Surviving the Storm

The Storm that showed me more love than I ever thought possible, and strengthened my faith in humanity.

ICD : 16 , RoboT : Battered, but Alive ✌️

✔️Survive a Cardiac storm
✔️ Survive a second Cardiac storm within minutes of the first
Didn’t really want that on my bucket list 🤦‍♀️

By all accounts, I should not be writing this. On 5th April 2019 my heart rate increased suddenly to 300bpm. Repeatedly. I came very close to dying in my Brothers arms. A part of my heart quite literally did. While my family looked on, having just laid a beloved member of our family to rest.

I felt faint and dizzy walking up a shallow incline on the way back from Elizabeth’s wake, so I bent down, putting my hands on the floor and keeping my head low. It usually takes a moment but normally fixes me. I looked up to see my brothers turn around, felt short of breath and

**BAM** I felt like my heart had exploded.

Andy and Jamie were at my side, lying me down.

**BAM** okay, that one felt worse.

Andy dialled 999, **BAM** explaining the complexity of my conditions; the arrhythmogenic cardiomyopathy, the ICD which was firing repeatedly, and the porphyria. **BAM** All the while having to watch my body **BAM** jump and hear me scream in pain. Andy, how you made that call without swearing is pretty incredible. Actually, how anyone could have made that call without breaking is beyond me.
Jamie layered the coats **BAM** offered by nearby workmen over me to shelter me from the rain, while keeping me **BAM** calm. How the fuck you stayed calm I do not know Jamie. I’m so sorry my ICD shocked you too because I needed to hold your hand.

**BAM** by this point I was screaming in pain, begging them to make it stop. Not really fair of me. Sorry about that My Boys.
I don’t know how to explain how thankful I am that I was with you both. You knew what to do. You did it without hesitation.

Somehow I rallied. My family had already rallied. Total strangers rallied. Neighbours rallied. Professionals rallied. I survived because of their support, our awesome NHS and my ICD.

Cousins, Aunts and Uncles found umbrellas, blankets, coats, anything to keep me warm and dry. (Impossible, I was lying on cold, wet grass. But they kept my front mostly dry!), Even if that meant they got drenched…Richard you star, I hope you don’t catch a cold! Candy, I’m so sorry you had to make that call to my Mum. Karen, I remember talking to you, possibly so Jamie could help Andy with my vitals… I have no idea what I said but you’re used to my potty mouth 😂 Toni and Yasmin, thank you for getting Mum and for wrapping Minnies blanket around my head to keep heat in, you also saved my hair from going too frizzy 😉 Jake, your outdoor knowledge came in handy when you rearranged the blankets to keep me dry 🙌 Nicola, thank you for holding Mum upright because she couldn’t bend down to me, stupid arthritis. Mum, you knew which essential oils to give me and unsurprisingly the Balance and Ylang Ylang helped hugely. Neighbours appeared asking if we needed any more blankets? Pillows? Water? A phone? Anything at all? Off duty Nurses and GPs appeared at my side to help the first responder paramedic. All of you were amazing. I couldn’t see you all, but I heard you. You are all awesome. Thank you.

Being in Devon where resources are horrendously stretched for the mileage they have to cover, it took about 20 minutes for the first responder to arrive. By that point I was, thankfully, no longer being shocked. He confirmed I would need to go to hospital, radioed to find out where the ambulance was, checked vitals, collected the back story and squirted morphine into my mouth…obviously with permission, this shit was painful. A patient transport bus was all that was available and as my ICD had done it’s job, I was out of immediate danger so it was sufficient. Not ideal, but they arrived and got me off the cold, wet floor and into the bus with heaters blowing to warm me up. They ran some more tests and Mum found my Balance oil, again. The first responder had to switch and look after me as I was transferred to hospital. I have so much respect for this guy, going from a first response car to an unfamiliar patient transport vehicle without a second thought (apart from what he needed from his car), and for letting me continue aromatherapy techniques to keep me steady. I do hope he found his orange stethoscope.

About 2 hours after my ICD fired, I arrived in Royal Devon & Exeter ED. I was seen immediately and recounted the events to the consultant. We thought there had been 7 shocks, which would need investigation. It was almost 4pm on a Friday. The race was on to find an ICD technician and a cardiology consultant quickly before the end of their shifts.

Of course they succeeded and an ICD technician came down to see me. She waved the magic wand over my chest and began to download the data.
Credit due to this lady; aside from the quickly raised and released eyebrow, she was completely calm despite having to tell me what she did. I had had several episodes throughout the day, and at 13.30 they became so severe that my ICD had to intervene when my heart rate reached 300bpm. “1, 2, 3, 4…12..14…16”.

16 times. 16 shocks. 16 shocks with increasing intensity each time. Fuck.

Why? We don’t know. They will do some more tests, but we may never know. That’s Arrhythmogenic Cardiomyopathy for you.

The next two days are a bit of a blur. I was transferred straight up to coronary care and into a side room, so thankfully I only had to contend with my own monitor beeping. Whilst there, I received outstanding care from some extremely patient, kind and understanding medics.

Oromorph, Frankincense and Copaiba became my best friends for pain relief, the latter still are. Balance, Ylang Ylang, Lavender and Cheer to try and stop the creeping anxiety and depression. I know she’s bound to hug me tightly for a while, but I will do what I can to reduce the emotional pain, naturally. Deep blue for what I can only assume is soft tissue damage in my shoulder and chest from multiple defibrillator shocks. Despite using Serenity, Sleep evaded me for most of the first 24 hours because when anything came into contact with my left upper back or chest I wanted to scream from the pain. I couldn’t. That would have messed with my heart rate. Again.

Andrea and Chris brought Grace in to see me, my bouncy little cousin who had seen me on the floor and was worried. Thank you for my iced fruit slushy Bass’, best drink I had for 3 days 👌 I’ll come to see the lambs with you next year Grace.

Having stopped at my house to get supplies and Aurora, Martyn drove straight down after flying back from Italy and stayed as long as he was allowed in hospital with me. The Hero then drove my Grandmother home on Sunday night because she didn’t have enough medication with her for Monday, and we were unsure when I would be released. You really are a good egg, my love ❤️

I was let out on Sunday and thanks to the Bass’ and the Colbornes’ I had somewhere to stay for the night. Travelling 200 miles just after release would not have been my brightest idea, so I listened to Mumma Beans and we traveled home on Monday.

Over the coming weeks and months I will discover how much I need to adapt. How much I can still do. How much I will be able to watch others grow whilst they do. There is no doubt my life will change now. It is my choice to make sure the changes to come are the right ones for me. Physically. And Emotionally.

I would not have been able to tell you this story if we did not know about our Arrhythmogenic Cardiomyopathy. If I did not have an ICD. My Cardiac Storms would have been a Cardiac arrest, for which the survival rates are extremely low without an AED. Personally, I don’t think an AED would have done the job for me given how many times my ICD fired. I am lucky to be alive. I am lucky to have the family I have. Even though we got some really shitty genes. We are made of the stronger stuff. We survive the storms.