Archives: Day-to-day

This is going to be a short summary of how we got to where we are, but suffice it to say that the end result is WE’RE GOING TO HAWAII TOMORROW!!!

It’s been a crazy last 8 days, starting with feeling slightly odd leading right up to Saturday’s blog detailing my admission. My lovely new iPhone then decided to stop working as an internet-receptacle so I couldn’t update the blog any further.

The docs essentially said on Saturday that they a) had no idea what was wrong with me but b) that it looked pretty bad. Although the X-ray techs refused to CT me, the docs between them had come upon the summation that it was some kind of chest infection which meant that whatever happened, Hawaii was off.

When they came around Sunday they told me I was well enough to go home – they still didn’t know what it was but the 24 hours of oral antibiotics they’d had me on were seeing my infection markers dropping and things looked OK. I thanked them and they left.

Them then team leader reg for the weekend came back in and asked about Hawaii. Essentially, he said, they needed to ask themselves 3 questions as my doctors:

1) Was I well enough to go?
2) Was I a danger to other passengers on a plane (ie, through Swine ‘Flu etc)
3) Was I fully insured in case anything worsened or happened beyond what they’d observed.

The answers, as he gave them, were:

1) Yes, as far as they were concerned.
2) No, as they didn’t believe I’d had Swine ‘Flu in the first place
3) They would need me to see.

Cue a frantic rush around last night to try to find out what our insurance policy covered. What we came up with was that because the admission happened before I flew, the chest infection then counts as a pre-existing medical condition which they must be made aware of or no treatment related to it in any way will be covered while we’re away. Being a Bank Holiday weekend, this meant that we were now unable to inform them of the change until we flew, which essentially voided the policy.

Cue frantic scramble to find a company that would cover me for CF, lung transplant and a resolving chest infection – all three of which would need to be covered if I needed any treatment for an exacerbation of my current condition. After a pleasantly home-bound night’s sleep we spoke to a company this morning and – in brief – we shelled out a very large amount of money to ensure we didn’t have to claim back a slightly very larger amount of money for canceling the holiday and we were set to go.

Cue frantic running around the Bank Holiday shops today to fill my uni shopping list, my holiday shopping list and still get back in time to pack it all into boxes, bags and suitcases in time to head over to the ‘rents this evening for dinner and sleeps so they can run us to the airport at silly o’clock tomorrow morning.

It’s been a total whirlwind and both K and I are pretty overwhelmed by it all, but the bottom line is that we’re on our way to Hawaii. And when I get back I’ll have less than 12 hours in Liverpool before the start of my first ever term of uni. At the end of it all, things couldn’t really be more exciting. I just wish I’d done it all in a slightly more boring and less melodramatic way.

I really should learn to keep my mouth shut. Less than 24 hours after confidently blogging that I was on the mend I find myself on the ward at Harefield stuck in my own private episode of House.

I woke on Friday with a much chestier cough and weakness in my legs and – after chatting to my GP and after he chatted to the registrar at Harefield they decided that the best bet was for me to go to Harefield and get properly examined and worked up by the pros.

The biggest down point appeared to be that it was looking less and less like something that is fixable by the time we’re due to leave for Hawaii. We’re fully insured for it, but to be honest the money was the last of our worries.

Arriving at Harefield I was popped in a room and prodded and poked about a bit before sitting down with AP the reg to go over the options.

K and I, being big fans of Hugh Laurie in House, almost burst put laughing when AP actually said, “differential diagnosis”.

There seem to be 3 viable options did everything this week and the condition I’m in now: 1) Swine ‘flu, plain and simple, for which they can send me home with Tamiflu and let us go to Hawaii. 2) A recurrance of the CMV I was admitted with last year, for which they can send me home with a course of Valganciclovir and let us go to Hawaii. 3) A chest infection, either as a result of, independent of or additional too some kind of ‘flu or virus, which would be game over for Hawaii

So I’ve now been bled dry and X-rayed, but the blood results won’t be back until later this morning/afternoon and I’m down for a CT scan at some point today after the X-ray was inconclusive.

It’s a pretty horrible feeling sitting around waiting for test results that will dictate whether I can go on my guest holiday in 6 years or if, like May 2008, my body has conspired to stop me having ant foreign fun at all.

Keep your fingers crossed – I’ll update the blog & Twitter once I know the score. Suddenly “Smile Through It” seems ever so appropriate again.

