Written by: Admin

I don’t have much to ramble on about this morning, I’m tired and I don’t think my brain is working properly.

I got another call from Harefield last night, around 6pm (the Tx-coordinator actually interrupted the end of Neighbours, the cheek!).  It took me a while to grasp what she was calling about as I’d phoned her earlier and thought she was returning my call, so I was merrily chattering away to her about this that and the other before she manage to slip into the conversation that she wanted me to go down.

It was a very different experience this time, although I can’t quite put my finger on why.  Feeling completely serene (at least for my part), we drove the back roads so as to avoid the rush-hour motorway traffic and got the the ward just before 8pm, where I slowly went through the battery of tests they perform to check your suitability.

For the first time on any of my calls, I saw one of the surgical team, a really nice German/Austrian doc who talked through everything with us in immense amounts of detail which managed to be both petrifying and completely reassuring.  Not quite sure how that works.

The combination of it being early evening rather than late night and the collection of tests and assessments being strung out over a longer period of time all seemed to help the time pass much quicker than on previous calls.

By 11pm I was showered, shaved and scrubbed in my gown, lying in the bed ready to go, waiting on word from the team.  Almost to the second around 11.15pm I started to feel the nerves kick in and then they somewhat ran away with me.   It’s a strange kind of fear that I felt, centred largely on not knowing what I was going to wake up to.

Strangely, I don’t have any fear of dying on the table, or post-op, nor do I particularly fear any of the rest of the process, but what bothers me is not knowing how it’s going to feel and what I’m going to see when I come round the other side.  Everyone reacts totally differently to the op, so it’s impossible to judge by anyone else’s experience how it’s going to be, which in turn means there’s nothing I can do to prepare.

As nervous as I was, though, I was confident in myself and my decision to go ahead with things, and still excited at the prospect of my new lease of life.

Unfortunately, the coordinator came in just after midnight and let us know it was a no-go.  They had apparently all had very long discussions about the suitability of the lungs, but in the end they’d had to err on the side of caution and decided it was just to dangerous to transplant them in their current state.  It was odd, though, as the coordinator seemed almost as gutted as we were – I think everyone there was convinced that this was our time.

I felt completely gutted, in a very literal, physical sense – it felt like I’d been hollowed out in my stomach and left gaping.  The three previous false alarms had been disappointing, but have never caused such a swelling of negative emotion in me.  The journey home was a long, tough one last night.

Of course much of an adverse reaction to things like last night comes through pure tiredness – lack of sleep does all sorts of odd things to your emotions and thought processes.  I know that things have to be 100% right for me to stand a decent chance of coming through things, so I know the docs are doing their best by me.  I know also that they are thinking of me and will get me up whenever they can.

I still feel tired and flat this morning, but I think it just needs 24 hours of bed rest and I’ll be back on all-cylinders again.  Apologies for typos in this, spell-checking is lower on my priority list than sitting doing nothing at the moment.

Tonight I am a tired boy, but it’s OK to be tired because all of my energy has been expended on being wonderful and making sure my beautiful, doting, life-enhancing and gorgeous other half enjoyed the most fabulous, spoil-some birthday in the history of ever.

I even got up 30 minutes early this morning – that’s a whole half of an hour, that is.

Imagine, rising from bed in tip-toe quiet fashion so as to leave the birthday girl to her beauty sleep, nipping out to the Tesco on the corner to pick up some nice, fresh croissant and fruit juice, sneaking back in and setting out all the breakfast and presents and celebrations to look lovely for when she wakes.  And all before my morning IV’s, too.

Of course, it doesn’t always work as seamlessly as planned.  Tip-toeing out of bed is all well and good, but it’s hard to muffle the enormous, alarming “BUZZZZZZZZZZ” of the oxygen concentrator as it kicks to a start in the morning.  I’ve heard teenagers make less noise when parents have tried to rouse them from their slumber during school holidays.

Still, the advantage of the concentrator in the bedroom is that while the alarm may be startling, once it’s on and running the mid-level hum it generates masks out most of the noises created by banging around preparing breakfast spreads and makes sneaking out of the house a whole load easier.

Of course the easiest way to win someone’s affection on a birthday is to buy them presents, so this was something I took care of some time ago and in copious quantities.  I say some time ago, but being a boy what I mean is ordering them on the ‘net last week.  I don’t want to give you some illusion of forward-planning anywhere akin to the levels K works at, where she has already started assembling gifts for Christmas and people’s New Year birthdays.  Forward planning in my world consists of remembering that there’s a day you need to remember at some point this week.  This month if you’re lucky.

Still, said assembly of presents appears to have been appreciated and it was brilliant to be able not only to entertain my Mum and Dad for a mid-afternoon visit (yet more presents – including ice creams for everyone: they can come again!) but also to make the self-powered trip over to K’s parents’ for a little birthday tea party with most of her nieces and nephews.

