

Having not been to the flicks for over a week, I couldn’t pass up the offer of catching The Cottage with Steve at 9.50, so I pretty much headed straight back out again, leaving K behind cooking fairy cakes as Easter presents for our little nieces and nephews tomorrow.

The Cottage is an absolutely hilarious horror-comedy with the always fantastic Andy Serkis (who made his name by not actually appearing on screen at all as the motion-capture performer for both Gollum in Lord of the Rings and Kong in King Kong – although he also played Lumpy the Cook in the latter) and Reece Shearsmith of League of Gentlemen Fame (not a show I’m a fan of, but he’s great in this).  Jennifer Ellison plays the kidnapee in what starts out as a fairly straight-forward ransom-thriller with deft comic touches, the quickly changes pace mid-way through and turns into the most hilarious stalk-and-slash horror movie I’ve seen in a long time.

As a Brit-flick, this was always destined to be compared to Shaun of the Dead, another comedy-horror which took the world by storm back in 2004, and it’s to its enormous credit that it actually stands up to the comparison.  It’s a very different film, not just in genre of horror, but in the way that while it manages to include pretty much all of the stalk-and-slash horror staples, it never directly references any specific film, whereas Shaun of the Dead was full of nods, quips and homages to the very best in Zombie horror.

There are some brilliantly nasty death scenes in The Cottage, but never have I laughed so hard at so many people’s unfortunate ends.  Makes you feel terrible at the time, but the sheer inventiveness with which they knock off one of the main characters is near-legendary.

It doesn’t pull its punches and it’s a pretty full-on gore fest at times, but if you like horror movies, especially the good, old-fashioned slasher pics with an iconic bad-guy, you’ll get a kick out of this.

I got home from it around midnight in time to catch the end of Devil Wears Prada, which K had settled into on the sofa – a slightly difference flick to my night’s other watching.  By the end, my eyes were closing and I dragged myself off to bed, where I get through a few pages of my book before conking out.

Without doubt this has been one of my best days post-transplant.  When I woke up, it felt like a real chore to be getting into the car and schlepping all the way down to Town and back, but when I took a second to realise how cool it was that I could actually even consider jumping in the car and heading South, it cheered me up.  Coupled with being able to exploit a random whim and scoot off to see a family with whom I share so many of my happiest memories and still having energy enough to go and catch a great film afterwards, I can’t imagine a better way of showing the fantastic difference a transplant makes to anyone’s life.

Back in the olden days of years ago, I distinctly remember plaguing my parents with moans about being made to walk far too far and the whole lark giving me sore feet.  Today, after over an hour wandering the shopping centre in Uxbridge (more on which later), I turned to Mum with an enormous smile on my face to declare, “My feet hurt.”

I’ve not done enough walking to make my feet hurt for pretty much as long as I remember.  There must be a time, three or four years ago, when I’ve been on shopping sprees with K in the days of our simple friendship, which ended with me having sore feet, but it really must be that long ago.

In the four-hour wait between tests and seeing the doc at clinic today, Mum and I decided to head off and explore Uxbridge, which is only a few miles down the road from Harefield. We found our way – surprisingly easily – to the main shopping centre and spent a good two hours browsing around and taking things in.  Unfortunately for my bank account, “taking things in” also included “putting things in bags” and since most shops are reluctant to let you bag things up without paying, my wallet came away a fair bit lighter.  That said, my wardrobe is now a fair bit fatter.  Or will be when I make room amongst K’s stuff for my new additions.

Clinic went really well, with my lung function up, weight up, X-ray clearing up nicely, all other obs stable and doing well.  My CRP was up ever-so-slightly, but we think that may be due to the semi-cold I have been suffering this week; it never fully developed but I’ve had the snuffles on and off since Monday.  The doc gave me 2 weeks of oral Zithro to ward off any nasties that may be lurking, but I think it’s unlikely that anything’s going to come of it – it’s more a protection measure than anything else.

The last few days have been such a joy – doing all sorts of things that I haven’t done for ages and just starting to feel normal again.  Today we finally managed to catch up on Christmas with K’s brother, which has been delayed and delayed after my stays in hospital and a combination of them and us not being well enough for us to meet up (bearing in mind I still have to do my best to avoid anyone with colds or bugs).

