Heart Burn

You know the sludge at the bottom of the gene pool? I’m pretty sure when they made me they just scraped all that up and made it into a person

That’s my normal lead in when I’m going into hospital. I used to use it as a joke – you know, something to lighten the mood when I’m just about to get stabbed with sharp things. Now, I suppose the trouble is, I’m actually starting to believe it.

Wednesday the 20th was a normal day for most people – except for the select few of us rolling our over night bags into Gold Coast University Hospital for whatever procedure we were in for. You walk by someone with a bag and give that little chin lift in acknowledgement  that they’re in for a world of discomfort and anxiety that day too. The day of my ablation (or perspective ablation) had arrived… and I was like one of those terrified little birds in the colonoscopy waiting room that I try to avoid eye contact with. I had no idea what to expect.

It was my first time on level 4 – I’m gathering that it’s all Cardiac up there… I have to say for the record that Cardiac doctors and nurses are very different to those in the bowel department – I don’t know how, I’m not sure I can describe it. We were due at 7:30am, not really a problem considering I generally don’t sleep the night before I’m due in the hospital. The Cardiac Cath Lab is set up much like the Endoscopy suite – a small waiting room outside pre-op / recovery that looks a little like the triage area in ED. It’s hospital policy that all women of a certain age have a pregnancy test before an EPS. Not necessary for me of course because I’m not going to be a mother by natural means – plus years of chemo-medication haver probably made it impossible. Anyway off I went down to pathology to be stuck for the first of many times that day – lucky I don’t care anymore.

I’d done nothing to prepare for the day – I’d not filled out any of the paperwork or given Stocker any of the numbers he needed to call or text about the outcome. Given the experience with my bowel surgery I was actually more worried I had enough battery power to get me through 6 hours of Bejewelled on my phone… I was in pathology for about 20 minutes – all things being equal a pretty quick trip. When I arrived back I was greeted with the unsettling news I’d already been called. “It’s just for height weight and ob’s I said as I sat myself down”. Nope. No ob’s – straight to the pointy end.

So (and I had to explain this to the staff in the Cardiac department too) when I get stressed (and I had got to a point beyond stressed about two weeks before I found myself giving yet another humorous take on my medical history in hospital) my body just goes into melt down… so I get the runs, headaches, I overheat, you name it, it starts happening. The headache and the runs part of things had already happily settled in. Explaining that to the staff of a different department inspired looks of “she’s kidding, right?” No. She’s not kidding – she might literally shit herself on the lab table. That’s Crohn’s. That’s my life. Once we all got passed the shock and I was allowed to take my two pathetic paracetamol to help with my pounding heard it was all systems go. I was cannulated and hooked up to ECG before I’d had a chance to thing about what was going on.

I then had the parade of different doctors (that you usually have in the series of pre-op meetings)… the actual Cardiologist, the dude that sits in the little room pumping electricity through me and the Anaesthesiologist. Here’s the part I was actually interested in. I really (really, really) wanted to be asleep for this – it sounded unpleasant and well the whole lead up has been unpleasant so I thought “surely, they can just knock me out when they’re in there”. Apparently sedation is a last resort as they can’t complete the test part of the procedure as accurately as they’d like if the subject has been sedated. Sedation – even anti-anxiety medication changes people heart response. “Well” I thought, “I’m totally fucked”. I’m pretty sure the Anaesthesiologist could either predict my state of mind or read it (those guys are totally creepy – I’m pretty sure I’ve mentioned that before). He then went to enquire about immediate sedation. My heart rate was about 180 and I had blood pressure so high I thought it was going to start coming out of my nose….

Just like that, my time was up – and I needed to say a shaky goodbye to my husband. I was terrified – embarrassingly enough I teared up. Me. I mean, I’m pretty sure I have a loyalty card for procedures as the hospital – but this one truely scared me for whatever reason. Worst part – after he left – once again I had to walk to my impending doom rather than being wheeled – I mean really!  For me the walk to the theatre is literally that hardest and most upsetting thing.

