Archives: Friends

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.

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!

I hadn’t actually realised it’s been nearly a week since my last post.  In fact, I was just sitting at my desk doing work-y things when it occurred to me that I hadn’t done anything for a bit and wondering when it was that I did.  Anyway, if you haven’t read the Duck Race entry, do it now then go and sponsor a duck then come back here.  I promise I’ll still be here.

I’ve had one of those weird weeks where I can’t remember what on earth I’ve been doing other than the fact that I seem to remember being quite busy.

My main occupation over the last two days (that’s Monday and Tuesday) has been attending Business Link’s free courses on how to start your own business.  They come in 3 flavours, as well as a general introduction session that I did late last month.  So on Monday afternoon I did a three-hour session on planning a business, writing a business plan and doing market research to be able to justify the idea in the first place, swiftly followed by a three hour evening session on Marketing and Sales, which was unbelievably helpful and taught me a huge amount of stuff I didn’t know before and has really helped me with some techniques and strategies to follow should I decide to go down this route.

Then after a day of rest and brain-recovery, I did another three hours on Tuesday night on Managing Money – all the financial aspects of running a business including book-keeping, tax and national insurance and other important financy-things.

What surprised me the most about the whole thing was that I actually really enjoyed being in a learning environment again – being taught things, learning things, using my brain to try to grasp things I’d not fully understood before.  It really was great fun and really, really helpful.

As a side note, any of you who think you’d like to start a business or similar, I can thoroughly recommend Business Link and their services and courses.  Everything they do is 100% free and you can do the open workshops like I did as well as talking to a Business Link Adviser, who are all bona-fide business people who really know what they’re doing.  I’ve been really impressed by them and would definitely use them again.

Beyond my courses the only other thing of note I think I’ve done is attend a show produced by my old MKT boss at the Grove Theatre in Dunstable.

I’m not one for hyperbole – ok, I am, but I’m not one for giving undue praise, so it should be noted that the Grove’s Wizard of Oz is without doubt the best Youth Theatre production I’ve ever seen.  It was utterly remarkable and even more so for the fact that it was put together as part of a two-week summer school.  That’s just 2 weeks spent working with a professional director that got the kids involved up to a standard superior to some professional productions I’ve seen (no names mentioned, Yellow Wallpaper).

I was thrilled that TJ invited me to come and see it and gobsmacked at the standard of performance from the entire cast, but particularly by the four leads, who blew me away with their voices and their physicality.  I really can’t congratulate the cast or the guys at the Grove for such a spectacular show.

I’ve got a busy weekend of fun coming up this weekend and I promise to blog in full detail about the whole thing on Monday, provided I don’t forget again…

Today’s been an awesome day, celebrating K turning 25 – quarter of a century old and heading off to Uni to do the thing she’s most wanted to do all her life.  People seem to see me as somehow admirable, but as far as I can see it, I just survived – K is doing something altogether bravery and more worthy of admiration than anything I’ve done (with the possible exception of the time I went on that Pirate Ship ride even though I was terrified because my Godson wanted to…).

One of the (many) things I love about K is how amazingly special she makes special days for all those around her.  She works tirelessly to make sure that her friends and family have a great time on their days – be it birthdays, anniversaries or celebrations.  Because of her unending dedication to others’ enjoyment, I wanted to make sure that this time, just for once, she had an amazing day of her own to lodge in her memory bank.

I didn’t tell her anything about what we were doing all day – perfectly aware that she doesn’t like surprises (they scare her slightly) but knowing that 1) it would be good for her and 2) it would make the day that much more special (or so I hoped).

So I started with a lie in for her and an early morning for me.  As it happens, I didn’t actually sleep all night anyway, so the early morning part wasn’t too hard.  I got up and sorted out her big bag of presents, laying them all out nicely on the coffee table in front of the sofa with all of her cards.  That done, I headed down to Tesco to pick up some fresh pain au chocolat for breakfast, one of K’s faves.  Then I watched the Olympics until she got up.

