Archives: Transplant

I’ve just got back from 3 days in Durham where I was asked to talk at an event for the CF Trust for CF Week this week.

It’s an event I first spoke at 3 years ago when I was just 6 months post transplant and it was great to go back to the lovely ladies lunch and share my story so far as well as my hopes and dreams for the future.

The biggest part of my speech was concerned with helping raise funds for the CF Trust, who work tirelessly year-in, year-out to fund clinical research to improve drug therapies, hospital care and overall outcomes for people with CF across the UK.  My hope – as I expressed to the women at the lunch – was that by helping fund the CF Trust’s research into gene therapy and developing a therapy that prevents the eventually-fatal lung damage from CF we can prevent anyone having to go through what I’ve been through.

Not only have I, obviously, been through the hellish wait on the transplant list not knowing whether my call would come in time or if I would die while I wait, but I’ve also had to watch far too many of my friends die while they waited. And now I’m having to watch Tor (who I wrote about most recently in my previous post) endure over twice the wait I went through and see the life and the hope slip in and out of her eyes each and every day.

By donating to the CF Trust this week (or any week), you can make a huge difference to the lives of children being born with this disease today and prevent them ever having to experience the truly devastating side-effects of a life lived in the shadow of an early death.

This time in 4 weeks I should hopefully be nestled in my bed starting two days of recovery from the 3 Peaks Challenge and right now I’m hopeful, a little fearful and very, very tired.

Training has stepped up a notch, there’s all kinds of logistics to organise, a team-meeting with 5 of apparently the busiest people on the planet and I’ve still got to fit in work, quality time with K and a trip to Durham for a fundraiser for this years’ CF Week in aid of the CF Trust, a cause you’ll all know is close to my heart.

Today, though, that all blurred into fairly frank insignificance following Tor’s latest post on her blog following her seventh false alarm call for transplant.  I’ve written before on here about my false alarms, but also about how Tor inspires me to want to do better, to push myself harder and to achieve everything I can while I’m able.

One quote from her post today stood out for me, when she talks about her fears for the future, post-transplant:

I [am] worried that I … could never live a life that was enough to honour my donor.

This is a fear that lives with me every day. It’s not a fear that overwhelms me, but rather motivates me and gives me my ultimate drive to succeed, whether personally, in business or my personal life.

If my donor is looking down on me now, I want them to be proud of me. I want them to feel that they made the right decision in letting me live after they died. I want them to know just how much I value the gift I’ve been given and how I live each and every day in their honour, under their guidance and with their presence always around me.

That’s why I’ve started chasing the dream of the 3 Peaks and it’s why I want to keep pushing myself to do more.

I must apologise for the lack of updates. If I’m honest, it’s been a rough time lately and with all kinds of work pressures and the added physical trial of training full-bore for the first time in my life, I’ve honestly been questioning whether or not this was going to happen at all.

I’m delighted to announce, however, that a major pharmaceutical company have agreed to fully-fund the 3 Peaks trip and that we’ll definitely be headed north to Scotland on Friday 3rd June to begin 24 hours of mountain-climbing, mountain descents and driving in between.

I was recently featured in another article online to promote not just the trip but the amazing support the guys at Topnotch Health Clubs have given me, including invaluable training advice and nutrition tips.

Really, though, there’s only one thing that stands out today, with 7 weeks to go. Today in the gym I ran, comfortably, for the first time in my life.

After a 15 minute session walking at speed on an incline on the treadmill, I spent the final two minutes jogging on the flat and for the first time ever – absolutely literally – I didn’t have to stop from feeling out of breath, sore in the legs or with chest pains ((not heart-attack chest pains, but I used to get a lot of pain across my scar when I tried to run)).

If nothing else, I’ve proved to myself and my donor that these new lungs are being used for the very best they can. I’ve never been fitter, never felt better and never been able to take so much on my plate as I have at the moment.

