ARVC and running

Does anybody out there have any experience of dealing with ARVC (Arrhythmogenic right ventricular cardiomyopathy)? I was diagnosed with this a couple of months ago after a couple of years of experiencing bouts of rapid heart rate which culminated in me being admitted to hospital.

Since then I have had two rounds of catheter ablation to attempt to get rid of it. However the doctors stress that ablation (if it works) will only get rid of the current manifestation of electrical disturbances and that more are likely in the future, and if I keep running it makes them more likely still. I have run since my schooldays (I am now 38) and the 2 months since I was first admitted to hospital is the longest break I have ever had. I was doing about 50 mpw, now I am not doing anything.

As well as no running I am currently on a beta-blocker (Bisoprolol) which fairly effectively stops me from doing much anyway. And aspirin to thin the blood.

Next week I have an exercise test to see if the last round of ablation was effective - if it was then I may be allowed to do some gentle running and they may reduce the dose of betablockers. The consultant is fairly sympathetic to the idea that I want to run but he is adamant that I can never return to the level I was doing before.

They don't seem to be very clear on exactly what sort of exercise causes the problem - I asked whether it depended on the speed or the volume. Would it be ok if I ran very long distances very slowly? Or if I only trained 15-20 mpw but more intensively? They don't seem to really know but weren't very happy with the idea of either. Not very far and not very quickly seemed to be the only option, which is fine but doesn't give me any scope to test myself, to compete. On the other hand I don't want to drop dead.

Until 2 months ago I knew nothing about this and I have been learning quickly. Any advice/information is welcome.

Woodman

HI Woodman, I realise this message is being sent nearly 4 years after you originally posted it!

I have recently been diagnosed with possible ARVC. The doc says I tick some of the boxes to have it, I'm having a catheter ablation on Friday. There doesn't seem to be much information on this condition does there? 

I was wondering did you manage to find out any more information? How has your running been since your post? Are things any better for you?

Do any other runners/cyclists out there know anything about this condition?

Hi leggy,

I know quite a bit about this condition - an ex-colleague of mine suffered from ARVC. He was a runner too. I've also experienced an ablation myself (for AV re-entrant tachycardia) so I know what you are facing in that specific regard.

Most of what I could tell you (specifically regards ARVC) won't make pleasant reading so I'm reluctant to just divulge it without you being absolutely sure you want to know.    

Regards, Groz

Many thanks for your reply Groz, whatever you know I would be interested to hear.

I've been reading up a bit about the condition since I was diagnosed. I can't seem to find any posts or details about runners with it so I'm trying to find out if any runners/triathletes/duathletes still compete with this. If there are ex runners - how you cope, deal, carry on training, maybe take up different sport, would cycling be a better option, if the ablation helped things.

Training is not only my hobby it's also my job/career - I'm a personal trainer, running coach and work part time in a running shop!

 

First point I would make is that your doctor doesn't seem 100% convinced you've actually got ARVC and it's not clear from your post exactly what "boxes have been ticked" other than the implication from the fact that you're having an ablation on Friday, suggests you are already suffering from a very serious arrythmia. It's not easy to diagnose ARVC with absolute convinction and I presume you've already been through the usual gamut of MRI's, ECG's, Echocardiograms and the like. I really hope they are wrong.  

Nevertheless, I'll tell you the gist of what the medics told my mate and what I know from my own experiences as a former nurse  ...

...short of getting a heart transplant, once you've got ARVC you've got it for life. It is a progressive condition that will get worse over time. There is no known cure and no known cause. It tends to run in families. Symptoms are dealt with as and when they arise, usually when they become so intrusive that they affect quality of life. It's a condition you have to life-manage just as you would say for insulin dependent diabetes and one you should give very serious respect to, because it can undoubtable kill you. Sudden death in athletes, who previously appeared to be completely healthy is often attributed to this condition - not everyone gets symptoms, or any warning that such a serious condition has afflicted them.

I can't emphasize this enough, but if the medics really think you have the condition, your immediate family should be screened to see if they are affected by it too. As I said, they may not have had any symptoms to date but it does have a strong hereditary link.  

Given that the condition gradually changes the tissue in your heart from healthy muscle to relatively useless fibrous tissue and even fat, sometimes causing pronounced arrythmias as a result, you can imagine the impact this will have on your heart's ability to function efficiently and what it will do over the longer term. 

You simply cannot exercise vigorously with this condition without subjecting yourself to a high risk of a fatal attack. I'm afraid that doesn't leave you with too many options and I really feel for you, even more so given how much your life revolves around training. 