As soon as she was up and about, I made tea (always a requirement) and she got stuck in to opening her small mountain of gifts.  She received some really wonderful things – very pretty, very individual and very K – and then we broke off for a bit of breakkie after she’d spoken to her sister on the phone.

After breakfast she got back to the unwrapping and got to her Wii.  She’s been lusting after the Nintendo Wii almost ever since it came out, but certainly since last year when the two of us played on her brother’s.  Now she’s got one of her very own (which she’s actually playing on right this very second) and loves it to pieces – a good choice, it appears.

Once we’d unpacked it all and set it up, in between showering and me doing the washing up, we played a few rounds of various Wii sports before heading to the flicks.  This was the only part of the day in which she had any say – 27 Dresses was showing for one showing today, which is one that she missed when it was first out and I know she was keen to see it, so I gave her the option of catching it while it was on the big-screen today.

Post-flick, we headed over to Deanshanger to stop in on our sis and niece and nephew, who’d managed to fall over hard yesterday and give everyone a fright that he may have broken his leg.  Seeing him today, it looks like the hospital were right when they said it was just badly bruised/sprained, but he certainly wasn’t himself – he’s normally running around like something that runs around really a lot, but today he was much more subdued and only wandered about the house to find one of us and plead, “More horrid.”  (That’s his way of asking for another episode of Horrid Henry from the Sky+, not a request for us to treat him badly, just in case any child protection officers happen to be reading…).

After checking in on them (and picking up the birthday card from K’s ‘rents that we’d (sorry, I) left there on Saturday, we headed up the road to stop in on K’s ‘rents, the most important part of said visit being, of course, the birthday cake.  With a fairy on it and everything.

After munching cake, drinking fizzy pink stuff and waking her dad up from his nap, K opened up her various presents that had been dropped at her ‘rents, including the one which had originated from there – a mini (and I mean mini) dictation machine that she has wanted to get for Uni, as it’s apparently a great way to revise the day’s lectures, by listening back to them and typing them up as an aide memoire.  It’s a great little thingy, which records very clearly from quite a distance and then downloads directly to a computer.  Fab.

Once we’d had a cuppa and some fizz and opened all the extra pressies, we popped round to another family friend to say hello and thank her for the present she’d left for K.  After a quick stop, we carried on out and went back into town for dinner at Brasserie Blanc (or brassiere blank as we’ve heard it called recently).  K’s wanted to go there since it opened, so it seemed like the perfect treat.

As you may guess from the name (unless you think it means White Cafe), it’s a part of the Raymond Blanc empire, recently arrived in the newer, upmarket area of MK known as The Hub.  Rubbish name, yes, lovely place, though – full of really nice eateries with a wonderful European open-plaza style to it and much more of a communal atmosphere than many places in the UK today.  Brasserie Blanc is on the outer side of the square (away from the main hustle and bustle) and it has to be said it is absolutely exquisite.

It’s expensive there, but it’s one of the few restaurants where I really don’t begrudge the prices they charge.  The food was absolutely beautiful.  It was hands down one of the best meals I have ever eaten in my life and certainly in the running for the best meal I’ve ever had in a restaurant.  I had a rack of lamb so succulent and juicy that chewing was optional.  K had a fillet steak, which was similarly top-quality and we finished it with two heavenly desserts which I couldn’t finish (although K polished hers off).

It’s not just the food in there that makes it worth it (although I’d have eaten off the floor in a flea-pit for food that good), it’s the whole experience.  The setting is lovely – clearly catering for an up-market crowd, but without the stuffiness or coldness of many places along similar lines.  It’s warm, friendly and very comfortable.  The whole evening is topped off by, I think, the best service I’ve ever had in a restaurant.  A waitress who isn’t just there to take an order and shove it at the chef, but rather to help enhance the whole experience for the diners – chatty, polite, helpful and informative.  As I signed the cheque, I made sure to check which was the best way to pay the tip to make sure it went to her and wasn’t shared out.

