Archives: transplant

Ever since my transplant, I’ve been telling myself I wanted to take on some major physical challenges, like climbing the 3 Peaks and running a marathon.

The 3 Peaks, as blog readers will know, has now been cancelled twice due to my own poor health, but running a marathon has never really crept onto my radar in any serious way.

At Hope and Abby’s Battlefront event on Saturday, I met a load of other transplant recipients, one of whom immediately challenged me to the Brentwood Half Marathon in March. Without really thinking, I agreed.

Not only that, but the CF Trust have places on the Edinburgh Marathon on May 29th, just 4 days after my 30th birthday. Seems serendipitous to me.

I’ve now committed myself to the mammoth task of learning how to run, getting fit enough to do it and staying motivated enough to not be daunted by the 26.2 miles ahead of me on the start line.

Sometimes all it takes is the smallest of pushes to drive us forward, to take that first small step towards a goal and start building the momentum we need to get us there.

What can you do today to step towards your ultimate goal?

On Saturday, K and I travelled down to Covent Garden to help out some friends who’ve been working on one of this year’s Battlefront campaigns about organ donation.

Both of the girls concerned have siblings who have been saved by a transplant, so it’s hugely personal to them and one of them, Hope, is looking likely to see her mum go through the same thing soon.

Sarah has covered things in far more detail (and with many more pictures) on her blog, so I won’t rewrite the wheel (no, hold on…), but rather just say that for two young women to achieve what they did this weekend is remarkable in so many ways.

Both of them have been through huge amounts of emotional trauma with their loved ones in recent years and both would be forgiven for packing it all away in a mind-cupboard at the back of their brain to sit in storage, untouched for years to come. But instead, they choose to fight, to promote organ donation to as many people as possible and to set a new world record for the biggest number of sign-ups to the organ donor register in one hour.

I wrote last week about remarkable women I know; you can certainly add these two to the list.

Sometime even the smallest challenges can seem like marathons, the merest bump the greatest mountains.

Other time things seem to fade into the background as something far more significant comes to the fore.

Tor’s transplant on Monday night has thrown many things into sharp focus for me.

Remembering the immense fight she now faces, knowing the risks and rewards at play and reliving what it felt like to be in her position has really driven home the relative significance of everything else in life.

If there’s ever a time when we can take stock, refocus and understand the things that are most important to us, it’s when the life of a loved one hangs in the balance.

Don’t just let these moments pass you by: use them to understand your life and your thoughts and to take definitive action, whatever it may be, towards making your life a little more how you want it and a little less how you’re being lead.

Monday was a day of emotions like no other.

On the one hand, my friend and ally in many things, Tor, finally received the life-saving transplant she’s been waiting over 4 years for.  She can finally stop waiting and start the long journey into her new life.

No sooner had the emotions begun to settle than I heard that my friend and inspiration to many, Rachael, was preparing her final goodbyes, having been told by the doctor that there is nothing more they can do.

Tor always staggered me with her courage, fortitude and stubborn refusal to let CF beat her, reminding me in so many ways of the wonderful Jess, who we lost just days after her long-awaited transplant last year.  Tor has fought and battled and grappled with everything life has chosen to fling at her over the last four years – and throughout her life before that – and faced it with a characteristic smile, passion and commitment to not letting it get in the way.

Rachy has inspired many people, often first to lend support to people going through their own tough times, even as her transplant turned against her and her lungs deteriorated just 3 months after being given her second chance.  Always open, honest and available to all her friends, she humbles us all with her humility and love.

Rachy is all the more remarkable for having posted on her blog on Sunday a simple picture and the words

Rachael Wakefield, a life lived surrounded by love, with my second chance of life time is now precious, I’d like to thank all and everyone for your continued support, love to you all xxx Rachy xxx

Her quiet dignity in saying her goodbyes and inviting those of her friends and followers has seen her Facebook page deluged with outpourings of love and grief filled with the same passionate fervour as Tor’s has been with messages of excitement and prayers of hope.

What’s made this week so hard is that both of these women are at once utterly, beautifully unique, yet sadly not alone.

Every day we lose 3 people waiting for transplants in this country, mostly for the simple reason that not enough organs are available for transplant. If you haven’t already, you need to sign the organ donor register now.

It’s depressingly simple – taking less than 2 minutes and but a few clicks – but far too few people have done it.  No one like Tor should have to wait 4 years to be given a second chance at life.

Although we all know the risks going in to transplant, and although many of us have watched Rachy’s progress with a “There but for the grace of God go I” viewpoint, I know Rachy wouldn’t have traded a second of the post-transplant life had she known what lay in store.

