Looking for tips and experience of re... - British Heart Fou...

British Heart Foundation

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Looking for tips and experience of regaining fitness after an ICD implant for LVT.

Chinkoflight profile image
21 Replies

Hi , I am finally in full recovery mode after my recent problems with a collapse and left ventricular tachycardia diagnosis. The second ICD implant and lead revision seems to be healing well and it will be coming up to 4 weeks in a couple of days. I have been increasing my walking, including hills, over that time, without problems. Although my event occurred whilst running, I would like to get back to running although I am a tad apprehensive. I would hope to start with C25K.

Uncertainties are around the bounce effect on the box which is quite weighty; expected HR peaks ;I'm on bisoprolol low dose 1.25mg; duration and intensity etc. If I can get back to my slow running Parkrun I will be happy. Does the gym and treadmill/bike have any place?

I think this is quite a niche question but I'd love to hear experience. It doesn't just have to be the go for it response. If there are reasons to be cautious I'd like to be aware as I have no idea what to expect!

#chinkoflight

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21 Replies
Rosie1066 profile image
Rosie1066

Were you offered Cardiac Rehab? Not all health authorities offer a 10 week course so it’s just a post code lottery. I had a pacemaker fitted last year and I was offered Cardiac Rehab which was great and gets back your confidence. I’m still doing it privately.

Chinkoflight profile image
Chinkoflight in reply toRosie1066

Hi Rosie, thanks for the reply. No I wasn't offered any rehab. In the scheme of things I guess I'm relatively fit not having any co morbidities like COPD , diabetes etc. I'm not aware of anyone being offered support post procedure. The service is exceptionally stressed so I'm not surprised. I still have my 6 week check to come so I will ask then. I was discharged with " can't do, don't do..." as opposed to can do!

Identiy profile image
Identiy in reply toChinkoflight

Check with your doctor in 2/52 but would have thought with a defib implanted, you could do what you wanted to do without any problem as if you go into VT, the defib will put your rhythm back to normal.

An elderly friend of mine - 76 years old - has a defib due to his VT from cardiac amyloidosis and he trains regularly, and hard, in the gym on most days

Chinkoflight profile image
Chinkoflight in reply toIdentiy

Hi, and thanks for the helpful reply. Certainly I want to get back to exercise but I don't want to unwittingly worsen my condition. Unlike your friend I don't have a diagnostic cause only the physical assessment of the cause/consequence, a MI scar. Although the specialist hospital where I had my cardiac MRI and PETscan made follow up investigative suggestions my general hospital isn't resourced to do this work. It doesn't in their view impact on the treatment outcome to fit an ICD which is what they have done. It's frustrating because my cardiovascular health is good with the rather fundamental exception of the LVT!

Lezzers profile image
Lezzers

You need to ask your medical team about exercise as each person is different. My husband has an ICD, he had a run of VT's last year and his ICD has now been adjusted to treat him aggressively. He's now had an ablation which seems to have been successful but his medical team don't want his HR to go above 128 as his ICD will then kick in. If/when his HR goes to 115 his monitor will automatically advise the pacing clinic.

EmmJayTea profile image
EmmJayTea

It's great to hear that you are making a good recovery and becoming more active. I really do hope this positive trajectory continues for you. 😃

The type and intensity of exercise recommended varies from person to person, their history of ventricular arrhythmia and any underlying disease. It's quite a complex (and strangely fascinating) subject, which I've delved into a lot. For several types of cardiomyopathy, by way of example, some exertional exercise is really beneficial. For others, it is not recommended as it could lead to further weakening/damage of the heart muscle.

If you have the time and the motivation, then I would recommend: 2020 ESC Guidelines on sports cardiology and exercise in patients with cardiovascular disease: The Task Force on sports cardiology and exercise in patients with cardiovascular disease of the European Society of Cardiology: doi.org/10.1093/eurheartj/e...

Like the title, it's extremely long, but it covers all manner of CVD and I've found it to be really helpful. (Be warned: This may not be an easy read for all; I have a science background and don't mind reading long papers.)

I'm in my 40s, so I wouldn't be able to offer you the same perspective. I would absolutely love to be able to run again, but I know that due to my history of sustained VT, existing tissue scarring/fibrosis and arrhythmogenic cardiomyopathy, I'd be putting myself at risk of further damage leading to reduced function. Now, that's my own particular case, of course. Some athletes with the same type of cardiomyopathy (but a different history) may continue to exercise competitively. It's all down to the various combined risk factors.

Have you had official exercise guidance from your consultant/clinic? Do you have any known underlying condition that has caused your VTs?

Assuming all is good for you to exercise, a key question to be clear on is what your ICD is set to before it "thinks" it has detected a tachy episode - this is crucial for avoiding inappropriate shocks. Your pacing clinic will be able to tell you this information. Mine is set to 180 bpm, so if I were able to run, then I'd be wanting to jog and stay below 150 (allowing for some headroom). But I go back to my first point above - is there any underlying condition which may dictate the overarching level of recommended activity?

