Like every parent, we all could do with some more 'Me Time' but I didn't think my dose of my me time would be spent in hospital whilst waiting to have my loop recorder implanted, but there I was, without any distractions, not even 2 hours into my wait and already bored!
So a few weeks ago I had some news as a result of my annual visits to the cardiology team at the Inherited Cardiac Conditions Unit. Surprise, surprise, I received the clinical diagnosis of Brugada Syndrome. It was obviously suspected prior to this visit anyway (and truth be told, I had the diagnosis just not the clinical, black and white, on paper diagnosis) but this time solidified the news as I was now on the waiting list for a loop recorder. I'd be joining my bionic kids into the elite 'device' club or 'vice' club as Darcie calls it 😂
Since my last cardiology appointment some 16 months ago, I've been having some sporadic, irregular ectopic heartbeats which led to a 48 hour ECG monitor being arranged and also on many, many occasions have an extremely low heart rate at rest - like 30 something beats per minute low. I'd mentioned this to my GP but they stated that as I am 'young, fit and healthy' there's nothing to worry about. But to be fair it was a concern knowing my Brugada family.
When I told my cardiologist about these things he too seemed concerned. He stated that low heart rate is linked to Brugada which I never knew and of course a 48 hour ECG monitor wouldn't pick up those sporadic heartbeats.
We talked at length about our family history (Darcie especially) and he reiterated that our family case is very rare, complex and unique and someone like me is extremely hard to manage. He said that I sit in a very grey area of the spectrum where on one end patients have ICD's and on the other end no management is required. He proceeded and asked if I wanted his opinion (which of course I did) and I listened attentively when he said with 'normal' (and I use that term very loosely) Brugada cases there's 2 clear periods in life where expected events can happen...in late teens/early adulthood and in the 50 something age range. As I'd already passed the one event (and still here to tell the story) he wanted to monitor me prior to me hitting that next range. However, as anyone following our story knows, our family is far from following the 'norm' which is why he thought I should have a loop recorder to assess if I need further intervention.
Fast forward less than a month and I've just had my Medtronic loop recorder implanted. Was I nervous? Good grief YES! I even had a little tear in my eye when I was being wheeled into theatre, not for me though, but for each of my brave children who have laid on a hospital trolley having far, far more intrusive surgery than me and wondering what on earth goes through their little minds going into the unknown. Thankfully Darcie & Harper won't recall their first surgeries but Bailey does and all of them will do that same journey multiple times over, so my teary eyes were for them 💙
The surgery itself was very straightforward and I spent more time hanging around the ward than anything. I didn't quite know what to expect as an adult as I've only done this as a parent at the Children's Hospital, but I'm not sure I prepared myself to be fully gowned and wheeled on a trolley into theatre!
I have a Medtronic device which was implanted in the middle/left of my chest over my heart and is remotely monitored by an app on my phone so no need for yet another home monitoring device! I'm expected to be sore and bruised for a while and should rest for as long as I can (cue being waited on for at least a week) but other than that I'll be jumping through hoops in no time and back to not being bored! Yippee!!
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