Archives: Transplant

Today marked the start of something more than exciting for me.  Last week, Live Life Then Give Life invested in a new media production package of professional equipment with which to document all the activities we’re involved in, as well a creating short films and videos to play at events and talks being given by any of the trustees or advocates.

Today one of our advocates, the irrepressable Nelly Shah, orgnised one of the 108 World’s Biggest Walks that took place at the same exact time (12noon GMT) in 18 countries over 5 continents.  Emily and I headed down (well, she came up) to Stanmore in Middlesex (just off J4 of the M1) to join her and her family on their 5km walk around Stanmore and Edgeware to raise awareness of organ donation and the chronic shortage of donors, particularly in the black and Asian communities.  Nelly, who’s originally from Kenya, has now been waiting for five-and-a-half years simply because of the dificulty of matching her tissue type with such a small pool of donors.

I took our equipment down and shot my first professional documentary pieces, as well as several interviews, which will go into an awareness-raising, high-impact video package for a talk Emily’s giving next weekend to an audience of over 2000 people from the Tamil community.

It was unbelievably exciting and I’m so amazingly pleased to have been given the opportunity to do this by the guys at Live Life Then Give Life who have placed an enormous amount of trust in me to deliver high-quality product to help the charity achieve its objects.

Of course, that’s only half the task, I now have to assemble the footage into usable pieces – one for the website to promote the walk and one, longer, piece for the talk DVD, which will also include an interview with two parents who have recently lost their 15-month-old son for want of a liver and small bowel.

It has to be said that I do feel a certain amount of pressure to deliver now, as it was me who spent a lot of time and energy researching the equipment and talking to the other trustees about the benefits and pluses of investing in the camera and sound package.  But, to be honest, I’m actually quite enjoying the pressure as it’s been a while since I actually had any pressure on me to achieve anything at all, so it’s nice to have a target.

It’s been an absolutely manic last couple of weeks, I literally haven’t had more than about an hour to myself in a single day since, well, actually, I honestly couldn’t tell you without looking back through my diary.

Suffice to say it’s been extremely hectic, but pretty good, too, I have to say.

Last weekend was spent with the Live Life Then Give Life gang, hashing out our plans for the next couple of years.  It’s a bizarre feeling to be mapping out plans that I actually believe I have a chance of being part of.  I’ve been so used to limiting my planning no further ahead than the next few weeks or couple of months, but now I find myself looking further and further into the future.  I have often helped people plan for things in the future – I’ve certainly helped Emma and Emily with it before, as I also did with K’s uni application – but I never really joined in with the expectation that I’d ever be a part of it.

Now things are looking brighter and brighter and my horizons are stretching further and further away.  It has just occurred to me that for the first time ever, I think, I’ve stopped worrying about whether or not I’m going to be around for things.  My cousin is just 6 weeks away from the birth of his first child and this time last year and for a good while before that, just the news of the pregnancy would have set me off wondering whether I’d ever get to see Baby P or not.  Sitting on the sofa tapping away now, I realise that the thought of not being around hadn’t even occurred to me up until now.  I guess this is what “normal” life is like!

Anyway, that’s the last couple of weeks.  Today was different again, being as I was engaged to speak at two different events in one day, both for the CF Trust.

First off, was back in an old haunt – the Mermaid Theatre (sorry, Conference and Events Centre) in Puddle Dock near Blackfriars, the very same Mermaid that supplied the venue for the enormously successful Laughter for Life event way back in February/March last year (for some reason I can never remember when it was without looking it up).

The event was a Parents and Carers conference that the Trust had laid on, this time for parents of teenagers following their enormously successful Under-12s conference previously.  I was engaged to speak, rather oddly for me, with my dad, which threw up all sorts of weirdness around having to “plan” what we were going to say.  Anyone who’s ever been to see me speak knows that generally, I just stand up and ramble for 10-15 minutes, but this time it was a joint presentation with Dad on teenage rebellion which was to last 30 minutes.  Nightmare.

