A wife has paid tribute to her 'incredible' husband who died while waiting for a heart transplant. Luke Barnes, who lived in Mapperley, was taken off his life support on Friday, March 17 after he suffered an irreversible brain injury as a result of his implanted heart pump failing.
The 34-year-old was diagnosed with cardiomyopathy, a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body, in 2018. The IT worker was admitted full-time to Royal Papworth Hospital, Cambridge, in November 2022 as it was no longer safe for him to be at home while he awaited a heart transplant.
During his stay in hospital he helped to spread awareness online about the reality of living with heart disease and being on the transplant list.
He then underwent emergency surgery to fit a BiVAD, a mechanical pump installed to help the heart function, on December 8. During this procedure, Luke, who was a dad to his three-year-old son Kobe, suffered a cardiac arrest on the operating table but survived.
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Tragically this pump then failed in the early hours of Thursday, March 16, with the subsequent surgery and life support needed to save his life causing huge blood loss. His wife Isobel anxiously waited with Luke after he returned from a CT scan the next day (Friday, March 17) to examine the damage caused by the lack of blood flow, but at 4.30pm she was told he had suffered an irreversible brain injury, forcing her to make the heartbreaking decision to abide by Luke’s wishes and withdraw his life support.
Mrs Barnes, 22, who works as an ambulance service call handler, said: "There are so many words I could say, but none of them would ever do him justice. He was just truly the most incredible man in the whole world.
"He was a very funny man, very straight-talking as well. Most of the time that was beautiful, he was so honest with everyone and you would always know what he felt about you. He said a lot of things that will forever stay in my heart and mind, reminding me of how special me and Kobe were to him and how much he got through his days because of us.
"People don't talk about the stuff he talked about, he shared his most difficult times. And he did it with joy and positivity."
Luke first discovered his heart disease after being examined following a rugby injury. He had a passion for sports, with family members telling him football scores and Nottingham Forest's anthem 'Mull of Kintyre' playing in the background as his care was withdrawn.
His family and friends had initially fundraised so Isobel could stay by his side as he was treated, and now more than £4,500 has been donated through a GoFundMe page towards his funeral. Heidi Berkeley, 24, Luke's cousin-in-law, said he had a huge impact on the people who knew him.
"He was a rugby player before he was diagnosed and he played football, too, so he was sporty. He's got a three-year-old son who just absolutely adored him. He was just so funny, he was always having a laugh - through the hardest days he was finding joy.
"There were eight of us in the room when he passed away, there was just so much love for him in the room. He definitely touched a lot of people's lives, the amount of donations and messages about people's time with Luke has just been lovely.
"One of the main things he was really passionate about during his hospital stay was spreading awareness, letting people know the reality of living with heart disease and being on the transplant list - him and Belle had an Instagram page where they shared updates all the time."
You can donate to the fundraiser for Luke's funeral here
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