Exercising my heart to death (Part II)
Running (and to a slightly lesser extent, cycling) has been central to who I am for the past 30 years of my life. This is my story about how aerobic exercise can quickly turn from being a healthy and heavily promoted pastime to one which has near lethal consequences. I go through the events as they unfolded, the psychological turmoil that resulted and pay my eternal gratitude to all those friends, family and medical professionals who have been there to help.
For those who haven’t read Part 1 of my story – here is the article where I describe the initial events of my heart problems, being rushed into a specialist heart facility, ready to be defibrillated and the realisation that my life was about to change forever.
A year to forget?
2020 has been a strange year. It’s been a long one. For many it’s one to be forgotten. I echo similar sentiments in many, but not all, respects of my life this year. In February I was discharged from a 2-week hospital stay having recovered from 5 sustained bouts of exercise induced Ventricular Tachycardia (VT) where my heart was lucky not to go into full cardiac arrest. Having been a dedicated, some may say obsessed, international level distance runner for all my adult and adolescent life, things were about to change significantly. Here’s a ‘run down’ of my story so far and, like the year 2020, it’s a long one, sorry….
The various near-death experiences were both humbling & stressful. As soon as I left hospital and before I got back to work, Sonia and I both decided a small break would be the best course of action. For years the two of us have been extremely lucky to visit so many different places in the world. We love travel. We love the spontaneity of jumping on a plane at the last minute and winding up in some remote, normally warm, location. So, let’s go for it, let’s head somewhere warm for a week-long break. It’s February, so we’ll probably have to travel outside of Europe, but we don’t have too long to waste getting there. Caribbean maybe? Indian Ocean? Middle East?
Then it suddenly dawns on me…. I’m scared. WTF! Scared to do one of the many things I’ve always loved. Exploring and travelling to remote locations may not be the best idea if I need urgent medical attention. The doctors have not currently given me a conclusive diagnosis, it could take a year before enough time has passed and any changes observed to understand the exact cause. Without the diagnosis, it’s hard to be certain on the chance of re-occurrence. All I can currently work with is the fact all past episodes have been as a result of intense levels of exercise. So, begrudgingly, we decide to holiday in the UK… …in February… …which turns out to be one of the wettest February’s on record. If that’s not bad enough, we decide to visit the north west, statistically the wettest part of the country. Even worse, we choose Burnley (and the Yorkshire Dales). It’s grim up north! Before I get trolled from all the northerners, don’t worry I’m one of you and a proud clarets fan, having spent the first 18 years of my life growing up here. I’d just rather not come here on holiday 😊
Reconnecting with friends and family
The moment I arrived, I realised this was the very best choice. I get to reconnect with my family, who I regularly neglect, including my gorgeous new nephew. I also link up with my grandparents 3 of whom are still alive, all close to 90 and as active as ever. I can’t bring myself to tell them it’s me, 50 years their junior, fitness fanatic, health guru who’s just nearly died of a heart attack. Their positivity and zest for life really perks me up, yet a darker side of me can’t stop questioning ‘why me’. I keep these thoughts deeply locked away but over the coming months it becomes harder and harder to keep them bottled up.
I also connect with the guy who first got me into the sport of athletics at age 12. I haven’t seen him for 20 years, yet I have so much to thank him for. A real selfless hero, he used to dedicate all his spare time driving me and his two sons to training and competitions week in week out. He taught me a lot about dedication, applying myself and self improvement. Athletics, distance running and my endless pursuit of getting faster was born out of this time in my life. We meet and it’s like we’d never been apart. Great to catch up, but again I have dark thoughts about why it all has to end. Why can’t I keep going? Why can’t I keep trying to get faster and doing what I love? It’s what I’ve done since 12 years old.
We’re staying in a lovely little village nestled in the Lancashire hills. An old Victorian style terraced cottage immediately adjacent to the only through road, which our bedroom window faces. We wake up early on Sunday morning. Sunday being the day all runners head out on their ‘long run’. In recent years this has become one of my favourite workout days, moving up to longer distances and seeing how hard I can go having moved away from much shorter, faster track distances.