As delighted as I have been over the last week to be enjoying something of a return to previous heights, there’s nothing that quite reinforces the value of having at least some state of health than being able to do things without having to second-guess yourself or your body.

A couple of weeks ago I wouldn’t have even deigned to consider seeing both sets of parents in one day, let alone driving us all the way to K’s ‘rents.  To be able to do it all today and to make the day so special for her is a one-in-a-million feeling and it really rams home the importance of making the most of the good days when they come along.

But enough of me – today has all been about K and making her the happiest girl she can be.  I’m fairly confident we’ve managed to achieve it between me, our families and our ever-generous and wonderful friends.

K really is the other half of me – she’s the light to my dark and the sweet to my sour, but I know that I’m just as much to her.  Everything we share we share together (which is meant in a much less, “well, duh,” way than it came out…) and everything we go through we go through together.  Neither of us will ever know the physical struggle the other faces, or feel each other’s pain, but we will always know that wherever we go and whatever we do, we have someone with us no matter what.

Happy birthday, gorgeous, don’t ever stop those happy feet.

I’m off to a flying start.  Well, I suppose it’s more of a stepping start, really, but isn’t there an old Chinese saying, “Every great journey begins with a single step?” and I did, like, at least 30 and a half steps today, so I must be really well started on my great journey, even if I do have to go back and start again because I forgot my GPS and SatNav.

I woke up this morning with both my thighs telling me in great detail how they’d been brought rather rudely out of retirement yesterday without any prior warning.  I suggested back to them that they might want to get used to it because there was a lot more where that came from and oddly enough they just laughed at me.  Even my legs don’t have any faith in me.

I didn’t let it deter me, though.  I resolutely soldiered on with my day – I did my morning IV’s, I ate my breakfast, I sat on the sofa and read a little and I sat at the computer and surfed a little.  Extremely strenuous, clearly.  I also slipped back to bed to read for a bit and then do some physio and then I had some lunch.  They were still moaning, mind.

In fact, I think my quads had only just stopped giggling and been lulled into a nicely false sense of security when I took the bull by the horns (yep, the same one as yesterday) and marched to the bedroom to pull out my little yellow step from under the bed.

I think I may have to work on the phrasing around my exercise equipment, or come up with a cunning euphemism for it because, let’s face it, “little yellow step” is a bit pathetic isn’t it?  Maybe I’ll Christen it Goliath.

So I dragged Goliath from under the bed and I set myself up in the door frame to the living room – facing a bemused K sat at her desk “working” while trying to keep a straight face, clearly – and set off into my routine of step-ups.

10 and a bit minutes later I’d completed my prescribed 6 minutes, with 30 second breaks between rounds, and was feeling it, too, but happily hadn’t keeled over or gone dizzy.  I quickly knocked back a glass of milk (fluid replacement AND calorie booster rolled into one, easy, cow-born package) and hoped that foot and mouth isn’t a problem in pasteurized produce.

Goliath was kicked (sorry, hauled) to one side to wait for his return tomorrow and I sat, slightly sweaty, on the sofa with a smug look on my face with K muttering approval from behind her lap-top in the vaguely-guilty-sounding voice of someone who knows they ought to be doing something similar, too.   (Exercise-wise, that is, not sitting smugly on the sofa.)

Hurrah! then, one day down and I can feel the habit forming already.  Well, kind of.  OK, maybe it’s not the habit I feel so much as a vaguely uncomfortable stretching of the quads, but I still did it – and did it unprompted, too.

I’m actually now so scared of people with large sticks (see comments on previous post) that I think I’ve got motivation enough to last me till winter.

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)

It’s been a gorgeous few days here in the haven of middle England which I call my home – sunny, hot, beautiful skies and all the other things that come with summer, but no wasps, bees or semi-naked men parading their non-tans.  No, wait, that last bit’s not entirely true…

Still, I’ve been feeling great and much perkier than I have for a long time.  The steroids are clearly doing the trick and have certainly ramped up my appetite, which can only be a good thing.  The IV’s are having an impact, too, I’m sure, although not as marked, largely due to the fact that I didn’t wait for a full-blown, raging infection to get started on them this time and they’re doing brilliantly at damping down what is already lurking in my lungs, as opposed to being deployed as a reaction-force.

Yesterday I had the pleasure of being well enough to take myself over to Mum and Dad’s to have lunch with my bro before he shot off on holiday to Bulgaria for a couple of weeks.  Clearly travel with the Army isn’t enough for him, so he’s off to see some of the Eastern European summer before he shoots off on more international travel masquerading as “training exercises”.

