Thursday 4 July 2013

July and National Transplant Week 2013

It's July again and we are already nearly upon National Transplant Week, which runs during the 8th to 14th of July. I've been on the Transplant List for over 21 months now and it's beginning to feel an awful long time. Some times things feel easier, because yes I have adapted to living this way now for a very long while, but then it can feel harder as the illness doesn't get any better, has to be dealt with every day still and the hope that I had in the beginning that I will get a transplant is slowly being eroded as each day and week goes by.

For a long time I would wake up in the morning and think, 'well that's another night and day gone by without the phone call' and there would be a sinking feeling of disappointment followed by new hope that today's another day and today may be the day. I don't seem to do this any more after all this time, it's just become another day now when I wake.

I often wonder to myself, 'Am I actually on the waiting list? Did someone make a mistake and they forgot to list me? Has there been some sort of mix up?' My mind questions this all the time, 'Am I really on the system? Am I really on the list?' But I know I am on the list, I know they haven't forgotten me really, it is just the hard fact that there are so few donors available compared to so many of us who are waiting for transplant; and transplant is our only option for an improvement in our health. Waiting for three organs is a harder wait than ever.  

I recently read a book, 'Will I Still Be Me?' by Diana Sanders, who describes her journey through having a heart and double lung transplant. She describes waiting on the list as 'being in a corridor', doors all shut behind you, as there is no cure for the condition, and doors still shut in front of you until the transplant comes. My story mirrors hers in many ways. She lived in her 'corridor' for six months.


Well I suppose it does feel like being in a 'corridor' in some ways, but I've moved out of my 'corridor' now after all this time, my corridor has become something of a wilderness that I'm tramping through now. It's a hot, sandy, barren desert and there is a green oasis, and if I can just get to it, then all may be fine, but somehow every time I get nearer, it shifts again in the shimmering, dusty haze and gets further out of my reach; a mirage, always there on the horizon, but I just can't get to it. It's out of my grasp and dances before me in the dust, tempting me on, teasing me that it may change my life. But it doesn't let me catch it in my palm and leaves me lingering, languishing and lusting for what may be with my arms stretching out for it. I will catch it one day though when the time is right.

One of the hardest things in all of this is the feeling of having no control over my future and my family's future. Somehow we all feel we need to be busy and focused on other things to keep going forward and that is why as it comes to National Transplant this year, my family felt they had to do their bit and and try and raise as much awareness about both Pulmonary Hypertension and the chronic shortage of organ donors as we can. We feel we must try and do something about the situation, circumstances and world in which we now live in.

Rob is a governor at John Henry Newman Secondary School in Stevenage and he and Rose arranged to go in for the morning and talk to a group of two hundred sixth form students. The students know Rose as she only left the school last year and was Head Girl there during her final year. We were also given some fantastic resources to use from the transplant charity iLiveiGive, lots of flyers and t-shirts, which really helped us to promote our cause.


Talking about organ donation and transplant is a difficult topic to broach and Rob used real life stories of friends who we have met whilst on our transplant journey so he could bring the message home. He talked about Stacie, Bernice and myself, all waiting for new hearts and lungs; Eloise and Rhys, who have received new hearts that saved their lives; Martin, who is a living donor who donated part of his liver to save his son's Sam's life, Sam then went on to have a further transplant a few months later; Sarah, who sadly passed away while waiting for her new lungs and Toby, who was the same age as many of the students and donated his organs and saved lives after having a tragic accident. Toby had made it very clear to his parents that he wished to be an organ donor. I would just like to thank our friends for letting us use their pictures and help make Rob's presentation very real, moving and touching.

His presentation went well and over thirty students signed up straight away to the organ donor register and for the others, I think at least the seed has been planted and the importance of having a discussion with your family about organ donation, whatever your thoughts, has been brought to the fore.

Rob was also asked if he would be interested in doing another talk in another school and he had a busy week of interviews with the local newspapers and radio, in the light of both his talk at the school and National Transplant Week. So we are trying to spread the word about the shortage of organ donors as much as we can. There is a link below to his radio interview with Leona from Jack FM Hertfordshire, who are always more than too happy to help us raise awareness. His interviews with the local press will be published during National Transplant Week.


It was a good week for this to happen as transplant and organ donation hit the main news again when the 'opt out' scheme was passed in Wales. There seems to be quite a furore about it, but personally I am unable to see what the fuss is about: if you don't like it and feel really against it, then you just opt out; if you do like it, then you stay in; if you are unsure you opt out and and then opt in when you think you are ready. Nobody is forcing anybody to do anything they don't want to do. It is a known fact that 96% of the population agree with organ donation, but only 31% have signed up to the organ donor register, so hopefully more people are likely to stay opted in than opt out.

It is a just a shame though in my mind that a bill has to be passed in parliament to try and achieve this and that there is not just better national public awareness, starting in education as is done in Scotland. Countries like Scotland and Spain, despite differing national policies, have higher levels of people on the organ donor register and higher levels of family consent, because they have done a lot of groundwork in raising awareness with the general public of the issues surrounding organ donation.    


Another main issue is that of family consent and with whatever organ donation system is in place, it is of paramount importance to have a discussion with family about your wishes. You have to stop and think that if you were unfortunate enough to be in the position where your organs could be donated, your family will be in a distraught and devastated state and they really do not need to be faced with yet another difficult dilemma at that time. If they firmly know your wishes, then they are in a better place to face making a decision, whatever way.

So we have turned the wilderness of 'waiting' into keeping busy and it's been a busy week for our family in readiness for National Transplant Week and we still have more plans in hand to keep us busy and continue on our journey. Rob has joined the Transplant Choir and will be singing with them to raise more awareness at the 'Donate Life' concert in Sheffield on 13th July, Aled Jones and Matt Cardle will be headlining the concert - Rob now thinks he's up there with the stars! Rose has signed up to run the 'Run to the Beat' half marathon on Sunday 8th September. More about all that later though!

Facts and figures about Organ Donation in the UK

96% believe donating organs is the right thing to do; 4% don't believe in organ donation
70% haven't joined the organ donor register; 30% have joined the register
7500 plus people are waiting for an organ/ organs; 1000 people on average die each year waiting for an organ
Around 90% of families are supportive if the potential donor was on the NHS Organ Donor Register;
Around 40% of families agree to donation if the individual was not
96% of people would take an organ if they needed one; only 31% of people have registered to donate
By registering as an organ donor, you could save and enhance as many as 9 lives 

If you want to sign up to the organ donor register click on: www.organdonation.nhs.uk/



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  1. Unknown4 July 2013 at 15:13

    Yeyy! I'm so pleased it went so well! You and Rob really are wonderful advocates for the organ donation cause!!!

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