Outside of the window we hear the heavy, freezing rain of the north west coming lashing down. However nothing can extinguish my burning desire to get out there and smash a 20 miler. Then I hear footsteps. Runners! As I pick out their voices I realise, not only runners but former international runners who we’ve known for years enjoying their Sunday run. Turns out they live just across the road from where we are staying! Before I get on to whatsapp to let them know about how we were ‘rudely’ awakened 😊, more dark thoughts – why can’t I be out there with them? Just like the old times.
We catch up later over coffee and have a laugh about the earlier situation. Again, it’s really good therapy to meet up and connect with old friends even if, occasionally, talk turns to running and other people’s race goals. Having been in the sport since I was so young, meeting 90% of my friends through these pursuits, including my very best friend who graduated to become my wife 😊, all social interaction turns to this subject at some point. I have to figure out how to deal with this.
Our chat then takes an interesting twist and as she learns about my recent issues. Over recent years my friend had retired from elite level sport herself and taken up a role in the national governing body medical team. She then advises me of a world renowned sports cardiologist who specialises in elite level athletes, Professor S. I then recount how many times his name has come up in the last few weeks following my admission to hospital. How great the running community is in sharing and offering help. Such was the volume of recommendations; I’d already arranged to see him as soon as I returned from our mini-break.
Some time alone together
But before that, we had a few days in the Yorkshire dales where Sonia and I could just be together without anyone else, even though it had been so good to reconnect and meet so many old friends and family. As we pulled up to the Airbnb, slight panic set in again; the property was at the very end of a narrow, 1km long farm track. What if I needed an ambulance? WTF! Stop worrying! I can’t believe how much of a hypo I’ve turned into overnight having loved the thrill of constantly taking risks wherever I went. I had to get this sorted or I would drive myself crazy.
I did some very short and very easy runs before breakfast, however they almost always resulted in big heart rate spikes after only 10 minutes. What has happened to me? Have I damaged my heart so badly I can’t even jog? I couldn’t understand it as I felt absolutely fine. No pain, no exertion, nothing. Just a watch that kept bleeping incessantly indicating I should be near tempo effort. If only! So instead, I diverted my energy into walking and we walked all day taking in places I hadn’t been since a very young child. It was nice to share it with Sonia as she’d never been and, given it was February and almost the whole of the area cut off by biblical floods, we had it largely to ourselves. At least I took some solace we were doing something slightly extreme.
Before our break concluded I found another activity to divert my energy into. This time chasing NHS secretary’s, almost as incessantly as the bleeping of my heart rate monitor. It took a lot of energy too, but I was determined to ensure I had all of the data, scans and reports from my earlier investigations whilst in hospital so that Prof S had everything he needed available to him to make an accurate diagnosis. I received the last document one day before my appointment. Job well done!
I traveled down on the train to see Prof S with a sense of renewed optimism. I’d been told all of these great stories and how he’s worked with many of the world’s top athletes across many sports. I’ve been in elite level endurance sport for almost 30 years, pushing my body to it’s limits day in, day out. I’ve achieved a great deal of success but naturally, always wanting more. In recent months I’ve set new bests over half marathon running just over 1 hour (or considerably over 1 hour if you are an elite level athlete reading this!), I hit FTP’s on the bike of 300w (a shade under 5w/kg), so I’m sure there can’t be anything too wrong with my heart. I bet he’ll assess me and conclude all the abnormalities the previous cardiologists remarked on were just be down to the fact I’m an elite athlete who regularly pushes his cardio-vascular system to the max.
We sit down. Instantly I’m drawn to his calm, caring yet highly professional demeanor. What everyone has said about him really is true.
Then he hits me with the facts:
- Significant scarring of the left ventricle
- General enlargement of the heart and inflammation of the walls
- Right side of my heart 1.3x bigger than the left (it’s meant to be smaller)
Then he hits me with some sobering truths:
- Very lucky to be alive
- Very high risk of sudden cardiac death if I continue to exercise
- It may never improve, the most positive outcome would be to control any degradation with reduction in exercise
- Time will tell, but diagnosis could be ARVC, a genetically pre-disposed condition that can be surfaced by extreme endurance exercise. Left untreated and continuing to exercise effectively turns your heart muscle into a fatty dilated bag, unable to pump blood around your body i.e. heart failure.
