myheart debate – exercising with an ICD

Watch myheart members, Paula Beck and Joseph Tanner debate with CRY’s myheart cardiologist, Dr Michael Papadakis on exercising with an ICD.

 

Dr Papadakis: Good Morning ladies and Gentlemen, my name is Michael Papadakis. I’m one of the cardiologists at St George’s University of London who works very closely with a charitable organisation: Cardiac Risk in the Young. Cardiac Risk in the Young is dedicated to preventing sudden cardiac death in young individuals, but very importantly is also dedicated to supporting young individuals who have been diagnosed with one of those conditions that predisposes you to sudden cardiac death. Since 2002, Mrs Cox, the Chief Executive of Cardiac Risk in the Young, has established the myheart group, which supports those young individuals and gives them a platform where they can meet and exchange experiences as well as get advice relating to their condition. And what we have noticed over the years is that there are a number of questions that come up in the myheart group that are not covered comprehensively through the national health system that all those young individuals attend. And that particular question is about exercise and it’s about how much exercise and what sort of exercise can a young individual do once they’ve been diagnosed with an inherited cardiac condition. And in particular if they have been considered to be at significant risk and have been implanted with a device such as an intracardiac defibrillator. So today we’re extremely fortunate to have two of those young individuals. We’ve got Paula and we’ve got Joseph as well. They’ve very kindly donated their time. And what we’ll try to do over the next few minutes is to go through the experiences that Paula and Joseph had: that they were diagnosed with a condition, implanted with a defibrillator through the national health system and the difficulty they had in identifying what sort of exercise and how much exercise were they able to do. So we’ll try and identify their experiences and the gaps that exist within our national health system and how we have been able to help them through myheart group. Thank you very much, both, for coming today. So shall we just get directly to the point? I would just like you to go through your experience through the national health system as to when you were given a diagnosis, what happened to you and what sort of advice you got relating to exercise.

Paula: I was diagnosed with Brugada Syndrome in 2011, after my brother died suddenly. I was fitted with an ICD in 2012 and after having the ICD fitted, I had a month off with no exercise which was told to me to do. And then, beforehand I exercised quite a lot- went to a lot of classes, that kind of thing. And then after I didn’t know how to go back into exercise, there was no support really, or advice on how to get back into exercise afterwards. So I went back into exercise myself, I found it quite challenging and I was worried: I didn’t know what sort of exercise to do, what sort of limits to take it to. And obviously having the ICD implanted, it causes a lot of restriction on your shoulder, your muscles. It moves about. So you lose a lot of strength. And then when you go back into it, I found when I went back into exercise, it was moving about a lot, it hadn’t settled properly. I didn’t know what exercises were safe to do, what exercises weren’t safe to do and what limits to take it to. So I kind of worked it all out myself really and took it gradually and then after that became a fitness instructor.

Dr Papadakis: So this is a very important point: so when young people and anyone gets implanted with a device, that usually goes under the left collarbone, what happens is that obviously the device is new to your body – your body is getting accustomed to that device, it can move around quite a bit and the advice we usually give to people is that they shouldn’t really do exercise- at least intense exercise- for the first month. And also they should be careful with the movements they do with their arms. So, they should try and avoid to lift their arm above shoulder level, but that’s just for the first four weeks. The other important point to make is that we don’t want people to keep their arm still because we don’t want that [lifting arms] to become difficult. So they can move around they can do their daily walks and daily chores, but they shouldn’t do any heavy lifting with that particular arm or try and reach up above themselves. Those sorts of restrictions.

Did you have a similar sort of experience to Paula, Joseph?

Joseph: My story is different to Paula’s, I had a cardiac arrest after running the Hastings half marathon in 2008. I was then diagnosed with Brugada Syndrome and I was implanted with an ICD. For me there was no support, it was, well, very minimal: they told me that I wouldn’t be able to run again or do anything. It was quite negative to be honest. I think it was from my first pacing test that I pushed and asked them about what I can do, which then they booked me a treadmill test. For me, that wasn’t sufficient enough, because it was only, like, twenty minutes on a treadmill and I’d go a lot further than that, so I didn’t feel that it was sufficient enough for me. I then contacted CRY and met up with the myheart group. It’s from there that I actually got the encouragement to actually start going back into fitness and going for runs again. I’ve re-joined a gym. I’m now also a fitness instructor and recently I just completed a marathon.

