Archives: Transplant

I say family, because to me my Godson is my family, although technically the bloodline isn’t there. But today I got to spend a few hours round at his place playing, chatting, introducing K to him and his wonderful parents and it was so lovely as to be almost indescribable. But you know me, I’m going to try…

K had to work all morning, which left me at home to my own devices, something which is never the greatest of ideas when I’ve got something to look forward to in the afternoon, because I tend to not be able to think of much else and so meaningful work is always a little hit-and-miss.

As it happens, I managed to use the time to surf the internet for filmmaking websites and news and such, which has helped inspire and drive me forward with a few of the projects I’ve got rolling along in the background at the moment. My docs at Harefield are keen for me not to start doing any “real” work for a while (6-12 months post-op), which is both freeing and frustrating. There are many things I want to do with myself right now and a few projects I REALLY want to get going on, but at the same time I’m sure in the long run the enforced slow-down will only benefit them all by making me take stock of them properly and devote enough time to thinking them through and planning them properly.

I picked K up from work at half two and we shot straight over to Little R’s house to catch up with them for the first time in…well…. blinkin’ ages. I thought his Mum wasn’t ever going to let me go from the massive bear-hug I was enveloped in no sooner had I stepped over the threshold. Not that I’m moaning, you understand, since I felt pretty much the same way seeing all them again.

I feel like I’ve been so much out of R’s life for so long now, since he lives so close, but it’s been such a struggle for me to get to see him. Now I’m starting out again, I’m hoping we can rebuild our relationship back to how it was early on before I got too ill to do anything with him. We’re already planning an ice-skating trip for the Easter holidays!

Plus, I got to be made hugely jealous at the family’s beautiful home cinema set-up. Not only have they got a PS3 (with Blu-ray, which just won the HD DVD format war for those of you who missed that piece of news) but also a gorgous 40″ HDTV and surround sound system to play it through. I’m not the most materialistic man on the planet, but I have to confes to a slight weakening of the knees when it comes to film-watching in the home (and filmmaking outside of the home…). Anything else I can take or leave – if it’s film-related I think I’d rather take it. Terrible of me, I know.

K and I then came back and veg’d good and proper for the night – some lovely sausage-and-chips comfort food and a night in front of the telly.

We caught the new series on BBC3 Being Human, which I have to say massively impressed me. The idea of a flat-share between a Vampire, a Werewolf and a Ghost didn’t do a whole lot for me on reading the listings, but the result was much more heartfelt, funny, dramatic and touching than I ever expected. It’s well worth checking out, if you can cope with the scary subject matter. It’s not really gory, but they have invested a good chunk of cash in a couple of big transformation scenes for the wolfman. What really impressed me, though, was the way it was shot and cut together. For the first time in ages watching a new British drama (particularly BBC), they have finally steered away from the ridiculous music-video manic-camera movements which blight so much UK output. Instead they trusted the really very strong performances of their lead cast and let the camera linger on them without wobble, shake or zoom. Well done that team.

Today I saw my Gramps for the first time since my op – he’s up visiting the ‘rents for the weekend and K and I stopped over for the afternoon to catch up. It was brilliant to see him again – after quite a long while, too – and he was suitably impressed with my turnaround from the last time I saw him. I love to see the look in people’s eyes when they see me for the first time since the op; it’s a wondrous mixture of the most complex emotions, with happiness and relief dominating.

This afternoon was not a great one, sporting-wise, which makes it lucky the rest of the day was so happy and pleasant.

First up, I arrived at Mum and Dad’s in time to sit and watch the Saints drop miserably out of the FA Cup to the mighty Bristol Rovers… they of an entire footballing division below us. Not that the difference in league standing made an impact on the game, since the majority of the Saints team (ok, the entire Saints team) completely failed to turn up for the match anyway. Maybe they thought they were playing Bristol City instead.

Following that disappointment, we hastily beat a retreat from the sofa to the pretty little village of Olney, where we took my Gramps and his lady friend for a nice afternoon stroll around the little boutique shops and stopped at a perfectly quaint little tea shop for afternoon tea and teacakes and crumpets – incredibly refined even if I do say so myself.

We found a beautiful little gift shop there, too, a real little gem, with sparkling jewelery which attracted the magpie-like K and some lovely little tokens and miniature statues and the like.

