Yeah I'm fine thanks, just a "normal" desk jockey now, rather than a desk jockey with cycle helmet and running shoes under desk and various bits of damp lycra smelling on radiators!
I did a little bit of hill walking last week but have been away at the weekends so my recent rides didn't happen. Glad the 5k was fun.
Thanks for the details, that starts to sound more interesting. I need to check if I can have Saturday off from family duties but if that's okay I think I'll come up. Will let you know if you can expect to see me there.
I'm not going to make it to Manchester on Sat. I hope you have a good chat with Dr Elliot though and perhaps if there are a few key points you could post them here?
I see on the CMA website their next meeting is Sep 10 in London. Dr Elliot is also talking then so I've put that one in my diary.
Thanks again for alerting me to the CMA and I hope you enjoy meeting and get some answers to your questions.
Sorry you won't be able to make the meeting tomorrow. My computer at home is broken, we are waiting for a new one which we should have by Wednesday. I'm at the local library sending emails. Hopefully I will be able to post some useful information and comments about the meeting on here next week.
Have a good weekend, the weather forecast is good with some sun so I'm hoping to get out on the bike and maybe even swim in the lake!
Hope you had a good time at the meeting and took advantage of that nice weather. No rush to post anything here for me but a few key points would be nice.
I've swapped a few emails with the CMA this week and apparently the London meeting may have a specific ARVC session and normally gets 10-15 people with ARVC attending. So I'll definitely go along to that one.
The meeting was really helpful, I spoke with Dr Elliott for about an hour. There isn't really much to post on here as what Dr Elliott talked about was quite specific to me.
He said with what is happening with my heart rate, ie regularly going up to 240 when exercising and because I haven't definitely been diagnosed with ARVC, I need to see a specialist in sports and ARVC in London. My doctor at Wythenshawe had already referred me there so I've got an appointment with him in August.
Were you diagnosed with ARVC and did you have an ablation/defibrillator fitted? When you ran 7km a while back did your heart rate go up execssively?
That sounds really good, it's great you got an hour to yourself with Dr Elliott.
As you know ARVC diagnosis is not black and white, I spent several hours being MRI'ed which showed no real indication of ARVC, and other tests were also not clear. So my diagnosis was primarily based on the EP study during which they induced ventricular tachycardia (VT) quite easily. Whilst they were at it they also did an angiogram and it was those two that my electrophysiologist, Dr. Rowland, found the most convincing for ARVC. As of yesterday I have an appointment in a few weeks for genetic testing with Prof. McKenna which will confirm the diagnosis if it turns up a positive result for one of the known causative genes.
I've not had an ablation and there are no plans for me to have one. Whilst that might stop the VT for a while in the case of ARVC it does nothing to stop further damage occuring, so the symptoms will come back. Also it will cause damage to surrounding healthy heart cells and I suppose in ARVC the aim is to keep as many of them healthy for as long as possible.
An ICD was mentioned as a possibility for the future but they are not without their own issues and to be honest it's something I'd ike to avoid for as long as possible. I seem to tolerate the VT well so my risk of cardiac arrest is deemed relatively low. That said my doc said they should be viewed as a guardian angel.
Exercise-wise the B-blocker generally kept my heart rate and rhythm in check, in fact they kept it about 20 bpm lower than usual, thus restricting my running ability. So I could run (albeit slower than I used to) at a normal-ish heart rate. I used to try and average around 140, peaking about 150 and could do that for 7km okay - not run regularly for almost a year though so who knows now. Recent cycling I have tried to do the same but have had some VT attacks. However my HR does not regularly go up every time I exercise; and I cannot recognise a pattern in when I get VT and when I don't.
Anyway, that's about all for now. Should do some work!
Have a good weekend.
Hi again Matt
Thanks for your post again, it is interesting to hear how the condition affects people differently. You seem similar to me in that you're not able to work out when the VT happens and when it doesn't.
