Archives: Transplant

I don’t much like blogging from my phone – it’s a bit tiny to write lengthy missives on (given my propensity for verbosity), but right now I don’t want to wait another day until I can access a computer.

A very good friend of mine and amazing fundraiser and supporter of LLTGL is very, very seriously ill. Like I was, she is waiting for a double lung transplant and has held on despite terrible health for a remarkable 4 years on the waiting list. When you consider that you’re only supposed to be listed when you have a life expectancy of less than 2 years, that shows you how amazingly she’s doing.

Sadly, things aren’t looking great. She was rushed into hospital at the end of the week struggling to breathe and is now reliant on her non-invasive ventilator to keep breathing. Her lungs are quite literally unable to cope with the demands placed on them by constant infection and the ravages of CF that she fights daily.

All of her friends are trying to do everything we can to help, but there’s so little we can do.

One thing at our disposal is the power of words and friendship. As Jess’s friends we are all talking to all of our friends to encourage people to sign the organ donor register and to tell everyone they can to do the same.

If you’re on Twitter, post the above link along with #savejess or tweet about her @Jess_19 and tell people about her.

If you’re on Myspace, Bebo or Facebook, put Jess and the link in your status updates, even link to this page to show people what you’re shouting about.

So much of Jess’s fate now rests with the doctors and medical teams looking after her and her ability to keep fighting. But it also rests on the courageous decision of one single person to give her life after theirs has passed.

Please, please, please do whatever you can to help give Jess the same chance of a better life that I’ve had and am currently making so much of.

Thank you.

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

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

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

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

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

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

The answers, as he gave them, were:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Since my transplant life has taken on a whole new slant. For the most part this is absolutely, 100% undeniably awesome – being able to do the things I want to do, not having to worry about all the rubbish that went with the battle against CF. But every now and again something hits you with a bump, or a thud, or a massive hammer-blow to the head.

I got a phone call from a friend’s husband this morning saying he’d just been off the phone with the mother of a friend of mine from years back. She had CF and we used to chat a lot about all sorts of things – frequently how rubbish CF was – and make each other laugh and work through things when we needed some support. Sadly, she passed away this morning.

There’s such a complex mix of emotions post-transplant. On the one hand, I’m so deeply saddened that another young life has been lost to a disease which needn’t take people away from us. On the other hand, I’m so deeply grateful to my donor and their family for giving me the chance to retake control of my life and battle on to achieve what I want to achieve. It’s both deeply upsetting and hugely motivating when you hear of someone losing their fight.

Just last week I was in Oxford for my annual review with the CF team. It’s really a bit of a formality, as the CF no longer affects my lungs, but it’s still important for them to keep an eye on the other parts of my body CF can affect. It was such a great day though, epitomised by one little moment.

As the physio was doing my general assessment, including posture and other things, she had to listen to my chest. I’ve known my physio for a long time – over 10 years I’ve been going to the same clinic with the same physio now – and as time passes and you go through phases of ill-health, better health, dreadful health and have the kind of scares I went through, physios are the people you naturally seem to turn to. Most PWCF will tell you that their physio is the person they confide in the most, more often than not because they are the member of your medical team you spend the most time with due to the frequent rounds of physiotherapy needed to keep the chest at some vague approximation of a functioning level.

So my physio is doing her assessment and I lift my shirt for her to listen to my chest. I used to know I was ill when the physio or doc would listen to my chest and pause the stethoscope in any one place for longer than a single breath. As she listened to my chest, she paused in one particular area and a dread went up me, until I glanced down and saw a smile creeping over her face as she listened to my now-soundless chest.

For years all anyone had been able to hear on my chest was the crackly static of blocked and infected lungs, now there’s nothing. And as she listened, my physio couldn’t hide her big, beaming smile at the fact that there’s nothing for her to do on my chest any more.

I’m enjoying a life I never thought I would or could, thanks to the generosity of one family, but the price I have to pay for the extension I’ve been given is seeing people who could so easily be like me losing their fight.

This is why I work with these guys and this is why I’m making Remembrance – if they’re not here to reach their dreams, I damn sure better make an effort to fulfill mine. If you want to buy in to my dream, go here to find out more.

After all the to-ing and fro-ing, the waiting, the build-up, the Big Secret Project is finally here.

