Archives: Transplant

So today was the culmination of months of work from on of the LLTGL advocates, Holly Shaw, who’s been taking part in the Channel 4 young people’s campaign show Battlefront pushing Organ Donation. Her campaign – Be A 2 Minute Hero – based on the idea that it takes 2 minutes to sign the organ donor register, the same time it takes to make a decent cup of tea, has really captured the attention of many, many people.

Today alone the online registrations for the organ donor register have increased from the usual average of 200 a day to 3,200! That’s simply insane. It’s one of the biggest jumps the ODR has ever seen online. Not only that but since 1st April, the average sign up rate has risen from 200 per day to nearly 600 per day, another astonishing figure. Of course, the average number increase may be coincidence as it’s not 100% provable, but it’s a pretty staggering coincidence if it is.

Holly has been working incredibly hard for us since before we were a charity so to see her a) well enough, post-tx, to carry out such a massive campaign and undertake such massive amounts of work and b) brave enough to do it all on live TV and recorded for a Channel 4 doc when she wouldn’t even do pre-recorded media when she joined us is absolutely fantastic.

I went down to London after my day on the Easter Project at the Grove (more of which later in the week when I get chance to draw breath) to join the team for a celebratory drinks event to round out the day.

I arrived at 7.30 after a mamouth journey thanks to the frankly apalling service on London Midland, which I won’t get into here because this is a post about Holly and not some total failure of a train company who are staffed by incompetants and provide the worst customer service since Basil Fawlty but without the humour. When I got there the lady in question wasn’t actually there, having been whisked off to the Sky News studios to do a live interview about the day.

This was far from her first media coup for the day, having convinced the Metro to replace the “O” in their masthead with a heart and include a major organ donation story with photo to promote the day, as well as sitting on the sofa with Ben Shepard on this morning’s GM:TV and seeing articles either in or headed for both the Guardian and the Mirror.

When she got back, she also revealed that she’d had a phone call suggesting she look on the PM’s website where, sat at the top of the front page was a headline leading to this article on his support for her campaign. If that’s not a coup, what is?

It was a great evening for mixing, networking and general back-slapping for Holly and her Battlefront team, including Emily from LLTGL who provided invaluable support both in kicking the campaign off just after Holly had her transplant and latterly in seeing the Donor Day through with her all day in Canary Warf.

Holly’s Helpers all over the country set up Donor Desks in their local areas and the numbers from NHS Blood & Transplant go to show just what a difference they all made. It’s an astonishing achievement and I for one am hugely proud.

So, if you’re not already, stop reading this and be a 2 Minute Hero – put the kettle on and sign the organ donor register. Now.

Not like that.

After a fun night of snowballing on Monday, Tuesday started slowing me down a little with a scary kind of feeling that I had something brewing. As it turns out, I did, but it was only a cold.

It feels quite good to sit here at a keyboard and type “only” a cold – as one of my friends put it in a text on Thursday, a simple cold used to be a serious issue to me. It would have me worried, K worried, my parents worried. And we’d ride it out and get in touch with my team at Oxford and sort out some antibiotics to treat the inevitable chest-infection that would have followed.

Now, having a cold means I feel a bit rubbish for a couple of days. I love colds like that.

Still, it does have its drawbacks. Since developing my cold on Tuesday night, I appear to have returned to a previous life as a hardcore insomniac. Since Tuesday night into Wednesday, I’ve been sleeping appallingly. Indeed, I sit in the lounge writing this now at nearly 4am and I’m still not feeling anywhere near tired enough for sleep. But during the day I’m becoming Zombie-fied.

This week has been a fortuitous week to be stuck with insomnia, however, since the snow has meant any work I did have lined up has been cancelled and, as of Thursday, we’ve been properly snowed in. I say “properly” but that’s not 100% accurate. What I mean is that we can’t drive anywhere, which, in Milton Keynes, the city modelled on American-style grid-road systems, is a bit of an obstacle.

