I am a congenital heart patient from North Wales. Although I have received the majority of my care in Liverpool, in 2016 I was in need of Royal Brompton’s expertise and I’ve been a patient ever since.

My heart started to become unpredictable

I have been on medication for atrial fibrillation, an irregular and often rapid heart rate, for over 15 years and for the majority of that time my AF has been stable. But in 2016 episodes of AF returned with a vengeance. This time they seemed to come from nowhere and were occurring every month. These episodes can last for several days but I have been advised to attend hospital within the first couple of hours. Apart from a fast heart rhythm they cause breathlessness and exhaustion. In my case no trigger has been identified. But they are attributed to previous surgeries and the scar tissue left behind. I was told that the scar tissue provides a pathway for these abnormal rhythms to travel. Each time I would be rushed to the local hospital where I would eventually be cardioverted and admitted for several days of monitoring. I feel better almost immediately after a cardioversion, the difference is amazing although I often need a long sleep immediately after to recover from the exhaustion an episode leaves me with. I felt certain that there must be an underlying cause. Depending on the length of the procedure full recovery can take several weeks. Although this varies between individuals.

Finding someone to perform my ablation

On the second admission they discovered that one of my heart medications had resulted in elevated thyroid level and I was immediately referred to an endocrinologist who was brilliant. After four further admissions to hospital the local cardiologist decided to write to an electrophysiologist in Liverpool asking if he would consider another ablation. His response was very clear; he would not consider another attempt due to the challenges posed by my blocked veins. I wasn’t at all surprised at his response but by this point I was very frustrated and disheartened. Coming off the anti-arrhythmic medication was not a realistic option particularly as we had had several failed attempts over the years.

It was about this time I attended the annual conference hosted by The Somerville Foundation which supports adults born with Congenital Heart Disease. There I met about a fellow patient called Vicki who told me of an electrophysiologist at Royal Brompton who offered a revolutionary catheter ablation technique (magnetic guided ablation) which wasn’t available anywhere else in Europe. She had benefited from this treatment and she strongly encouraged me to get a referral via my cardiologist, so I did just that. rior to accepting me for treatment the surgeon requested MRI imaging to be carried out. I was ecstatic when I learnt Royal Brompton would accept me as a patient, there might finally be an end to these debilitating episodes.

I'd finally made it to Royal Brompton

In early 2017 I made it to the cath lab. I didn’t need a pre-med which meant I was able to observe the technology. I found it incredibly fascinating. Whilst preparing for the procedure I observed a couple of monitors at the end of the bed.

There in all its glory was a 3D image of my heart. My eyes nearly popped out of my head. This imaging was developed using the previous MRI scan. I’d never seen it in that form before and it was the first time I’d seen my mechanical valve. 

Electrodes were placed on my chest and back so that the electrical activity of my heart could be monitored during the procedure. My ablation was carried out through a blood vessel in my neck. Using the amazing images of my heart I had seen, the cardiologist was able to conduct the procedure behind a screen several meters away. The setup looks like the Starship Enterprise and I imagine that the hand movements required would be similar to playing computer games. I was informed that there were approximately 15 people in the room for my procedure, and thankfully also the calming presence of Bryan, the anaesthetist caring for me.

I have a complicated heart

My heart had already been through a lot and my surgeon was unable to puncture a surgical repair to access the area where the arrythmia originated so the procedure was unsuccessful. In the recovery room I recall the surgeon bursting through the doors and leaning over my bed to tell me that she had failed but planned to try again in a few weeks. She was not happy. I was exhausted and deeply disappointed. On my next visit, however, the surgeon was able to access the area and perform a successful ablation. I’m told that the hole created would have been very small and healed just as quickly.

Unfortunately, my symptoms returned within a year and I have been back several times since. My most recent ablation was in 2019 and there is talk of another. I know I have a complicated heart; normal ablations last two to three hours & are often done under local anaesthetic, mine always take at least six hours and I insist on a general anaesthetic. Lying on a metal bed for that long is very painful, also I’m on Warfarin and at risk of bleeding it is essential that I lie flat on my back for several hours after, thankfully Bryan was on hand with morphine. The benefits of the ablation are often immediate but because I have a general anaesthetic it often takes a couple of days to feel completely better. I try and get up and walk around the ward as soon as I’m allowed as walking around steadily means I’m able to have the urinary catheter removed and change back into my own pyjamas.

Fortunately, my health has been stable during the pandemic which I am very grateful for.

Royal Brompton's adult congenital heart disease unit was the first of its kind in Europe and still remains the largest. A donation to Royal Brompton will help us to fund projects which will support more patients like Lowri.

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