AF Information & Advice For Patients

Sue's Story

Sue describes her journey of AF discovery and finally receiving an ablation: from misdiagnosis to cardioversion and beyond.

In 2005, I first experienced symptoms that I thought were neurologically based, or psychological due to anxiety. I wanted to be referred to my local neurology department, in order to rule out a brain disorder. I was quite aware of how the mind can play tricks on one, but felt that if a neurological cause could be ruled out, I would be reassured that stress had caused the problems and they would eventually go away. I was a psychologist and had recently taken early retirement from my main job, a decision due in part to stress, and was working part-time in a less well qualified position, as a stop smoking adviser.

I felt woozy when doing nothing strenuous at all, especially at night in bed. I also felt tired and kept losing my balance, having to sit down after walking only a mile. Sometimes, I feared going to bed, thinking I might be about to have a stroke. I didn't think I had symptoms related to my heart. However, in retrospect, I can see that I did.

I saw a neurologist at my general hospital and was told there was no indication of a neurological disorder. But while having my pulse checked, the reading on the machine was very low and, as a result, the nurse took my pulse manually which confirmed something was wrong. She asked me if I'd like a referral to the cardiac department and I agreed.

A few months later, I saw a registrar in the cardiology outpatients department of my local hospital. I had an x-ray, an ultrasound, ECG and an echocardiogram - I think? They diagnosed me with an ectopic ventricular heartbeat. Every fourth beat came from the ventricle and not the atrium. This beat was weaker than the others so might not be detected by machines. I was told that the structure of the heart was sound and that this condition does not reduce life expectancy or quality of life substantially. However, if I wanted I could be treated with medication.

A few months later, my anxiety was better and I was happier, but I was still feeling tired and woozy. I was aware that I took a long time to get things done. I found work tiring, travelling to various clinics and hospitals in my job. Humping equipment in and out of the boot of my car was exhausting, and climbing just one flight of stairs made me breathless. After nearly a year, I asked my GP for another referral to cardiology. I talked to the nurses in the cardiology outpatients department, and they recommended a consultant electrophysiologist.

I saw the consultant electrophysiologist and he said that after my last GP visit, a letter had been sent to my GP to put me on Bisoprolol, a beta blocker, for my condition. This was the first I'd heard about that and I guessed that either my GP had not received the letter or it had been filed away or lost. The consultant explained that the condition I had did not require any more treatment other than a beta blocker, that it was the kind of arrhythmia that caused no concern. Soon afterwards I received a letter from my GP to say he had a prescription for Bisoprolol as advised by the heart specialist, and I should visit the surgery to pick up it up, which I did. 

Soon after, I changed my GP and switched to a larger surgery, one with a GP whose area of special interest was skin, as I had terrible acne! I visited this GP, asking for tablets to clear up the acne. She looked at my notes, told me she would have to check my heart before risking prescribing antibiotics for my acne. The GP took my pulse and told me she was concerned and I needed to have an ECG, which she arranged immediately. She confirmed I had atrial fibrillation - I can't tell you how grateful I am to this doctor!

I was prescribed warfarin and was referred back to the consultant electrophyiologist, who agreed, after various tests, that I now had AF and that it was persistent. A few months later I had a cardioversion. I felt a dramatic improvement, being able to go on rambles, go upstairs easily, even while carrying the vacuum cleaner which I could not manage before. I could take part in activities for much longer each day. Eventually, I came off warfarin. This was a welcome relief because my INR levels had been quite tricky to get right at times. 

Just over a year later, I started to experience symptoms again and the AF had come back. Since my last visit to my consultant, I learned about catheter ablation from the AFA. I also found out from the internet just how distinguished my consultant electrophysiologist was. He is one of the top specialist doctors performing this procedure in this country, and I thought how fortunate I am! When I saw him this time he didn't offer the procedure unprompted, but spoke only of another cardioversion. So I asked him if I could have a catheter ablation. He explained that the chances of success with an ablation, in my case, were 60% and about 80%, if you count partial success i.e. If the procedure works partially but I still need medication for the rest of my life. He explained ablation was best done when the AF was still intermittent, however, he agreed to perform the procedure. I had to have another cardioversion and the ablation was done in August 2011. 

Since my ablation I feel well and I am still taking warfarin, which I will continue to do until I next see my consultant in April.

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