AF Information & Advice For Patients

Kathy’s Journey to Anticoagulants

Here, Kathy from Oxfordshire talks about her diagnosis of AF, why she did not take anticoagulants at first, and why she does now without fail!

The very first time I had atrial fibrillation (AF) (though I didn't realise that's what it was) we were on holiday in Portugal. It was 2008. I had had rather a lot of coffee which I believe was the main trigger. That AF episode lasted about 4 hours then things returned to normal and I forgot about it.

In 2010 life was busy, our eldest daughter had just had twins, we were caring for ageing parents, working, all the usual things. I went into AF again without realising what it was, though being an ex-nurse, I knew it was a possibility. My mum had been diagnosed with AF in her 70s, but I was still only in my early 50s. This time the symptoms (a rapid irregular pulse and palpitations which wouldn't go away) lasted for four days and I was beginning to feel a bit tired and 'strange'. My husband was with our daughter and the babies when I decided to go to A&E. To be honest it was a mixture of denial and fear that prevented me from taking action earlier.

Not expecting to be seen quickly in A&E I had taken along a book to read but was whisked through straight away and immediately put on various monitors, all of which sounded their alarms. It was suggested by the staff that I should make sure my next of kin knew where I was (which sounded rather ominous!) so I phoned my husband who was shocked and worried to hear I was in resus in A&E. (He had wanted me to see a doctor much sooner, but I keep saying I was fine).

After several hours in A&E and various drugs, the details of which I can't remember, my heart reverted back to sinus rhythm (thankfully), however I was admitted and monitored overnight. The diagnosis was paroxysmal atrial fibrillation. At one point in A&E I remember being given some tablets and asking how long it would take for them to work and being told that they might not! (Not what I wanted to hear!).

I was initially prescribed beta blockers and aspirin (though aspirin I gather is no longer recommended). Following a few more episodes of AF in the next few years (which never lasted more than a few hours and spontaneously resolved, though I went to A&E a couple more times) I was also prescribed the anti-arrhythmic drug Flecainide. Ablation was discussed as a possible future option if the AF symptoms became troublesome.

Overall, despite feeling anxious during actual AF episodes, I found discussions with the cardiologist at my hospital very reassuring. The message I got was that AF can be effectively managed and that you can be a fit person and still have it, generally you can lead a pretty normal life which is what I intended to do. 

All was pretty fine until 9 January 2018 when (aged 59) out of the blue I had a stroke! I was aware that AF increased my chances of a stroke significantly but never for a moment thought it would actually happen! I had done regular yoga for about 20 years, loved walking, wasn't overweight and my CHADS2VASc2 score was low, so anticoagulants weren't indicated. 

We'd had a particularly busy Christmas holiday just beforehand and unfortunately, I (and most of the family) had managed to catch a couple of nasty 'bugs' so I hadn't been feeling very well into the New Year. Also, at some point over the holiday period I vaguely remember having an episode of AF in bed one night which I mentioned to no-one and tried to ignore. I don't think it lasting very long. I thought no more about it.

Around 7.30 pm on 9 January we'd just finished an early supper and I was standing in the kitchen when I said, slightly bizarrely, to my husband 'Did you see what just brushed passed me?' Realising this was a rather strange thing to say (I too realised it was a bit odd) he turned to look at me and noticed straight way that I was having a stroke. My face had dropped on the left side and I was clearly weak on that side too, he lifted me to the sofa. I remember him saying 'Kathy you look weird, you're having stroke.' On reflection I could hear panic in his voice. I was not really with it though I could hear clearly. I don't have any visual memories, only auditory ones. I didn't feel scared it was so unreal I don't think I could absorb what was happening. I do remember being sick and shaking uncontrollably. 

The ambulance arrived quickly, and I remember the crew being kind and patient, telling me what they were going to do and that they'd get me to hospital quickly. After that I can recall very little until several hours later when I came to on a stroke ward (the youngest patient by far!). My husband has since filled in all the gaps for me, it was all too real and scary for him and the family of course.

It seems that the AF had caused a clot to form in my heart which travelled to my brain (maybe quite sometime later) and caused the stroke (in the right middle cerebral artery) despite my being at very low risk of that happening. 

I am so grateful to the NHS staff for the care I received and for the drugs that saved me from possible death and certain permanent disability. As it is I have made a fantastic recovery, people generally wouldn't know anything had happened to me at all. There is a legacy from the stroke that I and those who know me well can notice but in the scale of things it is small. Some subtle cognitive changes, a stiffness on my left side and some loss of finer movements, tiredness, but all a price worth paying given the alternative.

I now take my anticoagulants religiously every 12 hours and all the other protective drugs I have been prescribed. The latest generation of anticoagulants is far superior to warfarin I understand and I'm hugely grateful that they're available now because they weren't when I was first diagnosed with AF.

My advice to those who have recently been diagnosed and are seeking reassurance is: You can live a good life and have AF, do as much as you can to keep yourself well and avoid any of the triggers for AF as much as possible, alcohol, caffeine, stress (I have taken up mindfulness now and also teach it).

My advice to anyone out there whose doctors have recommended that they take anticoagulants to minimise the risk of stroke is 'Take them. Now!' 

Don't get hung up on possible side effects, if they've been suggested for you it means the risk of taking anti coagulants outweighs not doing so. 

I hope my story may have made that choice easier for you.

Kathy, Oxfordshire

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