A few weeks ago my electrophysiology (branch of medicine specialising in the electrical activity of the heart) team contacted me to say that they had read my most recent heart monitor recording and it showed I was permanently in an abnormal rhythm . Therefore, they want to perform another ablation. When I started this process in 2017 I had been warned that we may need repeated attempts. Even then I may end up with a pacemaker. Due to my unique cardiac physiology placing a pacemaker is not as simple as in most cases!
If I consent the ablation would be a slightly different method. Rather than being remotely operated from a separate room the surgeon would do the procedure manually and be able to have more control over the pressure exerted using the catheter. She suggested I take a few weeks over Christmas to consider whether I want to go ahead. She stated that the risks would be no different from the robotic method. However, the previous ablation led to 12 hours on the operating table (roughly twice the expected time). Normally I would say yes straight away because the procedure has the potential to improve my quality of life, eliminate my abnormal rhythms and repeated emergency hospital admissions.
All my major surgeries happened before I turned 18 and therefore consent was given by my parents. It's quite a daunting prospect to have to make that decision yourself. Whilst I haven't had OHS (open heart surgery) since I was 18 the procedures, cardiac ablations, I have had are still considered major and risks include possible stroke.
However, I'm finding it much more difficult to make a decision on this occasion. I'm considered one of the most complex cases and therefore the theatre is booked out for an entire day!! An ablation on a normal person would the 1-3 hours. Congenital cases are usually more complex at about 6 hours maximum. However, on each occasion the time I have been in theatre has increased (between 8 - 12 hours)..
My previous procedure was in May and resulted in me spending 5 days in the Intensive Care Unit and an infection. The first couple of days I was unaware of what was happening and remained on a ventilator for about 24 hours. Recovery was much much harder. Whilst the care was excellent I have no desire to revisit that situation. The thought of it scares me especially because my risk of a serious infection is greater than the average person. Her deputy states that they are enthusiastic to perform the procedure but emphasised they would support me in whatever decision I make and that would also apply if I changed my mind at the last minute.
I will let you know what I decide.