Archives: Blogging

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.

Freedom at last – after a week spent couped up inside despite feeling just as well as I had the week previously, it isn’t half a relief to be back at home and within my own four walls.  Even if I don’t leave them for the next 7 days, it’s going to be a heck of a lot nicer than it has been on E ward this week.

That’s nothing against E Ward, you understand, it being the very best of the best places to be if the docs suspect you’ve something dodgy going on in the new blowers they implanted, but let’s be honest: hospital is hospital.

Interestingly, I didn’t find this 5 night/6 day stretch as hard going as my previous one (just a week prior) – I was fairly upbeat and resilient the whole way through.  I think it largely had to do with the fact that when I was admitted the team let me know straight away that I was going to be in until Saturday at the earliest, most likely, whereas the previous week every day had been a will-they-won’t-they let me go connundrum whic, upon the arrival of the nigh-on inevitable “won’t”, always served to deflate and depress me – getting one’s hopes up in a hospital is a bad plan at the best of times, but when you’re feeling physically fragile, too, it’s never good.

Still, three days of being pumped full of more steroids that the US sprint team and the Tour de France combined have served to set me back on the straight and narrow (we hope) and get me sent home for a glorious span of 5 days before my next clinic appointment.  Getting discharged on a Saturday is usually no mean feat, but luckily for me, my team were on duty this weekend, which meant full access to the key decision makers who could kick me out at will (mine or their’s, I’m not sure which yet).

All I have to show for my week’s stay in the Big House this time is a severe sleep-deprivation hang-over.  One of the side-effects of the Methal Prednisalone (the IV steroid they put me) is sleep disturbance and although I managed through the first night with just a bit of a late nod-off and minor leg-cramps, last night saw me lie awake until 6am before being unceremoniously awoken for my breakfast at 7.45.  Under 2 hour’s sleep does not for a chirpy Oli make.

Still, it’s hard to moan too much when I’m just happy to be out and back home.  Perhaps the total lack of sleep last night – and my managing to stay awake throughout the day so far today – will do me good in getting me off to sleep nice and swiftly tonight.  One can only hope.

Oh, the only other good thing to come from having far too much time on my hands in hosp for the week was a chance to get started on the treatment for my next writing project – a low-low-budget flick about a band on tour which I hope I’ll be able to knock out in quick-time and see about getting shot sooner rather than later.

Of course, like most of the projects that get mentioned on the blog in their formative stages, there is bound to be a mishap which gets in the way of this one at some point soon, but then perhaps this will be the exception that proves the rule.  Watch this space is about the best I can say, I guess.

I’m off to flop in front of the telly to try to stay awake till my last dose of daily immuno-suppressant is due at 10pm.

For those of you who read this in time over the weekend, pick up a copy of tomorrow’s Observer, where I *should* be featuring prominently in a health-article to back up the paper’s continued push behind the Opt-Out campaign.  For those who can’t get out to pick one up (and thus see a picture of my lovely mug) I shall endeavour to post a website link up here as soon as it’s up.

Unlucky everyone, you’ve got me back while Oli  is ‘doing time’ on E ward until he gets parole.

As many of you who have been following this blog for a while will know, Oli likes to keep the docs on their toes as his body often finds new and intriguing ways of baffling them.  Yesterday after the bronch’ the doc’s talk was swinging away from acute rejection and towards a fungal infection (I’m thinking athlete’s foot but in the lungs).  Today the definitive answer is that Oli has Organising Pneumonia.  Weirdly it is not as the name suggests, it is not pneumonia.  I will try and explain what I understood from the doc but if you would like to read a more clever description please look here, http://www.chestjournal.org/cgi/content/abstract/102/1/2S.

The simple version is…Oli’s got goo on the right lobe of his lungs.

The lucky thing is that treatment is easy and relatively quick.  It is also the same treatment that they would have given had it turned out to be a bout of acute rejection, basically hit it with massive amounts of IV steroids over 3 days and then oral steroids for several weeks.  There have been murmurs of letting Oli home after the 3 days of IV’s but we’ll see what happens, I don’t want to get anyone’s hopes up, least of all mine and Oli’s!

As a sneaky side note, due to work schedules and other such annoying things it is possible that Oli might not have any visitors on Friday.  Now although I’m aware he is all big and growed up and will get through it with no fuss, if you have a spare moment, please drop him a message on here or txt him if you have his number as I know it might make him happy to know people are thinking of him even if no-one can be with him.

Thanks and hugs to you all, K x

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

Apparently, according to my blog stats, which wordpress very kindly provide me with, someone searched for “rude bits” and got sent to my blog….  Bet they were disappointed.

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….

So here I am with my butt parked in the very same room I was sat in almost precisely 8 weeks ago waiting to be told my life was about to change forever.

Thanks to the wonders of the now famous (or is that infamous) Norovirus, F-East ward of HAREFIELD beckons again. I don’t remember my last visit here being quite so deeply involved with vomit and isolation, but there’s a weird sense of calm and good omens that comes with being back where my journey began two months ago.

As it happens I don’t think I’ll be here much longer – I was admitted yesterday mainly so that they could give me IV fluids through a drip to replace all the stuff my stomach was resolutely rejecting and sending back out from whence it came, and also to give me my immunosuppression IV as well since there was no chance of me absorbing the oral pills.

I’ve a bit of an infection rearing its head in my chest, but that’s much to be expected when I get knocked back at the mo, and should be easily sorted by a short course of antibiotics which shouldn’t keep me in here.

