Today is Valentines Day and it got me thinking all about hearts of all kinds… Like any love story it began dramatically…
The doctors don’t think I was a fan of being born and had a suspected heart attack. I was born in Norwich, but at a few hours old had to be helicoptered to Great Ormond Street Hospital (GOSH) in London. At GOSH it was discovered I had a leaky valve in my heart. The doctors were brilliant and got me to the age of two years-old before I needed any open-heart surgery. I had a valve repair in October 1992, but unfortunately needed another valve replacing in January 1993. I did not recover at all well from this second heart break.
Therefore it was decided my only chance of survival was a new heart - a heart transplant! This was still pretty radical in the nineties and practically unheard of in paediatric patients. In 1993 they had only been doing children’s heart transplants for 5 years in the UK, so all they could tell my parents was I might gain five years. It was a big risk as it could’ve ended in rejection, but like any true love story it was worth the risk.
Not long after my Mum got a call from one of the nurses at the hospital checking in to see how we were. She then mentioned that the hospital had a “match” for me and that an ambulance would be with us in twenty minutes. My poor Mum then had to get my Dad to rush back from work and arrange for a friend to take my sister - they left all the doors open with the dogs running around as I got bundled into the ambulance.
Luckily, my donor’s heart was the perfect fit and on the 16th of April 1993 my heart transplant began and finished in the early hours of the 17th April. That wasn’t the end of my incredible surgeon's work as they carried out another heart transplant that night as well. Despite all the odds and possible complications of any Hollywood romcom I recovered miraculously well and was able to begin school as normal 4 year old.
Now 26 years on I am really living happily ever after. I am very well and able to do anything I wish to in life such as sports, travel and working full time. This is all thanks to my donor and their amazing family. I received my heart from another child. I cannot begin to understand their family's pain at losing a child, but have been told by my donor family that it is a comfort to know their child saved my life. Some light has come out of a very dark time.
But not everyone is so lucky; not everyone gets their perfect match…It was back in 2015 after losing a number of friends who needed a transplant, but didn’t get one in time that I was feeling so helpless that I decided to channel this pain and do something about it. Following extensive research, I decided despite all the fantastic awareness various organ and tissue donation organisations were doing it wasn’t reflected in the number of donors. I discovered that 96% of the UK population would take an organ donation if they needed one, yet only 36% has actually got around to signing up to become an organ donor. I decided something as radical as my heart transplant was in 1993 was needed - like a whole new dating approach.
Currently in England we choose to donate organs and tissues through an Opt In system where we have to sign up to become an organ donor. But I discovered other countries such as Spain use the Opt Out system where you make the effort to opt out if you don’t want to be a donor, otherwise it is assumed you were in favour. As with the Opt In system your next of kin will be consulted.
As a result in July 2015 I began a petition to reform the organ donation system and following a few signatures, talks and support from the local media the campaign began. My local MP who raised it as an issue in Parliament and Wales introduced the Opt Out system in December 2015 and it all began to seem possible. Along the way I discovered a number of other women with similar petitions, but we still had a way to go as the protagonists in this tale before we reached our goal.
Thankfully 9-year-old Max Johnson was our Knight in shining armour. He received a heart from 10-year-old Keira Ball who died in a car accident and wanted more people to receive the lifesaving transplants they were dying for. The Prime Minister took Max seriously and agreed to introduce the opt out system. It was to be called Max’s Law, but Max requested it be called Max & Keira’s Law to reflect his wonderful donor as well.
Finally, almost 5 years on the Opt Out system will be introduced in England this Spring!
You should always tell your loved ones your wishes, but this is especially important due to the nature of many donor’s deaths which can be sudden and unexpected so it can save them trying to work out what you would’ve wanted at an unbearable time.
Although 3,286 people have received a transplant since 1st April 2019, there are currently over 6,000 people waiting for a transplant. As you can see the sums do not add up. 6,000 people in the UK alone are currently dying to live – this is their chance at a better quality or some quality of life.
The aim is when the Opt Out system comes in as many people as possible are aware of this change so they can make an informed decision about whether they wish to opt out. This will hopefully mean more people on the list receive their transplant before they become too sick to have one or die waiting. At the moment 3 people die a day waiting for a transplant.
So please if you haven’t already poured out your heart today to your nearest and dearest do so now and tell them your wishes.
If you wish to become a donor before the Opt Out system is introduced please visit:
https://www.organdonation.nhs.uk/register-your-decision/register-your-details/
If you need any further information about the introduction of the Opt Out system then please visit:
https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/faq/what-is-the-opt-out-system/
Alternatively, you can contact me via email: optoutcampaign@gmail.com
So why not give you heart away this Valentines? It could be the greatest decision you ever make.
Lucy xxx