- Lethal VT rhythms originating from the RVOT part of the heart (relevant later)
Oh shit! Shit! Double-shit! Fuck!
Initially (and probably still to this day), I’m in denial, how could this be? I’ve been an athlete for so long. I’ve competed at such a high level. I’ve achieved great results even in recent months. This is my whole life, my friends, my wife, it’s all I’ve ever known. Why now? And surely there must be a cure? A way back to my old life.
The guy is an absolute saint as he patiently listens to me grappling with what I’m coming to terms with offering advice and solutions wherever possible based on the best knowledge currently available to modern science. I later learn that this is a very fast moving area of cardiology with more cases coming to light on an almost weekly basis. Maybe it’s due to the advent of more and more extreme challenges, athletes pushing much longer into the older age groups, online exercise platforms driving high levels of competition at any time of day. Who knows the cause, but one thing that comes in to my head is that I need to help spread the knowledge to anyone I can reach. Maybe some good can come of this. As such I would urge everyone who regularly partakes in high end endurance sport to go for a cardiac MOT. The charity CRY would be a good first port of call and/or your GP. Early prevention is a much more preferable route than the one I ended up taking!
Back to my prognosis. So what’s next? What do I do now? I have a perception that he would ideally like me to stop exercising completely, although he never actually stated that and maybe I was reading things wrong. However, I definitely got the sense we had to take things very easy, exactly the same advice I was given in Glenfield following my episodes. I’ve never liked following advice I don’t like the sound of, hence why I sought out Prof S. However, I know this guy is the real deal, I’ve formed such an instant connection, I’m going to do whatever he recommends it will take.
So, how fast can I run safely? Prof S then advises me he regards 7minutes per mile as being ‘intense exercise’. Intense?!? That’s the easiest I ever go. I’m sure the guy is very well trained in psychological issues. Good job, because I must appear borderline insane to most people. I’ve just dodged death following intense exercise, and now I want to get back on it. Totally logical, right?
We form a very positive set of next steps:
- Significant reduction in exercise volume ~50%
- Significant reduction in exercise intensity – keeping HR around 120bpm
- Continue taking beta blocker medication to suppress my HR even further
- Book in for a full electro-physiology study of the heart with potential ablation of the RVOT (the source of my bad VT heart rhythms)
The 4th item really excites me. This procedure maps the electrical system of the heart with the hope of finding some bad wiring that is the source of the lethal rhythms triggered when I exercise intensely. The ablation zaps this part of the circuit to stop it ever happening again. However, I’m rightly brought back down to earth with an appropriate dose of reality; this could show lots of electrical scarring which is untreatable and would definitely mean a life without exercise. If this is not the case, there’s also a high possibility the surgeon will not be able to stimulate the bad rhythm, thus have nothing to ‘zap’. Finally, even if it’s zapped, it may either not completely work or simply move to another area of the heart.
We settle on the view, there’s probably around a 50% chance of success of the procedure. Unfortunately, this does not fix the underlying structural issues that were found, which may be the ultimate cause. As mentioned earlier, there was little hope these would ever improve, we just have to see how best they can be managed by way of a significant reduction in exercise. OK, when can I have the procedure? Tomorrow? Perhaps not that quickly, but Prof S being the guy he is does everything possible to set me up with another very highly regarded heart surgeon.
I don’t leave St George’s with what I was hoping for, however I feel there is now a way forward. We have a plan. I call more secretaries trying my best to fast track the next set of appointments and get in to see the surgeon, Dr S. Little do I know how crucial my attempts to expedite these procedures will be. Dr S again fills me with optimism and I feel blessed I have found someone with such confidence in their ability to solve my problems. I go under the knife on a Wednesday. A mere two days later the whole country is locked down for 6 weeks due to Covid (what else would it be ‘due to’ in 2020) with uncertainty of any non-essential operation being performed for a much longer period thereafter.
