Archives: Family

More and more firsts keep piling up this week.  It’s been a bit exhausting, but for the first time in a long time I feel exhausted and I can actually identify the myriad different things I’ve been doing over the last few days to induce the tiredness rather than sit here recalling the fact that I made an ill-advised trip to Tesco which has wiped out my week.

Last night, having got home from work – well, picking K up from work – we were exchanging texts with a friend of ours who lives in Luton who was feeling a little down in the dumps, largely due to being left in charge of the dog and having far too much time to himself to think, something which always bodes badly for those of us with slightly brooding dispositions (see previous entries in this blog for my own personal examples).

Naturally, we invited him up for a Friday night of fun and frolics in Bletchley, but since he had the dog to look after and work to be at in the morning, he couldn’t make it.  Without having to think about it twice, I immediately offered to drive us down there to take the party to him.  No sooner were we off the phone to him than we were in the car and heading South, an option which wouldn’t even have crossed our minds just a few short months ago.

We had a great night, picking up party food on the way, sitting chilling, chatting and catching up, setting the world to rights and coming up with the ultimate in Bat-plans for the coolest of dudes and then kicking back and taking in a flick to top the night off (the improbably brilliant and clever Fracture, which I’d highly recommend).

We didn’t leave Luton till after 11 and didn’t make it home till shortly before 12 – a late night even by current energy standards – but it felt fantastic to have been able to just up and go, to shoot off to be there for a friend in a way I haven’t been able to do for a number of years.

Back in the olden days, five or six years ago at the height of my time front of house at the Theatre, I used to do this kind of thing all the time.  Friends would call late at night (usually after a show had finished) and I’d whisk myself round to drink tea and talk things through till all hours of the night.  I’ve missed being able to do that for my friends, to be able to be there, wherever, whenever they needed me.  I feel like I’ve found another missing part of me and I’m welcoming it back into the whole with open arms and a wonderful excitement.

Just to add to the excitement and general, all-round super-happiness of the week and month and year so far, K got a letter this morning offering her an interview at City University in April, two days after the Tresco marathon.  It must be said that after her UCL experience and the rather blunt non-communication from Edinburgh (they informed her of her lack of success through UCAS, without evening deigning to write a letter themselves), K had pretty much given up on City.  To be offered an interview had us both grinning from ear to ear this morning and really topped off the week beautifully.

Of course we’re not counting our chickens or other similar jumping-our-guns-type metaphors, but there’s every chance we could be settling in London come September – me to a new start in my long-stalled career and K finally starting down the road she’s been aching to take since her teens.

Life has dealt us both some pretty raw cards over the last few years, but if ever there’s evidence of a deck-stacking Karma at work, 2008 so far has to be it. 

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’s amazing how out of the loop you get when you’re in hospital for a week.  I saw K most days while I was in, spoke to her on the phone at least twice a day not to mention exchanging obscene amounts of text messages, but somehow I still seem to have spent the day catching up on all the big news-worthy events of life in MK which appear to have slipped her thoughts while she found ways to keep me entertained in the Big House.

I have had a great day, though, quite apart from catching up on all the goss (which, incidentally, K claims she “forgot” in all the excitement of spending time with my in my room… excitement I wasn’t party to at the time, clearly, since I distinctly remember my room in Harefield being most very dull), I have had several cups of tea with visiting friends and also managed to do something I’ve not done for a long time.

This afternoon I did the most wondrous of Sunday afternoon activities: ODD JOBS.

It’s not until you’ve spent a goodly amount of time not being able to submit to your whim and fancy of “popping” somewhere to pick things up or drop things off that it becomes quite such a special thing.  That’s why today has felt so good, I think, because for the first time in a very long time I’ve been able to think of something that needed doing and just go out and do it.

Sitting around with a couple of friends this afternoon chatting about what computer one of them should pick up, we decided to swing by PC World to have a look, where I could also pick up an iTrip for my new iPod to play it in my car and replace the fumbling around with CDs that has been the case up to now.  Following which we skipped across to Borders (where else) to pick up a scrap book to help us plan our many and varied travels we’ll be taking as I get stronger and more free to move about without the restrictions of clinic appointments and potential hiccups.  Including a quick swing past my ‘rents house to pick up our spare house and car keys, we weren’t out for longer than about an hour-and-a-half but it was the most wonderful feeling to be able to follow an impulse and get things done.