Dr Papadakis: So, guys, how were you told that your condition and the ICD will affect your ability to exercise? How did your consultant or physician that was attending address that?

Paula: My consultant told me to take exercise gradually and do it at an even kind of level. Not over-exercise – that was the main thing. So that was one of the things you’re unsure on: what that limit is. “Don’t over-exercise” –  I don’t really know which level that you could class that as. And also I was told not to do Body Pump anymore because of the weights. And so completely not to do it, which upset me emotionally because that was one of my favourite classes and, you know, the ICD was a precaution, I wanted to live a normal, happy life afterwards. So for the shock of having it implanted and then to be told afterwards that I had to reduce my exercise from what I’ve previously did. And I had to be careful and I had to cut out classes I did before. That was a bit of a shock for me to deal with as well as just being diagnosed.

Dr Papadakis: What about you Joseph?

Joseph: For me it was a traumatic experience because of having a cardiac arrest. I think that scares you beyond anything, because you came that close to death so, you know, even when people tell you stuff you just – even then, I don’t think I took much of anything in. I was told not to run again. I think that was one of the times: “not to run again at all”. Which was a bit like,”not run at all?” That’s what I do- I like running, it was my escape. I was literally told that I wouldn’t be able to do any of that sort of stuff but they did, I mean, so I said after my pacing tests, they did say that my settings were set up higher because I was a young person and they expected me to go back to fitness. But it was never clear on what I could do and what I couldn’t do. So I felt like I was left in the dark at the time.

Dr Papadakis: So the impression I get with both of you- more with Joseph, rather than Paula- is that the advice was fairly informal and none of you received any formal exercise prescription, as such, that would describe what can you do, how much, and at what level.

Paula: I also found the advice different from different consultants, which was very confusing. If it wasn’t confusing in the first place. I found that- because some were saying you couldn’t do ‘this’, and some where saying you could do ‘this’. So that was quite confusing.

Dr Papadakis: So in your view, guys, is there a better way of being told: what you can do and what you can’t do after having your diagnosis.

Paula: I personally think there would be, yeah. I think if you were told and they actually had facts behind what they were telling you and then they were to help you back into exercise or give you some sort of programme to work towards and stages, that would have been much, much- I would have been able to accept it easier.

Dr Papadakis: What about you?

Joseph: Yeah I would have to agree with Paula there because well there was really- there was no guidance or anything so you were just left in the dark a little bit so.

Dr Papadakis: So I get the impression from both of you, that if you had some sort of specifics regarding the advice, regarding what you can and you cannot do and at what intensity you can do it, then you’ll probably be more satisfied with that sort of advice and more likely to follow it compared to being told not to do anything on more or less a causal basis.

Paula: And if the advice was the same from all the different consultants

Dr Papadakis: And I have to say in my experience, you are absolutely right in that- and obviously one of the problems that we’ve got- as you’ve highlighted, Joseph, plenty of times, is that we do deal with a variety of conditions; some of them we know better than others. And that’s why there is a gap in our knowledge, particularly with exercise prescription and that’s why in a lot of situations it ends up being a casual discussion rather than a formal discussion followed by specific advice. How being within the myheart group help you in that sort of aspect? Did you manage to speak to other individuals who had similar experiences? Did you manage to get any advice? Was it helpful at all?

Paula: Yeah I found it very helpful, did you?

Joseph: Yeah I found it very helpful because I didn’t get back into the gym straight away, I said it was three or four months I had my treadmill test, but even then I wasn’t confident enough to go back. It was through the myheart groups that I actually, after meeting other people and talking to them that actually gave me the- well the encouragement to actually go for a run again.

Paula: Because everybody felt the same as well didn’t they, in those groups?

Joseph: Absolutely

Paula: They were all worried about- nobody had gone back to exercise.