Actually, it all went rather well.  The planing process was interesting in and of itself, sitting talking to Mum and Dad about how they dealt with the various ways I found to do myself a mischief back in the glory days of the 1990s.  I clearly put them through a great deal of angst through my teens, even though I don’t consider myself to have been a massively rebellious teenager (I’ve certainly come across many more people with CF who were far worse).

The speech went fantastically, though – we worked very well together as a team and managed to both entertain and inform the attendees, who seemed to spend most of the half-hour slot nodding in tacit agreement with everything Dad said about my various misdemeanors and rebellions.  Glad it helped.

Once that was over and we’d done a quick Q&A panel with the afternoon’s other speakers and spent some time chatting individually to some parents who came up to address specific points with us, it was then time to dith the grey one and for K and I to hop back in the car and head North up the M11 to Bishop Stortford, or there abouts.

One of the regional fundraising managers for the Trust had helped put on a ball for a couple with a teenage daughter with CF and had asked me to come and speak.  The very same Trust-lady who’d had me along to the Press Ball in Ipswich earlier in the summer, in fact.

The night was amazing – you’d have been hard pressed to find any hint of a credit crunch among the 150-strong crowd, who managed to raise by way of pledges and auction bids a total of £43,000.  Phenominal.

I was, to be honest, pretty diappointed with my speech.  The afternoon had taken so much planing I’d frankly neglected the evening’s event and didn’t allow myself sufficient time on the night to prepare myself properly and go over what I wanted to say and do.  That being said, I still received the usual praise from the people I spoke to, but I wasn’t pleased with myself for it.  Must do better next time, that’s how I’ve marked my report.

Still, it’s been a great day and I’ve enjoyed both events greatly.  The CF Trust has offered me so much advice and support for so long and through such tough times that it’s really important to me to continue to do whatever I can to help them and to offer, if I can, some crumbs of comfort or advice to people who may be struggling now.

Someone suggested this weekend that maybe I should think about getting myself on the after-dinner speaking circuit, which got me thinking.  If I was touring the country being paid for my time and talking to groups of business people for inspiration and the like, would I be as good at it as I am at the moment?  Is it the drive to inform and the will to get people to pledge ever-important donations for the work of the Trust or the transplant community that makes the speeches and talks what they are?  Would paid-for talks be able to engender the same passion and commitment?  I honestly don’t know.  Mind you, it can’t hurt to try…

I was planning on going back over the last two weeks and updating the day-to-day entries of the blog to reflect all that I’ve been up to, but I soon realised that a) I’d be here all day and b) I’m not even sure I can remember exactly when whatever happened to me in the last fortnight happened.

To sum up, if you can’t be bothered to read this entire post, I have started two jobs, started a new screenplay project with a friend, pushed a short film project towards production, acquired another short film script, begun developing a slate of documentaries, watched my brother leave for a tour of duty overseas and won a Charity Times Award with the Life Life Then Give Life team for Campaigning Team of the Year.

So, biggest news first, I guess (apart from the Award, which I’ve obviously already covered), I’ve got a job.  Two, to be precise.

A couple of weeks ago, I was looking for some part time work up to my sixteen-hour-per-week limit to retain my benefits (and beyond which I’d need to work a considerable amount more hours) and noticed an ad in the local paper for a hotel looking for part-time bar staff for lunchtime shifts.  After going over to introduce myself and fill in an application form, I text my old boss at the Theatre in MK to ask for a reference for the bar work, since she was the last person who employed me as bar staff (albeit five years ago).

She replied positively, but then said that if I wanted bar work then they could offer me a job.  Without much fanfare, I went back for a training day a week last Monday and started my first shift of paid work for two-and-a-half years on the next night.

It’s a very bizarre mixture of feelings being back at the Theatre.  On the one hand, it’s pleasantly familiar – I know most of the managerial staff (even if high turnover means the bar staff are all new to me) and also where to find most of the things I need during a shift.  The bars haven’t changed much, apart from some of the stock having changed – Becks to Tuborg, for instance, and the appearance of Magners in the fridges.

