People in East urged to 'have a heart-to-heart' about organ donation on Valentines
Families in Norfolk and Suffolk are being asked to discuss their wishes
Last updated 14th Feb 2022
People in Norfolk and Suffolk are being encouraged to have a 'heart-to-heart' about organ donation this Valentine's Day.
NHS Blood and Transplant are encouraging friends and families to talk about their wishes, with a simple conversation potentially proving life-saving in the future.
It says there are currently over 300 people, including more than 40 children, waiting for a heart this Valentine's Day.
It added that while heart transplants continued through the pandemic, 7% less were carried out in 2020/21 than in the year before.
Demand for heart transplants has also rocketed in the last decade, with the waiting list up 85% from 169 patients in March 2012 to 313 in March 2021.
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.
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."