The ablation will (if successful) address your arrythmia in the short term, but they could recur because the condition is progressive and you might need further ablations. The absence of arrythmia doesn't mean you are safe to exercise.   

They can place something called an ICD in your heart which is a sort of automatic defibrillator that will kick in if things go pear-shaped but these are very expensive and are not commonly prescribed. 

As I said in my last post, there's not much in this reply that will bring you any good cheer but remember that you might not actually have this condition. That has got to be your highest priority after your ablation - to get as much expert opinion that you can from the medical professionals to ascertain whether you have this condition or not. 

I genuinely wish you all the best and hope that you've got nothing worse than an errant arrythmia that is sorted by your ablation. Keep us posted.

Regards, Groz. 

Hi again Groz

I had my ablation yesterday and am to go back to hospital in a couple of weeks for another exercise test to see if some of the arrythmia have been cured.

I asked the doctor today if I haven't got ARVC what could else could I have. He said that  ARVC is on the top of their list and nothing else. I presume I have got the early stages of it. An ICD was mentioned, I think this is a possibility at a later date for me.

The boxes I tick at the moment are that I have an enlarged right ventricle and also having unexplained arrythmias at rest.From what I know the next stages are that the heart doesn't pump as efficiently and the muscle turns fat and fibruous. Then the left ventricle is affected. I've had ECGs, heart scan MRI scan and treadmill exercise test t find all this out. The cardio doctors have been really good and very thorough.

I've been gradually feeling worse when running for about 9 months, last year I thought the palpitations were due to low iron. My iron levels went up to ok level and my running was getting slower. I started wearing a HRM in January and noticed it going over 200 on most of my training runs. On a few runs it got up to 230-240.

Thanks for sharing all the information with me, I'm trying to find out as much as possible.

Do you mind me asking how your ex-colleague is?

 

My ex-colleague changed jobs just under a year ago (which involved relocation) and I have no clue as to how he is doing right now.

He had stopped discussing his case with me several weeks before he left the company because it was upsetting him too much, but before that, he used to talk a lot about it, and I could understand why. It's a scary condition and who wouldn't want to talk about it, plus as a former nurse and an experienced runner myself, and having experienced a heart condition too (albeit non-life threatening) I guess I was the logical person to talk to about it.    

His first encounter with the condition was a sudden onset of arrythmias, which followed months of a non-specific general deterioration in his running performances and training. He just basically felt unwell all the time - at first he thought it was over-training, then some post viral syndrome, then he thought he had chronic fatigue syndrome and so the list went on as he became more and more exasperated by his condition.

With the onset of the arrythmias and their increasing regularity and intrusiveness, he eventually sought professional medical advice. To cut a long story short, he was eventually diagnosed with ARVC. He too had right ventricular problems and over a period of time had several ablations. They didn't seem to work very well from what I could gather. I think he was taking some kind of beta-blocker too but he wasn't too specific about that and I got the impression he was going to stop taking the stuff because he said it made him feel even worse. He was advised not to run at all - but he was an 'all or nothing' type of athlete so he either had to give up running altogether or just ignore their advice. 

He ignored their advice.    

He continued training just as before, doing big mileages though he had dropped the intensity work but he was finding it all increasingly hard and depressing. The last time I spoke to him things hadn't changed much, other than he was getting even slower. I was hoping that he would get so slow that he would eventually see sense and just give up, but knowing him, I would imagine that he is still doing the same thing or he has ran himself to death - it's just the way he is.

I couldn't be too judgemental myself because I'm a lot like that too - I would probably continue running because it's such a big part of my life - and yes I would probably take the same dumb risks, yet as a former medical professional I would certainly advise otherwise. 

I know there is more to life than running and there may be other forms of low intensity exercise that might be ok to do, but I don't envy you your options and do still hope that you haven't got ARVC or that if you have that you are indeed at the early stages and hopefully have many years ahead of you, albeit pursuing something less vigourous.

Regards, Groz   

I don't have AVRC but have just had an ICD fitted for VF (as well as a double bypass) so if anyone wants to know about them ask away, although only had mine a month and luckily its not gone off yet. Good luck to the OP.

Thanks Groz and Joe. It's only recently I've begun to understand the workings of the heart and how complicated it all is! I think the ablation went pretty well, I'm hoping to have another ECG exercise test in a couple of weeks and will see then if the arrythmias have been cured.

Groz, your post was helpful and I can understand what your ex colleague must have gone through. From what the doctors have told me, my symptons and condition were masked when I went to my local GP as I appeared fit and healthy. Because I hadn't been enjoying my last few runs and had been feeling dreadul before being diagnosed I know I will only carry on running if I start to feel better. The doctor at the hospital told me I can try some gentle jogging this week so will see how that goes.

