This World Heart Day, we spoke to Kevin Hall, who six years ago, was diagnosed with Atrial fibrillation (AF), a type of heart arrythmia. Kevin describes his experience and what he has learned since being diagnosed – detailing seven things he wished he had known about AF.
My journey with atrial fibrillation, often referred to as AFib or AF, has been one with many learnings. It’s a heart condition that I had actually never heard of or had even crossed my mind before I was diagnosed. Looking back at the past six years, there are things that did surprise me as I continued to learn about this common heart rhythm disorder and that I think are important for other people to know and understand.
What I think everyone should know about AF.
- Understand the difference between heart rhythm and heart rate
I didn’t know anything about AF before being diagnosed – I had never heard of the condition or the term “arrhythmia” in general. I couldn’t liken it to anything.
First, it’s important to understand the difference between heart rhythm and heart rate. Your heart rate is the number of times your heart beats per minute. Your heart has its own electrical system which sends out electrical impulses causing a heartbeat.[i] Arrhythmias are caused by a problem in this system, which can affect how fast or regular your heart beats.1 You can have a normal heart rate but still experience an irregular heart rhythm. With AF, a type of arrhythmia, people experience an irregular or often abnormally fast heart rhythm.1
Look out for common symptoms of AF and go to the GP or hospital if something feels wrong. My first signs were feelings of dizziness and I would get palpitations, all of which I initially ignored. I do believe I was lucky – there are some people who have no symptoms at all (asymptomatic), which is why it is super important that you know your pulse.
I’ve since found some smart watches or ECG devices that help monitor your heart rhythm at home. You can also carry out a manual pulse check, which you can learn how to do here.
- AF can go away, but can also come back
Almost like magic, AF can be there at one moment and gone the next. You could go to the hospital with symptoms, and by the time you see your doctor, the symptoms are gone. With nothing to present, you’d then be sent home.
I remember the time when my symptoms of AF had gone for about six months. In fact, I completely forgot about it. However, the condition was still there in the background and little did I know that it would present itself again. It’s important not to ignore the signs, the longer it continues, the worse it becomes and harder it is to treat.
- Medication doesn’t always work
There are medications out there that can help control your heart rate, stabilise your heart rhythm and help reduce the risk of stroke. However, it is important to know that medications don’t always manage the symptoms for everyone. I had been prescribed blood thinners and beta blockers, and whilst they may have reduced my risk of stroke, they didn’t make much of a difference to my symptoms. I was eventually referred for catheter ablation, a procedure which destroys the areas of the heart causing the abnormalities. I’d encourage anyone to speak to your doctor about all your options, ensure you always ask questions and do your own research too.
- It affects more than you think
I didn’t expect AF to have as much impact as it did on my life. It does affect everything, both physically and emotionally, but over time you learn to adapt to your new “normal”. Not just you, but your family as well. It’s also the worry, and not knowing what the future looks like. It can be a scary experience, but with more understanding of the condition and knowing the questions to ask, to get the answers you need, you do start to feel better and reassured.
- AF puts you at higher risk of a stroke
As the irregular heart rhythm can cause blood to pool, people with AF are five times more likely to have a stroke.[ii],[iii] People with AF are more likely to have blood clots form in the heart, which can travel in your bloodstream to your brain, potentially causing a blockage on the way. This blockage means your brain can’t get the nutrients and oxygen it needs, causing a stroke, which can be fatal if not caught early. As well as knowing the signs of AF, it’s just as important to recognise the tell-tale signs of stroke too. Many people who have suffered from a stroke have been found to have undiagnosed AF.
- Act quick
From when you first experience symptoms of AF, it is important to act quickly. About a quarter of cases start off as intermittent AF, otherwise known as paroxysmal AF, and progress to a more consistent, sustained form.[iv]
Speak to your GP or visit the hospital as soon as you can, don’t ignore or brush off anything that isn’t usual, particularly with your pulse. Be aware of your family health history, understand if you are more at risk of certain heart conditions and look out for any changes in how you feel. Even after diagnosis, keep in close contact with your doctor, ensure you have questions ready so you have all the answers you need. As I said before, the longer it continues, the worse it can become and harder it is to treat.
- Do your research!
I cannot stress this enough. I believe research and knowledge is incredibly important – whether you have been diagnosed or not. Research so you have awareness of the condition, and so you understand the symptoms and risk factors. Research so you understand your treatment options, how to manage the condition, what you should do and avoid. Research for your own peace of mind, to know what questions to ask to get the right answers, to know what other people have experienced and understand that you’re not alone.
I’d say I was lucky that my AF was caught and diagnosed early, but unfortunately this is not the case for everyone. For some, diagnosis may come too late. We all live busy lives and it can be easy to ignore the signs. It’s important to listen to your body, understand the classic signs and symptoms of AF, and, if in any doubt, speak to your doctor as soon as you can.
Looking back, I can certainly say my condition has improved. I feel as though I’ve regained my life again and can enjoy even the small things, like walking with my family. For those needing extra support, I’ve personally found support groups, such as the AF Association, Get Smart About AFib and Heart Foundation, and even watching videos of people documenting their experience with AF, really helpful to learn more about the condition. I find it comforting to know that I am not the only one – you are not alone either.
Looking to the future, I hope more awareness is raised about AF. Once people understand its symptoms and risks, more people with AF can be diagnosed earlier and start the right treatment as early as possible.
The information is strictly for informational purposes. As with any medical treatment, individual results may vary. Only a cardiologist or Electrophysiologist can determinate whether ablation is an appropriate course of treatment. The risk needs to be discussed which your doctor and recovery takes time. If you have a concerns or questions regarding the content of this video or its applicability to your circumstances you should speak to your healthcare team.
[i] British Heart Foundation. 2019. Arrhythmias. [online] Available at: <https://www.bhf.org.uk/informationsupport/conditions/arrhythmias> [Accessed 26 August 2021].
[ii] Zoni-Berisso, M., Lercari, F., Carazza, T. and Domenicucci, S., 2014. Epidemiology of atrial fibrillation: European perspective. Clinical Epidemiology, 6, p.213.
[iii] Atrial fibrillation (AF) and stroke. 2020.[PDF] Stroke Association, pp.1-12. Available at: <https://www.stroke.org.uk/sites/default/files/publications/jn_2021-167.13_-_f26_atrial_fibrillation_af_and_stroke_web.pdf> [Accessed 26 August 2021].
[iv]Holmqvist, F., Kim, S., Steinberg, B., Reiffel, J., Mahaffey, K., Gersh, B., Fonarow, G., Naccarelli, G., Chang, P., Freeman, J., Kowey, P., Thomas, L., Peterson, E. and Piccini, J., 2015. Heart rate is associated with progression of atrial fibrillation, independent of rhythm. Heart, 101(11), pp.894-899.
© Johnson & Johnson Medical NV/SA 2021