All this rushing around doesn’t seem to suit me. No sooner had I blogged about all the necessaries for holiday and uni prep than I started feeling a little pesky with a bit of a sore throat. Monday night I woke at 4am with a roaring fever and raging headache splitting my very delicate and uni-bound cranium in two.

After fighting for more sleep, I eventually hauled my butt out of bed at 8am to spend an hour tossing my cookies in the bathroom. When I managed to stop hurling for five minutes I dragged myself to the phone to call the ‘rents and tell them I suspected ‘flu.

Funnily enough, at the time I was more concerned with not passing it on to K as having it 8 days before we’re dye at the airport for Hawaii is bad enough but if it were to gestate a little longer and hit her 5 days before we flew, our holiday could be in very real danger.

Mum and Dad thus rode to my rescue and I’ve been holed up in quarantine at Chez Parental for the last 3 days, with regular GP visits and Harefield consultations. Tuesday was the most concerning day as I kept being sick, a very bad thing when my new lungs are dependent on oral immunosuppressants to keep working properly.

One very sore injection in my left butt cheek later (still hurts, by the way) and the vomiting, though not the nausea, stopped and from there on in I’ve been improving all week.

Now all but mended, I’ll be heading home tomorrow to finish off my uni and holiday packing which I’ve so far abandoned K to. My lung function is looking good, so despite the slight cough I’ve got I’m confident there’s nothing serious going on.

It’s been a pretty rubbish week, bur with so much coming up in the next few weeks I’m kind of glad it happened now and hasn’t – touch wood – spoiled either the holiday or my first weeks at uni.

Lots to do and little time, but still enough to reflect on the marvel that it post-transplant recovery. Had I fallen I’ll a week before flying abroad pre-transplant there’s no way I’d have been fit to leave the country. Thank heavens for the gift of life – a phrase that gains more meaning and resonance each and every day.

After the whirlwind Thursday last week where everything fell into place for my next 3 years of life in a matter of hours, the repercussions hit hard over the weekend.

First off, I wanted to make sure I’d spoken to all the people that matter before plastering the news all over my Facebook and Twitter pages, so I spent a couple of days chasing down all the people who would be directly affected by the decision, including TJ, my wonderful boss at the Grove who helped me enormously by giving me my first job post-transplant with the Youth Theatre there. I also spoke to PC, the YT leader at the Grove, and to a couple of my friends, including a very close friend whose wedding I will now miss as it falls in the middle of my first week at LIPA.

I think what shocked me the most was that not one person sounded let down, disappointed or upset by it at all. The response was uniformly and heart-warmingly brilliant – everyone was so excited that I’ve finally got this chance. As soon as I’d announced it on Facebook I was inundated with messages of support and congratulations and people wishing me well.

Right now I’m more excited than a child on the first Christmas Eve they fully understand the implications of the following day – I’m absolutely loopy about it all. I do, however, have an awful lot to do.

In our wisdom, K and I decided at the start of summer that we needed a really special holiday away to celebrate our new freedom, so we booked ourselves 2 weeks in Hawaii – a truly dream holiday to spend time together, chilling out and relaxing.

Neither of us can wait, but we leave on the 1st September and return on the afternoon of the 13th. I then have to be at LIPA for 9am on the 14th, which is to say the least a bit of a rush. My first day is now no doubt going to pass in a haze of jet-lag and exhaustion, I just hope I can manage to hold some form of conversation with the people I meet.

What it also means is that I have to have everything sorted for uni by the time we leave for Hawaii giving me precisely 12 days from the day I was accepted to square everything from accommodation to finance away. That’s now just 8 days. When we went on holiday to the Caribbean when I was younger, we used to be told numerous times how they consider that “rushing is what mats are made from”. This week I’ve discovered and will no doubt have drummed into me that the same rule does not apply to the UK – and especially not to country-fleeing uni students.

The truth (and the new-look, uni-fied blog) is out and I’m ecstatic, truly, truly over-excited and jumping around like a small child after a Sunny D and Haribo smoothie – I’m going to uni. But not just any uni (why do I want to write “A Marks and Spencer’s Uni” there…?) but the Liverpool Institute of Performing Arts, LIPA, the academy of arts founded and patron’d by Sir Paul McCartney.

When I was a mere wisp of a lad at 16 I spent 2 of the best weeks of my life up in Liverpool at a LIPA summer school and have wanted to study there ever since. When I left school at 18 with doctors heavily advising me that it would be severely detrimental to my health to attend any university, I pretty much gave up hope of ever studying at all, let alone at my dream uni.