I’m shocked to learn I will be conscious throughout most of the ablation procedure. I walk into a very space age looking operating theatre and lay myself down on the table in the middle. It’s the scene I have in my head of being abducted by aliens as they perform their various tests on me. Within seconds I have 10-12 people surrounding me as they prepare for battle. Again, I feel blessed that all these incredibly experienced, knowledgeable and talented medical professionals are swarming around me, each performing their crucial individual tasks to ensure the greatest chance of success. In goes the catheter into my groin and another in through my arm, within seconds one of the team announces they are in my heart as I see a medical instrument squirming around a large cavity on a 80” TV screen.
Well this is a novel experience, I can’t feel a thing but they are happily going about their business mapping the electrical system of my heart. Modern science is very cool. After a few hours things start to get interesting as they pump me full of drugs to speed up my heart and hopefully stimulate the VT. It takes a while but I feel it go! Great news, they’ve at least got this far. I then become less conscious and apparently, I’m in there for almost 5 hours. As I’m coming around being wheeled out of theatre I see Dr S. “Did you get it”? He reassures me of his confidence. Not 100%, but a very good chance.
Out of hospital
I’m out of hospital again but plunged into the new world of “lockdown”. I’ve been told not to exercise for at least 2 weeks, so at least I don’t have to worry about how to get to work (I prefer to cycle). The weather was perhaps the best the UK has ever experienced at this time of year. All day blue skies and unseasonably warm. Another thing I notice – everyone, I mean everyone, is out exercising, walking, cycling and …running! An old me would be all over this, having the flexibility to work from home, I’d be getting out as much as possible to soak up the rays and get some miles in. Not this time!
Once a few weeks pass and I’m allowed to restart, I begin with some very easy runs. Some go well, others result in the same HR spikes I experienced earlier. Often resulting in me walking home, sulking with a face as long as the covid lockdown has been dragged out. I had a word to myself and promised not to give up hope. Next time it happened, I stopped, waited for my HR to drop and then restarted. A few times doing this I noticed that after about 10 minutes everything stabilised and my HR values were perfectly fine. I realised this had all been caused by the bad contact points of my monitor against my skin. I felt like an idiot, but at least I also felt a great sense of relief it wasn’t my heart.
Next move, cycle to Boots to buy some lube. Nope, before you ask, Sonia’s luck was not in. I’d read this was the best thing other than Ultrasound gel to improve the contact points on the heart rate monitor. That would become the daily new routine – get dressed, lube up, go run. Heaven!
Things were starting to look much more positive. As lockdown eased, I linked up with many of my local mates, many of whom had also now retired from elite level sport, and we started running together regularly. Before this year, I’d always be the dick no-one wanted to run with as I’d be pushing too hard when everyone was on a recovery run. So now was a great opportunity to stop being a dick, get a bit more social, and just enjoy a run with some added banter.
Typically though, I got over-confident, adding volume more and more. One Sunday I decided to go to 13 miles as I’d felt fine doing 10 the previous week. Totally logical! It was also well within the volume reductions I’d agreed with Prof S (sort of anyway), so what the heck. All went fine, then I decided I wanted to build a patio in the nice weather. Upon mixing probably my tenth batch of mortar by hand, I started to feel a bit nauseous and my heart didn’t seem to happy. Immediately I took the hint and went for a rest. That evening I woke in the middle of the night with a really weird sensation in my chest. Almost every 3 beat there would be a huge pause followed by a very strong beat that would shake my chest. My previous trait of being a dick had returned, with a vengeance. This was my fault for pushing too hard.
I couldn’t settle. I wired myself up to my smartphone ECG and panicked when I saw a very unfamiliar trace. We called 111 and they agreed I needed an ambulance. Fuck! Really don’t want to go back into hospital. Along they came and identified the same rhythm I had seen earlier. As they monitored me, they suddenly became aware of who I was. It was a big boost to my ego until I realised why they knew me. Apparently, my impressive VT episodes in January, tolerating over 240 BPM for almost an hour without passing out, had become a urban legend amongst the local paramedic community. Great!
