Heart-stopping start to the new year

As the old saying goes, the best laid plans of mice and men...

I started 2026 with a sudden surge of creative energy and started outlining novel number 2 and was feeling enthusiastic and motivated to get stuck into it.

Then Friday morning a squeezing pain in my chest woke me up around 3.30am. I debated calling an ambulance, but it really wasn't that bad (pain was a level 8, but I've coped with worse) and I didn't want to wake my friends and neighbours to come look after Ben (my goofy greyhound) so I got up and sat in my armchair and after an hour and a half it eased off. I got on with my morning as usual. I still felt some lingering discomfort so figured I ought to get it checked out, just to keep a record of it more than anything else.

I called the local GPs and they told me to go to Dannevirke which was not an option since I don’t have a car, or call an ambulance. I was rather reluctant but they threatened to keep calling me back if I didn't, so I made the call.

Other than elevated blood pressure in the ambulance and emergency room, everything was pretty normal. I also had a chest x-ray and CT which were both normal. Blood test showed my troponin (protein the heart produces when under stress) was moderately elevated, but on second testing had decreased, so they were somewhat stumped.

They kept me in for observation and in the early hours of Sunday morning when the nurse came to do my vitals I had finally fallen asleep (the obs unit was as loud as heck with monitors continually beeping etc) that when she woke me I got a huge fright. Within 15 minutes I started feeling nauseous and the chest discomfort returned with pins and needles shooting up my neck.

My blood pressure shot up again and I developed a temperature. A further blood test showed my troponin had increased and it continued to increase. So, the theory that it might just be reflux (which really pissed me off - I know what that feels like) was dropped and more doctors examined me and consulted with the cardiologist by phone - they of course don't work weekends - and there was talk of flying me to Wellington.

As my condition continued to be stable I was transferred to the cardiac ward and on Monday morning I underwent angiography (again, something that's only done on the weekdays?!!) and within a couple of minutes the Dr found the issue - I had a Spontaneous Coronary Artery Dissection. I'm very lucky it occurred lower down in one of the minor arteries. If it had been higher up or one of the larger arteries I probably would've died at home.

A SCAD is a rare form of heart attack that occurs when the lining of the artery tears away from the artery wall and forms a blockage. The good news is that it generally heals on its own, the bad news is that there is nothing much that can be done to prevent it from happening again. It is a result of weakened blood vessels which is a complication of my known condition Ehlers-Danlos Syndrome. My skin and vessels are so fragile that I am covered in bruises at every blood-draw and catheter site, everywhere an ECG node sticky and catheter sticky tape was ripped off and even where the doctors pressed on me to check for swelling.

I was discharged on Tuesday afternoon and am now awaiting a more detailed full body CT scan to check for Fibromuscular Dysplasia - another condition common in Ehlers-Danlos Syndrome where the arteries are more like strings of sausages than tubes, ie having bulges and narrowings.

These recent developments make me wonder if I was categorised with the wrong form of EDS. When I was finally diagnosed in 2014 I was considered to have Hypermobile EDS - a mild form which make affects the joints, so easy tearing of ligaments and tendons, overly flexible joints and high dislocation risk, but generally not life-threatening. But in Vascular EDS vessel and organ aneurysms, dissection and ruptures are common. In severe forms life-expectancy is around 50, milder cases can make it to around 70.

Given that leukaemia is the family curse and took my paternal grandmother at 41 and my dad at 75, I've already made my peace that I might not have much time and that's ok. I'd rather go suddenly than go through the lingering death my dad went through.

Looks like I'm going to be on disability permanently now, but at least I can stop feeling guilty about it. From now on all I'm focusing on are my writing, creative pursuits and those close to me.

I was so moved by the kindness and care of everyone who looked after me from the paramedics (one I recognised from being on Tinder, lol - I only windowshop), nurses and doctors to the catering staff, technicians and orderlys. I was also so fortunate to be placed in a room with two older gentlemen whom I got along well with and for three days from sun up to sun down we chatted and laughed and joked around. It felt like being on a school camp - sneaking out of our beds without permission (we had mobile ECG monitors that we could carry on us like a cell phone) and talking past lights out. I actually had so much fun I was sad to leave and came away with new friends in them and their partners. If I had been in one of the other rooms (one patient told me she was envious of our 'party room' as her room felt like a 'funeral home') I think I would be in a much darker place right now.

I hope you all are having a less heart-stopping start to the new year and that 2026 has good health in store for you; I know all too painfully how precious it is.