At the same time, while it’s a safe and comfortable environment to start back into a working life, it also feels a little like a step backwards.  I’m now back doing what I was doing in 2003, before my work with the Education Department and the Youth Theatres in MK and Northampton and before the experience I gained as a Production Assistant/Youth Theatre Production Manager at the Royal.

I guess the way to look at it is that as long as I have the income I need to pay all of the bills, the Theatre work is only three or four evenings a week, which frees me up to work on my own projects during the day time, for which I have a lot more time free now that K has started at Uni.

Thursday was her official first day and it was a bit of an epic one.  The commute means that we have to be up at 6am to get to the station for 6.45/7ish for the 7.11am train to Euston.  Luckily, looking at her timetable for the term, it seems that she only needs a 6am start two days a week, getting a lie-in on Mondays and Thursdays and having Fridays off.  It is very much an atypical Uni course however, having as it does, a full timetable of lectures and lab time.  Monday mornings and Fridays are all the time she has off, Tuesdays, Wednesdays and Thursdays are all 6-8 hour days.  It’s intimidating for her and it’s going to be tough, but I know she can do it and I’m sure she’ll be fantastic as a Speech Therapist – even if that is four years away right now.

As well as starting at MK Theatre, I also went to catch up with my old Education boss at MK, who has now moved to the Grove Theatre in Dunstable, about 20 minutes down the road from me.  Whilst catching up with her, it emerged that she had another Youth Theatre Assistant position opening up to help out with running the Sunday afternoon YT sessions for the eldest two groups of the Grove YT.

Naturally, I jumped at the chance to leap back into the deep end and get my hand in again.  Last Sunday, I enjoyed my first day working with the YT in the first session of term and enjoyed it immensely.  It’s hard work – much harder than the MKYT, actually – but the young people who attend the sessions offer much greater opportunities for rewarding work.

As well as the Grove’s YT, I have also just started work on the school’s project I’m doing with Suze and her newly minted Catalyst Theatre Arts Ltd company.  At the moment, it’s not 100% clear what my role will consist of, as I’m largely there to support the school and do what they need me to do to ensure they make the most of the project.  It’s exciting for me as it’s the first time I’ve worked and been engaged as a “proper” artist, being seen as a practitioner in my own right and not as an assistant or general helper.

Personal project-wise, I’ve now got a producer on board my short film, which will be going into production over a weekend in early November.  We have offers out to cast at the moment and are hopefully of getting a couple of recognisable names, although it largely depends on their schedules, as I’m keen not to push our shoot dates back.

I went to a Screen South roadshow this week, which highlighted the pots of money on offer for short films in the South East of England, but all of them require the director (that’s me) to have a show-reel of stuff they’ve shot before.  This is a bit of a classic Catch-22, but since this film can be shot for next to nothing, I’m hopeful that even though I’ll miss this funding round, the script I’m developing at the moment will be a possibility for the next round.

I’ve also just started writing a feature project along with a friend of mine who’s as keen as me to get writing again.  It’s a low-budget British horror-comedy which we’re hoping will be quite saleable, or at leat easy and cheap for us to make ourselves if that turns out to be the more likely option.

Beyond the fiction stuff I’m working on at the moment, I’m also developing a trio of documentaries.  Two of them are quite immediate and one is longer-term planning.  One, in fact, I’ve already started shooting a video diary for and am currently working on establishing links with the Armed Forces to see if I can take it further.

It’s been a manic two weeks and blogging really took a back-seat to all the other things I was running around doing, but I’m sincerely hoping that having more time in the day to achieve the things I need to will enable me to keep a more day-to-day blog of the things I’m up to.  I’m aware of how great a resource blogs can be to keep tabs on people and gain encouragement for the kind of life it’s possible to lead post-transplant, so I really do hope I can keep it up.  Please keep checking back and feel free to berate me if I’m lax again.

I know, I know, I know – it’s been WAY too long since I last updated, but trust me, I’ve been busy.

I will endeavour to find some time over the weekend to give a full and proper account of the, frankly, crazy-busy and pretty momentous events of the last couple of weeks, but I just had to jump on for the last 5 minutes my brain is operating today to shout about Live Life Then Give Life, the award winning charity.