Given my history, they agreed I should be seen by a specialist so wanted to take me to Glenfield, the local specialist heart hospital, I had been resident in Jan/Feb. They argued over the phone with the admissions team who didn’t want to let me in. Guess why…. …due to covid! Apparently, there may be covid on the ward. So flipin what, my heart’s not working, I’ll take the risk. The paramedic was amazing and he decided to take me to another hospital instead. They performed the same assessments and concluded I should be sent to Glenfield. [Face palm #HandsFacePalm].
I finally reach my covid infested destination, to find the emergency wards nearly empty (considerably less so than when I was admitted in January). The time passes as I quickly identify any ‘coughers’ on the ward whilst simultaneously pull my mask a little tighter trying to appear calm and collected. The cardiologist assesses me and concludes it’s nothing to be worried about, just some ectopic beats that should resolve normally and possible a result of the earlier ablation. Given how long I had to stay here last time, I’m so relieved to be going home the very same day. Upon returning home I burn my clothes and shower in bleach.
I vow to be more sensible and much less of a dick. As Sonia will attest, we’re never sure how long it will last, but I will at least try. Time passes and I get back into a regular exercise routine again. There are low times, but I try to stay positive. Having great friends around me and an awesome wife really helps. We’re also expecting our first child in October, so that gives me the best possible reason to be less of a dick. In fact, we’re highly confident the day of conception was the same day I was rushed to Glenfield in VT back in January and the day I was discharged was the day of the positive pregnancy test, so I feel there’s some sort of divine intervention in play with all of these events colliding.
Switzerland & surrounding myself with great people
Mid-summer, we decide one last holiday before our new arrival. With all the travel restrictions, my health issues & the need for ultimate relaxation we decide on a safe option to catch up with some very close friends in Switzerland. Panic sets in again as I realise we’re heading to altitude, as athletes somewhere we only normally go when we are wanting to overstress our cardio-vascular systems, not to chill out. I get reassurance that I will be fine as long as I listen to my body, watch my HRM and, as always, try not to be a dick.
I have a wonderful welcome party from the group of friends. The mutual love of running and sharing intense levels of discomfort whilst practicing the sport really does form incredibly strong friendships. It’s very difficult to explain if you haven’t had personal experience of something similar, but all that self-inflicted pain and suffering brings like minded people very close. It’s the times you feel close to death when you feel the most alive. Apart from obviously when you really are close to death, as I was earlier in the year, that makes you feel, well, close to death.
They have beers ready for me and everything. Straight away I feel I have to let them down. Since my diagnosis, I’ve been strictly tea-total, no caffeine, no dairy – basically cutting out anything that could hinder any possible recovery of my condition and/or produce systemic inflammation. It comes as a bit of a shock to them too as the last time I drank was with them on New Years Eve, the day of my last and final race in Germany. We went bloody hard that night too, leaving the collective suffering to the next morning with some serious hangovers. We then made it even worse on ourselves by a 10 mile run along the river. I still wonder to this day what health effect that sort of behaviour has had over the years doing similar.
Losing my identity
Switzerland was amazing as always. Historically St Moritz was always a mecca for people seeking a health boost, drinking the crystal clear water, taking in the epic vistas and breathing the clear, crisp mountain air. In some ways it was great to experience the place as a tourist rather than being on a training camp. We explored some places we would never have got to, had such an amazing time and laughs with our friends and on the whole, listened to my body taking a rest whenever I needed one. Some days I didn’t even run! Maybe you can teach an old dog new tricks! I did miss the days of doing crazy, intense workouts with my friends, not being part of the gang. Instead I just had to watch them suffer as I helped pace on the bike and diverted all my spare energy into making some pretty epic drone footage of the place. Overall though, I came back very refreshed.
The deepest of dark times
Back into the routine of running & cycling with friends, always having to run with my HRM and avoid going above any of my pre-defined limits. Things seem to be going well but something’s not quite right. Maybe I’m still in denial of my prognosis of never being able to compete or push myself again? Maybe I’ve kept too many frustrations bottled up inside? Maybe I just can’t accept what people tell me? My closest friends, quite rightly, regularly remind me things could be worse which they definitely could, but still it doesn’t seem to help, I feel like I’ve lost a part of me that helps define who I am; without my heart function, I’ve lost my lifelong identity.