We eventually wandered ourselves back to the car and back to the ‘rents just in time to sit and watch Man Utd demolish Arsenal. Felt very sorry for K – being an ardent Gunner – but was remarkable to watch. And Dad and I did enjoy making the most of it because, let’s face it, K gets enough comedy mileage out of our following Southampton, so it’s only right for us to take advantage while we can.

We then settled into a lovely evening’s roast dinner (I guess Mum got confused and thought it was Sunday…) and chatted about all sorts of weird and wonderful things as we tend to do when we get together as a family.

It’s been a lovely day seeing Gramps again, going out for a stroll around a small town with him – something I’ve not been able to enjoy for some time, like so much of what I do these days. The firsts are stacking up so fast I keep thinking that I must have run out by now, but then another will pop up and remind me how well I’m doing and how great this new life is.

Was back at Harefield today for my first clinic flying solo. Up to now I’ve been along with Mum or Dad and maybe K in tow, too, but now I’m more mobile and – more to the point – can drive myself comfortably for an hour or more (just), I can finally let Ma and Pa go about their usual daily business. In other words, they have to stop skiving off work to run me to the hossie.

What was even better about today (barring all the medical stuff, which I’ll come to in a bit) was that after our experiment with popping into Town last week, I took myself off on the train after the morning tests and got to have lunch with a really old school mate, who’s working for a record label near Archway. It was brilliant to see him and catch up – both of us feeling really happy about our lot in life at the moment, which not only makes a change (for me, anyway) but makes for a refreshingly up-beat and happy little luncheon.

Back at the big H, I saw the main man himself for the first time in a few weeks, which apparently worried him, because you only normally get passed to him if there’s something wrong.

As it happens, there’s not – he’s even given me such a clean(ish) bill of health I don’t have to go back for four weeks(!), barring unseen complications on my part. It’s amazing to think that just 3 months post-transplant, I’m already in a place where my docs are happy for me to stay away for such a prolonged period of time.

The down-side to it is that my lung-function doesn’t appear to be following the usually predicted improvement curve that he would be expecting to see at this stage. Whether this is left-overs from the Organising Pneumonia or signs of something potentially more sinister, he’s not sure.

The big issue with the O.P. is that it can take a long time to resolve (hence the 6 weeks of high-dose oral steroids I’m on at the moment), which means it’s pretty hard to detect if there’s anything else happening. The good news is that the biopsy from my bronch a couple of weeks ago is definitely negative for any signs of rejection and there is also very little or no sign of infection, which are the two main dangers right now.

More likely than not, the plateau in my lung function is a by-product of the O.P. and as that clears up over the next few weeks, my lung function should start to creep back up towards the predicted curve that they would hope and expect to see. Going to the gym and getting more exercise, putting weight on and generally getting stronger should all help that. Since it’s a bit of a waiting game to see how it progresses, that’s why they are happy for me to head off until the steroid course finishes and they can have a proper look to see if everything’s resolved.

For the time being, he’s kept me on some oral antibiotics and added in a second immunosuppressant to try to discourage rejection should there be any lurking or even thinking about having a bit of a lurk. It does make me mildly more susceptible to colds and infections and things, but not to such a degree that it should mess with too many of my plans. The main thing is I can still go to the movies…

All in all – beyond the slight concerns over the plateau – it’s been a good day hossie-wise. In terms of independence and self-confidence, it’s been even better. For the first time since my transplant, I really feel like I’m fending for myself and reaching a level of true independence and it feels amazing. I’ve not known this kind of freedom for a really long time and boy is it good to have it back.

I’ve had a much better day today than Thursday – both productive, relaxing and joyous in the space of 14 hours, it doesn’t get much  better than that, I don’t think.

Started out with a way-too-early start to give K a lift to work this morning, but when I got home decided it was too late in the morning to consider sliding back into bed (although I have to say it was mighty tempting), so instead I sat myself at my desk in the study and got stuck in to completing the background work for a documentary proposal I’ve been working on since my transplant.

It took me most of the morning, but I got it sent off to the appropriate people to see what they make of it by lunch time, which pleased me greatly – as it always does when I actually complete a task I set out to do.  I suppose that’s a pretty bad reflection on how often I complete the things I set out to do…

Anyway, after busying myself all morning, I decided to take the afternoon off – as is my wont – and relaxed playing Football Manager on the computer for a couple of hours before heading out to pick K up.