I’ve been somewhat remiss in not talking on here about our recent nomination for a Charity Times Award for Campaigning Team of the Year.  The Charity Times Awards is a prestigious charity-sector awards ceremony that recognises the best in not-for-profit work and those who support chartiable organisations.

Five of our six trustees managed to make it down to the Lancaster Hotel in London last night for the Black Tie dinner at which we were all shocked and delighted to be announced as winners in our catagory.

The judges said in their citation, “This was an outstanding campaign made up of many effective and innovative strands and appraoches, achieveing great sucess.”

We were all amazed to be thought of as the campaigning team of the year, although according to the sponsor there was only ever one winner, which is overwhelming and a great boost for all of us.

We had happily resigned ourselves to making the most of the PR opportunity that being nominated for such a renowned award in only our first year as a charity, so we were all overcome with emotion when we headed up to the stage to collect our awards.

The appalause and good will from the other charities at the ceremony made us realise how well thought of (and how much more well known than we had suspected) Live Life Then Give Life is.

To see Emily, Hal and Jen’s faces as our name was announced (and it’s a picture, let me tell you), check out the video here.

We partied long and hard into the night (although mostly alcohol-free) and came away buzzing.  We have all invested so much personally into this charity since we first got involved with Emily and Emma’s campaign back in 2006 and it’s indescribable what this recognition means to each and every one of us.  We are so aware of all the help we get from our supporters and our advocates, who go out there and tell their stories and help to increase awareness of our desperate need for more donors in this country.

Rest assured, though, we will not be sitting back and feeling chuffed that we’ve done our job now we’ve got an award – if anything, this has motivated each and every one of us to keep ploughing onwards.  In the words of friend, top blogger and independent filmmaking guru, Chris Jones, “Onwards and Upwards”.

Live Life Then Give Life continued our assault on the corridors of power today as Emily and I went along to a lunchtime lecture at the Department of Health to talk about organ donation and the reasons behind it.

The talk was ostensibly to let the civil servants know the kind of policy issues they would have to address regarding organ donation in the coming months and years and was given by a lovely lady called Triona Norman, who had attended our Treasury talk and seen how great we were(!).  Emily and I, along with a friend from the Treasury, went along to give personal experiences and help to illustrate the difference a trannsplant can make.

It was also incredibly useful because we got the chance to meet and chat to Chris Rudge who is the new National Clinical Director for Transplant, otherwise known as the Transplant Tsar, who is in charge of implementing the changes recommended by the Organ Donor Taskforce report from last September.

Apart from the obvious bonuses of meeting and getting to know the Head Dude of transplant in the UK, it was fascinating to hear him talk and address many of the issues and common questions people have about organ donation and transplant.

As a national transplant charity, we often find that the same questions are fired at us constantly, mostly regarding our relation to the Spanish system.  It has been my personal position and the position of the charity as a whole, to point out to people that the Spanish system doesn’t excel simply because they follow a system of presumed consent, but rather because they have ensured a significant investment in the infrastructure needed for transplants, including staff training and – most significantly – a much larger number of intensive care beds than we have.

This is significant because the vast majority of organ donors die in intensive care, which means the more beds we have, the larger the pool of potential organ donors.  Interestingly, Chris Rudge also said that only around 20% of organ donors are victims of road traffic accidents.  Much more commonly, the cause of death is inter-cranial bleeding, more commonly known as a stroke, which can affect many young people as well as old.

The most significant part of Chris’ talk, however, was his reaction to the introduction of presumed consent. He is very keen to set up an investigation to see whether or not an Opt-Out system would actually increase the donor rate, or if other factors are more significant.  This is a breath of fresh air to me, as I’ve been saying since the recommendations came out that it’s not a given that presumed consent would increase the number of transplants.  It may increase the potential donor pool, but that’s not the same thing at all.

It’s great to get invited to talk at these events, because both Emily and I have learned from experience that making the issues personal makes and enormous difference in driving the points home to people.  But this was more of a bonus than usual, thanks to the chance to meet and chat with Chris Rudge and some of the people who actually have the power to make a difference.