Unfortunately, and behind closed doors, I have a number of episodes where all these thoughts, bottled up for so long, erupt. I get very down and over the period of a number of days I plummet to new depths of despair I’ve never experienced before in my life. I won’t talk to anyone, stop eating, sleep for 16 hours at a time. These episodes would normally last for a week, interspersed by a few good weeks, before the next trigger sending me back down again. It’s awful, I hate myself for it, I sometimes wonder if it would be better for everyone if I wasn’t around. I have a pregnant wife and although I’m fully aware of the deeply negative impact I’m having, I just don’t seem to be able to snap out of it. Is this depression? I’ve no idea, Sonia regularly urges me to speak to someone but I’m feeling so helpless and lost at these moments I can barely get myself out of bed. I also don’t want to burden anybody else with my problems. Fortunately Sonia steals my phone and contacts Prof S out of sheer desperation. I’m so glad she did.
He’s on to the phone to me straight away as I begrudgingly offload my problems. He knows exactly what to say and offers me some great advice, but crucially, some hope. He wants to see me again to reassess where I’m at. I’ve spent most of the year either fearing for my life everytime I go and run or, at best, being very cautious every step. I’m struggling to live in the moment, always fearing things may start to deteriorate, so this will be a fantastic opportunity to set my mind at rest. The best case scenario I prepare for is there has been no further deterioration in my heart function which will give me some peace of mind that the exercise levels I’ve adjusted to are currently safe. The worst case is that there has been deterioration. However, even in this scenario, just ‘knowing’ will make things better, at least I will know where I stand. This may sound very odd but if this were to be the outcome, I’ve decided I will not curtail my exercise levels. Both Sonia and I concur, life is for living. Yes, I could survive for many more years by sitting on the sofa all day but that’s not me and it never will be.
A life full of crazy endurance adventures
Ever since I was younger I used to thrive on doing crazy things. I remember at around 15 years old taking off on my bike one day without telling anyone, without any form of communication (this was well before mobile phones 😊) and rode for 6 hours or so as I took in a 75mile loop around the remote Trough of Bowland. I loved the isolation, the sense of achievement & adventure. Fast forward to the present day and I find myself about to ride around what must be the most isolated loop of tarmac in the whole of England near a place called Barrow Burn, Northumberland. It was a mere 30mile loop, looked really quiet and scenic with a few hills. Perfect! I wind up the valley, taking in the views and noticing how desolate it is. I think I must pass two farms over the course of 15 miles and even they looked uninhabited.
Close to the half way point the road starts to steepen as it heads away from the river valley. The old me would have relished this and hit it as hard as I could, knowing there must be a Strava segment for the taking. I decide to stay sensible and ride easy, quickly realising that my slower cadence and power now means I could do with a few extra gears. The downward spiral of death ensues as my cadence drops further and subsequently, my torque goes through the roof. Just as I start to crest the hill, panic strikes again. My HR monitor alarm goes off indicating I’ve gone over 150bpm. I stop for a minute but it’s not coming down? I panic more as this reminds me vividly of the times last Christmas, lying on the bedroom floor, when my HR would not drop. I try to distract myself by looking at google maps… …and then realise no mobile signal. Of course not, I’m in a valley that time has forgot. It then stars to rain and although it August, it’s the North East, so starting freeze my knackers off. I’m in a shivering panic as far away from civilisation as you can get in our country and all the positive vibes I had as I set off have well and truly been washed down the river.
Luckily my heart rate starts to recover. It probably wasn’t high for that long but I’m sure my panicked state must have prolonged it somewhat. I grapple with a very uncomfortable decision to give up on my intended loop and turn back. I’m cursing myself the whole way, thinking of the potential new adventure I’d missed. I’m also pissed my health condition is stopping me being me and stopping me being free. As I descend the final winding, narrow lane back to the start point, I come fast round a right hander only to find a car heading straight at me. Luckily my bike handling skills are just sufficient to instantly readjust and slot through a gap between a dry stone wall and it’s right hand wing mirror with only centimetres to spare on either side.