I cannot describe how amazing and brilliant this feels. And I cannot express my gratitude to my donor and their family for giving me the chance to feel like this. If you haven’t already, show your support for me, for the trek and for organ donation by signing-up and/or reTweeting/sharing the dedicated sign-up link from NHSBT, http://bit.ly/oli3peaks

The most common question I get when talking about the 3 Peaks is “Why?”.

I have two answers, both of which are exemplified in things I saw on Twitter today.  Number one (courtesy of the marvellous Sheri Candler):

Number two is this series of Tweets from a very close friend:

Just had call number 5 but no good for me. Gutted.

@Tor87

Feeling awful but thank you for keeping my spirits up, so many lovely friends. Please remember the amazing donor and their family today. x

@Tor87

God this has hit me hard. In lots of pain, breathing awful, body wont work. You cannot imagine.

@Tor87

Not only has Tor had to suffer yet another false alarm, but even while she’s hurting, struggling to breathe and exhausted from over 5 hours of travelling, she’s thinking of others.

And when she says, “You cannot imagine,” she absolutely means it. If you haven’t been there, you cannot possibly understand the rollercoaster of emotions that is involved with a false-alarm; being prepared to have your life changed forever before being told it’s not going to happen. And knowing that if it doesn’t happen today, it may never happen at all.

You want to know why I’m subjecting myself to 24 hours of mountain climbing following 3 months of hard training?

Tor is why.

As the old proverb tells us:

Every great journey begins with a single step…

Today, my great journey to summit the 3 highest peaks in the UK within 24 hours began with the single, simple step of inducting myself at the gym.

I’ve been lucky enough to be sponsored by Topnotch Healthclubs with a gym membership and, if you’ll pardon the pun, top-notch training advice and personalised programmes to get me ship-shape and walking-fashioned in time for the challenge in June.

This blog, in what must been its umpteenth iteration ((having followed pre- and post-transplant journey and a short “trial” stint at university)), will become home to OLI’S 3 PEAKS – the online diary of my build-up, training, highs and lows of my bid to raise awareness of organ donation by attempting a frankly very silly challenge for someone with a) a total lack of any kind of physical fitness and b) a very low tolerance for pain or discomfort.

Here, as they say, goes nothing….

For years the iconic sports brand have been telling us to ‘Just Do It‘. It works as a slogan because it’s short, it’s snappy and it’s easy to remember.

It also works because it’s true; the single best way to make anything happen is just to do it.

If you’re sitting around thinking of all the things you ought to be doing, you’ll never get anywhere. If there’s something to be done just get up and get on with it. The sooner you do, the sooner it’ll be done and you can get back to the other tasks on your To Do list ((or just chilling out)).

Even when it comes to big things, although you made need to break them down into smaller, more achievable chunks, you start down the road by simply taking that first step.

Yesterday, after much delay and dilly-dallying, I finally committed myself to attacking the 3 Peaks Challenge later this year. How? I contacted a journalist friend at my local paper and got them to run this piece on me to help me find a trainer.

Not only will I hopefully get some expert supervision and advice, but I’ve also announced the trip to the world in a way that will keep me honest, make me stick to my goals and motivate me to achieve what I’ve set out to do.

Expect more on the 3 Peaks and my journey towards it in the coming weeks. But, right now, what are you doing to “just do” today”?

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!)

It’s been a while. In truth, I didn’t want to blog until I could find something positive to put down on these pages. And after a month like January, that’s been very, very hard work.

In addition to the funeral of K’s aunt, who died in late December, this month has seen us lose Jess (as detailed in my previous post) and then, last week, a very close friend’s baby brother, too. It’s been an absolutely heart-wrenching start to the year, especially after 2010 began with such excitement and promise.

I’ve also been hinting and nodding towards a new project which was supposed to be up and running by the end of January, that still hasn’t taken off. However, the reasons for that delay are more exciting than they are dispiriting, but all the more frustrating that I can’t share any details of what’s happening just yet.