I’ve always said I wanted six months of a better life post-transplant and I’d be happy. That a chance to play football with my Godsons, to run around in the garden, to do something without calculating how much oxygen I’d need to take would be enough for me.

I’ve been blessed with almost 4 years of new life and I thank my donor and their family for it every day. And I’m saddened every day for those who have never had the chance Rachael, or Tor, or I have had.

Don’t let life pass you by. Take it, seize it, make the very most of it. And please, once your done, pass your organs on.

When I first started blogging, back in the dusty days of 2006, I began with a Statement of Intent. At the time, it was designed to remind me of the reasons I started the blog in the first place as well as letting people know what they could expect from me and it.

Over the years my blogs have changed faces many times, but this new facelift is something more. The simplified design and stripped-down visuals serve to remind me of the meandering thoughts and intentions that I let take over here and to keep me sharply, intensely focussed on what this blog is becoming.

You’ll notice the old name, SmileThroughIt1, is back because rack my brains as I may, I couldn’t think of a better way to sum up the purpose of this site or the ideas I live by.

What is SmileThroughIt? Put simply, it’s a philosophy of life that helped carry me through some of my toughest times. While waiting for my transplant, not knowing if it would come in time, I learned to focus on the good things in life. More than that, I learned that if I could find just one thing every day that made me smile, that day had been worth it.

This site is here to help me make the most of the second chance I’ve been given and if, through that, I can help, inspire or motivate other people, so much the better.

Before the lengthy break in updates, I’d started blogging to please others, to write what I thought people wanted, to ‘optimise’ my posts. But looking back over my archives, both on here and the original site’s archives, I saw that my best writing and the most effective posts came not from targeting an “audience”, but rather writing something for myself.

Although I hate to admit it, it’s not just my blog that has been through many twists and turns and a distinct loss of focus. Everything that’s happened in this blog has been mirrored in my day-to-day life and it bothers me that I feel like I’m letting this second chance slip past me without grasping every second.

This blog will reflect my change in mood, attitude and approach to my second chance at life and, hopefully, will help guide others through similar changes in their own life.

This story has no planned ending, no final goal, no means by which to measure its success or failure. This blog, like all of us, just is. And what it is comes from what’s inside and the people who read, contribute and support its aims, ideals and author (that’s me) along the steps of its journey.

Come along for the ride.

1. and I’ve moved all of the archives onto this single site, instead of stripped across two blogs [↩]

Luck runs out.

In 2007, when I was struggling not just to enjoy but to hold on to life, I inherited what turned out to be a lucky portable oxygen concentrator from my good friend Emily, who had inherited it in turn from another friend.

Shortly after she received her1, Emily got her transplant2 and passed her on to me.

Six months after I adopted Claire, I was blessed with my second chance at life.

In deference to the lives she had touched and the continuing legacy of the lucky little concentrator, I in turn passed her on to my friend Sam.

The thing about luck is, it runs out. As I was celebrating my 26th birthday – a birthday very few, if any, of my family believed I would reach – Sam was slipping away and died shortly afterwards.

We can not – and should not – need to rely on luck to ensure people receive the transplants that will save and transform their lives. Luck should never come into it.

Please sign the organ donor register.

1. the concentrator had been named Claire [↩]
2. double lungs, same as me [↩]

This is Jo. She was a very close friend of mine.

She was waiting for a double-lung transplant, just like me.

She died in November 2009.

She is missed.

Sign the Organ Donor Register.

This week I have been engaged in numerous discussions of the organ donation system in the UK, mostly spurred by my appearance on Channel 4’s 4Thought.tv strand which asked, “Should Organ Donation Be Compulsory”.

Over the week, the show has featured a variety of views both for and against presumed consent and organ donation as a whole. One of these was Derek House, a Jehovah’s Witness who believes that all organ donation is fundamentally wrong.

While his views raised ire among the transplant community, it struck me that Mr House isn’t the man we need to be targeting. His religious beliefs preclude him from supporting organ donation: we’re not going to change that.

If we want to see the number of organ donors in this country increase, we need to tackle the vast disparity between the 75% of people who say they would be willing to donate their organs1 and the 26% who have signed the organ donor register. Those people don’t need convincing of the merits, they just need to be drawn out of their apathy.

Focusing our energies on a battle we’re already winning seems like a better use of resources than fighting one we will inevitably lose.

The same goes for any kind of battle you may be facing as an artist or entrepreneur: look at the fights you face and work out which ones are worth your energy.

Picking your battles is not the same as taking the path of least resistance. It’s about using your focus and energies on strategies and tactics that will make a difference, not banging your head against a brick wall.