For years I’d predicted my death would be in an RTA given all the cycling & commuting. I’d much prefer that, gone instantly doing what I love rather than being trapped in an existence where I have to do everything with the brakes on, fearing for my life every time my HR exceeds 150bpm. This is no way to live. I’m breathing and my heart is beating but I’m far from feeling alive. I try to reflect on the positives of the ride and Sonia yet again does her very best to perk me up but it’s just more fuel to bottle up ready for my next ‘episode’ of despair.
Glimmers of hope in more dark times
I keep trying to find positives and keep trying to research potential ways out of this mess. Earlier in the year I’d been introduced to a guy, ST, who’s practicing some cutting-edge therapy. Primarily targeted at improving athlete performance, however it’s basis is by resetting and activating the body to function as it should before all modern day stresses have screwed it up. The concept sounds interesting and it’s claimed to have healed a number of varied health issues. I decide there’s absolutely nothing to lose and quickly get booked in as soon as coronavirus permits.
Throughout my athletic career I’ve always loved self-inflicted pain and suffering, I’ve loved the massive rush of endorphins delivered from going really hard on a climb or winding up a big kick at the end of a hard race. Externally inflicted pain however, like that delivered by sports massage therapy, I absolutely detest. In fact, it’s worse than that. I suddenly turn into a little girl on the massage table, unable to withstand even the faintest of touches. Apologies to any little girls reading this – you are probably 100x harder than me. ST doesn’t mess around, he’s massaging my skull, deep into my abdominals and around my jaw line. It’s torture but it seems to be stimulating some very real physical changes I become aware of.
A lot of the theory revolves around releasing the diaphragm and enabling deep belly breathing. As the diaphragm is connected to your vagus nerve, breathing deeply this way, stimulates your body’s parasympathetic nervous system which calms you down and slows all processes. It may seem a little far fetched to some that this would have help, but I decided to go all in and give it a try. Afterall the cause of my condition had been suggested to be due to chronic stress (mostly from intense, prolonged endurance exercise but I’m sure a dose of other life stressors would have also helped keep me tense whilst I was trying to recover from my training regimen). It’s also the key underlying theory behind the destressing effects of Yoga and meditation, which is widely accepted as a relaxation treatment. So on top of these sessions with ST, I commit to twice daily meditation with a specific focus on diaphragmatic breathing.
The treatment is all going well and I’m loving the feeling of hope. Unfortunately, I get another ‘episode’ just as I’m about to have my final treatment with ST. It’s a bad one. He’s at the house and I refuse to see him, preferring to lock myself away and stay isolated. I feel like such a dick, I feel like I’m in self-destruction mode. I’m also deeply embarrassed. To this day, ST is the only person other than Sonia who has seen me this way. I’ve got to get out of this mess.
Dreaming of being back with the gang
A few days before I head down to see Prof S for the follow up I head out with my run group and I’m in a much more positive frame of mind. We pass a group of my cycling friends too which I often ride with. One of my frustrations this year is having to turn down the opportunity on many occasions as they are likely to be either going too hard or too long for my broken body to tolerate without risk. I just want to be back with the gang. I put that to the back of my mind and we have a good laugh on the run. Just as I near home, I come to a very abrupt stop and, for the briefest of moments, feel like I was about to pass out. Good news though, I managed to pause my Garmin, Strava and the world will not see I had a small rest. I’ve never had this before and, at time of writing, never had it since. Still it instilled yet more apprehensiveness for subsequent training sessions.
The night before my appointment I get down again. Every time I’ve been to see a cardiologist there’s always been bad news resulting in some sort of additional restriction placed on me (for the good of my health, but a restriction nevertheless). I arrive and bump in to Prof S as he moves between appointment. His smile and calming persona evident even behind the covid enforced face covering. I go through a number of tests I’ve done before, firstly an echocardiogram. I immediately notice how professional and thorough this one feels compared to previous tests at other institutions. It probably takes almost 25 minutes, rather than the standard 5. He talks me through everything he sees.