Yesterday I did manage a wander down to the shops at the bottom of the road, which is somewhere in the region of a mile’s walk, and discovered that traipsing through snow is incredibly hard work. Coupled with the cold, it left me exhausted. I was certain that it was going to help me sleep better in the evening, but no dice. Another hour of lying in bed tossing and turning lead to me getting up and staying up until I finally all-but-passed-out in the late-early morning hours.

So now I’m sat back in the lounge watching 4am tick ever closer, ploughing through more of the extras on the new Lord of the Rings Extended Edition Box Set I picked up from the now-defunct Zavvi in CMK and charging myself up with the drive and passion to go out and make at least one of the short film scripts I have lying on my desk just waiting to be tackled.

I just need to find a cast…

After over a week of editing, re-cutting, designing and burning DVDs I finally finish the Creative Partnerships project I’ve been working on for the best part of 4 months now (not constantly, you understand…), spending almost all of Monday printing and sticking DVD labels onto the discs. Note to self: must get DVD-printer.

I’m immensely proud of the DVD, even if it’s not what the original intention was at the start of the project. Due to the nature of drama projects and the unpredictability of working with 5- and 6-year-old children, the whole project changed and shape-shifted into something entirely different. I’d love to put it up here to show people but since, technically, it’s not mine to show and also – more importantly – given the fact that it’s got minors in whose parents haven’t consented to internet exploitation, I can’t. You’ll just have to imagine it being brilliant or come over to my place and watch it.

It’s been an interesting test for me to make my first own-steam short documentary that I’d have to piece together into a coherent whole for other people to see and take home. Up to now all my filmmaking has been for Live Life then Give Life which is great and brilliant experience, but it’s a very simple, single-camera interview set-up which doesn’t take a huge amount of skill. So to be responsible for something from opening image to final cut is really something special.

What made it all the more worth it was the reaction of the kids when we screened it for them in their classroom. They all loved it and were even air-guitaring along to the montage soundtrack and pointing each other out all the way through it, which was lovely to see. From what I gathered the staff liked it, too, which is always nice.

After the school meet and an evaluation Mocha with Suze, I got back to the office to discover a message from a media-man from a very well known film company looking to partner with LLTGL on a DVD campaign coming up shortly. I can’t go into too much detail as it’s still being discussed, but it is potentially a very exciting development for LLTGL.

In what’s turning out to be a great week for LLTGL, we have also had an offer of a major advertising deal which we need to address but could see us putting the word out to over 700,000 at one time if all the pieces fall into place. We’ll see.

To top it all off, it would be remiss of me not to plug the LLTGL Valentine’s Day Cake Bake, which we’re holding to raise some funds to continue all the work we’ve been doing and expand our operations in line with our current business plan. I won’t bore you with the details, but if you want to help us out and you’re a fan of cake (and let’s face it, who isn’t?) then head straight here to find out about it. Or you can find us on Facebook, too.

I apologise for the lack of updates after my not-too-rubbish start to the year with regular updates etc. I have, however, been somewhat preoccupied over the last couple of weeks with various mentally-busy work-related things, including producing a DVD of a project I worked on last year and completing a First aid course for work at the Grove.

Most excitingly of all, though, is the fact that I’ve been settling in to my new role as Chairman of Live Life Then Give Life, something of which I’m very proud. Our former Chairman, Emma, has felt it necessary to stand down, although she will, thankfully, be staying on as a much-valued trustee. At a meeting two weeks ago, the rest of the board of trustees saw fit to elect me into post as Chairman and I’ve been pretty much rushed off my feet ever since.

I clearly chose precisely the wrong two weeks to step up into the new role, having spent my first week in post working 10-4 on First Aid every day and my second week locked in my home editing suite to cut, design and finalise the DVD for the schools project I worked on with Suze last term. There’s a showing of the vid at the school on Tuesday morning, so it’s the usual deadline-getting-your-butt-into-gear deal as I rush to make sure it all looks tip-top.

Despite the fact that it’s taken me a lot longer than I expected, I’m really proud of the result – it’s going to be a great representation of the project and a great show real for both my work and for Suze’s Catalyst Theatre Arts, the company she runs with her sister, who throw a lot of work my way so it’s nice to be able to give them some marketing material out of it, too.

