Friday, 1 February 2013

A Dedication to 1500 Families and Many More ...

7500 plus people waiting for an organ across the UK

Today just happens to be my 500th day of waiting for my heart and lung transplant.

Now I think good luck and good fortune have both been on my side this last 500 days. I have managed to stay stable and reasonably well and I have managed to adjust to my life somehow living with Pulmonary Hypertension and being on the Transplant List. There have been ups and downs along the way, but I'm still lucky enough to be on the transplant list and still hoping and waiting.

1000 people on average die every year waiting for a transplant - that's 3 people a day! 

Not so for many people though, during these 500 days, not so have some stayed well enough to withstand transplant while they endure the long wait, not so have they managed to maintain their health, not so has the medication and treatment kept working wonders for them. During this 500 days many people will have lost that chance of hope that sparkles and twinkles like a star, possibly just a few moments away, enticingly in front of them, keeping them motivated that something can be done to bring them back from illness and back into a normal life again.

While I've been waiting full of hope for 500 days, 1500 will have died while waiting for their transplant, because of the chronic shortage of organ donors. They would have had to face the cruel fact that they will lose their battle against whatever illness they are enduring, they will have to suffer not only being unwell, but knowing they are going to leave their family and friends behind and all the richness that life offers.  

During these 500 days many more will also have been informed that the waiting time has run out and they are no longer fit for the transplant process, yet they will have to continue the battle with their illness, this time without any future hope before them.

96% believe donating organs is the right thing to do!

Imagine those 1500 patients and more have families and friends that will be left devastated and having to cope too, and the tragedy and rippling effect of this shortage of organ donors can be multiplied hundred fold.

I think if 1500 people had lost their lives in a tragic disaster, then there would be a national outpouring and demands and enquiries to know how such a tragedy could be averted, but we are losing all these people quietly and it is slipping by unnoticed, the tragedy is only unfolding within each family, so little gets done about it.

Only Around 30% - The amount of registered organ donors!

So why don't people sign the Organ Donor Register? Why is it all so complicated to get people to sign up?

70% -Haven't joined the organ donor register!

Well I only have to look at my own story to see some answers there. Three years ago I was happily getting on with my life, happily enjoying my family, happily enjoying my teaching and happily enjoying and making most of what life has to offer. Dare I say it? I was rather ignorant to the world of transplants because my life had never been affected personally by it. Of course I've been profoundly touched by illness and death, that is part of everyone's life, and not just through family and friends, but through various media too. That said, however, I had never met anyone with a very rare illness or anyone who had had a transplant. All the illnesses I have encountered through friends and family have been various cancers and more common heart and lung disorders and much of what is presented in the media concerns these diseases. That speaks for itself really, of course we need to know as much as possible and be fully aware about these diseases, it is more than likely at sometime in our lives we will be affected by them or someone we know will be and we want to be best informed how to cope or recognise the symptoms. I suppose it is just less common to be affected by transplant in your life.

Around 90% of families are supportive if the potential donor was on the NHS Organ Donor Register 
            Around 40% plus of families fail give consent  

So never having been personally affected and busy getting on with living, I didn't really give much thought to organ donation. I knew that Rob, my husband, carried a donor card and wished to donate his organs if he were to be a victim of tragic circumstances and knowing this don't think I would hesitate to give my consent to his organs being used to save lives.  I suppose, also, knowing this I thought if anything happened to me, then he would decide to do the same for me. I didn't ever really stop and consider how hard this might be for my family in tragic circumstances and I suppose I just pushed it to one side and thought well it's probably not going to happen to me anyway; these things happen to other people! I never in my wildest dreams stopped to consider that I might need a transplant, let alone three organs. I suppose no-one really likes to think too deeply about whether they may be in a tragic accident or not or that they may need a new organ, because they are incurably ill.

96% - The amount who would take an organ if they needed one!

So I guess just from my own experience that it is just complacency and a reluctance to confront the fact that you may be ill or die tragically and this being an unlikely event that means most people don't bother to sign the organ donor register. Let's face it, it isn't really a natural daily occurrence to be thinking about organ donation and transplant unless you are being affected by it somehow. Sometimes when we talk of transplant, it may imply that we are wishing someone to die, so that their organs can be used, but it really isn't like that at all. It's just hope that if there were to be an unavoidable tragic death, which does happen and often, then out of that tragedy some good will come and someone may be given a new life, because that is what the donor has wished for in the event of something tragic happening to them.    
So to save all these tragic deaths continuing, we have a culture that needs to change now and we need to make organ donation a natural process and thing to do, for those people who are willing to donate.

It was pleasing to find out this week from Papworth Hospital, that ITV/ITN are running a project to raise awareness of organ donation. They are planning to dedicate a day in February to a campaign to increase the awareness of the need for organ donors, under the title 'Have a Heart'. They plan special programmes to highlight the desperate need for more organ donors. Look out for 'Daybreak', possibly on the 13th when my very special and inspirational friend Stacie will be appearing to tell everyone about her life with Pulmonary Hypertension and what it is like living on the Transplant List. ITN are also hoping to film a real transplant operation taking place at Papworth Hospital, if one so happens to occur during the next week or so and I know several of us have consented to filming in the hope of raising awareness should we be lucky enough to get the call. It is the real stories, from patients themselves that can make a difference.  I'm really hoping that their programmes will get the momentum going and get people thinking and talking about transplant; it is fantastic that a big media organisation is going to do this promotion on our behalf.    

By registering to be an organ donor, you could save or enhance as a many as 9 lives!

Most people will never be in the predicament of either being an organ donor or an organ recipient, but a few of us do find ourselves in unusual positions. Of course my life changed profoundly two and a half years ago when I was diagnosed with a rare, incurable and eventually terminal disease and suddenly found myself needing not only one organ, but three. I was suddenly woken up to a whole new world of transplant, well not just woken up, but brutally kicked out of bed and shoved right into the middle of transplant's midst! Suddenly I was prepared to not just take one organ, but three and in turn prepared to give my organs to others should anything happen to me, also I've agreed to give my diseased organs to research to help others just for good measure.

So my attitude was changed in a very dramatic way, but luckily and hopefully for you, you won't to need to go through any of this drama to start making that small change; all you need to do to help this change happen is simply to stay on your computer for five more minutes and if you haven't done so already:

sign up to the Organ Donor Register:

sign the epetition for the 'opt- out' organ donor scheme:

Finally, don't forget to tell your family your wishes!


  1. Such a good blog Kath! I really hope it happens for you soon :) xoxo

  2. Oh Kath that was said beautifully and I do hope you will hear soon, you should send that to the newspapers it is such good reading and highlighting the need for organ donation, I wish you all the very best of luck xxxx Rita