Here’s a mini-transcript from a telephone conversation my dad had today with AA Travel Insurance regarding our current family cover:

DAD: “I wanted to check on cover because we have a “close relative” (our son, actually) who had a double lung transplant less than a year ago”

SP*: “A lung transplant?”

DAD: “Yes”

SP: “Was he hospitalized for the procedure?”

*Special Person

I spent most of this afternoon in a meeting with Emma and Emily, two of my fellow Trustees of Live Life Then Give Life.  I say fellow Trustees, what I actually mean is my superiors – as Chairman and Vice-Chairman of the charity respectively, they’re far more important than me.

Anyhoo, we spent a good few hours pouring over the construction of a firm business plan for the charity, something that Emma has been pushing for us to do for an age, but which all of the Trustees have been unfortunately lax in organising and offering in-put for.  I’ve been one of the worst offenders, knowing how important it is, but never setting aside the time to think about it properly.

Being locked in a room with the girls made us focus properly on the bits of the charity we needed to focus on and work out our strengths and weaknesses, where we’re good and where we can improve.  It also gave us a chance to analyse where we can best fit in with the rest of the transplant charities in the UK at the moment.

Obviously, still being very much in the planning stage (the other three Trustees have to look at and approve our ideas, for starters), I can’t really go into a lot of detail, except to say that I think we have finally identified what we do best of all and are now hoping to commit ourselves to rolling it out as our “thing” which we can use to promote organ donation in this country without treading on the toes of everyone else in the Tx community.

One of the key things we have identified with Live Life Then Give Life is our fantastic standing and relationships with people in the transplant community, both transplant professionals, people affected by transplants and other charities themselves.  Because of this we all saw it as being vital that we strive not to replicate, but to complement other people’s work.

Too often in the charity sector you see organisations compete with each other for the same people’s cash, the same people’s time and the same pots of money and in the end it can be counterr-productive.  Live Life Then Give Life’s core aims are to promote organ donation in the UK, so if working alongside other charities suits a project best, that’s what we’ll do and if we can see that another charity does something better than us, we’re not going to try to replicate their work, but attempt to support them however we can to achieve the same goals that we are.

So the plan is coming together and the potential for Live Life Then Give Life as a charity is huge.  I can’t wait to be part of it.

This week we have been rudely invaded by the real world.  After 10 months of existing in a perfect little post-transplant bubble, the time has come to look at things that people out in the big wide beyond have to spend time looking at.

With K off to uni in 3 weeks and counting, she is, naturally, going to have to give up work.  The full-time commitment of the course, coupled with the 3-hour daily commute is going to sap every last bit of energy she has, making weekends a time for rest and recovery and not for the usual kind of student money-making that normally earns the bookworms a crust.

So it falls on me to start winning the bread for the house hold.  It’s a very strange position to be in, seeing as I haven’t been in paid employment since I left Northampton Theatres in April 2005, nearly three-and-a-half years ago.

One thing I’ve learned from friend-of-the-blog Emily is that returning straight into a ful-time job post-transplant is a bit of a no-no.  Although I now have more energy than I think I’ve ever had in my life (barring, maybe, my early years), that doesn’t automatically equate to being able to put up with the stamina required for a full-time job and the stresses and strains that go along with that.

Instead, I’m going to be looking for something smaller and more part-time, but then I hit the thorny issue of benefits.

At the moment, I’m still covered by incapacity benefits because I’ve been under doctor’s orders not to work.  The idea of incap is that in order to help you return to work, you are allowed to do a certain number of hours of paid work per week without incurring penalties on your benefits.  The trouble with incap is that once you pass the 16-hours-per-week threshold, you lose everything – there is no middle ground.

And it’s not just the incap that you lose.  Incap comes tied in with an entitlement to various other benefits including Housing Benefit and Council Tax Benefit, which basically means my rent and council tax are paid for me as my income isn’t high enough to cover them.