However, the idea of going to uni has been playing around in my head most of the summer as I’ve been battling my daemons and fighting to work out what to do with the rest of my now very open life. I had completed and submitted a UCAS Clearing application and sat waiting for A-Level results day to see what I may be able to find.

First thing in the morning, I jumped on and was surprised to find a course advertised at LIPA as they don’t usual support the UCAS system. So I gave them a call and spoke to a nice man who had no idea what I was on about. After a short while of to-ing and fro-ing he seemed to recall a late decision to include the course in clearing and suggested I send a CV over.

Having prepared my UCAS application and not much else, I hurriedly cobbled together an appropriate-looking CV for the purpose and emailed it across. I dashed over to Mum’s to have a quick chat and got a call while I was there from the lead tutor on the course offering me a place. It was that quick, that simple and that utterly amazing.

I will be studying a 3-year BA(Hons) in Theatre and Performance Technology, which covers pretty much all bases from lighting and sound to stage and production management with elective modules in directing and incorporating video into live performance. The course couldn’t have been better tailored for me and the opportunity couldn’t be more perfect.

I cannot even begin to express my thanks that I feel for my donor. While you’re reading this, please take a moment to think of their family and the precious, precious gift they gave me nearly 2 years ago. Without their courage and selflessness and the wishes of my donor, I wouldn’t be here, let alone physically able to pursue this opportunity. If you’re not already, go here right now and register as an organ donor – you may just change someone’s life like mine.

K and I have got a manic week getting everything squared away before our holiday, but for now I’m just floating on a cloud of magical happy vibes. Or it could be the Haribo…

Quietness lately has a lot to do with nothing much going on. I’m not working this summer as there’s very little about arts-wise, and I’m still trying to work out what to do with my life. Updates when I have any.

I did, however, manage a double-bill at the flicks yesterday, catching a gorgeous digital presentation of Dr No, the first Connery Bond (and the first of what we all know and love as the “James Bond Films”, although it actually followed an ill-fated adaptation of Casino Royale by other filmmakers) and The Time Traveler’s Wife[sic].

Dr No was great for being a bit crap. It’s clearly not a bad film, but very of it’s time, it’s time being 1962. It’s got some Hitchcock-rivaling rear-projection for the most unexciting car chase ever filmed, although it did have the added comedy value of screeching tyres when the were driving on gravel. It’s also astonishing to see just how much of Dr No specifically Mike Myers lifted for the first Austin Powers film – I had always reckoned it to be a generic pastiche, but it’s closer to Dr No than any other Bond.

The Time Traveler’s Wife is a book I loved and a film I didn’t want to get to excited about lest it spoil it for me, as many adaptations do (just ask people who’ve read Harry Potter and the Half-Blood Prince). After a clunky, over-written first half-hour of some frankly stupid dialogue, the rest of the flick picked up a-pace and delivered all the emotional punch I wanted from it. It’s not beholden to the book, but manages to create almost the perfect adaptation by creating the same pitch and emotional feel of the book without being slavish to every single page.

We go away on holiday at the end of the month, so I’ve got a lot of late summer flicks to cram in before we jet off – that’s what I like to think of as using my time productively.

It’s been a pretty rough time of late and, if I’m honest, I’ve been struggling quite a lot. I’ve not really felt like blogging for quite a while as I’ve been battling with my own daemons and not really wanting to share them with anyone else.

Over the last couple of weeks it’s been slowly emerging why I’m feeling like I am and I’ve come to a few realisations that will hopefully put me on the right path for the next little while. Essentially, I realised, I don’t know how to be well.

I’ve spent so many years ducking and diving in and out of hospital, but since May 2008 I’ve not been admitted, not really been unwell, not had a cough, a cold or so much as a bad case of the hiccups. It’s been all plain sailing and that’s not something I’ve really experienced before – my life has always been broken up into chunks of illness and relative wellness.

What this means is that real life is starting to intrude with a vengeance. I’m actually having to start thinking about “the future”, something that’s always been an alien concept to me as I’ve never really believed I’ve had one. I’ve never planned more than a few months in advance because everything’s always been so unpredictable that I couldn’t. Even last year I had to miss the holiday we’d planned because I was hospitalised with CMV. So it’s strange to be forced to sit down and work out just what the future holds for me, for K and for everyone around us.