I was under the same illusion as you to avoid having an ICD fitted as long as possible, the docs have said if I would have had one fitted over the last few months it would have been very unhelpful.
Keep in touch and let me know how you go on with the results for your genetic testing with the Professor.
Matt and Julie,
Matt, I am no expert but, it sounds like you are already meeting the Task Force Criteria for ARVC. I was diagnosed with an RV angiogram and biopsy. My MRI was interpreted both ways (positive by the most reputable place, Johns Hopkins U, JHU.) The good news is that you are in very good hands with prof. McKenna. In the mean time, be extremely careful. Like you, I can also tolerate 240bpm, but I would never bank on that. I can put you in contact with someone who, one day, did not survive it. Obviously he had an ICD. Please, be ultra careful. You would not believe the first hand experiences told in ARVD support groups about needless deaths due to lack of ICD in known ARVD patients. My ICD is my guardian angel, flaws and all.
On a simpler not, at this year ARVD patient seminar at JHU, the recomendation not to exercise was strongly reiterated.
Not been on here for a while, how are you Matt and exrunkid and anyone else who may have this condition who used to run, cycle, swim, train and race a lot?
I had the appointment with Prof Sharma in London in August. He said I definitely have ARVC and said I shouldn't exercise above 100 heart rate. He said in my case a defibrillator wouldn't help me. I also saw my cardiologist last week at Wythenshawe, he was happy with ecg results and said I don't need to see him for another year unless I feel dizzy, breathless or blackout. He is sending me for the genetic testing at MRI in Manchester. I need to have my sons tested. My sisters and brother have been tested and seem to be ok.
Matt, did you have your genetic testing done and did any useful information come out of it? What else has been happening with your condition, are you healthy and well?
Hello all. I had forgotten entirely that I had ever started this thread, but came across it again trying to google ARVC and running.
In the intervening years I have come across one other runner with ARVC, and it was clear that his experiences were very different from mine. Having read through this thread, everybody is different, and nobody else’s experiences seem to relate to mine.
This is my experience.
After lots of tests including two MRIs the doctor identified one tiny area of heart muscle damage that was causing the VT. I had two goes at catheter ablation and the second one seemed to make a difference – it hadn’t got rid of the VT, they could still trigger it with the electrodes in my heart, but there was no sign of it in an exercise test. I continued with beta-blockers and had no problems for about 8 months, and I went back to running regularly. I was a bit slow, but no problems. Then I had one more episode of VT, the doctor had another look at my heart and decided that the damage was nearer the outside than the inside and an external ablation with a cryo-probe was probably going to work better. I had that done in April 2008, and they had to open up my chest and expose the heart to do it.
Since that time I have had no episodes of VT. I have however had quite a lot of problems caused by the operation, mainly Atrial Fibrillation (a common side-effect of open heart surgery). The last 3.5 years I have spent learning to cope with AF, something which I think now I have finally got the better of. I am running less than I did before all this started and quite a bit slower, but I am running regularly about 30mpw. I was taken off beta-blockers not long after the operation because they were causing too many problems with low blood-pressure and a resting heart rate in the high 20s, so now the only drug I am on is Warfarin to prevent blood clots caused by AF. I should say that there is a lot more information and advice on the net about AF and running. ARVC is definitely a bit more exclusive.
The cardiologist has tried to discourage me from running but accepts that it is my decision and that it is not an easy thing to just give up. The disease does not seem to be progressing in any way – no further signs of damage nearly 7 years after my first VT, and he has hinted that maybe I don’t have ARVC after all and that initial damage had a different cause. That is only speculation though, and the official line is still that I probably have ARVC.
The other runner I know was diagnosed in 1992, his heart has so many damaged areas that ablation was never an option, and has had an ICD since 1995. He runs but within the limits of the ICD, and he is happy that it is keeping him alive and he is able to exercise at all. As I said, very different.