Joe, I know everybody's running paces are different. are you managing to run at a decent pace relative to what you ran before with your ICD? 

An ICD shouldn't effect your running performance unless they have also configured it for pacemaking. I think this is a standard feature these days but I was very adamant before fitting that in no way was I going to tolerate any pacing within my normal range measured with my HRM which is 36-174. They agreed.

Of course many people including myself who are given an ICD are also on drugs that modify the heart rate, I refused to take beta blockers as they have a bad reputation for running but they did persuade me to take an angina drug (Procoralan) which has a lowering effect. I haven't got as far as finding out whether that impacts me or not yet.

Joe

PS talking of complexity, the System Guide for my ICD has 328 pages!! You wouldn't believe how complex the configuration possibilities are. 

Joe, does that mean your resting heart is 36 and your maximum is 174?

If this is the case you're about the same as me.

I was wondering how they go about setting the ICD up? Can you modify the pacemaking? I am on the lowest dose of beta blocker, like you, not sure yet, how it affects me when running.

 I am starting to realise, however, running with ARVC is not really an option, so am thinking of alternative ways of keeping me occupied and fit!

leggy wrote (see)

Joe, does that mean your resting heart is 36 and your maximum is 174?

If this is the case you're about the same as me.

I was wondering how they go about setting the ICD up? Can you modify the pacemaking? I am on the lowest dose of beta blocker, like you, not sure yet, how it affects me when running.

 I am starting to realise, however, running with ARVC is not really an option, so am thinking of alternative ways of keeping me occupied and fit!

Yes or at least I've recorded it dipping as low as 36. For RHR you need to look at the lowest you've ever seen as opposed to an average RHR as usually it only takes a handful of beats to trigger the device.

The devices can be configured any time by the clinic by placing a magnetic reader device over your chest. They do an initial config the day after implantation then you start to attend regular clinics (for the rest of your life). Some devices only take a minimum of 40 for bradycardia detection, luckily mine goes down to 30 so I insisted they set it to that. The kind of tachycardia/fibrillation events they look for at the other end of the scale turn out to be way higher than I could possibly achieve even doing hill reps so this was less of an issue. I think it was 250 for AF and 220 for VT or something like that.

Leggy, Groz, Joe,

I found this thread and got an account to be able to reply.  I was diagnosed with ARVC/D two years ago.  I am ~50 yo, and by then, I had been fairly active for a long time.   Various sports: run, bike, climb, swim ... My peak training hours at 40 were still at about 25hrs/week (summer.)  I was never very good, just good enough to place in my age group, sometimes.  I was dumb enough to think that all was well if I could hurt my training buddies. I never knew that I was slowly developing a heart condition.  I just thought that whatever slowdown there was was due to natural ageing. Then in a 5k in April 09, I felt awful, and three days later could not complete a 10 miler and ended up in the ER with an HR of 250bpm for a couple of hours.  A week later I had an ICD, and a few months later an ARVD diagnosis.  I very quickly became so prone to VT (ventricular arrhythmia) that any kind of running or biking was out of the question.  A year later I got an ablation which at some positive effects, since it kept me from having to go to the hospital every few weeks.  I do not yet know if I am positive for any of the known mutations which are thought to contribute to the condition, and my kids are still running on their own will.  I have no family history that I know of.  I should point out that there is a strong belief amongst "experts" that engaging in strenuous activity when symptoms are present will accelerate the disease progression.

exrunkid, Europe and the US both have official recommendations about sports participation for each of the cardiac diseases. Some of us 'cardiac athletes' think they are rather on the conservative side but everyone has to weight this sort of thing up for themselves. You can read the European guidelines here, it appears to say no competitive sports for those definitely diagnosed with ARVC.

Sporting guidelines

Officially I'm allowed low-moderate dynamic and low static sports; this apparently is bowling, table tennis and flower arranging. OK I made the last of those up

Leggy,

I don't know if you still read this so I won't write much now. Last summer at the age of 39 I was diagnosed with probable ARVC. I had experienced what turned out to be ventricular tachycardia whilst training for an Ironman triathlon. Nowadays I do very little exercise.

One of the problems with ARVC is that so little is known about it there are no firm guidelines as to how much exercise you can or cannot do. As someone above hinted at it is likely that any level of exercise can cause damage, and presumably alter the rate of disease progression regardless of whether you had any symptoms while exercising.

I spoke to a sports cardiologist a few weeks ago who told me that (also due to the variety in severity they see) he has some patients who can lead a reasonably normal athletic life; but also that it is one of the few conditions where he has had to tell people to stop exercise altogether.