Then on to the exercise stress test. A ramped treadmill protocol that gets steeper and quicker every 3 minutes pushing your heart rate up every time. I’m wired up and raring to go. Before I know it I’m operating at 180bpm, close to my max. In many ways this feels so amazing, I’m getting that hit of adrenaline as I try and beat the test and show everyone in the room just how hard I can go. This is great! Then I suddenly realise I’m very unconditioned to this sort of exertion, having not hit such intensities for the past year. Before I know it I’m begging for mercy and quit the test. I’m so happy and then even better news, the team can’t detect any arrythmia throughout the duration of the test. I decide to leave the champagne on ice for now as even when I had my VT episodes, there were plenty of workouts I did without any symptoms.
I then catch up with Prof S. To my absolute amazement he tells me my heart structure has improved. Yes, not just stayed the same, improved! The cardiomyopathy reported early in the year has reversed. He’s pleased to tell me the size and proportion is back within normal limits. I can’t believe it.
Again, I decide to keep the champagne on ice. We still do not know the cause and the problems may easily re-occur as quickly as they have resolved. I’ve also have no confidence that the stress test was just a fluke and maybe any other day I would have triggered some amount of VT. Given Sonia and my impending arrival within two weeks, we unanimously agree to continue everything the same that I’ve been doing this year. Keeping exercise volume low, intensity low along with many other lifestyle interventions I’ve made to keep stress and systemic inflammation all to a minimum.
You would be forgiven to think I’d still be unhappy, still unable to get any adrenaline hit and still having every step governed by my heart rate monitor. Quite the opposite, I left the hospital pumped full of energy, I now know there is a way out of this (at least to some extent), I feel I have control of my health again, I also have a plan. I still believe it is extremely unlikely I will ever race again, but that is a sacrifice I’m more than willing to trade for my health. However the prospect of one day being able to be free from the shackles of the HRM and push myself (from time to time) fills me with hope.
There is still the question of cause which we can’t answer yet. However the risk of an ARVC diagnosis has reduced given the cardiomyopathy reversal. I’m sure I must have some sort of genetic predisposition for these problems, but one of the high likelihood possibilities is I simply ran myself (close) to death. It surprises me this could be the case but I do look back at all the warning signs of my body urging me to stop. Like rupturing my achilles tendon, slipping a disc in my back and some days feeling sick at thought of another double run yet still pushing myself out of the door. Then there was all the 5am Zwift races / workouts whilst injured, often doing 5-6 a week. I think it was Thomas De Gent who said it was harder to win a Zwift race than get in the break on a grand tour. So make no mistake, these efforts were hard. On top of that it was an incredibly stressful period at work and we were trying for a baby. So, I think my heart had just taken a battering. I always thought I was invincible though, super fit and spurred on by living life to the extreme. It was always going to take something big to pull the emergency brake.
I know there is still a long road ahead though. Next up is a repeat test in the Spring next year to see if the improvements are sustained. Prof S also asked me to try and increase my fitness slightly beforehand so that I would be able to expert myself even more on the stress test. I’m looking forward to this but also incredibly nervous. How I will be able to do this outside of a hospital setting without fear is something I can’t answer right now. However that’s next year and right now I’m enjoying today and the feeling of overwhelming relief my body has found a way to at least part heal.
Thanks to Sonia for putting up with me and guiding me through and all the support of friends, family, doctors and the various medical teams.
A few weeks after my trip to Prof S, the new love of my life arrived into the world, Faith Elizabeth Samuels. We decided upon the name for a number of reasons a key one being the amount of faith we needed to ensure she made it. She was conceived immediately before the moment I was fighting for life in A&E with defib pads being applied to my chest in full view of her mother. She’s also had to endure all of the low times over the past 9 months, of which I will forever regret if she was sharing my pain.
I continue to have faith that the recent positive news from the Professor, impeccably timed with her birth, is some sort of poetic coincidence. I fell in love immediately when our eyes met, so much so, I didn’t even think about lacing up my trainers for almost a week. She’s the one and only person in my whole life who has had that effect. Maybe this marks a new chapter in my life where other things become more important than living my life to the extreme? Maybe, but unlikely still.
In any case I continue to have Faith