Dr Papadakis: so how did you get started Joseph, then? So you had, you said, the experience with the CRY myheart group. And then how did you go about it: getting back into exercise?

Joseph: Well, like I said, I was encouraged, I made some friends through the myheart group. We were talking through on facebook and they’re always going “you can do it”. So I put on my running shoes and I messaged everyone on facebook saying that, “I’m going for a run for the first time”. And I had lots of messages of support saying “you can do it”, “you’ll be fine”. I admit, the first time I went for a run it was actually quite scary because, you know, it’s always in the back of the mind that something is going to happen. But nothing happened. And then I think from then on, I just moved forward which then I re-joined a gym. From then, I think I went crazy with my fitness, a little bit, right at the beginning because I was like really pushing myself, going on to cross trainers and trying to get my heart rate as high as I could. And it was just like seeing: how high I could get my heart rate up- it was a sort of challenge.

Dr Papadakis: Regarding getting on the treadmill and giving it a go. Did you have any advice from your ICD or from your doctor from the national health system as to how much you were able to do, how fast you could go?

Joseph: No, no unfortunately. I mean I didn’t even know how far I could go for a run or the distance. I mean, when I said- when I had my cardiac arrest, that was a half marathon, that’s 13 miles. I – when I go for a run, I can’t do anything less than an hour. I like to go for long-distance, that’s my natural ability, I can’t just do a short run or just ten, twenty minutes. I like to go for distance. So for me, I kind of felt I wish I had a bit more guidance on what I could do and what I couldn’t do. But yet again, I don’t think a doctor could go to you, “yes you can go this far” because obviously they didn’t really know themselves at the time and they probably still don’t actually.

Dr Papadakis: So how do you feel about your ICD now?

Paula: Now, initially, obviously it was very alien and big. Yeah quite intrusive in your body. I’m very aware of it and it is large in your chest. So emotionally, it’s one of those things that’s always on your mind and you’re very aware that it’s there.

Dr Papadakis: What about you Joseph?

Joseph: I first resented it, I didn’t like it, I didn’t want it. I knew why it was there. It was important for me but I didn’t like it at all. I’ve grown to love it. Well the thing is, I know it’s there to save my life. I mean I’ve been very fortunate enough that I’ve never received any shock therapy and –touch wood- I have never to receive a shock therapy. But, you know, it’s there if something was to happen. So you know it’s going to save my life, so yes, I’m now used to calling it my little soap box. Because it’s like a little soap for me- it just felt a bit like I’ve got a bar of soap on my chest. But no, it’s a part of me now, so I’m used to it. I think I may hate it if I ever get that shock, but for now it’s, you know, it’s there to save my life. So even when I do get that shock, I’ll probably be thankful for it. It’s just that I’ll hate it at that one moment.

Dr Papadakis: Could I just ask you something in particular? So I get the impression that in the beginning you didn’t like it, it was more of a burden rather than a benefit having it there. Has, however, over time, the ICD given you the confidence to do the things that you wanted to do- like going back to exercise?

Joseph: For me I think so, I mean it’s because when you go to the pacing test, they usually ask you what were you doing at this time or that time. And nothing has ever shown up when I’ve been exercising, it’s only when I’ve been sleeping. So it’s like, you know, when I did the Spartan race, nothing showed up on that day, or when I’ve done classes or done anything for fitness. It’s always a time when I’ve been asleep. So, you know, it’s ok, I can still do the things I want to do. If anything I must be concerned about going to sleep.

Paula: I find, with being so involved with leisure centres and that.  For a lot of the staff there, it would worry me if I didn’t have an ICD, to all those people that don’t and obviously are unaware if they do have a heart condition. But the sort of procedures in place, if somebody did drop down in your class, you know, so, in some ways I feel that at least if something did happen, you’ve got that straight away. So it gives you that confidence.

Dr Papadakis: Did you, being told that you should be limited, make you a bit more adventurous as to what sort of exercises or how much exercise you were doing?

Paula: It made me want to know ‘why?’ and the reasons behind being told that and what basis that knowledge came from.

