Hi,My post is asking for shared experiences of running with an ICD, before and after and how one deals with the anxiety of triggering another SCA, hopefully protected but with all the consequences.
Here's my story .
I have posted about what's happened to me over the last two years. Most recently collapsing on a Parkrun with an LVT recorded on an implanted loop recorder. I subsequently had an ICD fitted.For recovery through the summer I did extensive walking as an alternative to running. Late summer I did start running again and managed a couple of Parkruns with a mix of walk and jog, watching my HR as a key to slow down.
But as my approaching re application for my driving licence loomed I must admit to beginning to feel very anxious about triggering an event so I stopped running. This seemed to compound into feeling quite low, very unusual for me.
After three months of inactivity today I went for a walk/jog for 45 minutes and it was great. There is a real freedom, energy and well being feeling from running and it has lifted my day.
Are there any experiences of managing running safely, any guides? Driving is hugely important for many reasons and it would be awful to lose my licence if I trigger a SCA but cotton wool wrapping is just not healthy for me, body or mind.
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Chinkoflight
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I just noticed your post and felt like replying, although I have no idea what to say, really, other than I totally understand your comments on the well-being you describe. For me, the benefits of exercise in general and this feeling you experience are very important, maybe more important than a lot realise.
Having had the ICD fitted, will this not make any future events a lot less likely? It might not be too much comfort to you, but I believe most cardiac events experienced by runners happen to people who have no idea they have a problem, and then after the event. There are surprisingly few events, and personally I think they would probably have happened anyway.
The obvious answer to your question is to ask your GP or cardiologist, but I doubt you will get much of an answer. I think you should just listen to your body. Maybe you could ask the BHF nurses on what they feel a maximum HR should be for someone with an ICD, but then again I doubt they will be able to do so as it is so subjective. Personally I can't get mine above a certain value anyway, no matter how hard I try. I have no idea how and ICD regulates the heart rhythm during exercise either.
All I can say is if I were you I would do my best to carry on as I think the advantages of doing so will far outweigh any disadvantages, good luck and I hope you get some good advice.
Hi Chinkoflight, I also have a icd after a cardiac arrest while swimming. You don't say the cause but mine is genetic. An electrical problem with my heart called cpvt. There is a sensor that the pacing team switched on for me that alows the icd to adjust to exercise better. As long as you aren't doing HIT and accelerating then stopping quickly your icd should be fine and recognise the steady increase relative to exercise. The pacing team told me that your icd is safe up to 220bpm but I am under instruction not to exceed 135bpm. I have to walk again once I reach that but that kind of thing will be dependent on your cause/condition. Your icd is you friend and there to help. He wouldn't want to hold you back. The driving thing is a whole different issue that I have lived and understand. That is why I stick religiously to the 135bpm max even though I could happily keep going. You need to find your balance.
It is indeed condition specific. I am prone to rapid acceleration of Heart rate. The stress and adrenaline of heavy exercise is a known trigger of cpvt hence the low heart rate max.
Hi again to both of you. Thank you for your replies, I find them very helpful. Firstly the picture is my HR during yesterday's walk/jog. Captured on the ZEPP app and imaged on Strava. This was extremely low effort, average speed barely faster than a brisk walk. In spite of warming up first, I typically get this spike when I start exercise. When I was running with purpose the spike would be 160-180. I am never aware of a fast HR and have never perceived any Afib event. When I had my SCA there was less than a seconds warning and I ran into the ground apparently, on to my face. I had been anxious on previous runs about the high HR spikes I was seeing on my smart watch and called the EP team to see whether this was being picked up on my implanted loop recorder. The response was typical, throw your watch away, we haven't seen anything. For a variety of reasons I am sceptical they actually checked and we're monitoring the device. When I went into ED for the SCA I said I had an ILR and they could see if there was a problem. I had raised troponin levels so the simple diagnosis was a heart attack. I had had no symptoms. A subsequent echocardiogram showed no abnormalities. And after four days they eventually produced an 23 seconds LVT trace corresponding with my collapse. An angiogram also failed to find an obvious cause but some cardiologist then said an idiopathic event probably caused by a silent heart attack. Some wanted to fit an ICD and discharge but some cardiologists wanted further tests. I eventually went for a cardiac MRI and a PET scan at Oxford. The only finding was scarring and thinning on my left ventricle, cause most likely non ischaemic but they wouldn't do further tests and left the diagnosis as idiopathic event.I have limited my HR in exercise to 135, because I have seen this figure before for people with LVT. I wasn't advised against running or limiting my HR. My ICD is set at 185 to intervene. The pacing function was effectively switched off, it will kick in if HR falls below 33. I have bradycardia with ectopics .
Although I had loved running and following a training plan that had really improved my Parkrun times, I do accept the maxim that it's a run not a race, so I am having to settle for exercise that stays in the aerobic range for the most part. But I enjoyed yesterday's run, today I managed to run without the spike by jeffing.
I spent 6 weeks in the CCU and I came to realise that amongst all the admissions my condition was an outlier. In spite of being the fittest person admitted I was treated with kid gloves because of the concern for another LVT.
I witnessed a man in persistent LVT. It was a deeply traumatic time not least for all the staff as all their interventions were failing over several hours. He was eventually sedated and transferred to ICU before transport to another hospital.
It is interesting how my question has produced two well informed responses on this the biggest heart related forum. Had I asked about statins and running there would be a lot of responses! I think I knew there was unlikely to be a guide. I guess had I been cared for in a big research hospital things may have been different but a down at heels General Hospital with budget problems, I guess my care was about as good as it gets in the circumstances.
Take care both of you and thanks again for your replies
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