Archives: transplant

Today is my 17th second birthday: it’s been 17 years since I took my last breath with the lungs I was born with.

Every dawn brings a new day I wouldn’t have had were it not for my donor – and were it not for their family, who chose in their grief to give others a second chance that their parent, child, sibling didn’t get. I feel honoured every day and I hope I continue to honour them in turn.

However, I’d be lying if I didn’t say that there’s something about today that feels different and I’m not sure why it’s this particular year. All of the usual thoughts and feelings of joy, gratitude and celebration are there, strong as ever, but there is something else layered on top: I miss people.

When we held Laughter For Life II seven years ago, we worked out that I’d lost about 20 friends, a rough average of one every two years of my life. After my friend Kirstie died, I simply disconnected from the CF and transplant community; I couldn’t do it any more, it hurt too much. And for the first time since I was a teenager more than five years passed without losing anyone.

Grief behaves in mysterious ways. Like an ocean, it can sit calm and placid then twist without warning and begin to roll and roil, then thunder and crash, terrible and terrifying. Moments after you think you’re fine, you suddenly find yourself drowning again.

That’s where I am today, being buffeted by the malevolent seas of grief. I miss my friends.

I miss getting random texts from Emily about whatever scheme she was about to rope me into. I miss logging onto social media hoping to see comments and posts from the Jesses or Tor. I miss jumping into treatment discussions with Toria on the message boards back when they were polite and supportive. I miss getting CDs in the post from Anders as he tried gamely to further my musical education. I miss all the hours of laughter as our collective humour blackened in the face of unimaginable, unstoppable forces rising against us.

Today’s a day for celebration. I’m still able to enjoy it for the wonder it is. I’m still here and I’m here because of one person who I can never thank. Even when I feel unworthy, I’m honoured by the life they’ve given me.

But I also have a deep sadness in my soul that I can’t celebrate this with my friends. And I’m reminded of the lyrics from Les Miserables:

Oh my friends, my friends forgive me
That I live and you are gone.
There’s a grief that can’t be spoken,
There’s a pain goes on and on.

A friend got a transplant call today. Still waiting to see if it goes ahead, but just the possibility of it has me smiling from ear to ear.

Lots of things will be written and spoken of Emily Assen (neé Thackray) in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all new a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with CF.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, thought, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

“Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

“She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

“All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness your brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

“She was a line of poetry in a world of prose.”
Polly Toynbee

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!)

How do we mourn the loss of a friend?

How do we explain the inexplicable?

Grief’s many forms come to us unexplained, uncontrolled and unblemished – pure, raw and all-encompassing.

My instinct is to write, to share my experience, perhaps in the vain hope that catharsis will come through the words on the screen.

But now as I sit and write, as I try to find the words, wait for them to flow, they refuse to come.

You died on Boxing Day. I’ve been friends with your family through your sister since before my transplant when she set up an organ donation campaign at Durham University and included me in it.

I’ve shared the peaks and troughs of life with all of you over the last seven years of friendship – through the highs of getting married to the lows of losing loved ones – and your death is one of the toughest.

I try to smile. I try to remember the wonderful times we shared, like our mini-tour of Hadrian’s Wall this summer. I try to remember the laughs, the fun, the frivolity.

But grief doesn’t always give us what we want.

Instead I’m left thinking of the hole you’re leaving in your family, a family who have had to endure too much. A family of such belief and faith and certainty that I don’t understand the trials they are being sent. A family of such closeness, such togetherness, that losing another member of it is too much for anyone to contemplate.

At the same time, though, it’s hard not to feel a sense of wonderful gratitude.

I’m grateful to have known you, sir. I’m grateful to have known your wit, your views, your humour, your idiosyncrasies, the broadest of smiles, the most contemplative of minds. I’m grateful to have had chance to discuss the good and bad bits of new Doctor Who episodes as they were broadcast, grateful to have understood your passions and your passionate dislikes and everything that made you the man I knew.

Most of all, I’m grateful to the wonderful donor and their family who, when all else was falling in around them, took the bravest decision of all to grant the gift of life to a then-14-year-old boy whose heart was failing. I’m grateful that your family had nine more years to enjoy their son and brother. I’m grateful that you lived to meet your baby brother, who also left us too soon. I’m grateful that you were given enough time for me to meet you, to get to know you and to consider you a friend.

There is no escaping the sadness that your death brings, the black cloud of disbelieving grief that just wants you to drop a sarcastic comment on my Facebook status update one more time. There is no escaping the fear, the knowledge of the inevitability of something similar happening to me, that comes with transplant-related deaths. There is no escaping the reality that we’ll never hear you laugh again.

But there is no escaping the gratitude we all feel to have had our lives blessed by your presence.

And that’s what I’m going to cling to.

Gareth, sir, look after Theo, keep an eye on us and lie peacefully in the knowledge that you made our lives all the better for knowing you. Thank you.

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.

This weekend, I celebrate four years of new life and give thanks to the person that has given me this chance.

Thanks to my transplant occurring after midnight, it means I can enjoy two totally separate days:

The first day is dedicated solely to my donor, to give thanks, pray for their family and think of what they have done for me and everyone in my life by being so selfless at the worst of times.

The next day can then be exclusively a day of celebration, a day when I can allow myself to rejoice in the gift I’ve been given and the things it’s allowed me to do.

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