Victoria Thomas collapsed suddenly at the gym she said ‘it went black’
Victoria collapsed during a gym boot camp(Image: Rowan Griffiths / Daily Mirror)
While in the middle of boot camp at the gym, Victoria Thomas’ heart stopped beating. The netball-loving sports enthusiast began to feel exhausted after a weightlifting session.
She recalls: “I said to my friend that I didn’t feel like I had any power or energy, like it had just drained from my body. I was also feeling slightly dizzy. I’d only just said it when I suddenly collapsed on the floor.”
The 35-year-old accountant had gone into cardiac arrest. An ambulance arrived within minutes and paramedics started CPR– but as the clock ticked on with no result, fears rose that Victoria’s heart had stopped for good. She says: “When it happened, it went black and there was nothing, then I became aware of looking down on my body.
“I was floating near the roof and was looking down at myself on the gym floor. My first thought was that my legs looked really fat. And when I looked at a photo of myself taken just minutes before I collapsed, I could see that my legs were actually swollen.
“I didn’t see a light, or feel peaceful, I was just watching myself, and I could see some yellow machines around me.” Eventually, after 17 minutes, Victoria’s heart sprang back into life.
Now 41, she says: “They never gave up on me. The minutes ticked by, but they refused to stop trying. I was so young, fit and healthy and it had come completely out of the blue.”
Victoria was then taken to Bristol Royal Infirmary, where she spent three days in a coma, writes The Mirror. She pulled through and doctors fitted her with a defibrillator to restart her heart in the event her body went into cardiac arrest again.
She was allowed home, but over the next few months her heart stopped on several occasions, with the defibrillator shocking it back into rhythm each time. She says: “I went back to playing netball three weeks after it happened, with my defibrillator. It was a shock whenever it went off, but it allowed me to carry on living my normal life, which I was so grateful for.”
And in February 2021, Victoria discovered she was expecting a baby. She says: “Being pregnant was wonderful, but it put pressure on my heart and I started going into cardiac arrest regularly – although the pacemaker would kick in.”
Finally, when Victoria was 24 weeks pregnant, she was given a reason for the repeated cardiac arrests. Specialists had diagnosed her with Danon disease – a rare genetic disorder, that is thought to affect fewer than a million people worldwide.
It is caused by a problem with the LAMP 2 gene, which produces an enzyme that is responsible for a process that keeps cells clean and healthy. Life expectancy for those with the disease is 19 for men and 24 for women.
Victoria is the first person in her family to have Danon disease, and there is no history of any heart problems in her family. She says: “When I read the letter from the genetics team telling me what I had, I was 24 weeks pregnant with Tommy and I was so shocked, I couldn’t take it in.
“The doctors wanted to deliver Tommy at just 24 weeks, but I persuaded them to let me hang on a few more weeks. If he had been born at 24 weeks then he may not have survived. But by the time I was 30 weeks I couldn’t breathe properly because of the fluid build up around my body, so I had to have an emergency caesarean.”
Thankfully, newborn Tommy was fine. Victoria says: “It was so amazing to be a mum and to hold Tommy in my arms after everything.”
However, Victoria, who is now a single parent after splitting up with Tommy’s dad, discovered her heart had been damaged further by the pregnancy. By the time Tommy was six months, Victoria was so breathless that even getting up the stairs was a massive struggle. In April 2022, a hospital check-up found her heart was functioning at just 11%, meaning she was experiencing end-of-life heart failure.
“I asked the doctors how long I had left and they told me I had just another couple of months. It was devastating. All I could think of was Tommy. I vowed I wouldn’t leave him.”
Victoria was put on the urgent donor register. She says: “I had to stay in hospital, and when my sisters brought him in to see me I would cuddle him and cherish every moment I had with him. Time was running out for me, and I had to pray that they were going to find me a heart in time. Two hearts were found – but further tests revealed they weren’t suitable.”
Victoria, who now lives in Gloucester, says: “It was devastating. Each time I’d get my hopes up thinking this was it, that I was going to be saved. And then I was told that the operation couldn’t go ahead. I didn’t know if they were ever going to find a heart in time. I’d given up all hope.”
But in April 2023, finally a suitable and usable heart was found. Victoria had the transplant at the Queen Elizabeth Hospital in Birmingham. The surgery was a success and she was allowed home that May. “I’d been in hospital since Tommy’s first birthday in October and now I was finally home with him. I couldn’t believe it,” she adds.
Now, Victoria is back to full strength, after a few episodes of initial rejection. She’s also back to playing sport, and is due to compete in both volleyball and basketball at the World Transplant Games in Germany next month.
“After the transplant, I didn’t think I was going to be able to play sports again. However, I was introduced to the British Transplant Games and that opened my eyes to the fact I could do exactly what I wanted. I played volleyball and I was picked for them to play for the British team. Tommy is now three, and tests have shown he does not have Danon disease.”
Checks have also put Victoria’s other relatives in the clear. She’s grateful to her donor’s family and hopes that they get the chance to see that she has done something amazing with the brave decision they made at a terrible time.
She adds: “I’m spending time as a mum with my son and I’m back playing the sport that I love. I feel like I’ve been given a second chance at life, and to be a mum. It’s the greatest gift I could ever have asked for.”