Dr Papadakis: But the fact that you didn’t, did that make you react in a different way, compared to if you had all that information.

Paula: It did make me want to find out ‘why’ and carry on my normal life, yeah.

Dr Papadakis: and how did you arrive to the conclusions that you did arrive and go on to the gym and go on to the exercises that you do.

Paula: After doing a medical library search with you on studies that have been done in the UK, and seeing the lack of knowledge and then going on my own really, back into rehabilitation and taking it to the levels that I wanted to. And thankfully everything was ok because of my condition and everything being ok to exercise again afterwards.

Dr Papadakis: So essentially from the literature search- or the internet search that you did- you felt that you had the power to challenge the sort of advice, in a way that was given to you and the advice that wasn’t given to you. What about you Joseph?

Joseph: It took me a little bit longer, for me the moment they said to me I could never run a marathon again, I think there was always that little bone inside of me to actually go “no, I’m going to do it”, which you know, I only did it recently. It took me seven years, but I finally found the courage to actually go and do it, but in that time, I’ve built up my fitness tenfold. I think I’ve pushed myself even harder now than back before then. And I think because I have this condition, I like to challenge myself a bit more, which I think I’m probably a bit of a headache for some of my doctors. But the problem with when I was diagnosed in 2008, I was told a lot of times that they were learning from me, what I can do, what I couldn’t do, because they still didn’t know much themselves, they were learning from me so there’s lots of times where I was going to different doctors and they were giving me lots of different questions and, you know, I was telling them about my condition a lot of the times. So yeah, it was different for me.

Dr Papadakis: Just a last question. So do you feel in your current state- obviously both of you are exercising quite a lot, you’re both essentially fitness instructors, do you feel that there is any limitation to how much exercise you should be doing and do you feel that there are occasions that it goes through your mind that you’ve actually exceeded those sorts of limitations? I’m just trying to understand what the thought process will be.

Paula: I mean that’s always in my mind, every time I take myself to those limits- exercise-wise. But on the other side, because I’ve got the ICD, it kind of gives me that reassurance that even if I did take it to that level, I’d be ok anyway because it’s a precaution there.

Dr Papadakis: What about you Joseph? So what I want to understand in way, is what was the thought-process before making the decision to go that extra step, which I think most of us will agree that it’s probably a bit more than what you’ll be advised to do.

Joseph: Yeah, I don’t know if there is a thought process for me in that one. I tend to listen to my body more now though. What I mean by that is that if I’ve got a cold or if I’m not well, I won’t train. I’m listening to my body, I know if something’s not right, I won’t train and I won’t do anything. Because one of the things that I remember from the Hastings half marathon is that the week before I had a cold and then I did the half marathon and I know that my body wasn’t fully recovered from the cold and I think- I mean I don’t know if that’s the real reason, but I think that’s one of the contributions to having my cardiac arrest, is that my body wasn’t fully recovered. So every time I don’t feel well, I don’t train. I listen to my body, I listen to, you know, if something doesn’t feel right, I don’t do it. So I’m always- I think you should listen to your body more, and you should trust your own instincts.

Dr Papadakis: Ok. I think it’s very important for the young individual with inherited conditions and probably ICDs that are listening to us to highlight a few important points, which I think have been highlighted throughout our discussion, but the first point is that exercise is beneficial for you. And the exercise we’re promoting is a moderate degree of exercise on a regular basis. Not all individuals can do the sort of exercise that Paula and Joseph are able to do, they both have a specific condition called Brugada Syndrome, which is far more benign compared to other conditions, particularly in relation to exercise and the other important point is that for everyone: we want individualised and tailored advice because even in your cases, guys, you should have been advised that yes, you can do a marathon but in that marathon it’s important as to the sort of level that you go at. And also it’s very important that you keep yourself well-hydrated, you don’t provoke any electrolyte abnormalities within your body, and also you avoid the sort of sports that can increase your body temperature to the extent that may predispose you to irregular heartbeats that may promote a shock from your ICD. So for every single individual it’s important that they go through that sort of process with their doctor and they’ve got the right advice and the right sort of exercise they can participate in.

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