My own take, supported by my consultant, is that I try and do enough to maintain some cardiovascular fitness (and sanity), but in comparison with the average 40 yr old bloke. This of course is much less fit than I was 16 months ago when it all started. Oh and triathlons are a no-no .

If you've not already found it through your googling the BHF have a really good booklet about ARVC on their website: http://www.bhf.org.uk/heart-health/conditions/cardiomyopathy.aspx#Arrhythmogenicrightventricularcardiomyopathy

Hope you're getting on okay, and shout if you want to chew the cud about it anytime.

Cheers,
Matt

Joe, Matt, Exrunkid and Groz

I've been away on cycling holiday in Italy, this was for our 25th wedding anniversary, a lovely treat, amazing scenery. I couldn't actually do all the cycling I wanted. My heart rate one day was up to 240 for several hours, a few days after on the same route it was maximum 150.

Thanks for the offer of chewing the cud, I'm still wondering what I can and can't do although I know what you mean about triathlons and competing being a no no. I did a duathlon as part of a relay (bike section) a couple of weeks ago and it was so good to be part of a race and part of the banter before and after etc. 

I don't know if you're the same, as a personal trainer and running coach also, I'm finding it hard to say "no" when friends ask me about taking part in future races or "challenges". This is what I used to love doing. 

I got a copy of the ARVC from the hospital and did find it very useful.

I know what you mean about the sanity! Would you be able to give me an idea of your present training schedules? I've not been given any guidelines and just an idea would give me something to work at. That would be a big help.

 Ta, Julie

Hi Julie,

Glad to hear you still managed some cycling and I hope you enjoyed it, despite the episodes of 240 hr. I have similar hr tales, with episodes of VT having my sitting down for half an hour with an hr of 195 odd, which is where it starts to get uncomfortable for me.

My day job is not related to exercise so I guess I am not immersed in that world as much as you must be. Over last summer after my diagnosis all of the exercise I was doing was related to commuting to and from the office. Two days of cycling ~ 10 miles each way and one day when I ran about 7km one way. Then I was made redundant so that stopped and despite having three months off I did basically no exercise. Over the past month or so I have started cycling once a week, about 40km a go. That is literally it.

I am lucky in that I have an almost 2 yr old son so there is plenty else to fill the exercise/Ironman Training hole. But it's still annoying. I am planning to try and build it up a bit but basically I think you have to see what you can do. When I am out now though my pace has to be slower, no more standing in the pedals to get to the top of the hill; it's all about getting to the top at the lowest hr.

I remember reading articles about race strategy "run your own race". And I try and apply that now, my "race" is not the same that it was a few years ago. So if I have to take it easy and let people run or bike past me who previously would not have been able to then so be it - they're not running with a heart disease.

I think you have to carefully find out what your new limits are. have you had a confirmed ARVC diagnosis yet?

I have to go now, meant to be going away with work in a few hours!

All best.

Matt

Hi Matt

 Not yet been confirmed definite ARVC although the doctor says it's top of the list and no other possible conditions that it could be.

Sorry to hear you were made redundant after having been diagnosed, you sound like you have your hands full with your son, my two sons are older now, I remember the terrible twos though - good fun

True what you say about run your own race. I'm going to be doing parkrun this Saturday 1 minute walk, 1 minute run and see how far I can get - a new challenge! I'm hoping to encourage lots more people who are wanting to join in but think they're too slow.

Have you been to any of the CMA meetings, there's one on 25th June in Manchester, I was wondering if they are worthwhile attending?

Best wishes

Julie

Hi Julie,

I hope the parkrun was a success.

 I haven't been to any of the CMA meetings so thanks for pointing out the one in Manchester on Saturday I wasn't aware of it. I was planning to go to an Arrythmia Alliance one last autumn but it was cancelled at short notice. I might try to get up there on Sat but suspect that will be tricky now. It would be interesting to hear about their latest research, but you can't say much in a 30 min talk.

Cheers,

Matt

Hi Matt

Hope you're well (ish)? What've you been up to exercise wise?

The parkrun was good thanks, I was going to do one lap and build it up, in the end I did the whole 5k, took me 38 minutes which is slower than what I'm used to, was excellent fun at the back!

I've just spoken to a nice man at the CMA, apparently, at the moment, there's only more person with ARVC attending so he said if I get to the meeting about 11.30 just the 2 of us can have a question and answer type session with the cardiologist. This is good as we won't need to sit through the discussions that aren't relevant to us. If you're interested and able to make it, you can ring to book yourself on, the number is 0800 0181 024.

 Julie