My journey with heart failure
When I was 39, I was pregnant, and three days after my baby was born, I was diagnosed with peripartum cardiomyopathy with severe heart failure. My heart was functioning at 18% when I went first presented to the emergency room. The last few weeks of the pregnancy, I thought that the fluid was normal and the breathlessness was normal. But when I went to A&E and into cardiology, and got an echo, they discovered that no, that wasn’t normal – it was peripartum cardiomyopathy and that’s how I first discovered I had heart failure.
Finding Support
A few weeks after I got out of the hospital, I heard of Heart Failure Warriors Northern Ireland. I saw them on Facebook, and I was actually on Zoom with Nicole. I liked her personality, what she stood for, and that she wanted to get patients together. I didn’t check online what heart failure was when I came out of the hospital, but I was very keen to speak to other people that also had heart failure and cardiomyopathy. I wanted to speak with somebody that was on the same level as me and that was the same age as well. Because everybody thinks that heart failure is for older people, but it’s not – it affects everybody. I was keen to get involved.
"Everybody thinks that heart failure is for older people, but it's not – it affects everybody."
The Power of Community
When I was out of the hospital for the first few weeks, I had a phone call with heart failure nurses, but it was about three months before I was back up seeing any specialists. So that time in between, when you don’t really know what is normal or, the WhatsApp group of the Heart Failure Warriors is there – you can put in a message, nobody will be given medical advice, but they’ll be saying, ‘that happen me once before, I did contact the nurses, but everything was okay.” It’s good just to be part of that group and to have that support.
Living With Heart Failure
Being part of the Heart Failure Warriors has helped me because I can see that there are people in their 40s and their 30s who are living with heart failure, that it’s not doom and gloom that you’re told you have heart failure. I’m doing fairly well, I get tired, and I’m only starting back to work on a part-time basis, but I feel that there is life after being diagnosed with heart failure. It’s not the end of the world, and you can still do everything you want to do.
"There is life after being diagnosed with heart failure. It's not the end of the world, and you can still do everything you want to do."
Advocacy and Giving Back
Being an advocate for others, as part of Heart Failure Warriors, means that I can give support to other people. My mum has heart failure, and I know the things she needs and others would need, especially the elderly generation, so I can support them, advocate for better healthcare for everybody.
My Message
Don’t Google what heart failure is – speak to someone who’s had it, speak to your nurses, speak to people in the Heart Failure Warriors group. Everybody is there to support each other and it’s not the end of the road – it’s only the beginning. This has opened up a lot of opportunities for me to get involved in things that I never would have been a part of.