(As a side note, tipping is very important to me.  I object massively to the accepted wisdom of a straight 10% tip for any waitress.  If I get good service, I’ll tip well, if I get average service, I’ll tip averagely and if I get poor service, I won’t tip.  But beyond that, I don’t agree with pooling tips and splitting them.  If someone gives me exceptional service, as was the case tonight, I want to reward them for it – not to find myself giving a tip to the not-so-good waitress who happens to be sharing the shift with my one.  If they’re good enough, they’ll earn their own tips, if not, they’ll learn they need to work harder.  The point is, if you want to make sure you’re tipping the right person, you need to check.  For instance, had I placed the gratuity on the card I was paying with, by typing it into the machine, then it would have been split.  Leave it in cash on the table, however, and it all goes to the waitress.  This is usually the case, but it’s always worth checking – and making sure you ask the right questions.  Asking where the gratuity goes if it’s put on the card, the waitress is obliged to explain the sharing policy.  She is forbidden, however, to inform you of the cash policy.  Only if you specifically ask can you find out where the tips go.)

Coming away well satisfied after a fine meal, we headed back home where we were met again by friends to help us Christen the Wii.  Two hours of constant game-play between the four of us later and we turfed the guys out to take ourselves off to bed and our much-needed beauty sleep for the return to the grind tomorrow.

I’m generally not one to get excited about birthdays – mine or anyone elses – but for the first time with K’s birthday today, I was genuinely excited about it and I’ve had an absolutely brilliant time.  I’m still buzzing from it and from the look of pure happiness on her face that hasn’t moved for the entirety of the day.  It just goes to prove, it truly is better to give than to receive.

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.

I figured I’ve taken enough time off fitness and exercise since my admission with CMV, so I’m back on the treadmill and all the other torture devices at the gym in a bid to make sure that all the weight I’m currently putting on goes on in the right ways, not just around my stomach and face as seems to be the case at the moment.

I surprised myself at how little of my aerobic capacity I had actually lost, I did a lot better on the bike and rower than I thought I was going to and then fitted in a really good upper-body resistance workout, which I’ll be aiming to do twice a week and also a twice-weekly lower-body work out on the day after the uppers. That’ll be Monday, Tuesday, Thursday and Friday so I have 2 days rest between weights sessions for specific areas and then the weekend off.

I actually really enjoyed the session today and I hope that I’ll quickly pick up the gym-addiction that I had started to develop before my incarceration.

I also did a second Untouched photo-shoot with a friend from the Theatre today, which went really well – he’s very photogenic and we came away with some good shots and some fun ones, too. I’m really liking the look of the natural light and the challenge of getting the shot I need right there and then. I’m also getting more and more used to the intricate settings of my camera – learning how to use things I’ve always had on automatic before, but which now enable me to better control the image, which is vital when I can’t play with it after the fact.

Also chatted to J, the model, about setting up some Theatre/Film projects in the not-too-distant future: he’s like me, looking to occupy himself and to experiment with things in a small environment, but he’s on the acting side and I’m on the behind-the-camera side, which is quite a useful combination. I also think he may be as driven as I am, which will definitely help us spur ourselves along.

This afternoon I met with two of the old MK Youth Theatre who have set up their own project called In Vitro for their own production company, Thrust Theatre Company, which I’m incredibly impressed with. They’re very on-the-ball when it comes to the money side of things, having worked out a completely balanced budget and ways to raise the money quickly and easily. Budgeting is one of the hardest things to learn and get right when you don’t know a lot about production in theatre, so I’m really pleased that they’ve paid it so much attention and not just gone in blind with the hope they can put on a play somewhere.

The play itself, written by one of them and to be directed by the other, is also very good. It’s very “issue based”, but that’s no bad thing for a young people’s theatre group aiming at a certain market, and they have things to say on the issues which need to be listened to by some of the adult population in this country.

They’ve asked me to be involved, which I’d very much like to be – I’ll be going along to most of the rehearsals and being a sounding-board for their ideas and helping them through the process in any way they need, sort of like a mentor, I guess, which is a little scary as I’m sure I’m not old enough to be a mentor to anyone.

Still, it’s another project, another little bit of variety in my life and it’s something else to be interested in and excited about. Can’t wait.

