Archives: Transplant

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.

Happiness is an often elusive thing. It is at once indefinable and definite – you just know when you’re happy. It’s also vital to life. Or at least to mine.

A long time ago, pre-transplant before I was seriously ill, I promised myself that I would never have “just a job” – that I would always do something that made me happy. It didn’t matter to me if that was street sweeping, rubbish collecting or running the biggest company in the country; if I was happy that’s where I’d want to be.

This has come back to me over the last few weeks and months up in Liverpool. The ultimate truth is that I’m just not happy up here.

The decision to come to university was made in a rush of confused feelings about my past, my present and my future. At the time it seemed like a great option for me to explore what life is like outside the confines I’d previously lived in and that life as a student – something I’d missed out on when I was still in my teens being too ill to go – would suit me and re-energise me.

The theory behind the decision to come to LIPA was sound: I’d always wanted to come and when I saw the place in clearing I leaped at the chance to be a part of an institute I’d always wanted to go to. I didn’t, however, consider well enough the value of the course to the way I see my life panning out.

LIPA is a remarkable place – the people, the building, the students, the tutors, the shows: all outstanding. But it’s not the right place for me to be.

I’ve been unhappy here for nearly as long as I’ve been up here and it’s taken me a long time to reach the decision that I’ve come to. In the end, though, the opportunity to come back and start the rest of my life with my wonderful, devoted and utterly beloved K combined with the chance to pursue a project I’ve wanted to push through for well over 3 years was too good to turn down.

K and I have been through rough times in the last six months or so. We’ve been through rough times in our own, individual lives; we’ve been through tough times in our relationship and we’ve been through hard times in our lives together. But we’ve come out of it stronger and more supportive than we’ve ever been.

When I came back South a few weeks ago, I had a long chat over lunch to two of our closest friends who, when I aired my views about Liverpool, came up with one singular piece of advice: follow your heart and not your head.

I have spent too much time in the last few months thinking through everything. Wondering about what my family would think, what K’s family would think, what my friends would think and – most important of all – what my donor and their family would think. What it comes down to is this:

I want to do something that makes my donor proud to have bestowed this gift on me. And sitting up in Liverpool, miles from the woman and the people that I love and living 3 years of an already-shortened life being unhappy just isn’t right.

So it is with a heavy heart, but high hopes that I take my leave of Liverpool and LIPA later on today. It’s been a great ride: Wind in the Willows was an amazing show to work on and I’ve made some firm friends. But it’s time for me to do what’s right for me, regardless of what anyone may think or feel about it.

Am I sad to be leaving? Yes. Am I disappointed in myself? I am a little. Am I excited about what comes next? You betcha.

After everything that’s happen this week, there has never been a more important time for me to dedicate myself to the life I want. The life that makes me happy.

Nearly five years ago I had a night out in Milton Keynes that broke all the rules of CF – three of us who had become friends on the CF Trust’s messages boards (and another bunch of mates) met up for a party in town.

Toria, a long-held email acquaintance, and Jo, a young, effervescent and far-cooler-than-us teenager, hit the town harder than we probably had for a while and I’m inclined to think harder than we should have, too. Toria came back and crashed at mine, while we all promised this would be the start of many similar nights.

Now, in the space of just over a year, I’ve lost them both after having my life utterly change through my transplant. Neither of them were as lucky as me – both listed, neither got “that call”. I detailed in this post my emotions on Toria’s death, as we’d fallen – stupidly – out of touch over something that was on reflection utterly trivial and should never have come between us.

I was in touch with Jo right up to the end. Her transplant journey, although occurring a couple of years later, mirrored mine almost exactly with treatments, problems, worries and everything else. She was cared for my the same CF team in Oxford and was to be called to the same hospital for transplant.

This morning, however, she lost her fight. Buried deep in the technical rehearsal process of Wind in the Willows at the moment, I didn’t know about this until almost 10pm tonight and it has utterly shattered me.