It was really nice to be able to drive myself to the other side of town, hang out for a couple of hours and drive myself home without feeling more exhausted than someone who’s really exhausted from doing something really exhausting all day.  Nice metaphor, huh?

I’ve been trying to actually get some work done while I’ve been feeling good, too, but somehow I seem to have achieved nothing in that area.  I think I’ve been enjoying having a clear head and chest so much I’ve either been out and about “doing” things or been surfing the net catching up on all the mildly brain-working sites I like to browse but often don’t have the brain-energy to absorb them.

I think tomorrow I might ban myself from the internet and do a bit of project-focusing for a while.  Although having said that, I know I’ve got a physio appointment in Oxford to go over my exercise regieme in the afternoon, so I’ll probably convince myself that I should be allowed to relax and surf the net in the morning because the afternoon will be hard work.

I’ve got to admit, though, it’s really nice to be in a position where I’m chiding myself for not working enough, rather than sitting feeling crappy wishing I could get up out of bed or off the sofa to do some of the things I want to do.  I just need to use that feeling to inspire me into actually getting something done…

You know, living from day to day gives a weird perspective on life. I’ve said it before and doubtless I’ll have plenty of opportunity to say it again in the future, but this bumpy road called life certainly throws up a few of those Yank-loved curveballs.

Today, I’ve done hardly anything more than I have done for the last three weeks – I took K to work (possible on a good day, not an exceptional event), I worked on the computer (and have just remembered the one thing I had to do that I forgot to – hooray for me), I had a cup of tea with my Mum (she was having withdrawal symptoms, so had to swing by on her way off for the weekend) and went for a bit of a drive in the sunshine when I picked K up from work, which is about the only difference to my days of the last month or so.

But I did all of this while feeling absolutely brilliant. My chest felt open and clearer than it has in ages, I only stopped to grab my breath a couple of times in the whole day. At no point did I get overwhelmed by tiredness and I didn’t have to have a snooze after my afternoon dose of drugs. It would not be an over-statement to say that today I’ve felt amazing.

It’s all relative, I know, and compared to “normal” people, or even to how I was six months ago, it’s probably not much cop – I’m certainly not bounding up staircases or thinking about giving my oxygen the heave-ho – but to spend a day without the burden and weight of lugging around a stroppy chest and cloudy head has been truly indescribable.

(There’s an irony here about an entire blog entry trying to describe something which I can only describe as indescribable. Maybe there’s a hint at how I can cut down my word counts, too…)

I’m also aware that this feeling may not last for long. By tomorrow, the updraft could have floated away on the breeze and I’ll be gliding gracefully back down to sofa-dom, but interestingly I think it’s made me appreciate and enjoy today all the more. I have so many truly rubbish days these days that to have even a sniff of a good one is beyond compare.

If it goes a little way to making this journey a little smoother, to making me a little happier, to making these blowers last a little longer, then I can plough through the rough and enjoy the hell out of the smooth.

Tonight, aided by Happy Feet (go rent it now, it’s brilliant) and the unmistakable rhythm of life, my heart and my head are vibrating with the energy of the world and an old African proverb has just sprung into my head:

“If you can walk, you can dance
If you can talk, you can sing.”

Let the sun shine, let the music play, let the world spin on and don’t let it stop. In the words of a much wiser lady than I, “This is my life and I choose to love it”.

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.

You know that noise you make when a sigh turns into something slightly more expressive, your lips vibrate and it comes out a little like a horse sneezing when you feed it?  I just did that and got spit on my keyboard.  That’s pretty much the day I’ve had today.

Some days you wake up and you just know it was a bad idea to even think about having a day today.  Much better to just curl in a ball on the bed and forget about life for the next 24 hours until it’s the next day on the calendar and you can expansively cross it off with an enormous flourish.  That was my day today.

Some days, no matter how little you do, how hard you try, how many physio sessions and nebulisers you do, how much resting and relaxing you do, your chest still won’t listen and insists on reacting as if you’ve just come running full pelt down the Mall at a sprint after the other 26.1 miles of the streets of London at a similar pace.  That’s been my day today.

Luckily, the anger has subsided, replaced this morning by a heavily-weighted black cloud which hung around like flood waters in Gloucestershire and only shimmered to a dissipated mist in mid-afternoon when my big bro descended on the flat for coffee and a catch up.

Of course, it’s all relative, these mood swings, as it was partially my brother’s return to town that had brought on the down-turn in the first place.  Before you get the wrong idea, I love my brother very much and I love having him around.  It’s more the reminder of how far downhill I’ve come that bothers me.

It used to be that when my bro swung into town it was cause for a family night out – a nice restaurant, everyone else getting drunk, me as designated driver, a chance to catch up on gossip, share stories and take the mickey out of Mum for not making any sense.

