Real Life: "I carry my heart in my handbag!"
Here in the UAE, many of us swear we couldn’t live without our handbags – but Daniela Vargova can say that with more conviction than most. For her arm candy conceal batteries for a clever device she needs to stay alive. When her heart succumbed to an often-fatal disease, surgeons fitted the 30-year-old with a left ventricular assist device (LVAD), a machine that will support the failing organ until a donor is found. In the meantime, she must carry the power pack for her battery-powered bionic heart everywhere she goes.
“Sometimes I find it tough carrying the LVAD around with me all the time,” says Daniela, 30. “It’s quite weird knowing that it’s thanks to something in my handbag that I’m alive. But I know how lucky I am – I’ve been given a great chance to live that not everyone has.”
She adds: “I wouldn’t get the opportunity to do all those little things in life that people love if it wasn’t for my LVAD. Because of the LVAD in my bag, I get to spend time with my husband, Feliks Rahuoja, and my family. If it’s in a handbag, no one even notices that it’s there – you wouldn’t even know I have any heart problems.”
Daniela first became unwell in December 2012, when she developed a severe cough and started having chest pains.
Cardiac Arrest came as a shock
“I knew something was seriously wrong because I was really ill all the time – I could hardly do basic day-to-day things,” she recalls. “Eventually, we went to hospital and on the way there I had a cardiac arrest.”
Daniela was diagnosed with ventricular arrhythmia – an abnormal heartbeat – and was fitted with an implantable cardioverter-defibrillator (ICD), similar to a pacemaker.
“We were told it was fairly easy to manage and that I’d be fine. I’d been suffering with problems for about six months at that point,” she recalls. “I thought my problems were over, but the symptoms continued and I was eventually diagnosed with dilated cardiomyopathy, which meant my heart was too weak to pump the blood around my body.
“I was told my only option was to have a heart transplant and I was transferred to Harefield Hospital, near London. It was just so unexpected and overwhelming – I’ve never heard of anyone having a transplant before. I’d been in hospital for three weeks when I suddenly had a massive cardiac arrest.
“I was rushed into theatre and doctors told Feliks I had a very low chance of survival and that he should call my family as it was unlikely I’d make it.”
My Surgeon the Superhero
Despite having the ICD, Daniela’s heart function had plummeted to below one per cent. “I was in theatre for almost 10 hours and came out the next morning on ECMO, a type of life support.
“It was really touch and go, but luckily I managed to come around nine days later,” she says. “Not long afterwards, I woke up and my cardiac surgeon, Mr Simon, who’s like a superhero to me now, came in and told me I was going to be given an LVAD.
“Feliks and I had seen some other patients with them, and the nurses had told us about them, so we knew how incredible they were. We couldn’t believe I might actually be given one. It was fantastic.”
In August 2013, Daniela underwent almost four hours of gruelling surgery to be fitted with her LVAD, an operation which has changed her life forever.
“It’s been a long road to recovery,” she says. “I officially left hospital in November last year, but now I get to live life normally.
“The LVAD is fitted internally, so there’s a wire that goes from the external pack into my groin and travels up to my chest. The external part includes the batteries that keep the pump going, which is the part I carry in my bag.
“It weighs about 2.5kg, so it’s pretty tiring to carry it around all day. I have to change the batteries every six hours, so I always keep two spares too. There’s no limit to how long I can have it in, though, and there are some people I know who have lived with an LVAD for several years.
“It’s hard to live with sometimes but it certainly does the trick.” Daniela is overwhelmed with gratitude for the medics she credits with saving her life. “I am very aware that I am incredibly lucky to have an LVAD,” she says. “It’s given me my life back and I couldn’t be happier. I could have quite easily died last year, so I just feel lucky to be alive.”
She adds: “I want to say a big thank-you to everyone in Harefield and Bath Royal United hospitals, especially my cardiologist, Rob Lowe, my cardiac surgeon – or Superman – Mr André Simon and the transplant and VAD teams. Without them, I wouldn’t be here.”
Operation was touch and go
Daniela’s illness has also been traumatic for her husband, 29-year-old Feliks. He recalls: “When Daniela had her cardiac arrest I was told she probably wouldn’t make it out of theatre. I had to wait in a little room while she was in surgery for almost 10 hours. I can remember that room perfectly – it was a horrible time. But luckily, she made a wonderful recovery and she’s doing really well now. It’s been amazing.”
What’s in the Bag?
“A ventricular assist device is a mechanical blood pump that is used to support the function of a failing heart,” says Daniela’s surgeon, Mr André Simon, director of transplantation at London’s Royal Brompton & Harefield NHS Foundation Trust. “They are used in patients like Daniela, whose only option is a heart transplant, and this is known as a ‘bridge to transplant’.
“The device enables patients to leave hospital and continue to lead their lives until much-needed donor hearts can be found. Many people are able to go to work, school or university and we even have patients who travel abroad with their unit. Unfortunately, there is a severe shortage of donor organs and many patients live with theirs for several years before receiving a transplant.”