Archives: organ donation

If you follow me on Twitter, you can’t have helped but notice that it’s been a very busy week, with no less than five pieces of media telling my story during transplant week. (Links to follow).

Transplant week is always a special week for me, for very obvious reasons. It’s a chance to harp on about the miracle of organ donation and for me to tell my story to inspire people to have difficult conversations with their family and sign the Organ Donor Register to record their wishes.

It’s also a challenging week. It forces my life into a spotlight, not just in the media, but in my own head as well.

Talking about the difference between pre- to post-transplant me shows just how far I’ve come, but also challenges my perception of my life and what I’ve achieved. It challenges my understanding of the world I live in and it challenges the decisions I’ve made in the years since my transplant.

And here’s what it all comes down to:

I feel a pressure to “succeed” and make a difference that my donor would be proud of.

The funny thing is that I know this is silly. I know there’s no reason for me to feel this way, or for it to leave me feeling inadequate if I haven’t achieved what I feel is “success”. Yet it’s a feeling I can’t shake.

As one very good friend said to me during the week when I voiced this to her, “Your donor will just be happy they’ve allowed you to still be here, regardless of what you’re doing and how successful you are.”

The problem I face is that I don’t know that for sure. Yes, it makes sense. Yes, I can see the logic. But I’ve never met and will never be able to meet my donor, so I don’t know what they think.

That’s why I’ve been so busy this week. That’s why I remain so willing to talk so openly about my transplant journey. That’s why I’ll always take advantage of transplant week. Because it’s the one chance I get to demonstrate just how much this all means to me.

To that end, I’ll be sharing links to the various media hits I had this week here on the blog in the next few days. If you’ve heard them already, thanks for listening. If not, perhaps download them and have a listen in the car or when you’re out for a walk. The two radio interviews are the most in-depth I’ve ever done and in both of them I share some thoughts and stories I’ve never shared publicly before.

And, of course, if you haven’t already, please sign the Organ Donor Register.

This week is National Organ Donor week, or Transplant Week if you’d rather the shorter version.

It’s a massive week for me, a chance to talk about the thing that I am most passionate about and, hopefully, to inspire people to sign the Organ Donor Register.

It’s only Monday morning, but already I’ve had three pieces go out: a short news piece on BBC Radio Northampton, a 3-minute news piece on ITV Anglia and a 15-minute chat on BBC Three Counties Radio yesterday morning.

Whenever I speak about cystic fibrosis or organ donation I know people listen. I’m blessed with both a compelling story and the means to express it. I’m not very good at identifying my own strengths, but I know communication is definitely one of them.

However well I speak or write, though, I know that most of my friends have heard this stuff a million times. Most people I’m connected to on Facebook have been with me throughout my whole journey and know exactly how I feel.

Despite this saturation, and to my surprise, they are still listening to everything I share. I’ve had more engagement on Twitter and Facebook in the last 24-48 hours than I’ve had for the last couple of weeks combined.

Why? Because I’m speaking with passion.

To listen to someone speaking with passion is to hear their words pour from their heart like a dam bursting to give way to the floods behind it. Regardless of whether you agree, more often than not you’ll listen to their arguments because of the force of feeling behind them.

Passion is honest. It’s almost impossible to fake passion, which is why politicians so frequently fall foul of the trap; they try so hard to sound passionate, but the effort always shows and comes across as a lack of sincerity at best, straight-up emotional manipulation at worst.

There is a rawness, a freshness, an authenticity to someone who speaks with passion that can’t be bought or faked. It’s naturally compelling and our ears tune into it without any conscious thought on our part.

I don’t like to bombard people with calls-to-action to sign the Organ Donor Register and talk to their family about their potential death. I recognise that it’s not a subject people much want to discuss. But weeks like this give me a chance to speak with passion about the thing I care most deeply about. So I’m grabbing this opportunity with both hands and I’ll be shouting from the rooftops all week.

You can help by simply sharing this post, or the organ donation link, with your friends so they understand just how important it is for us to stop three people every day dying while they wait for a transplant that doesn’t come in time.

(By the way, have you signed the Organ Donor Register? Do it now!)

Five years ago this morning I was on my way out of surgery and into 4 weeks of the hardest struggle I’ve ever known. A struggle so deep, so intense, at times dispiriting and verging on depressing that I never thought I would come through it.

But when someone else has died and you’ve been granted the gift of a second stab at life, you don’t give up. You don’t quit, you don’t say you’ve had enough. You fight. Hard. With everything you have.

Five years later, I still cannot adequately express the gratitude I feel. There are no words, no images, not even the right song to share the immensity of the feeling.

Instead, I’ve chosen to release a book, something to highlight just how hard everything that came before was. And, in doing so, it made me realise that the 4 weeks of struggle I went through immediately after my transplant were nothing compared to the 12 months that preceded it.

Smile Through It: A Year on the Transplant List – consisting mainly of my own blog posts over the year leading up to the big day and highlighting just how hard it is to live in the constant shadow of death – hits Amazon Kindle bookshelves today, soon to be followed by ePub and hard copy versions.

