Living with heart failure

Anne Gayfer (pictured) experiences shortness of breath and fatigue on a daily basis. Sometimes, fluid accumulates in her legs, making it difficult to walk. Anne, 53, is one of the hundreds of thousands of people in the UK currently living with heart failure.

I keep as active as I can and lead a normal life

Anne, from Dartford, Kent, was diagnosed with the condition in 2011. She collapsed while out shopping with a friend and later on needed an implantable cardioverter defibrillator (ICD) inserted.

“It was all so frightening,” she says. “Psychologically, I couldn’t understand how I could go from being fine one day to being told my heart wasn’t working properly.”

Iftekar Gogah, a heart failure specialist nurse based in Southwark, London and a member of The Alliance, explains: “Your heart is like a pump and, unfortunately, in heart failure the pump has been affected. It can’t meet the demand for oxygen that the body needs.”

Getting the support you need

It’s common for people with heart failure to have good and bad days. “Sometimes it’s just harder to do things; the energy isn’t there,” says Anne. “On a bad day, I can be very breathless, my legs can swell up and I can’t walk much.”

There’s a lot of help out there, especially from cardiac nurses

Josh Sunkur, a heart failure specialist nurse based in Lambeth, London, says it’s vital that experts like him work closely with patients like Anne.

“Making sure you inform your heart failure team of changes in your condition is very important,” says Josh, who is a member of The Alliance. “Lots of people don’t want to bother anybody, but your nurses and doctors are there to help you and make sure you feel supported.”

Iftekar agrees that individuals such as Anne have an important role to play in the management of their own condition. “Anyone with heart failure who has a sudden surge in their weight needs to make sure they contact somebody. You don’t always notice it, especially if it starts to collect in your abdomen. That’s why it’s important to weigh yourself every day.”

Anne stays in regular contact with the hospital. “I’ve even struck up a good relationship with my consultant’s secretary,” she says. “She always makes sure I get answers to my questions.”

A positive outlook

Anne knows lifestyle changes can be as important to wellbeing as medical care. “I keep as active as I can and lead a normal life. I live on quite a long road, so I walk around the block when I can,” she says.

“I also have my housework, which keeps me busy, and I go shopping or for coffee with my friends any time I can.

“I volunteer for our local church too, doing things like delivering the church newsletters. We even held an event for the British Heart Foundation and raised £345 from our congregation. I decorated a tissue box with hearts specially.”

Anne received a combined pacemaker/ICD in 2012, a device that can help to increase the pumping action of your heart. “It really helped to improve my symptoms and I know now that if my heart goes into a dangerous rhythm, it can help to reverse it,” she says.

“The device was uncomfortable at first, but now I’m used to it; my friends call me Bionic Annie! “Whatever the future holds, I stay as positive as I can. There’s a lot of help out there, especially from cardiac nurses and specialists. I’d say to people with heart failure: don’t give up.”

• Read about 5 ways to manage your heart failure.