So it’s not been the best of weeks to try to get to grips with all the extra bits and bobs that go with being a Chairman as opposed to a trustee, but I’ve already seen a whole new side to the charity and what we do. I’m also delighted to see the way our two new trustees have slotted in to the team. The problem with having a team that’s as close-knit as the Live Life Then Give Life team are is that when you introduce new people to the equation it can be difficult for them to find their place and not feel out-of-the-loop or left out. But the current board of trustees have really taken to the new guys and have been working brilliantly with them from Day One, which is such a great feeling not just for me but for eveyone.

Hopefully now things are on a slightly more even keel, I’ll be keeping the updates coming through on a more regular basis. Unless work gets manic again, I guess…

The alarm arouses us both at 7am and we roll somewhat lazily out of bed, showering, dressing and packing an over-night bag to take with us.

I run K down to the hospital for an acupuncture appointment and head back to the flat to collect the bits and pieces we’d realised we’d forgotten on the way down there, most notably the iPod, which would have lead to some 5 hours of driving forcing Radio 1 on us.

I get back to the hosp just as K is coming out – impeccable timing – and we head straight off for Oxford. We get there surprisingly quickly after a near-miss with a mini-coach which decided to pull across my path while I was trundling along the country road at 60. We park up at St Giles and walk down the freezing cold street round the corner to Blackwells, the awesome pre-Borders Borders at the heart of the student world of the town. K’s never been there, so I delighted in showing her the wonderful underground cavern that disappears beneath the house-front of the shop on the main street.

We spend half-an-hour wandering aimlessly around and I grow slightly disappointed at the absence of a lot of the books that got me excited last time, although knowing how much I could have spent if they were all still there, it’s probably a good thing they weren’t. On our way out, we head up a staircase that I’ve never ventured up and we find ourselves in a whole new part of the shop with modern fiction (classed as anything from 1950-odd) and a brimming children’s section.

K finds a whole load of her new-favourite Jasper Fforde books – a necessary since I’d been nice and picked some up for her without realising they were an official series and so needed to come in a specific order. Order restored to her collection and a bizarre comedy book bought for our host this evening, we departed across the street so I could wander through their Art & Film shop, where I am torn between two books and end up getting one which will hopefully positively impact the production levels of the Live Life Then Give Life docs that we’re shooting through the year.

We wander back to the car through the positively freezing winter’s air and pick up a copy of the Big Issue from a poor guy who looks like he’s on the verge of frostbite but still has a cheery smile on his face and is genuinely grateful when we pick one up. We’d passed him on the way in to the town, but not had change and I think he recognised it as the classic excuse for not buying – he seemed really surprised that we’d actually gone back and got one.

We headed up to the Nuffield to get my bone-density scan done, just a precautionary scan to keep a check on how my calcium levels are doing and how brittle my bones may be as it’s pretty common with CF to develop osteoporosis and can be exacerbated by some of the transplant drugs I’m on.

Post-scan we head across the road (and round the corner a bit) to the Churchill to catch up with my CF team, who now I don’t have my port in anymore, I have little reason to see apart from the odd check-up or annual review. It’s great to see them all and catch up with the gossip including flicking through the slideshow of one of the physio’s weddings which was being planned when I was last incarcerated in the Churchill – it seems like such a long time ago now, it really is like another life.

Catch-up out of the way, we leave them to treat the patients who need them more than me and get on the road up to Bradford. The motorways are pretty clear, barring a little bit of late-afternoon traffic around Sheffield and we hit the M62/606 around 5ish, then whack the Sat-Nav on and hunt out Dazz’s place of work, where we drive straight past him in the street. The man collected, we head over to Shipley to his new flat and commence the warming of said homestead both literally (given the chill-factor) and metaphorically (it being a new pad).

We chill and chat and eat and watch DVDs and generally have a giggle, while I spend half-an-hour sorting some Live Life stuff for tomorrow in the middle of it. Dazz has also brought all his retro gaming North with him, which includes an ancient Game Gear with Lemmings on it, which keeps us all entertained for a large part of the evening as the conversations are punctuated with outbursts of swearing at misbehaving creatures hurling themselves to their deaths.