Last night I headed down to London to meet up with an old, old schoolmate who’s now working as Press Officer for a small record label and shop called Pure Groove. They were having a film night of music videos in their Smithfield shop to which Ben had invited me to scope out what’s going on in the music video scene at the mo. The intention is that between the two of us we’re going to start producing some vids of our own, which is something I’ve wanted to do for a while, but it’s taken the kick up the rear from Ben to get me really going.

There was some really interesting work on show last night, from some well-known bands and artists and some from bands I’ve not heard of. That’s not saying much, mind, since my musical knowledge is pretty much up there with my knowledge of particle physics, although I do know what I like (which is most things, really).

I’m hoping that I’m going to be able to get myself together to start pushing myself creatively again now I’m back on my feet and full of energy. I’ve just instigated another new project, which I’m also really excited about.

It’s called Untouched and it’s a photography project created as a reaction to all the heavily-airbrushed “perfect” pictures we see of celebs in magazines these days. My aim is to create images of people using only natural light and with no digital manipulation at all.

Hopefully, if the shots turn out well enough, I’ll be able to set up an exhibition at some point and maybe even sell them, but for now it’s more of a hobby-project to get me back into a fully creative mindset. The great thing about it as a project is that I have all that I need to get it underway right now. I’ve got a good-quality camera and a good bunch of friends willing to model for me, which is all I need. Incidentally, if you’re interested in modeling, drop me a line here and we’ll get together.

What an awesome day today has been – one of the best since my transplant.

Today I achieved something I’d never have thought I could achieve and done something I never thought I’d see myself doing even before my transplant.

We had my Godson up for the day with his mum and dad at my ‘rents and another family of really close friends with two kids as well and we all traipsed across Willen lake to the high-rope course on the far side of the sports lake.

This thing is pretty epic – a collection of fairly challenging obstacles suspended around 20 feet above the ground on the first level, with an upper level twice that height.  All harnessed and hard-hatted up, we set off around the first level.

The interesting thing about the course is that it’s not really possible to get down once you’ve started, so by way of a tester they put the most intimidating obstacles first, so if you really, really don’t like it, you can turn back.  I must confess, halfway through traversing the 10′ wide section of climbing wall with the world’s tiniest footholds, I seriously considered it.

I’m glad I didn’t though, as the rest of the course was pure joy.  I only struggled at one point, which was a section which required excellent balance (not something I’m renowned for) and good upper-body strength (something which has yet to grace my new body).  With that out of the way, the rest of the course was *relatively* easy.

I was disappointed that the lower level required so much physical exertion that I didn’t have anything left in the tank to attempt the higher, more challenging level this time around, but it gives me a great incentive to build my strength and stamina back up and conquer it next time.

The final step of the course is a 50’ rope drop from a tower in the centre of the courses.  Hooked onto a decelerating wire, you step off a platform for a few moments of free-fall before the rope goes taught and the drum begins to slow you down, depositing you on your feet/butt at the bottom a couple of seconds later at a manageable speed.

Before my op, healthy or not, I wouldn’t not have dreamed of doing something like that in a million years.  To be honest, I’m still not entirely sure what possessed me to to it today, but I did.  I stood at the top, harnessed up and clipped on and wondered out loud what I was doing there before serenely stepping off the platform and dropping to the floor in a matter of seconds.  On the way down it was the most horrible thing I’ve ever done, but as soon as I hit the floor I wanted to go again.

Doing a course like that really rammed home once again the astonishing difference these new lungs have made to my life.  Even after completing it, I still had enough energy to go back to Mum and Dad’s and play in the garden with everyone, as we got through games of Butthead, Scatch and footie.  It’s an amazing feeling to finally be able to run around and play in the garden with people again.

I always said before my op that Transplant is a bit of a gamble – there’s no way of knowing how long it’s going to last for and what your quality of life is going to be like, but I said I’d be happy if all I got was an extra six months and the opportunity to play football with my Godsons again.  This weekend, as I ran and missed yet another perfectly weighted cross just wide of the far post, it occurred to me that I’ve now hit both of those milestones.  Everything I wanted before my transplant, I’ve got – I couldn’t be more blessed and feel more happy and content with my life than I do right now.

