Living with ARVC/D
My story begins in March 2017 when I was in my final month of training for the London Marathon. Though I was not built like an athlete, I had been reasonably successful at running 10k and half marathons, invariably finishing about 1/3 the way down the field.
Keen to complete the London Marathon before getting to 60 – still nearly two years off – I was successful in getting a charity place and set about racking up the miles. I was now regularly covering 15 miles in one session and pushing on further.
On my fateful night, however, I was attempting a more modest 5k run, possibly continuing to 10k if I could make it. Though a short run it was a bit foolish – I’d had a hard day at work, not eaten properly and walked 10k to and from work as well. Still, with the event just a month away I thought I needed to grasp every opportunity.
The run itself was a bit of a non event for most of the distance. Boring. Mile after mile. But then 5k in, something happened – it was like I was hit with a blast of warm air and I felt just slightly light headed.
This was odd but I knew something serious had happened. I could not feel my pulse and my watch was erratically showing random figures. Quickly I felt my shoulder get painful and breathing got a little more difficult. I headed for home – around 1km uphill. Slowly I made it and, arriving, my wife saw I was in trouble. A trained nurse she took my pulse and couldn’t find it – but she summised it was beating really fast.
A few minutes later the paramedics she had called arrived. I was quickly wired up and my heart rate was showing up as in excess of 240 bpm. A vibration rather than a beat. Quickly I had a canula in my arm, shocking pads on my chest and I was on my way to Bristol Royal Infirmary, about 4km away, which boasted one of the country’s leading facilities.
I remember leaving the ambulance and being told they would have to shock me as a matter or urgency and that they could only give me a light sedation. I didn’t care and after a modest jolt suddenly everything was back to normal. I felt fine again! Fine, but confused. Could I go home now, perhaps?
Of course not – I was rushed, queue jumping a man and a lady who were on adjacent trollies, for an emergency angiogram. My fear of needles was forgotten as the camera made its way up my arm and around my heart – only to perplex the doctors. There was nothing wrong! No blockages, no thickening of the arteries, infact, a very good-for-age heart.
The fact there was no indicators to what was wrong meant I was put under close observation, and wired up to a EKG and sent for a rest. Violent ectopics apart, my heart settled down, again confusing the staff who thought I had had a heart attack yet was not showing any of the conventional symptoms.
Cutting a long story short(er) I ended up having an MRI scan that revealed nothing obvious until the cardiologist, who was well versed in the condition, suspected ARVD. That was confirmed as the MRI was extended.
That cardiologist was excellent – he filled me in on the condition gave me hope and a future (which I had written off) and said that they would give me some drugs to prevent the arrhythmia I had suffered on my run reoccurring, further drugs to lessen the strain on my heart and fit an ICD.
I spent two weeks in the Cardiac Care wards at Bristol feeling pretty well but worried about the future. I did become a bit of a minor celebrity as, unlike so many cardiac patients who arrived there because of poor diet, poor lifestyle, it was fitness that brought me in!
Having never been ill before the idea of a minor operation was stressful. Moreso because the staff said ‘you’ll be awake and you can watch on a screen if the doctor agrees’. No, I passed on that. I just tried to doze as a result of the medication, only to wake as the anaesthetic wore off towards the end of the operation and I felt some tugging as a stitch was applied.
The next day I was home. Feeling weak, but not unduly so. It took a number of weeks before I could go back to work, but I quickly picked up where I left off. What I was not prepared for was the mental problem I would have. I was warned that because the condition was so unexpected I could suffer PTSD but, rather arrogantly, I’d ignored the possibility of this. I should not have.
I got increasingly unwell mentally, even though physically I was, if not fit, at least okay. I was having dark moods, which led to dark days and the constant belief I would not survive more than two weeks into the future. I would not make any plans, I could see nothing happening beyond those two weeks and every ectopic beat would send me deeper into despair.
In the end my wife took me to see our GP. He reassured me that I was ‘safe’ in that the combination of lifestyle changes (no more running) drugs, and ICD would prevent any reoccurrence of the sudden death condition and that ARVD progresses slowly.
That fell on deaf ears and I could not be dissuaded from thinking that in the next two weeks something would happen. The doctor prescribed a course of PTSD counselling at the local NHS Mental Health Clinic but I initially ignored this too. Being a scientist, it was obvious to me that talking to some arty farty person would not stop me from being struck down very soon.
After pressure from my wife (who of course was at the receiving end of this malaise of mine) I did go. And, as expected, it began with some (as I thought) arty nonsense: “what colour is happiness?’ and “put bad thoughts on leaves in the river to flow away”. Absolute nonsense, so I thought!
As the session – and sessions – moved on however, I did begin to open up, face my fears and recognise them as unwarranted. Six weeks later I was pretty much upbeat. No longer did I have my two week window, I began planning for a holiday (though I would take my St Jude Medical monitor with me…) and even Christmas, four months away.
Since then I have remained pretty positive. Physically I can go for weeks with no significant symptoms to periods mild arrhythmia (nothing to worry about, as the doctors advise); be strong at times and weak at others but slowly, I’m putting everything back together again and then got, possibly the best news, in an almost throw-away comment from my consultant. Following a checkup he said “everything is looking okay now so make an appointment to see me again in… four years”! From thinking I would not live two weeks to needing a check up in four years was one hell of a surprise. And my monitor does check me in the intervening time.
There’s plenty more to come in this story no doubt, but I’m hoping that it’s a story that will go on for quite some time now!
Peter
Please get in touch if you want to hear anything more: [email protected]
Or call me on 0788 619 9640 (UK number). I’m more than happy to share more details of my story and would quite like to hear yours too.