So, all-in-all, the loss of benefit will cost us in the region of £800 per month.  That’s an enormous gap to try to cover between working 16 hours per week on benefits and finding the rest of the money once you cross that line.  In effect, it means that you are forced to jump rom 16 hours per-week all the way up to a full-time 30-40 hour week with no middle ground and no safety net, beyond returning to incapacity benefit.

It sounds easy enough to try out full-time work and use the Incap as a fall-back option if you can’t cope, but that’s forgetting the psychological impact of going back to “illness”.  Everyone I know post-transplant has faught an incredible battle to get themselves back on their feat and rebuild new lives in the wake of a truly life-changing blessing.  What all that effort means, however, is that none of us want to return to the perception of “illness” that dogged us for years both before and initially post-transplant.

So the search for so-called “gainful” employment begins.  Where am I going to end up, who knows?  As long as it pays the bills, I have to be happy with it, but I would much rather have an opportunity to do the things I want to do with writing, filmmaking and educating than have to sit in a call-centre 37-hours a week.  Hopefully, the 16 hours I need to start off with will enable me to carry on with my personal projects and find a way to make them pay.

Watch this space!

Today was the wedding celebration for my cousin and his new wife after they got married in a low-key ceremony back in January and decided to wait to celebrate properly in the summer. I love my family to pieces and was so unbelievably happy to be there and celebrating with them, as well as meeting some relatives I’ve never met before and some I haven’t seen for years.

But my biggest problem was that I had people constantly moaning at me that I’ve let my blogging slip since my op. So this one is for everyone at the party who berated my lack of updates. And I would promise to update more often, but we all know it’s not going to hold any water.

Today started, rather incongruously, with a two-hour stint spent at the Rockingham Motor Speedway in Northamptonshire, just North of Corby. Way back at Christmas, bro and I had been bought a day’s introduction to single-seater oval driving, today being the first day we could synchronise our diaries to get it done.

Reading up on the event beforehand, I read this about it, which slightly deflated me. Following a pace car around a track didn’t seem like a whole lot of fun to me and 15 minutes didn’t seem like a huge amount of track time.

We got there plenty early and grabbed a cup of coffee to caffeine us up for the morning’s work, before being taken to the in-field paddock area and briefed about the cars, which were sat tantalisingly in front of the garage in the pit lane. We were a small group of just 4 drivers and 2 spectators, including video- and photographer, K. After our briefing we headed out to get kitted up and then wandered out into the pits to be assigned our cars.

Jumping into Number 13 was petrifying – not because of the number itself (I don’t hold any truck in superstitions), but simply cocooning yourself in something so small. It was quite claustrophobic to begin with, but luckily I had a few minutes to get myself settled after they’d explained the controls before we headed out.

We were split into two groups of two and I was directly behind the first pace car. Coming out of the pits and accelerating to modest-to-high speeds I may or may not have crunched the gearbox a little. It’s easy to do, what with the clutch being so heavy that I pushed myself further back into my seat every time I pressed it. Luckily, the beauty of an oval is that gear changes are non-existent save for when you’re coming in and out of the pits.

Following a professional driver, we lapped at a steady-but-fun pace until the orange lights started flashing around the track to signal an incident and we came back into the pits to collect the other two cars from the second group. It turns out that the front wing had flown off the second pace-car coming through the final turn, only just missing my bro in the process. I was quite glad it was him and not me.

On our next run, the pace gradually got quicker and quicker as the pace car brought us up to somewhere approaching race speeds. Had I not been following him, I’d have sworn it wasn’t possible to go that fast round the 4 turns of the oval, but being in prime position behind him, I got a perfect view of the lines he was taking and realised quickly that if his car did it, then my identical car would, too.

In fact, I was rather chuffed to see that the others couldn’t keep pace with us, dropping back so much that the pace car had to slow down to collect them again.

20 minutes in the car later, I was beginning to feel to exertion take its toll on my shoulders and arms from the forces involved in holding a steering wheel in a turn at over 100mph. Although the speedos were disabled in the car (to keep you focused on where you were going), we were told that the average speed of the runs would be approximately 120mph. It was unbelievably awesome and I love every minute of it. Far from my initial fears, I soon realised that I actually went faster behind the pace car than I would have gone on my own. And I certainly wouldn’t have driven that close to the wall.

