Author note: Tara asked me to write something after we chatted on Instagram. I wasn’t fully sure where to start, so I’ve created a rough timeline.
Summer 2019 - I woke up one summer night gasping for breath and feeling tight-chested; I assumed it was hay fever and managed to go back to sleep, but I was scared enough to book an urgent GP appointment the following morning. On arrival, the nurse I saw first did some routine observations; she left to get a GP and returned asking questions if I was a long-distance runner or super fit because my heart rate was incredibly slow; I was neither. After declining to go to A&E because I felt ok, I was referred to a cardiology clinic. Cardiac clinic came through fairly quickly and after an ecg and echo I was told my heart was running dangerously low and would need a pacemaker, again I’d insisted I felt fire, I was regularly in the gym up to 7/8 hours a week. Begrudgingly, I was allowed to leave on a promise of going to A&E immediately if I had any cardiac symptoms. Come December, I was on the tram home, my chest felt tight, and I was gasping for breath. After dinner at home, I took myself to A&E, where my heart rate was very low again. I spent my night in resus with the defib parked next to me I was allowed home but told the pacemaker needed to be done urgently and soon brought back for a few days on coronary care until it could go in.
I then went back to a pretty uneventful existence for several years. I worked as part of the senior management team of an operating theatre department, did home things with my husband and children, and even picked up a new hobby of gymnastics.
My cardiologist was happy that the pacemaker made me safe but curious why I’d developed the slow rate and occasional unusual rhythm. I was referred to a specialist regional cardiac centre. It was diagnosed I had a very rare inherited cardiac genetic disease that was affecting the conduction of my heart and would get worse over time.
I kept seeing the consultants at the specialist centre as my pacemaker was doing nothing, and irregular rhythms were becoming more frequent and severe. In early 2022 we agreed an operation to burn new electrical pathways in the wall of my heart was my safest option, it would be done through keyhole surgery. I spent all of 2022 awaiting a call for the surgery, continually on edge.
After another consultant visit in December 2022, the urgency increased, and it would definitely happen in early 2023. In May 2023 finally a date was booked. After a couple of stressful days of it being cancelled then booked again I finally went to the hospital on a Thursday ready for surgery Friday morning. Thursday night I remember signing the consent with a surgical registrar, under complications he wrote: conversion to open, stroke and death but listed them all as <1% chance. I’d previously spoken with the consultant about conversion to open, but stroke and death had never come up over the long 18 months of regular appointments, which felt weird.
After a sleepless night and a stress poo come Friday morning, I walked myself to the theatre, unaware of the significance of that walk. Hours later apparently on intensive care I was starting to come round more, I remember finding it hard to catch my breath then spotted a tube poking from my left chest which I recognised as a chest drain and quickly worked out that there was a hole in my lung. I tried to adjust my position to sit up and despite trying with my arms to push upwards went nowhere I then tried with my legs and found the same result. Not long afterwards my husband had arrived and was sat with me I was trying to talk to him but no words were coming out. Getting frustrated, I started thrashing about a bit in the bed, which was assumed to be me in pain, and I was pumped full of opiates. This continued for a few hours until there was a conversation about a facial droop I could hear. I pieced it together myself: I can’t talk, my left arm and leg aren’t responding, I’ve got a facial droop, and this is a textbook neurological injury. “Why won’t someone do something?” I wanted to scream but couldn’t. One of the cardiology team eventually came to do a review and pieced together the same I did and called the city neurology service. I then had a CT scan reviewed by neurology, but it was deemed to be too late at this point to try and do anything surgically with the expectation the blood clot sat on my brain had been there for a very long time.
I went back to ITU and spent a couple of days there followed by an acute stroke unit, I could almost see my work office from the bed. After a few days of my husband and parents constantly travelling and being exhausted, it was agreed to transfer me to my local hospital for rehabilitation there. I was transferred early one Saturday evening with a team more interested in their evening plans. I was met at the local hospital by a lovely team interested in getting to know me, putting me in a private room because I was a young man.
Rehab started Sunday morning. Sitting on the edge of my bed to assess my core strength, I felt drunk and like the room was spinning, unable to hold myself steady I toppled on a physio. I remained there for almost nine weeks with a continuous line of visitors (family, friends, workmates, gym friends) all keen to see me and entertain me. The physio and OT teams would spend hours a day working with me, my speech had returned, not powerful or with tone but I was talking, movement was hard, there was no activity at all on my left side. The team worked me hard and I was permanently exhausted even nodding off during a physio session, standing up became a big goal for everyone and I did it for the first time in the physio room with my parents there observing as they regularly did, we all had a little cry. Once I’d got the standing done we moved onto walking, to start with the physios were dragging me around or moving my left leg for me. After a few good days of progress one Saturday afternoon a lovely physio came in on her day off to do some more work with me, I’d been sat outside the ward in the sun with my family in a wheelchair when she arrived. We went into the physio room, and she asked if one of my family could help as she needed two people. My mum agreed. About half an hour later, with lots of assistance, I took my first wobbly steps and once again cried, as did my mum and eventually the physio. I’d given up thinking I’d ever walk again.
When I finally got home, I needed a wheelchair, a turning device and a shower chair to get me home safely, but it required a huge effort from my husband.
With my physio and OT team following me home, we continued rehab for many months. After a few weeks at home, I mastered the stairs and went back to my bedroom and bed, which felt like a huge step. Then, I graduated to standing showers, with our en-suite being easier. In early 2024, I completed a driving assessment and, with guidance and practice, ordered an adapted car. In spring, I returned to work. I can no longer scrub in surgical cases, but I’ve found ways to provide other input and be useful.
It’s a long old slog this stroke business; it’s not fun, and daily, I still get frustrated and wish it hadn’t happened.
Many of the things I’ve mentioned here for Life Gives You Lemons can be found more in-depth on my blog: www.strokeandmirrors.uk
BW
Ben
Comments