But this time all the fun will be had without me, the stories shared around a 3-seater table instead of 4.  And it’s not that I begrudge them that, nor that I would want them to come over to mine and have a take-away or do something at Mum and Dad’s, because whatever it is, I know I’m not up to it.  That’s what really pulls.

Tonight the anger and frustration has ebbed away into a dull resignation.  There seems no other way of putting it than propping your head in your hands and sighing with that little bit extra expression where your lips vibrate and it comes out a little like a horse sneezing when you feed it.  If only I could spell it.

I’m sure I’ve said it on here before, but sometimes the on-going frustrations of life with little lung start to get to you.

The last few days have seen a small pattern forming of good mornings and a gradual downward slide during the afternoon, which is just about possible to cope with when you know what to expect. It’s the limitations of the downward turns that are starting to get to me.

Take this afternoon, for instance – by no means a stand-alone example and definitely something that’s struck me over the weekend, too – when K was feeling pretty rubbish.

Home from a day at work and having bathed to wash the day away, like many of us she just needed a little bit of TLC. TLC for K meaning Tea, Love and Chocolate.

Wanting to do what I could (not being content with only being able to offer one of three) I headed to the kitchen to brew up a cuppa and the five-minute rinsing/boiling/brewing marathon left me breathless and exhausted.

It was standing over two cups of half-made tea, leaning on the counter trying to get my breath back that things threatened to boil over – and by that point the kettle had been turned off.

It goes beyond what you’d call “frustration” – it’s so much more than that. I was overwhelmingly angry as I stood there feeling utterly useless and debilitated. The trouble was, I don’t really know what I was angry at. I’m not even sure there is a something to be angry at.

I was just angry. And as if to rub hard-crusted rock salt into the gaping jaws of a shimmering, seeping wound I couldn’t even summon up enough air in my lungs to scream in frustration.

It strikes me as the ultimate sort of irony that the next time I have enough energy and breathe to scream at how sh*tty it all is, I’ll be passed it and won’t need to scream.

But I can’t tell you how much I’m looking forward to whatever the first thing to really rile me post-transplant is, because boy is something going to get it full-blast.

So a word to the wise – be nice to me after my op, you never know when I’m gonna blow.

I’m not entirely sure what day it is today.  I’m fairly confident it’s Saturday because there’s more sport and less Richard and Judy on TV, but as far as I’m aware it could just as easily be Tuesday week.

I’ve suffered something of a lack of sleep over the last few days and my body clock is so far out of synch I could be in Australia.  All thanks to my third aborted transplant call.

Aborted call, false alarm, non-go-ahead shout, call it what you will, it was my third foray down to Harefield in the middle of the night to be pricked, plugged and prepped for an op that never came.

This one was, however, at least mildly entertainingly different, being as I was a “back-up” recipient for the first time in my 3 calls.  The previous two times it has happened, I’ve been right ready to receive the lungs when it was decided they were no good.  This time, I was second in line to someone waiting (at another hospital) for both heart and lungs, which obviously come best as a package.  Should there have been anything wrong with the heart or should there have been any reason the other recipient was unable to go ahead with the operation,  I would have received the lungs.

This meant a very different thought process for me from the last times I was on ward F East, nervously waiting to be told if they were good enough or not.  This time, I was convinced from the moment I spoke to the T-C, Julie, at just after 11pm that it would not be my night.  Which lead, inevitably, to a VERY boring 5 hour wait in a room on the ward to be told that I wouldn’t be heading to theatre.

The saving grace of the whole night was the comforting knowledge that the heart had been fine and the heart and lungs were being transplanted into the original recipient on the list.  Not only did it mean that at least someone’s life was being transformed in the early commuter hours of Friday morning, but that the organs of a lost loved one were being put to the greatest use possible and that perhaps in days or weeks to come their family may draw some comfort from that fact.

As it happened, all the whole experience meant for me was an entire night with no sleep whatsoever, which in turn lead to sleeping from 7.30am (when we finally arrived home in the morning on Friday) until 2pm and sitting through the rest of the eternally-dragging day feeling beyond terrible, hardly able to lift myself from the bed to drink some water, let alone contemplate eating or doing anything more energetic like watching TV.

It was pretty horrible, to be honest, and a mark of how much my body now struggles to cope with the unexpected.  Without a night’s sleep to rest up and repair some of the daily damage, my body was truly struggling to cope and wasn’t backward in coming forward about it – it was making more than sure I knew about it.

Things are better today, after a sensible night’s sleep, although the tiredness is still pervasive and I could do with a kip every half-hour.  I’m sure after another day in bed and another good night’s sleep I’ll be back where I was before.

And at least this time I managed a whole 6 hours at Harefield without mortally offending someone.