Adrenaline rush done with, we jumped in the slightly-less powerful Mazda 6 we’d driven there and headed South to Shoeburyness, where we arrived at A&A’s place for the celebrations. My Mum’s brother were there as well as a cousin of hers, introducing me to my second cousin, whom I’ve never met, and her gorgeous pair of daughters.

My cousin’s brood (not A&A – that one’s still in-coming) all took a shine to K quickly and to me, too, after a while, although we have met them before – but when you’re 8 and 5 it’s hard to remember people, especially when you’re also trying to cope with the overloading of the senses brought about by an influx of people you’re never seen before. Their youngest, however, wasn’t so keen on us and would start crying as soon as she was handed over to anyone other than Mum, Grandma or Granddad. I did managed to have her for about 30 seconds at one point, before she realised that Mum had used the food-distraction method to fob her off on Uncle Oli and she cried foul.

It was such a great afternoon and evening. My family are all wonderfully close, even if we don’t see each other for long periods, we pick up where we left off. It’s always a joy to spend time with them all and catching up with those I hadn’t seen for years made me so happy. It’s wonderful to be able to properly share those family moments again.

Today was one of those days which, when you’re getting used to the idea of having new lungs and a new life, really remind you how special and wonderful a gift it really is. I wouldn’t have dreamed of doing the racing I’ve done today this time last year and the family day would have worn me out completely. Driving home from Southend tonight gave me pause to think about how little I’d have been able to do after nearly 6 hours at someone else’s house, playing and chatting and eating and drinking (nothing alcoholic, I must add, in case you were worried). I’ve never have managed it and a drive home, too, and certainly not when I’d been driving fast cars in the morning.

The gift of life is the greatest gift anyone can give or receive. It is the only gift that bears out the cliché of the gift that keeps on giving. I am blessed in so many ways and so grateful that I have so many opportunities to remember it.

Today has been a pretty impressively brilliant day.

It was another Harefield appointment, my first in six weeks after MC told me that it was a bit pointless coming back until they had clear data on whether my CMV had retreated for good or not.  So he had sent me away with instructions to send in bloods every 2 weeks to keep a check on things and that if I hit the 3 month mark with no adverse effects or without showing anything above a zero on my CMV then he’d take me off the Valganciclovir I’ve been on since May and see if my body will cope without it without submitting to CMV again.

Seeing him today with a month-and-a-half of clear results, he was suitable pleased and happy for me to drop my Valgan and continue with everything else, albeit being very much more aware and careful about the first signs of CMV infection, necessitated by the fact that CMV can very rapidly kick-start rejection of the not-very-good kind, which could do my serious damage.

That said, though, he came out with something I wasn’t expecting to hear at all.  Although I may feel like I’ve had a fair number of blips, he thinks I’m doing incredibly well and – going by his experience of CF patients post-transplant – thinks I now stand a better-than-average chance of 5-year survival.

At the time of my transplant, I was quoted statistics saying that 73% of people make it through the first year, and within that 27% that don’t are included people who may die on the table or suffer serious post-operative complications.  Once you stretch the survival period to 5-years, the odds stand at 50/50, but MC now believes that for me the benchmark can be shifted from 50/50 at 5 years to 50/50 to make 10 years.

Another decade of life is better than I think many of us dared to hope.  I said before my transplant if I’m given just six months of a new life I’d be happy.  Time enough to play with my Godsons, experience the things I’d not been able to do for breathlessness and lack of energy, learn to do things on a whim again.  Having slipped past that stage back in May, albeit in the middle of a CMV/EBV attack, I’ve felt contented with my lot, whatever is thrown at me next.  To know now that there’s a very real possibility of a future worth planning for is too incomparable for words.

I’m aware every day that someone, somewhere has lost someone they loved very dearly.  I just hope I can make enough use of the extra time I’ve been given to show them what a truly wonderful gift they have given not just me, but my family, too.