It was great to see not only them, but their new house too – a 3-storey affair which I’ve now got the lungs and the legs to enjoy a proper tour of.  Not only that, but discovered my fitness levels are also now up to the Nintendo Wii.  Dangerously addictive, that machine.

I think the most amazing thing about the last few days is being able to do things without thinking.  There’s no moment’s pause between the impulse, need or desire to do things and actually getting up to do them.  For so long I’ve been used to working out all the ramifications of what I’m about to do and how much it’ll tire me out, how much O2 I’ll need to take with me, what I need to save my energy for later in the day and everything else.  Now, if I want to do it all I have to think about is whether I have time to. (And possibly whether I can afford to….).

I honestly can’t believe how much my life has totally turned around and the fact that this is only the beginning fills me with the kind of excitement I haven’t known since I was a child.  It feels like the whole world is opening up to me and all I’ve got to do is reach out and grab it.

It feels like it’s been an age, when in fact it’s only a little shy of 6 weeks since I was last sat here at my desk, my Mac, in my study writing up a summary of my day on the waiting list.  What a lot has changed in those six weeks – what a remarkable six weeks it’s been.

I keep having to catch myself from protesting at how long it’s taken me to get back here, or to stop myself from trying to do things that I’m not supposed to do yet because to me it feels like months that I’ve been away and out of the loop.  It’s been fantastic to receive all of your messages, cards and comments, but they are about the only things I’ve been collecting from my “life”.  I now have 6 weeks of unopened mail to go through (except Christmas cards, which K opened – funny how she avoided the bills…) and an inbox which has just downloaded the 420 mails I’ve received since my transplant and that’s after K had a bit of a clearout not too long ago.

It’s so funny to see myself moving freely, doing things around the house (I’ve been cleaning this evening!) and generally getting on with things in a totally normal and nonchalant manner.  Already things are becoming second nature to me and I don’t think twice about them until I’ve done them and I sit with time to reflect,  or until someone points out just what I’ve done.

I’ve definitely tired myself out today, with a trip to Harefield this morning for bloods, a good, brisk 10 minute walk along the lakeshore this afternoon and then an hour’s manic unpacking/cleaning when I got home tonight, but it feels wonderful to have heavy eyelids and not heavy lungs.

I must add, for those of you thinking anything was amiss – the cleaning I was doing was only because we swapped our bins over and I had to clean off the old one to be used as our recycling bin as the new one is more hygienic for kitchen waste.  K has actually, with the help of our great friend Dazz, completely overhauled the flat and scrubbed it top-to-bottom without missing a single nook or cranny anywhere at all.  All traces of my former life have been whisked out – no Neve, no concentrator, no oxygen cylinders – and the place is positively sparkling.  I can’t explain properly just how hard they’ve worked to make sure it’s ready and bug-free for me to come back to.

The slight downer on the day today (and it is only very slight) is that my Tac level has gone up to 20 again (they’re aiming for 10, remember), and that’s only after taking 3mg, so goodness knows what my body’s up to.  I’ll be off for more bloods in the morning and should get chance to chat to my Tx team about what’s going on and also about the scar pain.  The trouble with going to hospital on a Sunday is that it’s only the weekend cover who are on and you can’t guarantee that they’ll be the Tx team (which they weren’t today) so it’s hard to get things sorted.  Tomorrow should be a different pot of pike, though, and I’m sure we’ll get somewhere with it all.

My walk this afternoon was great – again an amazing experience to get myself out of breath and feel it was my legs that were going to give up before my chest.  In fact, after doing the physio’s exercises yesterday, I couldn’t half feel it in my calves today during my walk.  Note to self: don’t forget to stretch!

New Year’s eve tomorrow and I’m looking forward to seeing in 2008 with a sense of optimism and possibility rather than worrying about what’s just around the corner for me.  Hope you and yours all have a great one and if I don’t blog tomorrow, catch you next year!

I haven’t been this excited about random developments for ages. I don’t think I’ve actually EVER been this excited about developments relating to fitness-type stuff. But I’ve just climbed off the shiny new exercise bike sat not 3 feet from this screen and I feel fantastic – this biking lark seems like it might just be the key to breaking the back of this fitness-malarky.