Transplant is amazing. Full stop.

It’s taken me a while to get around to writing about my admission for two weeks almost a month ago, but that’s because I’ve still not really managed to wrap my head around the whole deal.

The two weeks I spent on the ward in Harefield in the middle of May were the hardest two weeks of “inmate” time I’ve spent for a long time and I’m not entirely sure why. Perhaps it was something to do with being on an open ward, something I’ve only experienced once or twice in my life, despite numerous, often lengthy, hospital admissions. Perhaps it was because I was missing out on the holiday with a big group of friends that K and I had been planning for close on 3 months.

Above everything, though, I think I struggled more than I have for a while because something in my brain told me I was passed all this. My new lungs have had an amazing start. A minor hiccup after 2 weeks not withstanding, they’ve gone from strength to strength and my lung function has been steadily rising, my exercise tolerance going with it. I even completed the famed last mile of Tresco with my brother and started entertaining thoughts of doing the whole thing next year.

So I suppose I had kind of taken my eyes off the post-transplant complications ball and started to enjoy life without a second thought for whatever else was going on, assuming everything was tickety-boo. Which is, I suppose, a lesson in itself. While new lungs mean great new things, you can never take their health for granted and even though I’d been booming for the last three months, it doesn’t take much to send the body reeling.

The chest pains I’d been worried about were initially diagnosed as Gastritis, but when I saw the team at Harefield I had managed to spike a good-looking temperature to go with the pain and nausea, leaving them little choice but to admit me. For the first 24-48 hours the cause of my ailments seemed a mystery to the docs, until they got my CMV count back, at which point they were more contented, knowing that they knew how to deal with it now that it had been properly identified.

There’s something disconcerting about being given drugs intravenously which are so toxic the nurses have to wear gloves and the pregnant women aren’t even allowed to touch the packaging. Knowing they can’t go near while you watch it being pumped into your veins is pretty bizarre and something I’ve never got used to, despite a history of high-caliber potions in my time.

When I was moved to the open ward, which happened to coincide with K’s departure on the holiday with our friends (at my insistence, I must add, and under considerable duress) and I dropped into a pretty deep funk. It’s the lowest I’ve been since the darkest days of the early post-transplant period and there didn’t seem to be a whole lot going for me at the time.

I’m slightly ashamed of myself now for letting it all get on top of me so much, since at the end of the day I was still a good deal healthier than I had been not 6 months ago, but for some reason (or, I suppose, a myriad of reasons) I couldn’t raise my spirits at all.

Luckily, at Dad’s suggestion, I managed to secure a weekend release while the guys were all away. The ‘rents agreed to drive me in for my doses of anti-biotics twice a day, but I was free to go home for food, rest and over-night sleep, something I’d been getting very little of on the ward, what with the world’s loudest talker on one side and the telly addict on the other.

Eventually, thank goodness, my consultant, the amazing Doc C returned from his paternity leave in the middle of the next week and on his first round of the day told me I was free to head home as they expected my viral load to be low enough to no longer necessitate the use of the IV drugs, enabling a switch to the more home-friendly orals.

I hadn’t been happier than that afternoon when I got back to the flat just after K returned from the holiday and we could just chill out on the sofa and enjoy each other’s company again after nearly a week apart – pretty much the longest we’ve spent away from each other since we got together.

Getting used to the ups and downs of transplant is clearly taking me longer than I thought it would. My mind appears convinced that things can only go well, so any minor hiccup is a bigger deal than it ought to be because it carries with it something of a heavy shock value. I need to keep reminding myself that it was only 6 months ago that I had new lungs fitted and that I still have a way to go to fully recover, however good I may feel right now.

So I’m trying to take things a little more slowly, although how long that will last we’ll have to wait and see. The main thing for me at the moment is doing what I can to avoid what Doc C affectionately calls the “Superman complex”, whereby people (mostly men) post-transplant start to see themselves as indestructible and slacken off their meds and treatments. It’s hardly the way to say thank you for the greatest gift of all, so I’m determined to stay away from it and keep myself at my best.