1. the oft-quoted figure of 90% is, infact, the people who support the idea of organ donation; 15% of people support the idea, but say they wouldn’t donate their organs [↩]

Last night I was invited to K’s uncle’s Rotary Club meeting to give an after dinner speech about Cystic Fibrosis and transplant/organ donation1.

I have to confess I’ve been so swept up in work the last couple of weeks I hadn’t actually taken any time to prepare what I was going to say. It’s not difficult to tell my story off-the-cuff, but I usually like to have a rough game plan.

What I love about being unprepared, though, is what crops up from the proverbial blue when I’m winging it.

Last night I found myself saying this:

We all learn very early on that life’s not fair.

It’s not fair that anyone should have to go through what I’ve been through; it’s not fair for a 28-year-old to have been to as many friends’ funerals as I have; it’s not fair that a friend of mine has waited 2 years longer than I did for a transplant that still hasn’t come and is on the verge of giving up altogether.

By signing the Organ Donor Register you may not feel like you’ve done very much, but you will have taken a very, very small but very, very important step towards making life that little bit fairer for the people who are waiting [for transplants] and the families who love them, support them and don’t want to lose them when there’s a simple solution.

There’s an old army adage known as the 6 P’s that tells us “Proper Preparation Prevents P*** Poor Performance”. Yet sometimes – just sometimes – lack of preparation can lead to inspiration, to creativity and to an outcome you’d not considered.

I spoke at the Rotary Club of Harrow because I wanted to help spread the word about how life-transforming organ donation and transplantation can be. I walked away with several pledges to sign up and nearly £300 in donations for the Cystic Fibrosis Trust. Sometimes lack of preparation pays off.

(Now, if you haven’t already, go here and sign the Organ Donor Register!)

1. most of you will be familiar with my own transplant story from my SmileThroughIt journal [↩]

A good friend of mine has recently been seeing a psychologist to help them through a particularly tough time in their lives and we were chatting about it a little while ago. They told me something their Crazy Doc had told them about managing negativity which has really stuck with me.

Negative thinking is like standing at a train station. When something happens to provoke “bad” thoughts, a train pulls into the station intent on taking you off on a journey through all your worst fears and insecurities, dragging up all the things which will drag you down and leading you on a sombre dance of distress.

But if you learn to recognise the triggers, you can provide a platform announcer in your head who can flag up the destination of the train pulling in and you can choose to stay on the platform. You can elect not to take the train to the dark place, but instead to board the daylight express to the end of the tunnel. You just have to be able to recognise the moments when you need the announcer.

It’s all well and good noting wisdom and realising its benefits, it’s quite another to put it into practice in everyday life.

Which is why I’m so happy about my day today and the way I’ve managed to avoid getting on the wrong train and instead enjoyed my time at home and looked forward to other things later in the week.

K took my mum out for a girlie shopping trip this afternoon, nominally looking for Christmas presents, but largely to look at pretty things and coo. I stayed at home in the flat, mostly to sleep.

In days gone by recently, this would have upset me. Not because I yearned for the chance to run around town pointing at prettiness (I’m not that girlified…), nor because I had a desire to nick a melange of treats from the sweetie barrow, but simply because they were doing something that I felt I couldn’t do.

But I chose not to get on that train, to avoid the Sloppy Bollocks Express to Tear Town, and instead jump on the Chill Train to the City of Smiles. Rather than see the afternoon as a missed opportunity to go out, it was instead a perfect opportunity to sit back, relax and pop on a DVD that I love but rarely get the chance to enjoy. (That’s The West Wing, not anything best “enjoyed” alone, you dirty minded older-brother-types. Yes, I’m talking to the twins.)

I find myself at my computer this evening not sullenly relaying stories of my abandonment, but finding ways of communicating how far I feel I’ve come in the last 24 hours in breaking the back of my adaptation process.

Life’s all about the ups and the downs – riding the waves and hoping not to fall off. But you always know that even if you do, all you have to do is paddle back out and you’ll pick up another one soon enough.

I may not get back to the level I was at before this summer, I may have to make changes and adjustments, I may want to scream and shout and tear the place down, but I know that with the love and support of all those around me, I’ll keep on going.

Kipling once wrote, “If you can meet with Triumph and Disaster / And treat those two impostors just the same,” then, “Yours is the Earth and everything that’s in it, / And – which is more – you’ll be a Man, my son!”.

My Triumph is waiting for me in the wings, and Disaster may be in the way, but you know what? I can take it. Hurl whatever you want at me, World, because sooner or later I’m going to have new lungs and I’m going to hurl it straight back!