About the book

The journey I took over the 2.5 years I waited and the year documented on this site and in the book was not a pleasant or fun road to experience, nor one I would wish on the worst of my enemies. That’s not to say you can’t still have fun (as I hope the book shows), but it’s not the kind of thing I’d recommend.

The text has been left almost entirely as-is from the blog posts themselves, save for fixing a few glaring spelling errors. I could have edited more heavily, re-written sections to seem more prescient or circumspect, or removed several of the more mundane episodes, but I chose not to because what I think readers will gain, over the course of the 12 months-worth of posts, is an insight into the true roller coaster lifestyle that anyone awaiting a transplant must endure.

The book covers some of the most exciting times in my life – raising over £20,000 production managing a comedy gig for Live Life Then Give Life, being invited on to Radio 4 and speaking to national newspapers about organ donation and transplant.

But it also covers the terrible toll all of these took on my body and my brain. You’ll see how periods of activity are followed all-too-closely by enforced inactivity and the frustrations and anger that comes with them.

I hope more than anything that this book – like this blog – will serve to give people an illustration of just why it’s so important to sign up to the Organ Donor Register.

You’ll also see just what a dim-witted, self-indulgent, melodramatic, pretentious muppet I can be.

Hopefully, you’ll end up smiling through it with me.

How you can help (if so inclined)

There are 5 things you can do to help me spread the word about today’s release, if you’d like to:

1. Sign the Organ Donor Register (or your country’s equivalent) – the reason I’m releasing the book and writing this blog is to raise awareness of organ donation, so sign yourself up if you don’t do anything else. (Links to registering in the UK, US, Australia and New Zealand. If you have others, please let me know so I can add them)
2. Talk to someone else about organ donation – it’s only through conversation that we learn of each other’s wishes and help save lives through awareness and openness.
3. Talk about the book to others and share the link – costs you nothing, but may bring a little light into someone else’s life (I hope).
4. Buy the book – obvious, I know, but significant (and it’s less than a pound!).
5. Once you’ve read it, and if you liked it, leave a review on Amazon to help guide other readers. It take around 5-10 minutes and can really help in spreading the word into the wider Amazon readership.

About my ego

Releasing a book of any kind is something of an exercise in ego, even more so when it’s self-published.

I can’t deny that I hope people will take notice of this book, that I want people to talk about it, share it, encourage other people to buy it. I can’t deny that I want people to read what I’ve written and that releasing some of the posts from this blog into the world in this way is a great way to achieve that.

I also completely understand those who feel that it’s my ego getting the better of me and putting something out there that people can read the vast majority of – completely free – right here on the blog.

But it’s also about reaching an audience who don’t read blogs, who haven’t visited here and who possibly never would. It’s about spreading the message of organ donation as far and wide as we possibly can.

I’ve lost far, far too many friends who’ve succumbed while waiting for a transplant when it doesn’t have to be like that. Arguments about Opt-Out systems and changes in the NHS aside, if everyone in the UK who support the idea of organ donation signed up to the Organ Donor Register, we wouldn’t face 3 needless deaths every single day.

For my donor

I was saved by someone I’ve never met nor will ever have the chance to thank. I’ve been given a second chance to live a life of happiness, fulfilment and joy when one family have had their happiness untimely stolen from them.

If I were to sit and do nothing to show how enormous this unknown benefactor has afforded me, I truly believe I wouldn’t be able to stand proud and say I’d made good use of the time they granted me.

I would love for you to buy, read, enjoy and share my book. But if you don’t want to do that, let’s at least be talking to our loved ones about our own opinions, views and wishes relating to organ donation.

We can all be the hero of someone else’s life; don’t let that chance got to waste.

It’s fair to say I’ve been looking forward to this week for quite a while now.

As I explained on Friday, reaching the 5 year post-transplant mark is a significant step for anyone. It gives a remarkable psychological boost that – for me at least – makes me feel like I may be approaching normal. Ordinary. A regular person.

But, the truth is, I want to be more than normal. I relish abnormality – I want to be as different, as unique and as extraordinary as I have been up to this point. I don’t want to let 5 years pass and think it’s OK to let it rest.

I want to tell the world the impact that my donor has had on my life.

I want to show the world the power of transplantation.

I want to help people understand how important being registered to be an organ donor is and the lives you could save and transform.

I want to be remarkable in the truest meaning of the word.

I want all of these things, but more than anything, I want you to know that extraordinary lives can be lived by all of us every single day. With a deep breath, a smile and a kind word to those around us, we can all have an impact. By signing the Organ Donor Register, we can all leave a legacy. By making sure our loved ones know our wishes, we can all be a part of something bigger.

Tomorrow, on my 5th second birthday, I will be releasing Smile Through It: A Year on the Transplant List on Kindle, closely followed by ePub and physical versions, too. It’s designed to give people an insight into just how hard it is to do nothing but sit and wait.

I want you all to remember that there are too many people in the world with their lives on pause while they wait.

Don’t leave your life on pause; find the play button and let’s make sh*t happen.

Photo: Brian Gurrola on Flickr.

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.

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 her ((the concentrator had been named Claire)), Emily got her transplant ((double lungs, same as me)) 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.

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 organs ((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)) 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.

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 donation ((most of you will be familiar with my own transplant story from my SmileThroughIt journal)).

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!)