It’s such a bizarre feeling to sit on the bike and be doing real, proper exercise but not to feel completely breathless and deflated by the whole thing – to find a type of fitness which is enjoyable and beneficial without being a real battle of will power to push through the pain/breathlessness barrier.

It appears that the slower slope of desaturisation that I was talking about yesterday is much more significant than I’d first thought and that I can actually go a lot longer on the bike than I’d hoped without gasping for air or feeling like I’m going to keel off it. Rather, I can actually get to a stage where I can really feel the muscles in my legs being worked hard and doing some stretching and improving of their own.

It’s indescribable to feel that I’ve found something which can make the “working” parts of my body feel included in the day-to-day running of life – like their being paid at least a cursory bit of attention rather than being glossed over in the fight to keep the lungs ticking over.

I keep having all sorts of qualifiers about the relation of current treatment/steroids etc to the improvement in my chest and exercise tolerance and everything else swirling around my head at the moment, but right now I feel so good, so happy, that I don’t want to sit here and qualify things.

It’s not often these days that I get a chance to just sit and be excited about something going well. And I know that “not-so-good” may be just around the corner – as it is for all of us – so I’m blowed if I’m going to sit here and not let myself enjoy this feeling for tonight.

I’ve found something I can do physically that doesn’t make me 2nd best to a 3-year-old child and much as you may laugh, that’s a really, really big thing for me. Tonight, even if it’s “for one night only”, I’m enjoying it.

Big smiles and hugs to all!

Up to Oxford today for my mid-IV once-over, during which all signs were pointing to “pretty good”.  “Good” is obviously a relative term, but compared to last week, where I was perched on the verge of a bit of a down-turn, things are doing pretty well.

Lung function is up to 0.75/1.5 from 0.7/1.2, which is a goodly leap (18%/30% from 17%/24%) in the space of a week, my sats are holding steady around the 90% mark on 2l O2 per minute and my exercise tolerance is improving.

Yesterday we took delivery of a brand new exercise bike from the lovely Fitness for Hire, a company who loan out exercise equipment so you can see whether or not you’re likely to get into the habit of using it without throwing away a whole heap of dough on something that’s just going to sit and gather dust.  We’ve loaned it for 4 weeks for starters and if it doesn’t get used, it’ll just go back, no hassle.

The theory is, according to the Physios-Who-Know, that working on a bike is easier on the chest/lungs than step-ups with Goliath as the tendency is not to desaturate so quickly.  I don’t know why that is, or exactly how the process works, but what it basically means is that by using the bike I will be able to do more exercise without getting so out of breath.  This, in turn, should mean that I can make my muscles do more work, rather than my lungs stopping me before my muscles really get a work out, and the muscular improvment will serve to improve the flow and use of oxygen around the body, meaning that I require less oxygen to do everyday tasks, which means I get less breathless while doing them.

Theory is all well and good, but we know how my body likes to throw googlies (or curveballs, if you’re more comfortable with the American vernacular), so having the option to bail out on the purchase of a hefty piece of equipment is a good option for right now.

I have to say, having had a wee spin on a bike at Oxford today, it certainly looks promising as a less intense form of exercise.  Obviously, there are different levels of resistance and speed settings and a whole host of other options, but the great thing about it is that the very basic starting point is easily managable, giving a lot more leeway in terms of turning things up or down as my chest may dictate from day-to-day.  The trouble with step-ups is that they are very set-in-stone – it’s a set distance, with a set weight (my body-weight), over a set time.  The bike, on the other hand, has myriad ways of making things easier or harder as my body goes through it’s yo-yo routine.

Once again – and as usual – we’ll wait and see what comes of it.  I don’t want to get too over-excited at something that’s just going to fall by the wayside again, but the promise is there for something with potential.

Sadly no progress on the script today, because the trip to Oxford has pretty much sucked the energy out of me, so it’s probably a night in front of the TV tonight, maybe catching a flick or something.  But it’s been a positive day, so I’m not going to moan about a little bit of tiredness at the end of it.

Today I am tired. Today made no sense. I think it’s because I’m tired. But really, it made no sense.