Over the last few weeks and months, I’ve talked to Jo through all the ups and downs that come with the wait for transplant, but never for once imagined she’d be near the end. I left LIPA this evening and walked home with the night’s light rainfall mixing heavily with my tears as I thought back to that day in the mighty Oceana (pre-smoking ban and all).

Toria’s death impacted on me hard as I felt so removed from it. Jo’s has pole-axed me as I just wasn’t ready for it. Are we ever ready for the death of a beloved friend, or is it just that at some point we’re prepared?

I don’t understand how I can be presented with this chance to live my life how I want to and do all that I can when two of my friends have their chances ripped from them. It doesn’t make sense to me and I guess it never will.

I love you, Jo, you were so much more than just a friend at the end of the phone. I’ll miss you and I’ll think of you every day. The rest of my life is for you, honey – you and all the others who haven’t had the chance that I’ve been given.

Rest easy now, take a deep breath.

Today marks the point 2 years ago when I received the ultimate gift from a wonderful person. It is, therefore, a day to celebrate.

Being currently ensconced up in Liverpool and far away from many of my friends, I’ve developed a slightly novel way of celebrating using the magic of Facebook and Twitter.

I’m asking anyone who wants to join me in celebration to find their own way to mark the occasion, whether it be a party, a trip to the pub or just raising a glass in their living room and to take a picture of themselves doing it and upload it to either the Facebook event page or onto Twitter.

If you’re on Facebook, search for “Oli’s 2nd Second Birthday. Party Where You Are Party” or find my profile and get to it from there. If you’re a Tweeter, simply use the hashtag #oli2nd.

Have a great day today and, if you get chance, raise a glass to me and my donor.

As I wrote this time last year, I hold the 19th of November as a particularly special and reflective day for me.

I received my transplant at 00.15 on the 20th November 2007, from which I can deduce that Monday 19th November 2007 was the day one family lost a very important member.

One family, somewhere in the UK, is today mourning the loss of a beloved child. Although I don’t know anything else about my donor, they may also be mourning a life-partner, a sibling, a parent and, most likely of all, a close and trusted friend.

Today I will be remembering a person whose faith and courage saw them sign the Organ Donor Register and offer me the chance to live again, even after they had died. I will also be saluting the incredible and immense clarity of thinking on behalf of a family going through their worst of experiences in allowing the surgical teams to go ahead and follow their loved one’s wishes.

Without this generosity on the part of people I will never meet, nor likely ever know, I would not be here.

I wouldn’t be here to think of all those friends I’ve lost when their chance didn’t come in time. I wouldn’t be here to support and pray for all those friends who are waiting right now, their lives hanging in the balance waiting for a family to be as courageous as my donor’s family. I wouldn’t be here to realise the things most important to me in life and I wouldn’t be here to effect the changes I know I need to make to live my life to its fullest extent – the only real way I can ever show my appreciation for what has been given to me.

So if you’re watching down on me from above, I want to thank you. I want you to know how much your gift has already given me and I want you to know that I am doing and will continue to do all that I can to make sure that every second you look down on me, you are proud.

I can think of no greater goal in life than the pursuit of the knowledge that, this day and every day, my donor is proud. Proud of me, proud of what I’ve done and proud of what I’m doing.

Thank you will never be enough.

As the years of my wait for a transplant slipped by and my health got progressively worse, I was more and more confined to my flat in MK unable to venture out without massive exertions. Inevitable, I suppose, this led to periods of struggle with my mood and fight to stay positive (of which long-time readers will recall this being a large part).

Another large part of that battle to keep my head above the depressive waters that threatened to flood over me was the DVDs of Eddie Izzard’s previous UK tours, most notably Glorious and Dress To Kill.

Both of these would never fail to make me laugh and would frequently result in intense bouts of coughing which, if nothing else, made my physios happy as it cleared a lot of gunk off my chest.

Last week, when scouting around the ‘net for things to do with K when she came up for her visit this weekend, I discovered that Eddie was playing at Liverpool’s ECHO Arena. Expecting it to be fully sold out, I nonetheless logged on to the ECHO website and to my amazement and joy I bought us two tickets.