Thanks for your post Neil, like you say every case of ARVC seems to be different. When I was first in hospital in March/April this is what frustrated me most as I couldn't seem to get a definite answer whether I had ARVC or not.
When I saw the specialist in London he was adamant I do have it so now I feel a lot more positive as I have some definite guidelines.
I've asked about coming off the beta blockers as like you say they make the resting heart rate very low, as they control my arrthymias very well I need to stay on them. They also make my circulation poor which is a bit of a nuisance as I get chilblains, numb hands and feet that turn white, I've heard that is Raynauds syndrome so wonder if anyone has any tips to help this? I'm drinking ginger tea on colder days at the moment and it seems to be helping.
I was thinking of setting up an ARVC helpline or forum or something like that as the condition is so varied and I think it would help people who are first diagnosed to understand a bit more about it.
Neil, do you still race and train, if so, how often?
I was doing a lot of running 5 years ago, when on Sunday 20th August, I did a 7 mile in the morning, read runners world and felt inspired to do a second run in the afternoon.
A mile into my run, I felt izzy, I then collapsed and blacked out. Albeit I was in the middle of a field, a lady and his little girl biked pass me and called 999. Threee weeks lates and a MRI scan I was diagnossed with ARVC and had an ICD impanted.
I was told that I had to limit my running, The Beta blockers did slow me down and running was not the same. I kept up 4-6 miles.
On boxing day 2007, running up a hill, slowly. I experienced my first ICD shock, then my second. Ironcially 100 yards from the first location I had collapsed. I had a heart rate montior on, get up when my heart had settled down and walked home.
I gave up running, but got into walking. I hated the "slow" feeling of the beta blockers and stopped talking them, against the doctors advice.
Unfortantely I was walking on the 21st September 2011, when I suddenly felt dizzy and then thud, the first of 7 ICD shocks. This time I could not get up, but had iphone and called amublance. I was in a middle of a field, but no where near the other two locations.
I have created a facebook group called "ARVC UK", please feel free to have a look and become a member. I started it due to belong to "hope for ARVD", which is based in the USA and found support in talking to others with the condition, but wanted to find UK based patients.
I am currently being reviewed for the ablation process. I've dealt with the Heart hospital in London, but now based at Bart's in London, plus have seen Prof. Schilling via the AF Centre at London Bridge.
Thanks for that information, amazing and good idea that you've set up a Facebook page, I've requested to become a member.
From what you say on the page, it sounds like you don't do much exercise any more? From the other posts on this forum it definitely is clear to me that every case of ARVC is different.
I've had 2 opinions, Dr Sharma in London and Dr Brown at Wythenshawe heart unit, both say because my arrythmias are so frequent if I did have an ICD fitted it would be giving me shocks several times a day. I'm on a very low dose 1.5 beta blockers which makes the arrthymias slightly less frequent. Doctor Sharma advised I should keep my heart rate below 100 when doing any form of activity. I can't have a higher dosage of beta blocker as my heart rate and blood pressure are already low.
As for the cardio exercise, gone are the triathlons, half marathons etc, I do a walk/jog 5k each week at my local parkrun and just coach at 2 running clubs, plus exercises in the core class I take. I'm getting more into walking to try and keep some level of fitness.
I do feel this advice/form of action is the best for me and not sure what other options there would be in my case.
When I was in hospital for a month last March, the doctors at first thought I should have been dead because my heart rate was all over the place, high (240 for up to an hour at a time). The alarms on the monitors were going off constantly throughout the day and night especially during the night as my heart rate used to go down to 26ish. Doctor Brown seems to think the ablation I had has helped matters slightly. By arrthymias I mean the irregular heartbeats, my husband says he can sometimes hear them and when I had the 48 hour ecgs the results showed very regular occurences of irregular heartbeats and triplets/eptopics.
Both the doctors haven't totally ruled out an ICD, they said it wouldn't be right for me at this time.
I thought the ICD was to regulate the heartbeat if you're having arrthymias to shock the heart into a regular pattern?
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