I woke up this morning at 6.30am – that’s really early. Luckily, it’s not dark, because the clocks have gone back. So I woke up in the light. But it was still really early. I didn’t get much sleep last night. It was past midnight when the light went out and I then spent the next hour or so getting to sleep, where I then spent the next four or five hours dozing and waking every hour or so to readjust my position because either a) Neve was coming off my face, b) my shoulder was hurting because of the port needle or c) I was lying too much over on my chest and giving myself breathing trouble.

I woke up grouchy. I don’t think many people wake up at 6.30am happy, but when you’ve slept badly two nights in a row, coupled with not sleeping long enough two nights in a row, coupled with being on really high doses of the most drowsy-making drugs in the world (with the notable exception, perhaps of sleeping pills, which I suppose really ought to win the most drowsy-making award and if they don’t then they should really have a different name, or get their makers sued under trading standards) then it’s pretty hard to wake up at 6.30 in the morning without being grouchy.

I did my drugs. This involves (at the moment) doing about 10-15 minutes worth of injecting solutions from a syringe down the tube then connecting up a big bubble-thing which works like a drip, but in a different way. (That doesn’t make sense, does it? If it works like a drip, then it must be a drip; if it works a different way then it’s not like a drip, is it? Told you today didn’t make sense.) That takes an hour to go through, then it’s a couple of quick syringe squirts and hey presto, all done.

So the whole shebang took me up to about 8am. Every Monday morning, I have a delivery of portable oxygen cylinders to give me enough to move around for the week when I want to go out. Invariably, the delivery driver arrives at 9am. Looking at the clock, tired and grouchy, I decided I didn’t want to go back to bed for an hour just to get woken up as I settle into a nice sleep to have to get up and answer the door. So I try to occupy myself to keep myself awake until 9.

Dutifully, the lovely Brummy gent turns up and drops of my new cylinders and whisks away my old ones. Following which I retire to bed for a catch-up nap, aware that I have to be up no later than 11.30 to get ready to go to the hospital for a physio appointment and drug-level check.

I clamber into bed and strap on my Neve-mask, only to discover that the condensation in the mask has done something – I don’t know what and boy, do I wish I did – which makes something on the mask make a really loud, annoying clunking sound every. Single. Time. I. Breathe. In.

Annoying? Slightly. Grumpy-making? Exceedingly.

After, oh I don’t know…. 5 minutes of trying, I give up and clamber out of bed, thoroughly bad-mooded for the day. I wash the mask up, in an effort to have cleared whatever the problem is for tonight, and sit myself quietly on the sofa to start reading Ian McEwan’s Atonement, which I’ve finally wrestled from K and am keen to get through before having the whole story spoiled for me by people who’ve seen the movie.

Bizarrely, all the time I’m sitting reading, I’m perfectly awake and alert, despite having had not enough sleep and being beside-myself with tiredness when I’d gone back to bed. As soon as I got up from my perch, however – to make tea, to fetch things, to do anything at all, really – I was exhausted. My chest was heaving, my legs felt like lead and my eyes couldn’t have been heavier if they’d entered a Weight Watchers programme and won the prize for world’s worst dieter by gaining their own body-weight three times over.

I was not a happy bunny.

By the time K got up I was happily reading away, but ready for some morning physio, which is never fun at the best of times but when you’re tired it becomes a peculiar kind of torture – long, drawn out, unpleasant, occasionally painful, sometimes exhausting, often breathless and very, very hot (this morning, anyway). Needless to say I ended in a mildly worse mood than I start – impressive, huh?

I did manage to lever myself into a bath and chill out for a fraction of an hour before throwing some clothes on and getting ready to head off to Oxford, only to be phoned and told that the physio I was supposed to be seeing had broken her tooth and wouldn’t be able to see me today, so could I come Wednesday instead? Of course, I said. Why not?

But here’s the weird thing: having not gone to Oxford, which I took to be a blessing on account of my overwhelming tiredness anyhow, my body then decided that actually, it was feeling pretty happy and perky. After 5 hours semi-sleep, a 6.30am start, a morning of trial after mood-blackening trial, I found myself suddenly feeling an urge to sit at my keyboard and write – to carry on with my screenplay with which I have been having so many recent tussles. (For “tussles”, read: “hit a structural bump which sapped all creativity and forward-momentum and left a big black mark against my 5-page-per-day copy book for the last month or so”)

So all afternoon I’ve been beavering away on my screenplay without so much as a care in the world, pausing only for the occasional break for food, water or the odd episode of Lost (just keeps getting better).