One element of the project I can talk about is the attempt – along with my band of merry men – to complete the 3 Peaks Challenge in May this year, the weekend before my 28th birthday. It’s a truly daunting task and the most common reaction I get when I tell people about it is, “Why?”.

So I’ll tell you all now to prevent the mass of comments and emails about it following this post: because I can. Because I’m now able to push myself physically; because I’m able to see what my mental strength can carry me through; because I survived when others didn’t and have been given the perfect opportunity to do the things I want to do; because I can help to show the world just what an amazing difference organ donation can make to someone’s life.

This time three years ago, I was still recovering from Christmas and wondering if I’d see my 25th birthday. From then to now I’ve been able to go the kinds of things I only ever dreamed of and pushing myself physically and mentally through the toughest of challenges is something I’ve always wanted to do. And now I can.

There will be more details on the Challenge itself as well as the wider project as things progress, but today felt like a good day to sit myself down, slap myself round the face, pull myself out of my funk and start moving forward with the gift that is another year of life. Today was my first session at the gym in preparation for the 3 Peaks and it hurt like hell – but the pain of physical endeavour pales in comparison to the pain that my friends and their families have been through in the last month.

This is for everyone who can’t, everyone who wants to and everyone who never will achieve their dreams.

The turn of 2010 was filled with so much promise. Despite the difficulties of 2009, the challenges, the ups and downs, I’ve been incredibly excited about the prospects for the new year. And I still am.

But not all great things can come to pass and, following my previous post, most of you will now be aware that Jess lost her fight late on Tuesday night. After four years on the waiting list (two years longer than anyone ought to survive after being listed), Jess was just too weak to stand up to the rigours of the massive transplant surgery she underwent at the end of December.

A fighter to the last, she was up and about late last week, starting to be moved around by the physio, but she was hit by insurmountable post-transplant complications that her body just couldn’t cope with. She died peacefully with her family by her side.

Tributes have been pouring in on Facebook, Twitter and all over the news pages and TV channels which followed her story so closely. Many, many people have been affected by Jess, some who never even met her. Everyone is now feeling the overwhelming sadness and sense of lost that is infinitely magnified for her family.

Jess death will not be in vain, that much is clear. Despite the grief throughout the community, campaigners who’ve worked with and alongside Jess have already got their heads down pushing forward into new plans, ideas and ways to ensure that no one in the future has to wait until their too ill to receive a transplant.

As for me, the pain of losing two friends in two months is strong, but not as strong as my determination to make the most of the new life I’ve been given. The new project I’ve been working on for the last couple of months is finally coming to fruition and I’m pulling together several strands of things I’ve always wanted to do.

Here’s to a 2010 that serves not only to bring health, joy and happiness to all of us, but also to honour the memory of all those we’ve lost. Take care of yourself and remember to try – hard as it my be – to smile through it.

On Sunday night I went to bed with my phone on and next to my pillow. I was fully expecting a midnight text to tell me that our wonderful fighter Jess had finally lost her battle after dragging herself through one last Christmas.

In the middle of the night – just after midnight, in fact – the phone did indeed buzz. I fumbled around, picked it up and read the message.

“Jess is having her transplant NOW”

I came on here this morning to leave a message about everything that’s happened with Jess in the last few days, but in fact my friend Sarah has beaten me to it and written such a concise and accurate blog detailing the events, emotions and thanks that we have all felt over the last few days that instead of trying to rehash it badly, I’m just going to send you over there to read about it. It’s also worth taking a look at the previous post as well, detailing as it does a family’s first Christmas together thanks to the wonder of organ donation.

Spare a thought as you read this for the family who have suffered the worst of Christmases and keep Jess in your thoughts and prayers. Although she’s finally been given her gift, she’s got a long road ahead of her and there are no guarantees. But one thing we all know is that she wouldn’t be with us now were it not for her call finally coming after more than four years of waiting.