The first few months (well, 3-6 if you listen to the docs) post-transplant are supposed to be the big rocky patch, with hiccups here and there and the occasional (or not-so-occasional in my case) knock-back.  But I’m fast discovering that they are also the times of the biggest revelations about what life is truly going to be like with new lungs and just how much of a difference to the every-day they are going to make.

Here’s to a week free and clear of hiccups, clinic trips (bar my appointment on Thursday) and a more settled routine, including getting into proper training for the Tresco mile.  Anyone fancy a cuppa and in MK, you know where to find me – I’m the one sitting on the sofa grinning.

I’m back.  24 hours back, in fact.  Stupid viruses.

After hurling myself inside out for 24 hours, I managed to stop only to discover it had either caused or masked a lovely little infection, for which the docs started plying me with IV anti-biotics and wouldn’t let me home.  Wouldn’t let me home for 4 days.  Grrr.

Still, I’m back now and basking in the warm glow of a doting girlfriend and freedom to do what I want (as long as it involves sitting spending quality time with K).

Also feeling very excited about the Organ Donor Taskforce report published yesterday (which I would link to, but let’s face it, how many of you are going to wade through 66 pages of Government-commissioned report if you don’t have to?).  Essentially, it recommends a number of not-particularly expensive solutions to current problems within the current donor/transplant network in the UK which they are confident will – if implemented as the Government say they will – result in a 50% increase in the number of transplants in 5 years.

Amongst other things they talk of making assessment for donation the norm, rather than the exception, in end-of-life care, as well as dramatically increasing the number of Donor Transplant Coordinators and retrieval teams, all under the coordination of a central organ donation organisation.

This really is a massive step forward for organ donation in this country and is actually far more important than the possibility of switching to a system of presumed consent, as has been discussed in the news this week.  The so-called “Opt-Out” system may well increase the number of available organs, but without the infrastructure changes behind it, is likely to do very little to actually increase the number of transplants that are carried out in this country.

That said, the presumed consent debate is a fantastic one because it’s getting everyone to talk about organ donation.  If the 70% of the population who say they are happy for their organs to be used after their death all signed up to the organ donor register, there would be no need for an opt-out system anyway.

Other than that, I’ve got very little going on at the moment – keep trying to plan things but having stupid lung-related hiccups getting in the way all the time.  Anyone would think that 8-weeks post-transplant isn’t very long to be trying to get up and about and leading an active, multi-disciplinary lifestyle.  Honestly….

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.

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….

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!

So I’ve managed, it appears, to spend a couple of days without sending my Tac levels sky-high and spending all dy hurling, which is nice.  I have, however, managed to do something to my left-hand side, which is causing me a great deal of pain right now.

We think – in our infinite wisdom (read: mildly-educated guesswork between one trained nurse and one former-CF patient, newly transplanted) – that I may have strained the stitches on my internal wound.  Back visiting the flat on Christmas Eve, our little nephew came running into the study to see what we were all gauping at on the computer and without thinking I automatically hoisted him up on to my lap.  We reckon the effort of lifting him may have pulled on the stiches (which won’t have fully healed and dissolved for another few weeks yet) and that’s what’s causing the pain.

The biggest problem is that it’s right on my Lat muscle (the sort of angular one that comes down under your armpit), which means just about any body movement twinges the stiches and gives me a nice, healthy, bracing shot of pain.  I’m dosing myself up with Paracetamol and Tramadol at regular intervals, but it doesn’t seem to be doing a whole lot.

Still, the plus side of all of this is that the pain in my side is literally the only thing I’ve got to moan about.  Everything else is absolutely brilliant – I’m walking around freely, my appetite is fantastic, I’m enjoying my days and sleeping pretty well through the nights.  I’m full of hope and excitement for the New Year and just wondering which of my many possible projects I want to tackle first once I’m up and running.

