Julie was diagnosed with Hypertrophic Cardiomyopathy; an enlarged heart, and underwent emergency surgery to install a cardiac device called a Cardiac Resynchronisation Therapy (CRT). Her active life changed instantly. Feeling helpless and dependent on her husband, Ted through post-op convalescence, she was terrified about how she would manage her new health challenges in the future.

“My midwifery career was over. I would never be well enough to get back to work again. This was a condition I knew nothing about and I desperately needed information and support.”

Hypertrophic Cardiomyopathy is a genetic condition and within months her mother, aunt and brother back in England were also diagnosed and had pacemaker surgery.

Still reeling from the shock, Julie set up the Bayside Heart Support Group for patients and carers to discuss issues and host guest speakers. The group thrived through warm friendship and sharing an understanding of how to manage their precarious condition.

“Although it’s a necessary medical term, the word ‘failure’ is so negative. We preferred to call it ‘heart care’,” she said.

In 2012, unable to work full-time to meet the conditions of her visa, the couple was forced to return to the UK leaving behind their son, Teddy who had fallen in love, found a career track and settled into the Aussie lifestyle. Life back in Essex has had its joys; building a spacious new home on a plot of land in Essex and enjoying being mother-of-the-bride at her daughter Keely’s wedding.

Julie is cared for by the Royal Brompton Hospital in Chelsea through a remote monitoring device. She sings the praises of the “fantastic” NHS.

Julie is a now a Patient Educator with the Pumping Marvellous Foundation the UK’s patient led Heart Failure Charity which gives support for heart failure patients and their carers throughout the UK. Julie has represented the Pumping Marvellous Foundation as an expert patient at NICE (National Institute of Health and Care Excellence)

“There are lots of positive things people with ‘heart failure’ can do for themselves.”

“For me feeling positive came through education and learning about the condition. You have to wake up every day and be your own cardiologist.”

“You check your weight every day to monitor fluid retention, a symptom of heart failure. Your kidney function is influenced by your heart, so if your heart’s not working properly your kidneys don’t work properly and you get a build up of fluid, which makes it harder for your heart to pump. Fluid retention can make you breathless as fluid builds up in your lungs. Being aware of your body’s needs means taking drugs on time every day and avoiding salt, alcohol and fatty foods.

“At the beginning I didn’t switch off. I was monitoring my body constantly. Now I have times when I’m not thinking about my condition. I wont let it take over my life.

“It’s important to have a support team to turn to if you’re having a bad day. If you have a blip, don’t panic, you’ll be fine tomorrow!”

 

Julie appreciates the days she’s feeling well and meets up with friends, walks her dog or exercises at the Heart Rehab gym. She recently did the long haul flight to Australia when her grand daughter, Grace was born.

“People say ‘You look so well!’ This is a hidden condition you have to manage from day to day.”