Monthly Archives: January 2008

I had a true yo-yo day today.

Clinic visits at Harefield run something like this:

Morning (around 9.30) – Arrive, register, sit and wait for 5-30 mins (depending on busyness), go in and have bloods done, get weighed and have obs checks (blood pressure, pulse, oxygen sats etc).

Get given cards to take to lung function (or RFTs as it’s known in-house) and X-ray and/or any other tests they may require up to and including ultrasound, ECG, CT scan etc.

Finish off those tests and report back to reception, where you are given a rough time to return in the afternoon, sometime after 2pm.

This morning, I had completed all required checks and balances (to great satisfaction – RTF going up, X-ray looking good) by 10.15am, and returned to be told that Doc C would get round to seeing me around 3.30pm, but to be back by 3 in case he ran early.

For those of you not too quick at maths, that’s well over 4 hours.  I looked at Dad and he looked at me.  Jokingly, I offered up, “Go home for lunch?”

On more serious consideration, however, we realised that if Doc C were running late when we came back, we’d not be back in MK in time to get to the GP surgery to pick up my prescription I needed and collect it from the pharmacy near my ‘rents house (the great little place that sorts all my druggy needs).  On further thought, it occured to us that the 45min-1hour drive it would take to get back home, plus hour-and-a-bit to do what we needed to do, including lunch, plus the drive back still left us with a good half hour to spare.  So home it was.

The clinic appointment itself went swimmingly.  Doc C is really pleased with my progress – all my infective markers are right down, my liver function is almost back to normal, the other bits and pieces in my blood which were low are coming back up.  My lung function is steadily increasing, as should be expected as I start to get out and about and to exercise more and he’s now seen fit to take me off two of my anti-biotic tablets, which brings me down to a total of 10 Tx-related drugs, plus 2 CF-related drugs.  Cracking.

This evening I’m feeling pretty tired, but not too bad.  I’m looking forward to two days at home tomorrow and Wednesday, then another clinic visit Thursday.

Keep well.

It’s funny, you know.  I was just coming on here to quickly bash out a blog and thinking over what I’ve been up to and I thought, “it’s been a nice, lazy Sunday.”  The thing is, though, it really hasn’t.

All right, I did sleep through *almost* all of the morning (I did see some of it…), and I did watch about an hour of football/rugby during the day, too.  But my major achievement of the day has been in being active almost all the time I’ve been up.

For those of you keeping track (like me) of all the firsts I’m experiencing at the moment, there’s another to add to the blotter, that being the first walk down to the corner Tesco to get a paper – and a fitness magazine, get me.  Lovingly measured by our trusty friend Dazz, I can reliably inform you I walk all of half a mile and a bit, albeit downhill, and felt strong enough to walk back up again, too, had we not already arranged for Dazz to meet us there in his car, lest the return journey prove to be too much to handle.

I was so happy to have done it – it was a lovely walk and it showed me just how fit these new puffers of mine are.  More than that, it showed me that my leg muscles are also starting to catch up.

Not only did I manage to walk the half-mile to the shop, but I also did a 15 min session on the exercise bike this afternoon, too.  It was hard work and my legs really felt that one, but I felt great getting off it and feeling like I’d really been working myself.

On top of all my exercising, I also made a start on clearing up the study, otherwise known as the bomb-site.  Also took on cooking duties for the night and helped out with the washing up, too.

What’s really hit me about all of that, though, is not so much how tired it made me – because by the time I’d finished drying up and then wiping the kitchen down, believe mme I was cream crackered – but how quickly I recovered.

When I flopped on to the sofa with everything done for the night around 9pm, I had the familiar pain in my lower back which would come on whenever I’d done too much before.  The difference is, back then it would last the rest of the night and I’d be totally out of commission, whereas tonight, it’s barely an hour later and the pain’s gone off and I’m feeling fit enough to do anything that needs doing before bed.

It’s such a bizarre sensation to be able to recover from things quickly – to not have one simple task wipe you out for the entire day.  I LOVE IT!

Not much more I can say to that, really.

This week has without doubt been the busiest week of my life in which I’ve achieved precisely nothing.  Today I have a “day off” and I’ve spent the whole thing in my PJs desperately trying to catch up on the sleep and rest that I’m told (and feel) my body desperately needs right now.

The essence of the problem?  Because the docs were nice enough to let me out before Christmas – and before my Tac levels had sorted themselves out properly – I’ve been having to go to Harefield for blood tests to check the levels every day.  Which means from New Year’s Eve to yesterday I’ve been getting up at 7.15am every morning, traipsing the hour to Harefield for bloods and an indeterminate wait of between 15 minutes and 4-and-a-half hours before they let me home again.

In the process, I’ve had a white cell count creeping northwards, which has since settled, plus some other slightly raised (ie: dodgy) results back, which have put the docs on their guard.

I’m not really complaining, as it’s better to be commuting every day than still being resident on the ward, which I’m sure my ‘rents will agree with, even if they are the ones having to ferry me to and fro every day.  I am also well aware that plenty of people have much earlier starts and longer days than me and suffer it without moaning, but right now I just miss my sleep.  I can categorically state for the record that 7 hours sleep is not enough for a body still recovering from the rigors of having half it’s engine ripped out and hastily replaced with a new, improved model.

So I’ve been delighted to bask in the chilled relaxedness (it’s a word, I just decided) of a day with no Harefield visit.

Yesterday was my first post-Tx clinic appointment, which went really well, despite being deathly dull and involving a 4 hour wait to see Doc C.  He’s mightily impressed with my progress and all the infection markers which had been creeping up have come back down again, which is ace. The upshot is that I have a day off today, then hopefully my last day-time visit for bloods on Saturday morning, after which I should settle in to a pattern of twice weekly clinic visits, which will gradually become less over time.

What all of this to-ing and fro-ing from Harefield has meant, however, is that my time at home is taken up pretty much entirely with eating and sleeping, with barely a couple of spare hours left over to spend time with K, which has been a real drag.  We both naïvely assumed that being back at the flat would mean we’d get more time together, but it turns out that’s not so.  We are both anxious anticipating my switch to clinic rather than ward visits so that we at least get Tuesday and Wednesday to ourselves.

Still, it’s not all doom and gloom.  In fact, it’s not doom and gloom at all, really – I can’t moan when I still spend all my day thinking about the myriad things I want to and will soon be able to do with my new life.  I’m just itching to get back to work, soon as my body and my doctors (who work, naturally, in unison) allow me to.

Think of me, being poked and prodded, when you wake lazily in bed tomorrow morning.  But don’t feel sorry for me, because shortly afterwards I’ll be tearing down the corridor to escape at a speed I never imagined I’d achieve again….