I have no idea what my brain is doing with itself, nor what my body is up to at the moment. My chest feels like it’s improving, but my sleep certainly isn’t. My mind is lost in a mire of lethargy which saps any mental strength and positivity right out of it, whilst still apparently providing me with enough drip-fed muse to be able to carry on doing the kind of creative writing which is usually the first thing to desert me when I’m feeling rubbish.

Literally nothing about this day is making any sense to me right now. But I guess that’s just because I’m tired. Can you tell?

I’m in the mood to write a really witty, random, stream-of-consciousness blog tonight, but I can’t because a) I’m knackered and b) I’m knackered.  Also, I’m pretty knackered.

(Incidentally, when I say “in the mood” what I really mean is “tired” since all of my best stream-of-consciousness is always written when I’m tired.  But not this tired.)

(Incidentally, it’s just occurred to me that I can remember the very lesson at school at which I learnt how to spell conscious and consciousness.  Odd, isn’t it?  That and “immediately”, although they were different lessons.  In fact, the teacher who taught us “immediately” taught it to us with a rhyme and to this day I can’t type “immediately” without the tune going through my head.  Weird, huh?)

Anyway, knackeredness (yay, new word!) caused largely by Oxford trip today, coupled with start of IVs, which I really should have predicted but thought I could get away with.  My wonderful physio set me straight, though, and made me see the better of kicking off today as opposed to Monday as was my wont.

For all you stat-monkeys out there, today provided a L-F of 0.7/1.2, Sats of 90% and a weigh-in at 54.4kg.  All of which is really not that bad, really.  But with increasing morning headaches, poor sleep and a newly-discovered need to turn Neve up just a trifle over-night, it made sense to kick off some IVs and head-off whatever may be on its way before it decides to settle in for the winter.

First dose this afternoon went fine and dandy, steroids started with them, so expecting huge appetite to kick in sometime in the next few days, too.

Can’t think of anything more to say.  Immediately — it’s such a nice song.

Like all good sequels, Headaches have come back with a vengeance, making sure to be bigger and better than before.

Having thought myself a chronic hypochondriac before the weekend, three straight mornings of horrible, horrible headaches have convinced me that it’s not just a little something to make me paranoid, but that there’s definitely something up.

Unfortunately, I have no idea what it is.

The headaches would appear to be CO2 related (as with last time), which would suggest that Neve isn’t doing enough work, or isn’t working efficiently enough to clear it off while I sleep. However, the headaches are also coinciding with an uncomfortable amount of neck and back pain, too, which may mean that it’s not anything to do with my O2/CO2/Neve settings at all.

I spoke to my physio at Oxford today, who suggested adjusting my NIV settings for the night and seeing if it made a difference (it didn’t last night, but she recommended trying it again tonight) and then said she’d arrange for the docs to see me tomorrow. I was supposed to be joining her for an exercise sesh tomorrow, but that feels a little way off at the moment, so we figured we should use the appointment to get myself checked over by the team rather than wait for my clinic appointment on Thursday – if I am coming down with something, we need to make sure we nip it in the bud ASAP.

It’s a little demoralising looking at the prospect of another 2 weeks of IV’s less than 3 weeks after I finished the last course, but I’ve got so little room to play with now that it’s no longer an option to just “wait and see how things pan out”.

The worst part of it at the moment, really, is not knowing what they are or what’s causing them. If I was sure of their origin, it’d be easier to gear myself up for a fight to get rid of them, but until I know where they come from, it’s just a case of sticking them out. They are usually gone by the early afternoon and then I don’t feel too bad.

Whatever is causing them, it’s a pretty safe bet that it’s all been kicked off by the seeds of an infection knocking around down there, so antibiotics would appear inevitable.  We can only hope that something obvious presents itself in the next 24 hours or that once the antibiotics take care of the bugs, everything settles back down to normal.  Fingers crossed, anyway.

Just as a keep-you-updated, keep-myself-in-check type thing, I figured I’d start charting my daily progress (if it’s going to be daily…).

