Today I finally met with the staff from the Cardiac Cath Lab – the department that will be handling my heart procedures that follow.
In total they spend almost two hours with me. I have to say they were both very informative and just a little strange. Any person that can look at an ECG and start rattling off locations of problems and issue that sound like they should be happening to a TV rather than a heart has my respect – but they also creep me out just the tiniest little bit.
My registrars name for the day was “John” I’m not going to go into how many of my doctors share that name – needless to say it’s starting to get confusing. They were so nice – they always are. It was kind of cute – they were treating me like this tiny little fragile bird… until they realised I was something else entirely. It’s been said to me many times that bowel patients are different to any other chronically ill patients hospital staff come across. I’m still trying to figure out if that was a complement or not…. I may never know.
Anyway – there I was, going through my symptoms again – after my last referral was canceled I thought I was going to have to justify my place in the procedure list… turns out that’s not why I was there.
Dr P, the new head of the department wanted to meet with me because of my rarity and because he wanted to explain the risks of an ablation.
First of all – I should explain what they plan on doing. My heart has one or more additional electrical conductive pathways that are erroneous. They don’t conduct to a place they’re meant to. This occurrence is called Wolff Parkinson White – it’s a heart defect that 1 in 1,000 people are born with. Unless that person is hooked up to an ECG or becomes symptomatic of the condition they are none the wiser. Mine was found during a routine ECG when my heart rate was elevated pre-op in 2013. I was not at this point symptomatic – or at least I didn’t think I was. I was on a lot of medication that was screwing with my wiring at the time – most notably corticosteroids.
In July/August of 2015 I had my first serious indication that something was quite wrong. I’d come off a very stressful period at my full time job and it had take it’s toll. The overtime had just decimated me. My immune system may as well have been non-existent and I was having cluster stress headaches that would occasionally turn into migraines.
I was walking to the bowl on a Wednesday night after dinner and I basically dropped all my equipment and grabbed onto my best friend who’s back really shouldn’t have been supporting my weight. I almost passed out, right there, on the promenade of Robina Town Centre. The hospital had a flash word for it. Syncope. It was a strange feeling where I wasn’t sure if I was going to throw up or just pass clean out – I actually thought there was a good chance I was going to do both at the same time. I was wearing my fitbit that night and my heart rate readings jumped from 90 (or so) to 160-ish, within the space of 60 seconds. I don’t remember how Ross got me to the benches at Gloria Jeans (directly outside the bowl) I remember sitting there dazed ratting through my handbag searching for my anti-anxiety medication to at least calm me down. It did work and over the course of the next 15 minutes my heart rate did return to around 120. My heart still felt heavy – like the beats were not in a regular rhythm – and that went on for hours to come. Since then I’ve had many similar episodes and some where my heart just starts to race for no good reason. It’s been happening more frequently and the bad ones, well they’ve been getting worse.
When trying to get in for bowel surgery – cardiology discharged me so I could go through. It was far more urgent than a case of WPW that at the time wasn’t symptomatic. By all accounts they did the right thing. I honestly don’t know what would have become of me if I hadn’t of gone in when I did. Since the time of my first ECG – I have had 9 more, each one shows the WPW rhythm – it’s not a mistake or an accident.
I believe it was November last year when I decided that I needed to follow up the heart issues I was having before we moved to a country where I wasn’t familiar or comfortable in the hospital system. Having our USA / Canada holiday so close I waited until we returned for a referral back through cardiology. As my referral went through for assessment – there was some kind of scandal at GCUH involving Cardiology, of course. The result was many of the staff being stood down or suspended. So it took me 4 months to go in for my first appointment.
My new doctor sat quietly across from me and starting explaining risks of a “healthy person” going in for an invasive procedure. I’d been so good up till then – but at that point I burst out laughing (and Stocker was stifling a giggle too). The register gave Dr P a copy of my file that looks rather like a copy of the White Pages now.
“Oh” he replied.
I just smiled.
“It’s still dangerous – perhaps more so with your modified immune system and the medication you’re on” .
“I know that”, I said, “but you need to understand you’re talking about risks of 5% & 6%… in MY department we talk in risks of 40% and 50%. To me this is a Sunday afternoon stroll in the park”. He smiled “I understand what you’re saying and we’re going to do everything to keep you safe, but there are still risks and we want you to think about them before signing the consent forms”.
“I don’t need time to think about it – we’re doing this” and I signed the forms on the spot.
He was shocked but I just guess he doesn’t get too many bowel patients.
I do have some lingering concerns – I have to be awake and alert going in so no anti-anxiety medication and no propofol sedation… bright eyed and starring at a room full of people. But I’m sure I can entertain them with my dry hospital humour (that the anesthesiologists don’t seem to understand).
On the way out we were informed of a potential 6 month waiting list (3-6 months was the time frame I was give) which doesn’t thrill me. But I am on the emergency call up list. I want to say that I hope I do get called up – but generally the only spaces that are made free in cardiology procedure rooms is form untimely passing – which I don’t wish for anyone.
Our plans are on hold again because of my health – and if I was to say that wasn’t frustrating, I’d be a liar. I suppose though, it’s long overdue that I start putting my health first.