“Don’t touch anything that’s blue” one of the nurses said as she pushed me through the door. I thought she was screwing with me – but she wasn’t. I’d never been awake for this part – apparently all the blue stuff is sterile. I got up on that gurney and people stared arguing about who had the rights to which line hanging out of me. I was ok, I was together, until one of the nurses told me how great I was doing… then a few tears snuck out and started rolling down my face. They all backed away like I had some communicable disease. The next thing I knew was a few sharp stings in my thigh – local anaesthetic was already being administered – I was a little shocked things were moving as fast as they were… Before the local had time to take they started inserting the sheaves for the cannulas… and let me not mince words here… I could still feel all of that, and it fucking hurt. Not to sound like a pansy, I very softly indicated that I was in some discomfort… more local was applied, but again, it takes a minute or two to work so diving back in there did very little. I just lay there – in total shock. I think it was at this point the whole team decided it would be best for me and for them that they took the edge of my anxiety – I was given 1mg of something called Midazolam an IV administered anti-anxiety drug. I’ve had Midazolam before – in fact I’m pretty sure it’s a regular part of my pre-scope kit. They see my name pop up and pump me full of it 3 seconds after they cannulate me. I don’t like hospital. Anyway, it was only meant to take the edge off and it did just that – the best thing about any benzodiapines is they also skew perception of time. I know I was in that theatre for almost 4 hours – but now, reflecting on it, it feels like 20 minutes. I’m very grateful for that – because the rest of what I’m about to tell you is very very unpleasant.

I could feel pretty much everything – and because my head was in such a state I’m still not sure if it was pain or just the procedure itself – perhaps a little of column a and a little of column b. I could feel the cannulas move… I could feel the sheaves being pushed around onto other painful things inside my groin… it was, unpleasant.

The whole point of the EPS is to get me into tachycardia (very fast, almost out of control heart rate) so they could see where the Wolff Parkinson White was… before the first cannula was threaded up – I heard a concerned voice from the “control room” for lack of better terminology say “Tachy” and the specialist reply “I haven’t even touched her”… I was still very much awake and I said… “told you”. In one of our previous meeting – I said with everything going on in our lives – getting my heart to race wasn’t going to be a problem. They all laughed – it can take hours to induce tachycardia in a case of WPW that’s not all that serious… I was there before the first zap. I was kind of hoping this meant I would be put out for the rest of the procedure… but… I had three students in there and I suppose they wanted to make the best of the situation… so awake I stayed.

For most of the test they were more concerned with slowing my heart down rather than speeding it up. The problem was easy to find – but not so easy to fix it seems. Throughout the whole procedure I kept hearing “look at this unusual rhythm”, “this is so interesting”, “[to the students] how do we know we’re not killing her right now”, “we should have a notebook in here – so we can record the interesting EPS’s like this one”… Well, at least someone finds my flawed genetics “interesting”, I don’t share the enthusiasm.

The team had a quick meeting and decided they were going to ablate – something that wasn’t a sure thing going in. If my problems were in a dangerous part of my heart, they would have done the EPS then medicated the best they could to keep my symptoms under control. My only stipulation was “do whatever you want – just don’t kill me”.  I gather by “grab the ablation kit” we were doing this.

So here’s the thing – I didn’t just have one single pathway causing the trouble – I had several and a few that were… unusual. I can’t remember exactly but there were between 6-10 burn sites… this was the part that really gave me problems. Everyone said there would be a bit of discomfort when they ablated… A bit I was good with… pain I’m usually good with… but here’s the situation… I have very very little sedation in me, no pain relief… I can feel the cannulas in my groin, I can feel them snaked up my veins… I can feel them in my heart which is in uncontrolled tachycardia and I could feel them ablate… it wasn’t “a little bit of discomfort” it was like someone was jamming a red hot poker into my heart – and each burn lasted no less than 5 seconds – a couple were up around the 10 mark. I literally started gasping for air on about number 3… when they decided to administer more Midazolam and some Fentanyl for the discomfort – which was nice of them, except it did exactly dick. I could still feel it all – I was just tired now. On the way out the Anaesthesiologist (nice guy by the way) said that I was “a great patient”, I think he was kinda lying. He said when he met me he thought the only way to get through this was to put me out straight away (to be honest I thought so too), according to him, I ended up with a fraction of the sedation and pain relief that the average person has during this procedure – should I be proud of that, is that like, something to be proud of? I don’t know. They did also say that my heart was in great shape – it was strong with no cholesterol or plaque build up. Aces. My Wolff Parkinson White repair will end up as show and tell in some teaching lab – I had multiple additional pathways – one that forked and was in both sides of my heart (very unusual, apparently). Everyone was amazed that I hadn’t indeed passed out or had several worse episodes – I guess I’m lucky (yes, I’m stifling a laugh typing that).