K has written a nice pleading note to the docs in Scrabble tiles (we couldn’t find any paper) so I’m sure doc C is going to be convince by her superior medical knowledge and eject me straight from his rounds in the morning.

Watch this space, I guess…

…is the way you accelerate away from them afterwards.

And that’s exactly what I’ve done today. Yesterday was rubbish, no doubt about it – I still can’t find anything worse in the whole recovery process than feeling sick. Tired I can deal with, pain I can put up with, but nausea is something I just can’t cope with – it totally bums me out and ruins any day it pokes its rubbish little head into.

Yesterday, however, was yesterday and today is very much today – a vast improvement and significant acceleration from my little speed bump.

Today I did two things I’ve not done for ages, never mind since my op. First of all, just after 12, the legendary (and I use that word with the most careful consideration) Dazz came over and collected K and I to take us out to the cinema. For those of you who don’t know, this is the most momentous of momentous occasions for me.

Before I was ill, I would go to the cinema maybe 4-5 times a week, frequently taking in up to 8 films in any given 7 day period, some weeks watching films multiple times, other weeks just ploughing through everything that was showing in the building. As I got worse, my trips became less and less frequent and once I moved on to oxygen, I was hardly going at all and certainly would never have dared going alone without backup. My last visit to the cinema was back in the summer to see The Simpsons Movie, along with K and my brother pushing me in a wheelchair. The humiliation I felt being somewhere so familiar in such a vulnerable position all but ruined the experience for me and until my op I never set foot nor wheel inside the building again.

So today I felt a wave of the most amazing relief wash over me as I strode up to the counter to purchase my ticket for I Am Legend (which is very good, by the way, although a little scary, so if that’s not your thing then steer clear). It felt a little like returning home after a long absence – everything familiar, if the tiniest bit different in the details.

I lapped it up – the adverts, the over-priced food which I’d normally never touch, the grand, sweeping trailers on the big screen, the sheer size of the wide-screen viewing space as the feature began to roll – the sense of excitement and anticipation that I feel sitting in front of the silver screen hasn’t gone away and my passion for movies in their natural environment was instantly rekindled.

After a mesmerizing 2 hours (come to think of it, maybe the film wasn’t as good as I thought it was, maybe it’s the experience I’m savouring…) we departed the flicks for the second first of the day: Borders.

Anyone who was with me way back in the early days of 2006 will remember this entry, so knowing that one of my first “independent” trips out would be to Borders. That and the fact that I had a goodly amount of dough to spend from Christmas on books and DVDs.

As is my usual policy with vouchers I get given, I always spend them on things that I would love to have but usually wouldn’t buy for myself because they’re a little pricey. So I came away with a Making of Sin City book which I’ve been lusting after for over 2 years now and a filmmaking book I should really have on my shelves. Added to which, rather dangerously, there was a DVD sale on, so I picked up Rocky Balboa, Y Tu Mama Tambien, Sunshine, The Good German, The Science of Sleep and War of the Worlds (mostly for the extras). Perfect.

On top of all this brilliant greatness of the day, I’ve also finally started putting into place the plans for the Tresco marathon mile I’ll be running with my bro and his section of marines in April, the first step of which is my Justgiving page, which can be found at www.justgiving.com/trescomile. I’m not looking for heaps of sponsorship (just 10p a yard, in fact), but I figured that if I put myself out there raising money for charity then it wouuld keep me honest and make sure I don’t duck out at the last minute. Not that I would anyway, but, you know…

If you’d feel like passing the address on to anyone, obviously feel free. Otherwise, keep an eye here for my progress towards my biggest post-op goal so far. I’m sure they’re going to get bigger with time, but a mile seems a really long way right now. Fingers crossed.

Today was not such a good day.  I’m not 100% sure just yet what it was, but something didn’t agree with me today and I’ve spent the day feeling extremely tired and sick – not a whole load of fun.

Having said that, I did still manage to walk to the local shops and back to get a paper (have to keep up with it because I’m collecting the Guardian’s Army Fitness Regime, which is running all week), which I was really proud of – not least because it was really hard work walking back up the hill but I still did it without stopping.

I did discover a minor downfall/hiccup in my walking plans, though – my body only seems to know how to walk at one pace.  Every time I set off walking, I set off at a march.  Great stuff for when I’m trudging my way downhill to the shops to grab the paper, but not so good when the hill slopes the other way.  I set off out the front door of the shop this afternoon and headed up towards home and within 30 metres I was shattered.  It took me a second recovering my breath at a road crossing to realise that it’s actually OK not to walk flat-out all the time.

Still, even walking at no-100% effort, I still worked up a good sweat and got myself out of breath, which is the main idea of the walk anyway.

As for the sickness, my guess is that it’s down to the charming new drug they’ve put me on, the once-a-week Fosomax (Alendronic Acid), which is designed to counter-act the effect of the steroids I’m on in weakening my bones.  Specifically, according to the leaflet, it’s for “post-menopausal osteoporosis” – my docs clearly neglected to mention that a side-effect of transplant is the menopause.  I’m gutted.

Anyway, if it does prove to be the pills, then at least I know that by the time it’s worked its way out of my system tomorrow morning, I’ll be feeling much better.  It’s only once a week, so I’m sure I’ll learn to tolerate it in the long run, however horrible it might seem right now.

Tomorrow, if I feel better, promises to be a better day, with the potential of a trip to the cinema and/or Borders on the cards it should be a great way to cheer myself up after a dip in form.

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.