My story begins in March 2017 when I was in my final month of training for the London Marathon. Though I was not built like an athlete, I had been reasonably successful at running 10k and half marathons, invariably finishing about 1/3 the way down the field.
Keen to complete the London Marathon before getting to 60 – still nearly two years off – I was successful in getting a charity place and set about racking up the miles. I was now regularly covering 15 miles in one session and pushing on further.
On my fateful night, however, I was attempting a more modest 5k run, possibly continuing to 10k if I could make it. Though a short run it was a bit foolish – I’d had a hard day at work, not eaten properly and walked 10k to and from work as well. Still, with the event just a month away I thought I needed to grasp every opportunity.
The run itself was a bit of a non event for most of the distance. Boring. Mile after mile. But then 5k in, something happened – it was like I was hit with a blast of warm air and I felt just slightly light headed.
This was odd but I knew something serious had happened. I could not feel my pulse and my watch was erratically showing random figures. Quickly I felt my shoulder get painful and breathing got a little more difficult. I headed for home – around 1km uphill. Slowly I made it and, arriving, my wife saw I was in trouble. A trained nurse she took my pulse and couldn’t find it – but she summised it was beating really fast.
A few minutes later the paramedics she had called arrived. I was quickly wired up and my heart rate was showing up as in excess of 240 bpm. A vibration rather than a beat. Quickly I had a canula in my arm, shocking pads on my chest and I was on my way to Bristol Royal Infirmary, about 4km away, which boasted one of the country’s leading facilities.
I remember leaving the ambulance and being told they would have to shock me as a matter or urgency and that they could only give me a light sedation. I didn’t care and after a modest jolt suddenly everything was back to normal. I felt fine again! Fine, but confused. Could I go home now, perhaps?
Of course not – I was rushed, queue jumping a man and a lady who were on adjacent trollies, for an emergency angiogram. My fear of needles was forgotten as the camera made its way up my arm and around my heart – only to perplex the doctors. There was nothing wrong! No blockages, no thickening of the arteries, infact, a very good-for-age heart.
The fact there was no indicators to what was wrong meant I was put under close observation, and wired up to a EKG and sent for a rest. Violent ectopics apart, my heart settled down, again confusing the staff who thought I had had a heart attack yet was not showing any of the conventional symptoms.
Cutting a long story short(er) I ended up having an MRI scan that revealed nothing obvious until the cardiologist, who was well versed in the condition, suspected ARVD. That was confirmed as the MRI was extended.
That cardiologist was excellent – he filled me in on the condition gave me hope and a future (which I had written off) and said that they would give me some drugs to prevent the arrhythmia I had suffered on my run reoccurring, further drugs to lessen the strain on my heart and fit an ICD.
I spent two weeks in the Cardiac Care wards at Bristol feeling pretty well but worried about the future. I did become a bit of a minor celebrity as, unlike so many cardiac patients who arrived there because of poor diet, poor lifestyle, it was fitness that brought me in!
Having never been ill before the idea of a minor operation was stressful. Moreso because the staff said ‘you’ll be awake and you can watch on a screen if the doctor agrees’. No, I passed on that. I just tried to doze as a result of the medication, only to wake as the anaesthetic wore off towards the end of the operation and I felt some tugging as a stitch was applied.
The next day I was home. Feeling weak, but not unduly so. It took a number of weeks before I could go back to work, but I quickly picked up where I left off. What I was not prepared for was the mental problem I would have. I was warned that because the condition was so unexpected I could suffer PTSD but, rather arrogantly, I’d ignored the possibility of this. I should not have.
I got increasingly unwell mentally, even though physically I was, if not fit, at least okay. I was having dark moods, which led to dark days and the constant belief I would not survive more than two weeks into the future. I would not make any plans, I could see nothing happening beyond those two weeks and every ectopic beat would send me deeper into despair.
In the end my wife took me to see our GP. He reassured me that I was ‘safe’ in that the combination of lifestyle changes (no more running) drugs, and ICD would prevent any reoccurrence of the sudden death condition and that ARVD progresses slowly.
That fell on deaf ears and I could not be dissuaded from thinking that in the next two weeks something would happen. The doctor prescribed a course of PTSD counselling at the local NHS Mental Health Clinic but I initially ignored this too. Being a scientist, it was obvious to me that talking to some arty farty person would not stop me from being struck down very soon.
After pressure from my wife (who of course was at the receiving end of this malaise of mine) I did go. And, as expected, it began with some (as I thought) arty nonsense: “what colour is happiness?’ and “put bad thoughts on leaves in the river to flow away”. Absolute nonsense, so I thought!
As the session – and sessions – moved on however, I did begin to open up, face my fears and recognise them as unwarranted. Six weeks later I was pretty much upbeat. No longer did I have my two week window, I began planning for a holiday (though I would take my St Jude Medical monitor with me…) and even Christmas, four months away.
Since then I have remained pretty positive. Physically I can go for weeks with no significant symptoms to periods mild arrhythmia (nothing to worry about, as the doctors advise); be strong at times and weak at others but slowly, I’m putting everything back together again and then got, possibly the best news, in an almost throw-away comment from my consultant. Following a checkup he said “everything is looking okay now so make an appointment to see me again in… four years”! From thinking I would not live two weeks to needing a check up in four years was one hell of a surprise. And my monitor does check me in the intervening time.
There’s plenty more to come in this story no doubt, but I’m hoping that it’s a story that will go on for quite some time now!
Peter
Please get in touch if you want to hear anything more: [email protected]
Or call me on 0788 619 9640 (UK number). I’m more than happy to share more details of my story and would quite like to hear yours too.