No one explained recovery to me… it was different. After a scope it’s pretty much “congratulations you still have Crohn’s disease but it’s not trying to kill you at the moment so that’s good news – get out, NEXT”. I don’t really mind it – I mean what else is there to say? They do usually give me more than one pack of sandwiches which is nice of them…. After an EPS – you have to remain flat on your back for 3 hours. 3 HOURS….. The nursing staff had pumped some liquid into my IV because of my headache (thinking it was dehydration) so my bladder was fuller than it should of been and my headache – after everything was still there. It was obvious that my headache was stress based… They offered me a bed pan but after several unsuccessful attempts I gave up – seems I cannot pee laying down… it’s harder than it sounds, don’t judge me.

My sheaves were pulled (which would have been a bit more comfortable if I wasn’t told how long they were) and I was left there… needing to pee and with a headache that just wouldn’t let up… as the minutes passed it got worse… the lights made it worse… the beeping made it worse… breathing made it worse…. I was getting a Migraine… I started to sweat…. and go cold… yep I was going to start puking on myself from a migraine and I couldn’t sit up. I begged for some Ibuprofen but I no dice, they don’t keep them on the ward because they’re a blood thinner…. I was screwed… and I knew any hopes of me going home same day were fading fast…. my heart rate alarm went orange… nurses started running around panicked because I was starting to panic… Keeping my heart rate under control in recovery is the second priority after keeping me still… they ran in with ice packs and Endone (which I don’t like and doesn’t help with a Migraine – well one of mine anyway) and sick bags… one (and I feel so horrendous I can’t remember her name) went to get anti-nausea medication, Ondansetron which I’d had in hospital many times before. My heart rate alarm turned red – I was in the 190’s resting. When she returned she said “I can’t give you any non-steroidal anti-inflammatories, so I went straight to the top and got something for your Anaesthesiologist – I think he likes you”. It was a slow push drug and it took exactly 7-seconds for the pain to subside and for my hear rate to return to about 120. The alarms all died down and I rested almost comfortably for the next hour (apart from my ever increasing need to urinate).

To my surprise I was discharged same day – even with my post-op issues. Mainly because my heart rate goes down about 20bpm as soon as I walk out the doors. I have spend the days after recovering… my leg is bruised to hell – but the pain is nothing like having your abs cut through… and my heart, well it still feels like something spiney is crawling around inside… but it’s improving. Last night I had a full nights sleep without chemical aid… and I do feel better for it, but I also need the extra time… I don’t think I’m ready to surge back into my real life which at the moment is more complicated than I want to get into.  I have till the 1st of August – initially when I was freshly discharged I thought that was probably too long, now I’m no so sure.

I owe my life and most of my sanity to the staff at Gold Coast Hospital… They are phenomenal people… I have no words that can ever express my gratitude to the staff that care so much about complete strangers that they literally hope to never see again. Gold Coast Hospital – it’s given so much bad publicity… people with their noses stuck up their arse buy into it… “it’s a butchery, a meat house”, “patients are lying in the halls”, “it’s third world”. Let me be clear – anyone who’s ever had experience with the public system would NEVER say that. I am privately covered – I am because society tells me I should be, Gold Coast claims against my insurance, they make money out of me and trust me if I had more to give to them, I would. Would I ever go to a private hospital in Queensland? Only to visit someone else. I encourage everyone who turns their nose up at the prospect of Gold Coast Hospital to visit one day – the doctors, surgeons, specialists and nurses deserve only the highest respect for what I gather is a very thankless job.

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