Oscar

BAFTA

As many of you will know, a good friend of mine set out to make a short film when I was waiting for my transplant. Gone Fishing eventually reached the final 7 in the shortlist for the Oscars, some going for a little film made with the help of friends, colleagues and people he didn’t even know at the start of the project. Shot on 35mm film and finished to the highest of professional standards, Chris’ film has won far too many international festivals for me to count. If you visit his blog, you’ll be able to find out all about it and the festivals.

By far the biggest thing to come out of Gone Fishing for Chris, though, is the launch-pad it has given him into the film industry. From taking meetings in LA to signing with an agency and manager, Chris is living the life he (and I) has always dreamed of.

When I sat at home an mulled over my options for how to get where I want to go when I don’t know how long I have to achieve my goals, Gone Fishing and Chris’ experience thrust themselves into my consciousness. I’ve always wanted to be a filmmaker, I’ve always wanted to make films. It’s that simple. So why sit around thinking about it when you can actually go out and do it?

And given the blessing I’ve been given – the most wonderful gift any person or family can give to anyone else – it seems even more important to push myself to achieve the very best that I can. No middle ground, no soft-peddalling. If I’m going to do this, I’m reaching as high as I can. As a wise man once said, “Reach for the stars and you may just reach the ceiling, reach for the ceiling and you will barely get off the ground.”

Every journey, as they say, starts with a single step. And this is it, “Remembrance”.

Remembrance is a 15 minute short film about war, family and memory through the eyes of three generations of a single British family. It’s chock full of action, carefully-crafted dialogue and packs a real emotional punch. It’s designed to showcase all of the things I can do as a director and writer, working with big names (if things go to plan), working with children and young actors, directing action scenes and working with stuntmen and stunt arrangers as well as working on a smaller scale with intimate dialogue scenes.

As I said when I first sat down to write about it: this one’s good. It’s really good. And I believe it can go all the way. I intend to fully document the process on here for everyone to read and for filmmakers to learn from and I will shortly be enlisting you all for your help in creating this piece of historic cinema. It may not rock the entire world of film, but it will turn my world upside down and become a launching point not just for my career, but hopefully for everyone involved.

Keep checking back for progress reports and on Friday I’ll tell you all how you can help.

This is my second post-transplant birthday and I’m delighted to say that the novelty really hasn’t worn off. This time last year I was celebrating a birthday I never expected to see just weeks after mourning the loss of a friend whose transplant didn’t come in time.

This year is no less emotional, having been part of the Team Ethan fundraiser last weekend and remembering that I’m only here thanks to the generosity of my donor and their family. But it’s also been brilliant to be surrounded by my friends and family and really enjoy a day of doing nothing but what I wanted to.

I’ve been so overwhelmed by all the messages of support on Facebook and texts and phone calls from people. I really didn’t expect so many people to get in touch – it’s all a bit of a shock, if I’m honest, although K thinks I’m silly for being surprised. I suppose I simply had no idea that so many people were watching out for me and keeping tabs to make sure I’m doing OK.

It’s also really given me the kick up the proverbial to get myself into gear. Last week was a really hard week and I lost my focus a little, hence the delay in announcement of the Big Secret Project. But having had a weekend to look at the bigger picture, I’ve realised that this is 100% what I need to do with myself right now. And if I can’t do it with the MASSIVE team of supporters I’ve clearly got behind me right now then, quite frankly, I’m never going to be able to do it.

So from tomorrow it’s onwards and upwards – the project is a GO and will be announced right here and on the TinyButMighty website within the next 48 hours. So come back soon!

I spent the weekend with Live Life Then Give Life Advocate Holly Shaw (also star of Channel 4’s Battlefront programme
last Thursday) and Vice-Chair Emily Thackray in Warrington. We were there to shoot an interview with Holly and also to cover the Team Ethan participation in the BUPA Great Manchester 10k on Sunday morning.

The family of Baby Ethan, who sadly lost his fight just a few weeks post-transplant earlier this month, are truly amazing people. Despite burying his son just last week, dad Stu lead the team around the centre of Manchester, registering a time of 65 minutes for the 6-mile-plus run.

Even more inspirational was the enormous turn out of family and friends at their LLTGL fundraiser in the evening to bring the events of the day and the recent weeks to an emotional but uplifting close.

In the end they raised a phenomenal £5,900 for LLTGL between the online fundraising on their justgiving page and including over £3000 raised on the night in the room. We were all humbled and privileged to be there and experience such an amazing display of mutual support.

The video from the weekend will be up on the LLTGL website this week and if you want to donate to Team Ethan, you can do so here.