From there, we headed to my ‘rents to catch up with my cousin who was visiting with family in tow from Luxembourg, where she took up residence with her Luxembourgish husband several years ago.  I’ve not seen her or her family for two years, we worked out between us, when her eldest was younger, her middle was toddling and her youngest wasn’t even thought about.

It was fantastic to see them – and my other cousin and his new wife who made it up from the old family home in Southend – and catch up with them all.  K was especially happy to be able to enjoy the baby-cuddles she’s been looking forward to all week.  The little one is a wonderful bundle of cuteness, although she’s not as good at hide and seek as her brother and sister are.

In another moment of “oooh I can do that now I’ve got new lungs” I took my cousin and her four-year-old into town whilst we waited for dinner to cook to pick up some new shoes (which are apparently a bargain over here compared to Lux).  We had the best time wandering into town, looking at all the shoes, (“those are cool.  Those are really cool.  Those are REALLY cool.  Those are the coolest!”) although we were all disappointed that they didn’t have the ones with monkeys on in his size.

We all gorged heartily on one of mum’s roast dinners and the “adults” sat around chatting whilst K and I played hide-and-seek after dinner.  My ‘rents house has the best places to hide – it’s clearly been far too long since I’ve played a proper game of hide-and-seek, because I found some great nooks and crannys.  And I’m much better at hiding now I don’t have a tell-tale “ahem” to give me away every 5 seconds.

I’ve got such a wonderfully close-knit family that it’s always wonderful to spend any time with them, but when the gap has been as long as it was since I last saw the Lux Lot it makes it that bit more special.  And when they’d been told after I saw their mum and dad (my aunt and uncle) just before my op that they weren’t sure I was going to make it to Christmas, it adds that final finesse of wonderment to the whole day.

Now I’ve just got to wait until my first year post-Tx is up and I can finally go out and visit them instead of having to wait for them to get enough time off to make it over to us.

I should have known before I went. When I watched The Bourne Ultimatum a couple of years ago, the shakey-shakey camera in the car-chase scene made me feel distinctly fuzzy-headed. In the morning, I took my AA tabs, which have a habit of making me feel slightly woozy.

So it’s hardly surprising that an entire film of running, screaming and a LOT of shakey-shakey camera – about which people are all given advanced warning – would not particularly agree with me today.

But ignore the signals I did and – in the hope of taking advantage of K having a day with her sister-in-law and the littl’uns – I set off to catch my second post-Tx double-bill of Cloverfield and Things We Lost In The Fire.

Since my comments section seems to have picked up on my movie opinions of late, I would love to be able to give you solid guidance as to the brilliance or otherwise of either of these films. Sadly, I only made it 3/4 of the way through Cloverfield before giving up completely and leaving, upon which I had just about enough level-headedness in my inner ear to get me home and into bed without throwing up, so I didn’t even get in to see Things We Lost…

From what I saw of Cloverfield, I have to say I wasn’t as impressed as I expected to be. I’ve heard such rave reviews about it from critics and friends alike, but I have to say I thought it was pretty ordinary. It was just a big monster movie, but shot in a very different style to the classic Godzilla-like epics we’re used to. It was hugely innovative, I’ll give it that, but the relationships and plot devices felt just as phoney and forced as anything you’d see in a regularly-shot Hollywood diaster movie. And I’m not one to be convinced my technical trickery that anything below-par is up to to a higher standard – a cliché’s a cliché however you choose to shoot it.

That said, I was hardly in the frame of mind to judge a the flick properly, focusing as I was on not throwing up from about 15 minutes in.

So today’s been a bit of a washout really.  Disappointing, but I’m sure I’ll get to the flicks next week to catch up on the good stuff and let you all know what’s what.

Hooray for pancake day!  I’m not actually massively addicted to pancakes myself, but K is a bit of a pancake demon and loves to cook them, too (which she happens to be great at).  Not only that, but it’s become a kind of tradition to cook pancakes for her bro’s family (including the little niece and nephew, plus big sis).