I’ve been struggling a lot with making the most of my new life, too – I want to do everything I can to honour my donor but right now I don’t feel that I am. I want to challenge myself both physically and mentally and push myself to find where my new boundaries are, so I’m looking at ways of doing that to make a dedicated, concerted effort to make the most of these lungs and to help my donor to smile down on me and feel proud of the life they’ve given me.

It’s been a tough haul over the last month or so and I’ve had to make some really tough decisions and I know I’ve got some really tough ones to come, but I’m starting – slowly – to feel more confident and energised about what’s on it’s way. I will try from now on to keep this blog more up-to-date with what’s happening and, in particular, my thoughts and feelings about things as I know from before my transplant it can actually be pretty therapeutic.

I can’t promise it’s all going to be sunshine and lollypops on here, or that it’ll even end up being that interesting, but I can promise myself that continuing to write “smile through it” may help to remind me of the long-lost days when everything was a chore and I had more to worry about than not having plans for next February.

Here’s to life: living it, loving it and smiling through it.

I guess there’s ambition and there’s stupidity and I’m guilty of the latter.

I was so passionate about getting this flick made that I hadn’t stopped to look at the practicalities properly, thought it all through or taken the time to develop a team who could help out with the production side.

Naiveté can be a wonderful thing in some walks of life, but not in filmmaking. I underestimated the task in hand and the likely support for it and I overestimated my own ability to deliver.

Do I feel foolish? Yes. Will I plough on and keep chasing my dreams? Of course.

This blog – back to it’s original incarnation – may well cease to exist now, or become much less frequented. When I started writing here, the idea was to talk about my journey to transplant. I’ve been there now, I’ve passed that life-saving, world-changing milestone and I don’t now want this blog to turn into yet another “today I had a ham sandwich” diatribe about the world’s dullest daily life.

So feel free to check back every now and again and see what’s happening – or even better add me to an aggregator like Google Reader and then you’ll see whenever I throw something up.

Take care of yourselves and never give up on what you know is right for you.

Just North of London today I met with our military adviser about the impending shoot. They’re 100% behind us and are providing all manner of costume, equipment and research material, not to mention (fingers crossed) our main location, which is both awesomely unbelievable and totally unprecedented for a short film.

We’re waiting on one final go/no go from their ranges to see if we can shoot on the dates we want to, which should come through to us on Monday. All being well it’ll then be all systems GO! for an amazing, life-changing movie for everyone involved.

And don’t forget, YOU can be involved, too! All you have to do is click the link and you can become a Producer on Remembrance by helping us hit our budget target in time for the shoot. Every penny counts, so even if you can’t meet the pre-set amounts, hit the “donate” button and chip in what you can. And if you happen to be flush right now, there’s nothing to stop larger donations, either. And you get to see your name in the credits, too – and you get a free copy of the film when it’s all done.

This is all ramping up to be quite exciting just now and the pedal is about to hit the metal – come along for the ride!

There was I hotly anticipating my return to work this week and getting really rolling on Remembrance when I was flattened again. This time not by small children, but by some kind of a stomach bug. It’s left me totally wiped out and exhausted for the last 3 days and I’m only just getting back up to speed. Sucks quite a bit.

I have to confess I’ve been a little worried about things. If you’ll remember, last year’s CMV infection started out with weird pains in my chest and stomach, so a recurrence of similar and apparently inexplicable symptoms has rattled my nerve a little bit. I’m sure it’ll be fine, but I think after so long of being well my mind is maybe a little pre-programmed into expecting something bad to be due me. A stupid thought process, to be sure, but one that’s hard to avoid after spending 25 of my 27 years as a seriously ill person.

Anyway, the upshot of all this is that I’ve achieved nothing at all this week, which is obviously sub-optimal. Added to which, since I’ve been doing nothing but lay in bed all day, I’ve got into a horrible sleeping pattern and am up until past 3 in the mornings at the moment – never a great thing for aiding recovery.

I’m due in to my GP surgery tomorrow morning for some blood tests and I have a scheduled appointment at Harefield on Monday so hopefully this will all either have cleared up by then or we’ll be able to tell exactly what it is.

In the meantime, the one thing I have managed to do is to draw up a shortlist of DP candidates, who I’ll be meeting next week to have a chat with and go from there. It’s exciting stuff, I just wish I had more energy for it right now.