Today’s “workout” was really hard, much harder than it has been previously.  Don’t know if it was time of day (late morning) or not as good a physio session before hand or what, but it was a lot more of a struggle.

Still, I did 8 minutes of step-ups on 4l/min of O2, in reps of 1 minute steps with 30 secs rest in between.  I completed 4 reps (4 mins stepping with 3 30sec breaks) and had to make the 4th break 1 min rather than 30 secs, followed by another 4 reps with regular breaks.

I had Rocky on in the background, but it didn’t help.

For future reference: Step-ups: 1 rep (or 1 min) = 1 min steps + 30 secs rest.

So I’m now mid-way through my course of IV’s (provided I’m only on for 2 weeks, which is always a big “if”) and I was back up to Oxford today for a check on how things are going, some mid-point bloods and an exercise session.

As I mentioned in my post about my annual review here, the docs think that if I can get myself doing some exercise and building some of the muscle mass I’ve lost over the last few months, I’ll stand a much better chance of keeping my lungs ticking over for a while longer than they may first have predicted.

Apart from the exercise (which I’ll come to in a bit), the most amazing thing to come out of today were my oxygen saturation levels – the amount of O2 that gets transferred into the blood stream to be carried around the oxygen.  I know I’ve been feeling brighter and fitter over the last few days, but nothing prepared me for the physio clipping the monitor to my finger this afternoon.

Normal sats levels run between 99-100% and back when I was off O2 and doing well a couple of years ago – and for a good while before then – I used to run fairly steadily about 96-97%.  Recently, even with my constant flow of 2 litres of oxygen per minute being shoved up my nose, I’ve usually topped out at 89%.  That’s pretty low.  OK , very low.

Imagine my surprise, then (I seem to say that a lot on here, so I guess all you guys who stay with me and continue to read this must have a pretty good imagination by now) when I perched on the bed on the ward today and saw my sats hit 94% at rest for the first time in well over 4 months.

I was totally gobsmacked.  I have to admit it was totally beyond my wildest dreams that I could or would recover the function that I’d lost, having convinced myself I’d waved  it goodbye for this set of billows.  Even my physio seemed a little startled by it, but she said she didn’t see why we couldn’t maintain or even improve them with the right exercise programme.

Obviously, it’s not exactly Olympic standard – I don’t even need any gym equipment, unless you count the beautiful, girly-pink dumbells they had me using for my bicep curls – but it’s something which gets my heart-rate going and will hopefully strengthen some of my core muscle groups and increase my general exercise tolerance.

The programme consists of a “cardio” set (in quotation marks as it’s not exactly pushing my maximum heart-rate) to build endurance and “weights” set (in quotation marks because all but one of the exercises actually uses body weight and nothing more) to strengthen my arms and legs, the areas which take the biggest hit during any period of inactivity.

The endurance set is a very simple 5-6 minutes of step-ups onto a low stair, broken up into 1 minute reps with 30 seconds recovery in between.  The aim is to increase the time by 30 seconds every couple of days until I reach a comfortable but taxing plateau, repeating the set every day.

The strengthening set consists of several different extension exercises, including leg-lifts, quad stretches, hip movement and arm/shoulder lifts. The idea is to do 3 sets of 8-10 reps of each of the exercises three times a week – so Monday, Wednesday and Friday, I should think.

I’m actually really psyched about being presented with something that I can do to help myself.  For so long now I’ve felt like a passenger on this ride.  I know that doing nebs and physio everyday is a big part of fighting off the avalanche of attackers busying themselves in my chest, but this finally feels like I have a chance to do something to take the bull by the horns and drag myself back up the slope.  (And on the way up I’ll find some more weird metaphors to mix, too).

It remains to be seen just how good I am at staying motivated when things get tough and I’m tired, aching and stressed out, but everything has to start somewhere, so it might as well be on a high.  If I can just help to turn this into a habit, then maybe it’ll become as second nature to me as nebs and physio are at the moment.

Needless to say, I’ll be doing my best to use the blog as an exercise diary, so I can be applauded or chided as necessary to spur me on.

(PS – for the record, my lung function mid-IV’s is at 0.8/1.5 which is actually better than it was at the END of my previous set of IV’s)