If you have atrial fibrillation you will have no doubt heard the words ‘AF isn’t dangerous, lots of people have AF and don’t even know they have it’ spoken with authority by a doctor and usually at a time when you are feeling very unwell and possibly scared.

I think that the words are intended to be reassuring but they have caused more damage to my physical and mental health than probably any other words that have been uttered to me. I’m sure that such people exist but I’ve yet to meet anyone with AF who does not find it completely debilitating and feel pretty awful when it happens unless they are very elderly and generally inactive and suffering from other conditions as well. The effect of these words on me has been that I have felt a complete fraud and that I am making a fuss about nothing. Unfortunately this view of AF colours the attitudes of people around you who are given the same type of information.

My story

I was a physically fit, healthy and active 38 year single Mum helping my sister to lay a patio on a beautiful sunny day. Payment was a BBQ. My sister walked home with me and my son and I suddenly noticed that my heart was behaving oddly. I was quite quickly struggling to remain conscious and ended up in an ambulance and in A&E. My pulse rate was very high and rhythm erratic. However on that occasion it was not AF and a carotid massage solved the problem and I was discharged with no further intervention or follow up.

All was well for a while then I noticed that I was having palpitations. Then I on a couple of occasions I got up in the night had diarrhoea and nearly passed out. One night I got up with similar symptoms passed out and bashed my face against the bathroom door and came to about 30 minutes later. I ended up in A&E and being admitted to hospital. I asked to see a cardiologist as I was convinced my problem was heart related. He arrived late one afternoon clearly rather cross listened to me and told me there was nothing wrong with my heart and that my symptoms were psychological.

Fortunately I had a wonderful GP who knew me quite well because my son had been unwell since birth. He referred me to another consultant, not a cardiologist. He immediately identified that I had a heart rhythm problem and referred me to a heart rhythm specialist. As a result of that referral and a diagnostic ablation I discovered that I had paroxysmal AF emanating from my left atria.

At that time catheter ablations were not as common or successful as they are now. I was treated with medication very successfully for 10 years. In that time I led a fairly normal life with fairly few restrictions. I was careful with caffeine and alcohol and avoided aggressive aerobic exercise and becoming overly tired but was able to do low impact aerobics, cycle, hike, kayak, ski, enjoy white knuckle rides with my son at various theme parks and hold down a fairly stressful job with very little trouble or adjustments.  That was thanks to my GP, the consultant and my wonderful electro physiologist/cardiologist who listened to me and has worked with me through the years to manage my condition. I always remember walking into my cardiologist’s office for my first appointment and him saying I’ve looked at your notes and test results, you have a physiological problem not psychological. It was such as relief, not because mental health problems are less real or serious, but simply because I could now get the right treatment to enable me to get on with my life. Prior to this I had been unable to do any strenuous activity without fear of passing out and just feeling incredibly unwell and unable to work or do anything much. After I had an episode it took days to recover and I felt so weak and washed out.  Being a single Mum of a 4 year old meant that this was particularly challenging and scary.

Over the course of those ten years I had some episodes of AF but found if I sat quietly and took it easy my heart would revert to sinus rhythm eventually, usually within 12 hours. I would feel pretty wiped out for a day or two but nothing too awful. However, I knew immediately that I went into AF and within a few hours would begin to feel unwell- dizzy, very tired, sometimes headaches and often very faint. After a few episodes within a fairly short space of time my cardiologist changed my medication and that worked for quite a long time and I was very stable. About 8 years after my condition was diagnosed at a regular check-up my cardiologist told me that ablations had improved massively and there was no reason why I should allow my life to be constrained by my condition. I noted the advice but it was not relevant to me at the time.

Things started to deteriorate when life became particularly stressful. I changed jobs. I had worked with the same employer for 18 years. The stress of changing jobs and a close relative attempting suicide resulted in further episodes of AF.

By the time I saw my cardiologist everything seemed to have settled down to me. I had settled into my new job and the AF seemed to have abated. I was surprised when he indicated that the time might have come to consider an ablation. It was the first time I realised that AF was a deteriorating condition. It was his view that my condition had deteriorated and that we should consider moving forward with an ablation. I was told of the risks and recall clearly being told that the risk of death was no greater than I faced in driving from my home to the consultation which I didn’t think twice about. The chances of being AF and drug free were 60% after one ablation and 90% after 2 procedures. I was not convinced as I am frightened of any type of surgery and like to avoid hospitals as much as possible. I decided to see how it went and think about it.

Less than a month later I went into very fast AF which had not reverted after 30 hours, I started to feel very unwell and had to go to A&E. I was not on warfarin at the time and I was told off for leaving it so long before attending. It was then I was told that there was a 48 hour window to cardiovert if you were not on anti-coagulants. Luckily I was able to pinpoint with certainty how long I had been in AF and was given chemical cardio version using an hour infusion of amiodarone intravenously. Unfortunately I had to be taken into resuscitation bay for the cardio version and found myself in the bay in which I had last seen my father’s body after he had died of a heart attack some years previously. It was very disturbing and terrifying. After that I decided that I should proceed with the ablation. I was started on warfarin and booked in for an ablation.

