New Heart Foundation project allows Kiwis with heart disease to share their stories

Dorothy Quill knew how to cope with panic attacks but the debilitating episodes she started having more than seven years ago were different.

"I've got a history of panic attacks. I couldn't figure out why I was getting them. Once you've got a few coping mechanisms you can carry on through [panic attacks]. These ones I couldn't carry on through."

When she asked her GP why she might be getting panic attacks again he suggested it might be a heart problem - paroxysmal atrial fibrillation (AF). An ECG confirmed that.

Atrial Fibrillation is a common type of irregular heart rhythm that causes poor blood flow to the body. When you have AF, the top two rooms of your heart (atria) start making extra fast and irregular electrical signals. These extra signals make the atria twitch or quiver (known as fibrillation). About one in 25 people aged over 65 has AF.

Paroxysmal AF is the type that comes and goes. Episodes can last for hours or days but it goes away on its own without any medical treatment.

During one hospitalisation Quill, 79, of Whangaparaoa, learnt her heart stopped beating for about six seconds before kicking back in again.

She said it was the slow beating and the palpitations which were the most disconcerting for her.

"I just feel blimmin awful. It's very, very frightening until you get used to it. Afterwards you feel like a rung out dish rag for a couple of days," she said.

"The thing about it is there's no predicting when it's going to happen."

The most severe episodes would cause her to fall to her knees and almost faint.

She said the condition "wrecked" her confidence because she became reluctant to commit to anything or go on outings in case she had an episode.

Since then Quill has had a pacemaker put in and has learned how to best deal with an AF episode but said she wished there was some sort of support group with others who had a similar condition.

That is why she has shared her story on the Heart Foundation's new website, Journeys, which officially launches tomorrow night.

The site allows people to share their journeys with heart conditions and read about others who are living with similar issues.

"It's great. I've read most of the stories on there and it's absolutely fabulous. I think, 'oh, that's what happens to me'. You think, 'oh, wow, I'm not by myself after all," Quill said.

Heart Foundation medical director and Waikato Hospital cardiologist Gerry Devlin said the inspiration for Journeys was born out of a survey of people living with heart disease which asked where the gaps were in the service being provided by the foundation.

About three-quarters of those surveyed felt alone, in need of reassurance, in limbo, abandoned, fearful or isolated.

The website was a way to make the foundation more relevant to people living with heart disease and make sure they were getting the support they needed, Devlin said.

"People are people people," he said. "We still like to hear from people who have been through the same experience we have been through."

Devlin said Journeys was the first step towards the foundation's aim of helping New Zealanders with heart disease live full and healthy lives. He was hoping it might help support groups to spring up around the country.

Visit the Journeys website to share your story or read others.