I have only recently joined the AF Association and this is my first time on the forum, so please forgive me for providing a rather lengthy description of my situation.
I am a 63 years old male living in Dorset in the UK and my heart problems started about 6 years ago when I suffered several quite frightening episodes of very rapid heart rate. After the third of these I went to my GP and was hospitalised whereupon I was diagnosed as having atrial flutter. I was prescribed Ramipril, Bisoprolol and Atorvastatin, together with Warfarin (all of which I am still taking), but continued to suffer episodes and after again being hospitalised with a heart rate of 250-270 bpm I underwent a cardioversion. Initially, this was unsuccessful in restoring normal sinus rhythm (NSR), although it did reduce my heart rate to around 100 bpm, but on a follow-up with the cardiologist 4 days later I was found to be in NSR. Unfortunately, this did not endure and after couple of further episodes resulting in hospital admissions, I underwent a right atrial ablation. This greatly improved my condition, although I continued to have a few episodes, but fortunately these resolved in a matter of hours without treatment. Nevertheless, I noticed the episodes were gradually becoming more frequent and lasting longer and after about 2 years I suffered another particularly distressing one (250+ bpm) which landed me back in hospital and prompted a second right atrial ablation. This again proved successful in temporarily improving my symptoms, but the electrophysiologist (EP) told me that whilst he was performing the ablation, the monitoring equipment was showing that there were also spurious electrical impulses in the left atria. He explained that he was unable to treat these at the time because it required a different procedure involving piercing of the septum between the right and left atria in order to gain access to the initiation sites of these impulses in the latter. He also explained that being in the left atria these impulses were most likely the result of atrial fibrillation (AF), rather than the original atrial flutter which is a predominantly right atria condition. He told me that AF is a progressive condition and episodes were likely to get worse and more frequent as I got older. At the time of this follow-up consultation, some three months after the ablation, I had only suffered one further episode and I said that as long as they didn’t get significantly more frequency, I felt life was manageable. Unfortunately, and something I am extremely annoyed about, he neglected to explain that ‘AF begets AF’, in other words the longer you have AF the more AF you get and more importantly the harder it is to restore NSR. Had I known this I would have elected for a left atrial ablation (AF ablation) 18 months ago. The result of the EP’s oversight is that my AF has now developed from paroxysmal (intermittent) AF into permanent AF and my local cardiologist has advised me that this being the case the chances of an AF ablation restoring NSR is virtually zero. It has been left too long!
He has added Digoxin to my list of medications in an effort to reduce my heart rate (the rate at which the ventricles are contracting/relaxing) and thereby relieve stress on my heart muscle, but I have been taking it for 2 months without any discernible improvement. Moreover, from the research I have undertaken over the past few months it seems that the medication I am taking will do nothing to prevent the atria from continuing to fibrillate at 500-600 bpm and nothing to reduce the risk of a stroke, which has increased fivefold with the onset of AF. I am now suffering an episode on average once a fortnight and they are lasting between 12 hours and 3 days, which means I am spending around a quarter of my waking hours in bed. The episodes are completely random; there appears to be no trigger for them nor any indication that one is about to occur. One of the biggest problems is that during the initial 2-3 hours of an episode I am having to urinate every 10-15 minutes and I can’t hold-on for long. Covid-19 aside this means that I am unable to do, or plan to do, anything that results in me not having immediate access to toilet facilities. I have also lost confidence to undertake anything strenuous such as joinery, which is my hobby; I am no longer living but merely existing – things look pretty bleak!
I intend to seek a second opinion on the treatment options available, in particular the efficacy of an AF ablation in stopping my atria fibrillating and giving me some rest bite from this awful debilitating condition. Unfortunately, it appears that even if my AF can be stopped, albeit for only a couple of years, statistics indicate that this will not reduce the probability of suffering a stroke. This seems counterintuitive as you would think stopping the atria fibrillating and thereby allowing them time to contract/relax in order to pump blood effectively into the ventricles would prevent pooling in the lobes of the left atrial appendage and thus the potential for the generation of clots, but this appears not to be the case. This leaves me with something of a dilemma; is there any point in having an AF ablation, with the attendant risks involved, if it is not going to make any difference to the main potential consequence of AF, namely a stroke?
This is the main question I shall be asking when seeking a second opinion from another EP. To this end can forum members please advise me on the person (or perhaps a small list of people) considered to be at the very pinnacle of AF treatment in the UK. My research thus far has highlighted the following candidates:
•Dr Phang Boon Lim – Hammersmith Hospital, Imperial Private Healthcare at Imperial College London and OneWelbeck Heart Health.
•Prof. Gregory YH Lip – Liverpool Heart and Chest Hospital and BMI The Edgbaston Hospital, Birmingham.
•Prof. Richard Schilling - St Bartholomew’s Hospital, London Bridge Hospital, London AF Centre and OneWelbeck Heart Health.
•Prof. Sabine Ernst – Royal Brompton Hospital and Imperial College London.
•Dr David Wyn Davies - St Mary's and Hammersmith Hospitals and 78 Harley Street.
Thank you in anticipation of your help.