Around midnight, we all decide to call it a night and then spend an hour trying desperately to inflate Dazz’s new air-bed, which has to stand in for the sofa-bed which is due to arrive next week.

Eventually we flop into bed around 1am and near-enough pass out.

It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.

I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.

First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.

She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.

At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.

By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.

Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.

It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.

Sign up. And Talk.

I often laugh at the BBC local news when they run Transplant-related stories – they’re so hackneyed and cliché now that you can pretty much use the same voice-over and just change the pictures.

But I had to eat my words this evening when I got this link through to my friend Sally’s report that went out this lunchtime.  It’s hard to think that a little over a year ago I was in exactly the same position – here’s hoping that this time next year Sally’s in exactly my position.

So no one actually explained to me that having your shoulder sliced open actually causes a modicum of pain.  Who’da thought?

Most of this week since Wednesday has thus been a write-off, what with the lack of ability to move around and use the arm in question and the slow-down caused by the Tramadol to eliminate the pain.  Still, I have to say it’s been nice to actually have some enforced down-time and not spend most of the days at my desk.

The time off has actually helped me to develop a new idea I’ve had for a screenplay I want to start work on, which is always welcome.  I’ve actually had the idea running around my head for a while, but it’s just been cementing itself a little more in my brain to the point where I feel I can start shaping it into something that can work.

With regards to anything else in life at the moment, I don’t really have a lot to say after three or four days of doing nothing, so this is – I guess – a fairly pointless blog, but is probably more of an attempt to atone for my lack of blogging over the previous couple of weeks.

Oh, and if you’re a Batman fan and you fancy a giggle, check these guys out.  Very funny.

So I’ve managed to get myself into trouble with… well… everyone this week, although I personally blame K for it, since it was her status update on Facebook which drove the minor frenzy on Wednesday.

Following my extremely positive annual review at Harefield a couple of weeks ago, Doc C lined me up to have my port-a-cath removed – that’s the small venous access device that sat under the skin on my shoulder and was used to pump my regular IVs into me when I was on them every few weeks, less painful and much less hassle than having longlines and cannulae.

Anyway, Doc C is really happy that I’ve progressed enough now that it can come out, basically saying that I’m not going to need IVs again, that to all intents and purposes, I’m “better”.

To my surprise, having thought it would take at least a month or two to sort out a port date, they phoned me last Thursday and arranged for me to come in on Wednesday and have it taken out by one of their surgeons – and who says the NHS isn’t fast?

So off I toddled, with Dad driving as I wasn’t too keen on ferrying myself back home after having my shoulder sliced open, own to Harefield on Wednesday morning, fully expecting a quick and painless procedure under a local anaethetic and then to be shipped off home.

Upon arrival and talking to the surgeon, however, i became clear that there was a large possibilty of the line causing problems with bleeding etc during the op, so he wanted to knock me out under general anaesthetic so I wouldn’t have to put up with the rather over-dramatic process of fixing things up once he’d cut me open.

Of course, the time before last that I ad a general, I ended up on intensive care – nothing to do with the anaesthetic, mind you – but this set alarm bells ringing for K, who posted an update on Facebook saying she was worried about me and my op.

Having thought it was only a minor, local thing, I hadn’t actually told anyone about going in to have it done, other than my ‘rents and K’s and the people I was supposed to be meeting with that lunchtime.  So, naturally, everyone who read the update panicked and starting sending all sorts of (lovely) concerned messages to K to find out what was going on.

I thought I’d help matters once I was straight-headed again yesterday by posting my own update apologising for not telling people.  Only then it got read by all the people who’d missed K’s status update and so still didn’t know, who then got the same level of worriedness about something that had been and gone and I got plied with even more (lovely) concerned emails and was once again berated for keeping it to myself.

So, for the record – apologies to everyone that I didn’t tell you it was going to happen and apologies to those people who we worried by not explaining ourselves properly.

