With more than 300 people, including more than 40 children*, waiting for a heart transplant this Valentine’s Day, NHS Blood and Transplant is calling on families to have a heart-to-heart about organ donation.
While heart transplants have continued throughout the pandemic, with only 7% less in 2020/21 compared to the year before**, the waiting list for a heart transplant has risen 85% in the last decade, from 169 patients in March 2012 to 313 in March 2021***. It is more important than ever that families share their decisions around organ donation to save more lives.
Ryan Gabb, 30, from Wrexham has been waiting on the heart transplant waiting list since May 2018. Ryan’s life was turned upside down in September 2017 when he suddenly became very unwell.
Ryan explains: “I had been feeling unwell for a few weeks, just general tiredness and flu type symptoms that I couldn’t shake off. It was gradually getting worse and I was starting to become breathless too. Knowing something wasn’t right, I borrowed a friend’s Fitbit to check my heart rate and it was over 100, I knew I needed to get checked out, so I left work early and went to the doctors.
“The GP sent me straight to the local hospital where I was told I had Dilated Cardiomyopathy and I would likely need a heart transplant. I couldn’t believe what I was hearing and was in complete shock, I knew I hadn’t been well but was not expecting anything so serious.”
Ryan was monitored over the next few days however, five days later, he was airlifted in a helicopter to Manchester after going into cardiogenic shock. He was added to the urgent heart waiting list but then had an LVAD – emergency heart pump fitted – before being relisted for transplant again in May 2018.
Ryan explains: “I am doing pretty well at the moment with the LVAD but waiting for a transplant can be hard, there is a constant need to have my phone with me and I need a regular electricity supply so my LVAD batteries can be charged. The worry of power cuts is always in the back of my mind. I have been told I could have a long wait for a heart which is hard to hear in your mid-twenties. I had to finish my job as it was quite physical.
“I hope the year ahead can bring some normality and I also hope more people will discuss organ donation with their families and register their decision. You never know when or who might need that help. I used to be a regular blood donor and I also joined the NHS Organ Donor Register when I was 18. I thought both were important, but I never expected that my life would change so much.”
Even though the law around organ donation has now moved to an opt out system across England, Wales, and Scotland, many people are still not aware that families will still always be consulted before organ donation goes ahead.
While families are more likely, and find it easier, to support donation when they know it is what their loved one wanted, only 43% of the UK population have registered their decision on the NHS Organ Donor Register and just 38% say that they have shared their organ donation decision with their family.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, says: “Thousands of people across the UK are waiting for the call that a donor has been found to save or transform their life, and hundreds of them need a heart transplant. We encourage everyone to have that heart-to-heart now.
“Talk to your family and tell them your organ donation decision, leave them certain of it. And make sure you know what they would want too, so you can support their decision. This Valentine’s Day have a heart-to-heart and share your organ donation decision to help save more lives.”
As part of this Heart-to-Heart campaign, NHS Blood and Transplant will be sharing a video by spoken word artist Adaya Henry to help encourage more people to have the conversation about organ donation. To view the video visit: https://youtu.be/eC_TFqdVKRA.
For more information, or to register your organ donation decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23. NHS app users can also use the service to record, check or update their organ donation decision.
*The active waiting list as at 3 February 2022 – 311 patients waiting for a heart, including 45 children
** The number of heart transplants fell by 7% to 161 in 2020/21, from 174 in 2019/20
*** The number of patients active on the heart transplant list at year end has increased by 85% since 2012. There were 169 people on the waiting list for a heart in March 2012 compared to 313 at the end of March 2021