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.
Stephen Papp, 56, from Nottingham, received a heart transplant in 2020, thanks to a donor family saying yes while losing someone they love during the pandemic. After experiencing chest pains in April 2018, the active and sporty grandfather of five was diagnosed with dilated cardiomyopathy and days later he was fitted with a LVAD. In 2020 the right side of his heart started to struggle too and he was placed on the urgent waiting list.
Stephen, a father of four, says: “Being told I had a heart problem was a hard thing to swallow, it was a massive shock. When I first went to hospital they didn’t know if I would make it through the night, then I was able to have the LVAD. I had some problems but it didn’t stop me, I went back to the gym, coaching, climbing, with the LVAD in tow.
Then I had to be admitted again and added to the urgent transplant list. I tried not to overthink things, especially with COVID, and stay positive. I had challenges while I was waiting, sepsis and two cardiac arrests, and it was only my LVAD keeping me alive. My transplant has made a massive difference, with the LVAD I was held back but now I feel I can push myself again. I go to the gym, I am hiking and climbing. I love being active and want to do my activities and get outside as much as possible. I can’t express how happy I am. I am living my life and doing the things I really like. Because of my donor and their family, I get to spend time with my children and grandchildren.”
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.
Jack Baker, 27, was an ICU nurse at Southmead Hospital who suffered a bleed on the brain while cycling home from a day shift in August 2020. Jack, from Bristol, was taken back to Southmead where he was cared for by friends and colleagues. After he sadly died, Jack went on to donate his heart, liver and kidneys, helping four people.
Jack’s mum, Helen, says: “Jack was a passionate advocate for organ donation and had always carried an “I Donate” keyring. He had ambitions to join the organ donation team within the hospital and had been encouraged by fellow nurses to apply as we all knew he would have been fantastic at the job. When Jack was taken for his donation, members of staff from all areas of ICU wrote him messages on paper hearts that covered his bed. Staff lined the passageway to say goodbye to him and they played his song ‘I lived’ by OneRepublic. We were never in any doubt about Jack being a donor as it was a decision he had already made and we had had the donation conversation as a family. The fact that Jack was an organ donor has helped us in our grief, the thought that there is something of Jack still in the world is a great comfort to us. Donation is such a positive thing to come out of a very tragic situation we feel. We have heard from two of Jack’s recipients and to know his recipients are doing well and their lives have been improved means everything to us. Jack will be loved and missed forever.”
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.
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Minister for Primary Care Maria Caulfield said: “It’s vital more people consider becoming organ donors, especially those from black, Asian and other ethnic minority backgrounds. “This Valentine’s Day I urge people across the country to have a heart-to-heart with their loved ones about organ donation as it could save someone’s life. “The wait for an organ match can be a tough and isolating experience, and I want to thank Ryan, Stephen and Jack’s mum Helen for their courage in sharing such powerful stories.”
For more information, or to register your organ donation decision, 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.