Also for the record, everything went fine, there was no extra bleeding and my mini-lifeline that’s been in situ for over 13 years slid out nicely under the surgeon’s deft hands and now, presumably, lies in a pile of ash at the bottom of an incinerator.  Weird thought.

My shoulder is still pretty sore – hadn’t really thought that one through ahead of time, but it’s a bit obvious really – but I’ve got good painkillers to deal with it and I’m now able to walk about and generally use the arm, which is a good deal better than yesterday.

I solemnly swear from now on that any and all procedures that I know about in advance will be adequately diarised on here BEFORE they happen so that we don’t freak anyone else out.

Sorry.

One year ago, precise to the nearest hour (rounded up), I sat as I do now sitting up in the middle of the night while all about me are sleeping.  That night, 366 days ago (leap year, before you correct me), I wrote:

“I can only hope that [this new low] marks the nadir of my fortunes and that things are all-the-way upwards from here.”

as part of this post.  Little could I know that within 24 hours everything would have changed and that what I was writing then would prove to be so eminently prophetic.

I don’t know quite why I am unable to sleep this time – I know, thankfully, that it’s nothing to do with the intense physical struggle I was fighting a year ago, nor is it a concern about how imminent my death may prove to be – but I suspect that it’s the knowledge that a year ago today marked the point at which one person’s life ended and gave me the second chance I had craved.

I’ve never really struggled with the idea that for organ donation to be viable, the donor must be deceased – certainly in my case.  But something about an approaching anniversary makes you re-assess things you take for granted.  I suppose it’s why New Year brings so many resolutions.

More than that, though, I suspect it is the knowledge that over the last 12 months I’ve seen two friends lose their lives in the way I always imagined I’d lose mine and – just this week – a very close friend lost his 14-year-old son.  Standing on their doorstep to offer our support and help in any way we could, their grief was over-whelming.

I have been much blessed in my life, not least in that I have never lost anyone of my immediate family at an age where I was aware of the pain it caused all those close to me.  I’ve never fully appreciated the wrench, the true sickness inside, of losing a member of your family.  Of course I remember my Nana – just barely – and my Granddad, but I have no concept of their deaths when I was 3- and 5-years-old.  I remember more clearly the death of my Grandmother two years later, but only in as much as that Daddy was sad and I wasn’t allowed to go to the funeral.

Never before have I touched – or been touched – by such heavy, all-enveloping grief that weighs on the family like a leaden cloud, which rains down tears of desperation and confusion without any seeming hope of the oft-fated silver lining.  A grief which swallows people up and prevents them from seeing anything around them, or even in front of them.

It occurred to me, sometime after that doorstep encounter, that while my family and I were rushing to hospital a year ago this evening, another family were in the very first stages of just such an overwhelming feeling of loss and despair.  And now, one year on, they must be thinking back to that fateful day and wondering if anything more could have been done.

As I’ve documented on here previously, I know nothing of my donor, nor their family.  I can only imagine the circumstances under which they came to be in a position to save my life and mere conjecture is all I can muster towards how they dealt with it at the time.

As I prepare to celebrate the first of my second birthdays with a party on Thursday night, I am overcome with the thought of the loss someone has had to suffer for me to be here.  All I want is to know that whoever my donor may have been, they are smiling down on me now and are proud of what I have achieved since they gave me a second chance.

I want to know that they believe I am worthy of the gift they have given me, that I have done my best to make the very most of the lungs they bequeathed to me and that if they could, they would be telling the ones they left behind that I am fit to carry on in their stead.

19 November will live forever in my mind as the day my donor died, quite separate from 20th November – the day my new life began.  And I’m grateful to have the two separate days to honour – the one to mourn the passing of the person who saved my life and the second to give thanks for the life I’ve been given and to surround myself with my family and friends who make it all worthwhile and make me feel worthy.

I heard a quote from Nietsche on the radio today,

‘He that has a “why” to live can deal with almost any “how”‘

With the knowledge of the sacrifice that was made in my name and a determination to be the best I can be, “how” I live will never be an unconquerable hurdle, merely a method of honouring the “why”.