A few weeks later I was back in A&E being cardio verted again. This time the short transfusion of amiodarone did not work and I had to have a 24 hour intravenous dose and so was admitted to cardiology. After both episodes I felt very wiped out for a number of days but after the second episode I just didn’t seem to recover and had no energy. A few weeks later I was back in A&E and this time had electro cardio version and went home fairly quickly. This was a few weeks before my ablation was booked.  Each time I went to hospital I had blood tests to check my thyroid function as AF is often associated in a person of my age with a hyperactive thyroid. A few days later I had an urgent phone call from my GP informing me that I had become severely hypo thyroid and needed to start taking thyroxine.  I have been on thyroxine ever since and have discovered that I am extremely sensitive to dosage. Small changes in dosage produce large swings in my TSH levels. If I am kept at the recommended level the incidences of AF are greatly increased as are my levels of anxiety. Whilst my AF and anxiety are lessened on lower dosages I quickly become hypo and find it difficult to function. A mid-range TSH is best for me but this is very difficult to control and even a 0.5 mcg of levothyroxine can make a significant difference. It has taken over 3 years to understand the full effects of the thyroid damage to my health and how sensitive I am to the dosage of levothyroxine. Natural thyroxine is not appropriate because the way in which it is released into your body means that there are greater peaks and troughs which makes AF more likely.

As I was so severely hypo thyroid the ablation had to be postponed whilst that was stabilised. The day before my son’s birthday I went into very fast AF again and had to attend A&E. However they had enormous difficulty cardio verting me and my heart rate was dangerously fast over a long period. Eventually after several attempts at cardio version and then being given a compound intravenously to increases the conductivity of my heart, it worked. I was transferred to CCU and was back in AF after a few hours. I have enormous gratitude for the consultant on A&E that looked after me on several occasions and to the cardiologist on CCU who was happy to consult my cardiologist and work with him. I ended up being transferred to the QE in Birmingham and having an immediate ablation. I was very unwell in the night following the ablation and had AF the following day. It did settle and I took about 6 weeks to recover. However, it was fairly clear that I still had AF. I had a second ablation just under a year later prior to which I had episodes of AF and very regular ectopic beats. I felt very well 3 weeks after the second ablation but then suddenly had another episode of AF. I was able to stop taking any heart medication for nearly a year and then started having episodes of AF again. I went back onto medication.

My AF again deteriorated but had peaks and troughs. I had further investigations and it was decided that a third ablation was unlikely to be helpful or necessary at that point. Unfortunately nearly 2 years later life became particularly stressful and at first I seemed to cope with it well. However I had by this stage become increasingly anxious about having AF. Initially I dealt with it really well but I became very frightened that I was going to go in AF and started avoiding things I thought might trigger it. This became increasingly difficult as both yawning and defecating triggered episodes. After about 2 years I had a serious episode that lasted some time and resulted in me seeking medical assistance. I ended up in AMU but my heart did revert to normal rhythm naturally. However the stress of the whole situation resulted in my having severe anxiety. I became almost paralysed by anxiety. I sought mental health support and without my therapist do not know how I could have coped with what followed.

After a further consultation my cardiologist recommended that I have a third ablation and he look at isolating triggers in the SVC. I was keen to try a different medication before taking that step. Unfortunately that caused atrial flutter and I ended up in persistent AF for a period. I had a third ablation which I took some time to recover from. I am still on heart medication and am having ectopics and short flutters. It is hoped that these may subside in time. Although I find these very disturbing and am terrified each time I have one (which can be many times a day) that I will have a long episode of AF so far this has not happened. I have been enjoying increasingly physically demanding walks and trying to increase my physical fitness as much as possible. I am still learning to live with anxiety and having regular ACT (acceptance and commitment therapy) sessions. Having been off work for 6 months I am hoping to be able to return shortly.

AF has changed my life in so many ways and has resulted in my having hypothyroidism and anxiety and despite 3 ablations it is still a huge spectre in my daily life. Hopefully as time passes and I do not experience more episodes, I will become more confident. However if I was a gambler I would not bet that I have seen the last of it. I am determined to live a meaningful life and not let fear of AF dictate how I live, although that is much easier said than done.  Without some amazing doctors and my therapist I am not sure that I would have made it this far and am so grateful for all that has been done for me to help and support me. My husband has lived through this with me and has been an amazing support. He has had to watch me in some pretty awful, scary predicaments which I know have been very upsetting for him but he has stayed by my side throughout for which I am incredibly grateful.