After nearly five years since first coming across him and 2 years of a fight for life, following a two-year recovery period with as many lows as there have been highs, I finally got to see the man who helped me through it live and in the flesh.

There’s really no way to describe a comedy gig comfortable in writing, so I won’t try to. All I’ll say is that if you know him, if you like him, you are duty-bound to seek out his nearest date to you and go see him.

The man’s a legend and my ribs still hurt.

Sorry for the delay in posting about the awesome Save Jess-tival on Friday night, but it’s been a hectic and exhausting last few days.

Friday was amazing. A stellar line up including headline turns from Natalie Imbruglia and Ed Byrne as well as the fabulous Yeah Yous and Laughter for Life favourite Glenn Wool who unfortunately suffered from some sound issues meaning his set didn’t go down as well as it might have.

The revelation of the day for me, though, was the two singer/songwriters I’d not heard perform before. Susanna Cork is undoubtedly on the verge of great things – she has an amazing voice that’s beyond anything I expected and is a supreme talent. I can’t wait to pick up her album when it comes out and believe me, I’ll be plugging it like mad on here as soon as it streets.

The other half of the amazement came at first-timer Mr Robin K. Already on his Twitter feed he’s been hailed as the next Tim Minchin and on this performance you can clearly see why. Witty, emotional and often hilarious songs coupled with a little stand up in between made for a truly surprise package. Considering this is his first gig and he’s only been writing since the summer, this guy is undoubtedly going just as far as Susanna, albeit in a slightly different direction. You can check him out here.

The day itself was utterly exhausting. I was up at 8.30am to be at the venue for 10am and I worked through with various members of my team to 1am without a break. The crew who came in with their lighting rig and sound systems were brilliant, working far beyond their working time regs should have allowed them and never complaining or kicking up a fuss, just quietly getting things together to make it all happen.

Most importantly of all, our Jess was there throughout and thoroughly enjoyed it by all accounts, even allowing for the minor hiccup in the cab on the way home.

It was great to be working on something like this again, though, as something along the lines of a production/stage manager. It’s been a lot of work over the last 2 weeks, but really worth it for the buzz of pulling off such a massive gig with such big names.

Now it’s onwards and upwards, although downwards on the stage management ladder to ASM Wind in the Willows, which goes into rehearsals next Monday and promises to be challenging on lots of different levels. Can’t wait.

This is going to be a quick one as I’ve been up since 8 and in uni since 9 and am now flagging slightly.

Today was the first official day of classes for me at LIPA and I’m already assigned to work as an ASM on Wind in the Willows in November. As of right now I don’t know exactly what I’ll be doing for the show because we’ve yet to be taught that bit. It’s really exciting to be involed in a show so early on and in one that’s going to be such a biggie in the Paul McCartney Auditorium. More details, obviously, as I get them, which may be soon or may – being a lowly ASM – be a while.

Today we’ve had a “Production Breakfast” that didn’t have any food (believe me, students aren’t fans of false advertising) to meet the 3rd year students who will be our heads of department on the shows we’ve been visiting, as well as a full TPDT meeting that takes place for all years of the Technical and Design courses at lunchtime on a Monday for anyone to call for help with any of their projects.

This afternoon was Essential Stage Management – a course that will doubtless be invaluable as it runs alongside our first placements within the SM teams – which was basically just an intro for this week and will become more detailed. We do, however, have our first deadline for a piece of written work, although strangely it won’t actually be the soonest deadline. Go figure.

All day, though, my thoughts have been with Jess, who is still struggling. LLTGL have been working really hard on Twitter and the web all day to raise as much awareness as possible, including their Chair Emily hitting GMTV this morning to plead people to help. There’s now a large number of celebrities supporting her and tweeting about her, but every single person who signs on the organ donor register could potentially save her life.

If you’ve not signed up yet, do so now, here, and if you have then make it your mission to talk to at least one person every day this week about organ donation, Jess and how to sign up. If you are on Twitter, don’t forget to add #savejess to any and all of your tweets this week so we can get #savejess into the trending topics list and raise the profile even higher.

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.