My journey with heart failure
Life for me today is very different from what it was two years ago, when I was diagnosed with dilated cardiomyopathy and heart failure.
I have a personal connection with heart disease because my mother was diagnosed with heart failure and dilated cardiomyopathy over 15 years ago, and at the time we were told as a family that it wasn’t genetic. But then I was diagnosed — and shortly after, my twin sister was too. We now have quite a big connection with heart disease.
Creating a Support Network
I like to think that I am one of the driving forces behind Heart Failure Warriors Northern Ireland. I had a lot of help and support from the heart failure nurses and cardiologists, but more so a lot of other patients and their families. When I got out of hospital, I started looking around for help and support and I couldn’t find any for people with heart failure. That was the driving force — that we need something unique and something special, for me and a lot of other patients and their families.
"I often think about what would have happened if I had gone home… I might not have woken up again — I owe my husband my life."
My Diagnosis
My diagnosis came as a shock and I’m actually very lucky. I want to hold my hands up and say that my husband he actually saved my life because, whenever I had all the symptoms, and I had been on and off the phone with the doctors, trying to see where I was on the waiting lists, and getting upset, he insisted on taking me to hospital when all I wanted to do was go to bed, lie down and go to sleep. It was the shock of my life getting this diagnosis, and I often think about what would have happened if I had been stubborn, just gone home and gone to bed… I might not have woke up again – I owe my husband my life.
Advocating Together
I like to advocate, talk to people and reassure them that if you face any of these signs or symptoms or you’re worried about anything, you’ve really got to keep pushing for answers. You are your biggest advocate, and you know how you’re feeling, you know when something isn’t right, and just keep pushing for that help and support.
"You are your biggest advocate… you know when something isn’t right — keep pushing for help and support."
Facing the Fears
When you get this diagnosis of heart failure, there are a lot of misconceptions and fears. You think “my heart is failing, that’s it, I’m going to die”. That’s not necessarily the case. We’ve got many people in our Heart Failure Warriors group that have had heart failure for nearly 20 years and they’re still living and enjoying life.
Building a Family
This community is actually like a family – one that I always say you didn’t want to be part of, but now you’re part of it and you’re not alone anymore. It’s such a special family – we all look out for each other and encourage each other and is so wonderful to see that. When you get a diagnosis of heart failure and you talk to another patient, there’s that understanding and special bond.
When It Affects the Whole Family
The diagnosis itself affects not just the patient — it really impacts our families too. I know how it affected my own children. They just weren’t themselves and they said: “Last Christmas, everything was OK, and a few weeks later, we nearly lost you”. That was a year later, and they were still thinking about it.
"Last Christmas everything was fine… a few weeks later, we nearly lost you."
Advocacy in Action
I have realized that advocacy and using my voice to raise awareness on behalf of others is really special to me. I’m happy to shout from the rooftops and speak to our politicians and our healthcare professionals and get things across of how patients and their families feel and for the things that we need. So, I’ve been to our local government, I’ve been to governments even across the water in the mainland, and I just keep advocating for people for changes to be made to improve our quality of life.
You Are Not Alone
To those who just been diagnosed with heart failure: “You are not alone. There’s a lot of us out here and just reach out. We’re all here, ready and waiting, and willing just to welcome you into our family.”