Today I’ve had a day off from going to Harefield, which was nice as it meant I got a bit of a lie in.  I had a wonderfully lazy Saturday morning lying in bed with K reading the paper and chilling out before I got up and had a nice soak in the bath (which did wonders for the pain in my side). 

The rest of the day has been spent in similarly chilled fashion, watching TV, sleeping a little and doing the mini-exercise regieme that the Harefield physios set me before I left.

Tomorrow, K and I hope to get back to the flat to try spending a few nights there over New Year to see how we get on.  At the moment I’m lucky in that I’m here being pampered by Mum and Dad but I really need to get back on my own two feet.  While I know that K’s going to be there to do things for me if I need them doing (which, doubtless, I will to start with), it still feels like a pretty major and slightly scary step.  But at the same time, it’s wonderfully exciting and I can’t wait – it’s one more step on the road back to “normality”.

We’re just a couple of days away now from the end of the most amazing year of my life – one that’s seen more ups and downs than  an entire day riding Nemesis at Alton Towers, but one which will no doubt stick in my mind forever, for all the right reasons.

Despite everything that’s gone on in the last six weeks and despite all the hardships of the year before that, I’ve done some things this year that I’ve always dreamed of doing and can’t wait to have the opportunity to do again. 

K and I sat watching a film last night which summed up my attitude to life perfectly.  Funnily enough, I don’t normally credit Adam Sandler movies with being all that profound, but watching Click reminded me that life is about every experience you go through, good or bad, and that every single thing you go through helps to shape you as a person.  I would not swap a single day of the last 12 months because the great ones were the greatest because of how hard I had to fight to get through them and the bad ones were the worst but taught be more about myself, my strength and my resolve than a million sessions with a phsycologist or life coach ever could.

Here’s to meeting with triumph and disaster and treating those imposters just the same.  And here’s to 2007: year of wonders yet to cease.

Full post coming later, as per usual, but just a quickie to say you can see the all new fit and healthy me on Anglia News tonight at 6.30pm.  Failing which, for those of you too impatient to wait for the news or who live outside the Anglia region, you can click the link below and watch the piece on the good ol’ interweb.

Watch in amazement as I run up stairs, talk rubbishly about post-transplantyness and stand on a freezing cold lakeshore with K pretending to look like we’re there for fun!  And look out for Mummy L’s perfect post-tx soundbite….

http://www.itvlocal.com/anglia/news/?player=ANG_Home_26&void=134327

24 hours later and I’m all tucked up home again.  My tac levels are all over the place and the docs can’t really work out why, but on the basis that pre-Christmas they let me go if I came back every day for bloods to keep an eye on them, they couldn’t see any more reason to keep me in if they were only going to be doing the same thing there and have me taking up precious bedspace and resources for the rest of the time.

I’m not about to start arguing with their logic.

I guess, after the last two blog-hijackers entries, I can hardly say I’ve had a rubbish Christmas or that I spolied it for everyone, since that’s already been disproved.  What I can say is that it’s no fun spending Christmas day feeling like you’re about to hurl, nor is it a bundle of laughs spending Boxing Day actually hurling and in hospital.

That said, it was wonderful to be at home and have the chance to celebrate, as much as I could, with my nearest and dearest, even if it did feel somewhat tainted by sickness.  I was incredibly lucky with the tremendous gifts I recieved from family and friends and I shall enjoy getting out and spending the bundle of vouchers I received as soon as my docs let me out in puclic places.

There’s not a great deal for me to add – being in hospital, particularly for one night when you’re mostly concentrating on not throwing up – doesn’t give you a great deal of war stories to relate.  The team of docs and nurses were fab as usual – the nurses particularly making me feel right at home again.  The one advantage of spending a month on the same ward is that you do get to know the staff particularly well, and it feels like something of a bittersweet homecoming when you’re entrusted to their care again.

So, Merry Christmas again, and apologies to all those of you I didn’t reply to on the day with emails and text messages, but I was rather preoccupied with either celebrating as best I could or sleeping the sickness off.

Here’s to a better and more stable New Year’s celebration and to an ever strong me off into 2008.