All of which means we got to have a grand old time playing, cooking and eating with the littl’uns and ever-so-helpful big sis (who actually took over a little of the cooking).  It also marks the first time since my op – in fact, the first time ever, we think – that I lifted the little ones up for hugs and cuddles.  Both of them were so happy and excited to see us and it was indescribable to finally be able to scoop them up and give them a proper cuddle, rather than having to find a way to crouch down amid oxygen tubing and other gubbins.

Earlier in the day, after a relaxing morning, K and I went out on what must amount to our first proper “date”, to catch a re-screening of The Golden Compass, which has hit cinemas again on limited showings because of it’s nominations for the BAFTAs and Oscars.  Sad to say, though, I loathed it with a passion.  Although I can see how the story is interesting, or at least could well be if told properly in the novels, as I’m reliably informed it is, the film falls way short of an acceptable adaptation.  Apart from anything else, it features some of the worst performances from child “actors” I’ve seen in a very long time – it’s like watching a very poor stage school performance which has paid too much attention to the glitz and glamour without taking the time to drag even vaguely realistic performances from the actors.

The adults do well with what they’ve got but the whole thing left me feeling slightly bored and uninterested, with no real sense of peril or suspense.  K’s told me she’s not sure, having read the books, she’ll be comfortable watching the next two movies, but having seen what I’ve seen today I’m not sure I’d be willing to give up my time to them anyway.

On a brighter note, the massive Xscape building which houses the cinema is also home to a number of out-doorsy-type shops, where we managed to hit the sales and walk away with a bargain pair of water/wind/weather-proof jackets to take away on the various travels we’re starting to plan up, the first of which being a week up in the Lake District for my birthday week in May.  I daresay they may also come in handy if and when we head to Durham at the start of March and Tresco in April.  Like the scouts, we are prepared.

The babies have definitely tired me out today and I’m ready to tuck myself up, but it’s amazing again to be able to reflect on the things I can do with myself now that wouldn’t even have registered on my radar six months ago.

Thanks for all your messages, it’s nice to know that’s it’s not just the two of us who are getting such a pick-me-up from my new start in 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’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.

The inside four walls of Harefield hospital are starting to become depressingly familiar.

Don’t get me wrong, it’s a great place, with experienced medical teams who are – in my humble opinion – second to none. But every now and then – just occasionally, mind – I do find myself wishing I could spend more than 4 days in a row at home without getting myself admitted back onto E ward. Or F. Or any alphabetical character’d ward in the place.

Give me my due, though, at least I’m giving the docs a variety of ailments to deal with – Heaven forbid I should make their job dull and repetitive. First off we had high Tac levels, swiftly followed by good, strong infection, chased down with Norovirus with a sprinkling of chestiness and now we have my first official episode of rejection.

Now, I’m assured by people who know a lot more about these things than me that this is perfectly normal within the first year and particularly the first few months and is nothing to be worried about.

My lung function hasn’t picked up since the touch of infection last week, indeed it’s dropped back ever so slightly, and combined with a stubbornly low level of Tac in my blood, the doc’s are left to presume that, what with my infective markers all dropping and me feeling grand in myself, rejection is top of the list of possibilities.

What this means is a wee holiday on the ward so they can perform a bronchoscopy tomorrow (Tuesday) morning to take a biopsy of the lung tissue to have a good look-see.
For those of you who prefer non-medical, they’re gonna chuck a camera down me gob and snip out some bits of me blowers to see what’s causing the hissy fits.

To say I’m scared would be to over-state it – I have a team I trust 100% here and if they say it’s cool I believe it’s cool – but I still can’t escape the niggling reminders that they last time I was knocked out for a “routine procedure” I woke up a day later in ITU on a ventilator and dialysis. Not fun.

Doubtless this is all going to go a lot smoother, but I will certainly be glad to see the ward staff at lunchtime tomorrow and know it for sure.

For the time being, I’m now enjoying my stay in my 4th room on E ward, my 5th room between E and F in the last 2 months and that’s not counting the two spells on ITU.

One day I swear I’ll get to spend a whole week at home with my new lungs. Now that’s gonna be a novelty.

 Update…Oli is fine, just a bit of a sleepy head because of the general anaesthetic.  Unfortunately we haven’t seen the doctors so don’t know how it went but we are working on the assumption that if there was anything serious they’d have been in to see him before now.  Will post news tomorrow once we’ve got biopsy results.   K  x

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….