Valentine’s Day 2022 – NHS Organ Donation
Read our news article on Valentine’s Day in Welsh
With more than 300 people, including more than 40 children*, awaiting heart transplants for Valentine’s Day, NHS Blood and Transplant is calling on families to have a heart-to-heart about organ donation.
It’s more important than ever to talk
While heart transplants have continued throughout the pandemic, with only 7% less in 2020/21 compared to the previous year**, the heart transplant waiting list has increased by 85% in over the past decade, increasing from 169 patients in March 2012 to 313 in March 2021***.
It is more important than ever that families share their decisions about organ donation to save more lives.
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Adaya Henry, spoken word artist, encourages more people to discuss organ donation.
Read our powerful real-life stories
I didn’t expect my life to change so much.
Ryan Gabb, 30, from Wrexham, has been on the heart transplant waiting list since May 2018. Ryan’s life was turned upside down in September 2017 when he suddenly became very ill.
Ryan explains: “I had been feeling bad for a few weeks, just general fatigue and flu-like symptoms that I couldn’t get rid of. It was getting progressively worse and I was getting short of breath too. Knowing something was wrong I borrowed a friend’s Fitbit to check my heart rate and it was over 100 I knew I had to get checked out so I left work early and I went to the doctor.
“The GP sent me straight to the local hospital where I was told I had dilated cardiomyopathy and would probably need a heart transplant. I couldn’t believe what I was hearing and I was completely in shock, I knew I was not well but I didn’t expect something so bad.
Ryan was monitored over the next few days, but five days later was airlifted to Manchester after suffering cardiogenic shock. He was added to the urgent cardiac waiting list, but then had an emergency heart pump – known as a left ventricular assist device (LVAD) – fitted – before being listed again for a transplant in May 2018.
Ryan explains: “I’m doing pretty well with the LVAD right now but waiting for a transplant can be difficult. I constantly need to have my phone with me and I need a steady power supply so that my LVAD batteries can be charged. The worry of power outages is always on my mind. I was told that I might have a long wait for a heart that is hard to hear in my mid 20s. I had to finish my work because it was quite physical.
“I hope the coming year brings some normality and I also hope more people will discuss organ donation with their family and record their decision. You never know when or who might need this help. I was a regular blood donor and also joined the NHS organ donor register when I was 18. I thought both were important but I didn’t expect that my life is changing so much.
Even though organ donation law has now moved to an opt-out system in England, Wales and Scotland, many people are still unaware that families will always be consulted before organ donation. .
My transplant made a huge difference.
Stephen Papp, 56, from Nottingham, received a heart transplant in 2020, thanks to a donor family who said yes while losing a loved one during the pandemic.
After experiencing chest pains in April 2018, the active and athletic grandfather of five was diagnosed with dilated cardiomyopathy and days later was fitted with an LVAD. In 2020, the right side of his heart also started to struggle and he was placed on the urgent waiting list.
Stephen, a father of four, says: “Finding out that I had a heart condition was a hard thing to swallow, it was a huge shock. When I first went to the hospital, they didn’t know if I was going to stay overnight, so I was able to have the LVAD. I had a few issues but that 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 think too much, especially with COVID, and to stay positive. I had issues while I waited, sepsis and two cardiac arrests, and it was only my LVAD that was keeping me alive.
“My transplant made a huge difference, with the LVAD I was restrained but now I feel like I can push myself again. I go to the gym, hike and rock climb. I like to be active and I want to do my activities and get out as much as possible. I can’t express how happy I am. I am living my life and doing the things that I really love. Thanks to my donor and his family, I can 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 recorded their decision on the organ donor register of the NHS and only 38% say they have shared their organ donation decision with their family.
Jack was a strong advocate for organ donation.
Jack Baker, 27, was an intensive care nurse at Southmead Hospital who suffered a brain haemorrhage while cycling home from a day shift in August 2020. Jack, from Bristol, was brought back to Southmead where he was cared for by friends and colleagues. After his tragic death, Jack continued to donate his heart, liver and kidneys, helping four people.
Jack’s mother, Helen, says, “Jack was a strong advocate for organ donation and always carried an ‘I Donate’ keychain with him. He had ambitions to join the organ donation team within the hospital and had been encouraged by his fellow nurses to apply as we all knew he would have been fantastic in the job.
“When Jack was taken for his donation, staff from all areas of ICU wrote him messages on paper hearts that covered his bed. Staff lined the passage to say goodbye to him and they played his song “I live” by OneRepublic.
“We never doubted that Jack was a donor because it was a decision he had already made and we had the conversation about donation as a family. The fact that Jack was an organ donor helped us in our grief, the thought that there is still something of Jack in the world is a great comfort to us.
“The donation is such a positive thing to come out of a very tragic situation that we feel. We have heard from two of Jack’s recipients and knowing that his recipients are doing well and their lives have improved means everything to us. Jack will be loved and missed forever.
Primary Care Minister Maria Caulfield said: “It is vital that more people consider becoming organ donors, especially those from black, Asian and other ethnic minorities.
“This Valentine’s Day, I urge people across the country to talk to their loved ones about organ donation, because it could save someone’s life.
“Waiting for an organ match can be a difficult and isolating experience, and I want to thank Ryan, Stephen and Jack’s mother, Helen, for their courage in sharing such powerful stories.”
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said: ‘Thousands of people across the UK are waiting for the call that a donor has been found to save or transform their lives, and hundreds of them need a heart transplant. We encourage everyone to have this heart to heart now.
“Talk to your family and tell them your organ donation decision, let them be certain of that. And make sure you know what they would like 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.
*The active waiting list as of February 3, 2022 – 311 patients waiting for a heart, including 45 children
** Number of heart transplants decreased by 7% to 161 in 2020/21 from 174 in 2019/20
*** The number of active patients on the heart transplant list at the end of the year 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