How heart surgery gave me a new outlook

“I asked if my heart looked like a colander: they said it was more like a Swiss cheese – the holes were all different sizes.” That was the moment Justine Pearsall discovered she needed open heart surgery.

Justine was born with holes in her heart, but didn’t know until she was 42. “I have always had an active life,” she says. “I had palpitations and ectopic beats [skipped or extra heartbeats] as a young adult. I saw the doctor several times (I was in Australia, where I lived until I was 25) and was just told it was normal for a woman my age.”

Justine, an artist and film-maker who also plays in a band, moved to Hackney in east London in 1993. She is a keen swimmer, but when she started to feel frequent ectopic beats while swimming, she decided to see a doctor again.

“I never expected to discover that I had a heart condition. I was busy making a feature-length documentary about the amazing musician Imogen Heap, so I thought it was the stress of work that was making my heart do odd things.”

She was diagnosed as having a 7mm hole in her heart, known as an atrial septal defect (ASD). At first she only needed occasional check-ups. But five years later, she was told that the right pumping chamber of her heart was becoming enlarged, due to the strain of pumping with a hole in her heart. Over the following few years, things got worse. “I was becoming breathless and being woken up in the night with palpitations.”

Justine had further investigations and was told she actually had two holes in her heart. Doctors planned to repair them in a minimally invasive way, by inserting a device to close the holes – a smaller procedure than open heart surgery, where the breastbone has to be cut open.

But when it came to the procedure, Justine’s heart problem proved more complicated. “They found lots of holes: one 7mm (¼in), one 9mm (¼in) and lots of smaller ones. They weren’t able to insert the device because there were too many holes. My cardiologist, Dr Amit Bhan, broke the news that I needed open heart surgery.”

Preparing for surgery

Justine prepared for the surgery by practising pilates and tai chi to help her fitness, and by reading about what to expect.

When I came round, I was euphoric – partly from the morphine and partly because I was so excited that I had got through it

She had her surgery in April 2017 at Barts Hospital in London. “Even though there is a high success rate, you still feel like you’re facing your own mortality. When I came round, I was euphoric – partly from the morphine and partly because I was so excited that I had got through it. The whole team at Barts were phenomenal.

“I feel so grateful. When I was in hospital there was a woman in there who only found out she had an ASD after she had a stroke. So I feel very blessed to have found out.”

Staying positive during the recovery

Justine says that keeping her sense of humour was a vital part of recovery. “You have good days and bad days,” she says. “You have your hopes and dreams that you will be perfect after the surgery, but you are not perfect – but you will adapt. You just have to learn what your new normal is. I have some scarring on the heart, and I still have ectopic beats, but it’s not a major problem.”

Justine had already been through rehabilitation for a back problem in her 30s. “This wasn’t my first period of recovery, so I knew that no one else can do it for you. You have to find out what works for you, how to support your body and what to do mentally.”

Justine found cardiac rehab very helpful, both for the fitness classes she says were “really fun” and the chance to talk to the cardiac rehab nurse, Maureen, who she says was a great support.

She also finds being creative a useful part of the recovery process. As a professional film-maker, she decided to make a video diary of her recovery. She says: “I talk about what is going on and do updates for myself. I tend to be a cheerful person, but sometimes you are a bit down. Currently for me, it’s quite cathartic. As I have got better, I have done it less often.”

Another creative outlet has been ‘guerrilla gardening’ – planting flowers or vegetables in unofficial spaces. “I decided I am going to beautify the rundown areas of the estate where I live. I’ve been doing it for two years and it’s flourishing now. It really makes me feel better.”

Adjusting to life after heart surgery

Justine finds that keeping creative has helped her recovery