Good luck and keep us posted on your progress!

Chinkoflight profile image
Chinkoflight in reply toEmmJayTea

Hi , thank you for your reply. It is so helpful and is spot on. You have helped me identify a clear focus for decision making going forward. I do have a scar on my LV together with wall thinning and 'ballooning'. This certainly explains my one VT episode and the ongoing risk. You're right, I realise my greatest concern going forward is to not make it worse by my actions resulting in reduced capacity. My ICD is currently set at 180 and pacing is set at 33. There is no explanation but an ischaemic event was ruled out, as has an active Sarcoidosis. My hospital is a general hospital so isn't able (or willing) to resource any further investigation as indicated in the cardiac MRI and PETscan done in Oxford. As I also had a 'cryptogenic' stroke followed by this 'idiopathic' LVT the suggestion to follow up an embolic cause as well as non-ischaemic causes within the heart might be the explanation. I think stress linked the two events. The heart and blood are a fiendishly complex organs, the links with chemical and hormonal systems is still being understood.What I have found are some unusual heart rhythm patterns for me when I set off for exercise. This can even be a 'relaxed' stroll. When my heart rate climbs to a relatively high level. So a gentle 30 minute walk started almost immediately with a climb to 130+ bpm for around 10 minutes and I'm aware of feeling slightly breathless. Then without explanation, and it's striking like a cliff edge, it will immediately fall off to 70bpm and then settle there. Thereafter everything is okay. I've pointed this out previously but have only had a shrugged response. I can't predict when this will happen.

Thanks for the reference. I am science trained too so will read it carefully. I'm fairly sure I will at the end of the day have to set my own risk assessment. Having taken up running following my stroke at the age of 70 I found it liberating and unbelievably beneficial. I'm sure my improved cardiovascular fitness helped my recovery post the LVT event (though it may have been exercise triggered).

Best wishes for your journey .

#chinkoflight arrived with your reply, thank you again.

Gymlover1979 profile image
Gymlover1979 in reply toEmmJayTea

Thank you for sharing this link to the paper. I haven’t been given any guidance about when I can restart exercise so this will be a great read, before I can ask at a follow up appointment. I’m really missing it but also very nervous!

EmmJayTea profile image
EmmJayTea in reply toGymlover1979

A pleasure! Hope you find it useful.

I'm still finding it tough adapting adapting to no gym/running. My case is relatively uncommon, so most of the general info/advice out there about exercising doesn't apply and can leave me feeling a bit pants. My consultant very kindly shared a few journal papers to help me understand the condition in the context of my history. She also shared the taskforce paper above, which has helped me to rationalise things.

I know others who ignore the advice or bury their head in the sand. I even met one person with the same condition who said his ICD keeps shocking him whenever he goes to the gym for a hard workout. 🤷

Good luck with your own journey!

Chinkoflight profile image
Chinkoflight in reply toEmmJayTea

Hi again, I have taken my time to read and digest this paper. Thank you very much for bringing this to my attention. It has helped me better understand some aspects of my Cardiac MRI and PETscan diagnostics. I now realise more than ever how many negative boxes my scans and data tick! In some respects it's not good news but explains why the Doctors kept me in the CCU bay throughout my long stay in the Cardiology unit and their nervousness about me unplugging myself to occasionally walkabout! It's fairly clear to me that I have to reluctantly accept limiting myself to mainly low level exercise albeit endurance long walks may be acceptable. I'm fairly sure from this I should have a follow up exercise stress test to properly inform my acceptable HR limits.The image that comes back to mind is the consultant waving the VT ECG trace taken from my Implanted loop recorder that I had the presence of mind to press my portable event recorder about 15 minutes after re gaining consciousness. I realise now that his smiling glee was holding definitive evidence of a syncope event to the second, or 23 seconds as he exclaimed in my case.

I think, (with other concerning data from my smartwatch, and the absolute reluctance by the hospital to release ILR data before the event where I had recorded possible events which weren't followed up) it's fairly conclusive the event was exercise induced and not coincidental to me at Parkrun.

I really do hope you manage to plot your way forward. I thank you again for your very helpful reply and I feel I can start to plot my way forward and hopefully get back in to a more positive mindset.

EmmJayTea profile image
EmmJayTea in reply toChinkoflight

I'm so glad you found it a helpful read, if a little sobering. Yes, it does take a lot to get used to, but having some rational evidence on which to base lifestyle changes is, for the most part, I think helpful. Otherwise, one is constantly left wondering "what if?" or wondering how far to push oneself.

This is a challenging journey for each of us. Like most people here, I have good and not so good days. This week has been a bit wobbly and unstable, with uncomfortable runs of bigeminy and dizzy spells. Prior to that, I'd hardly had any symptoms for the previous 3 weeks. But as each week passes, I am finding it easier to accept that "this is how it is".

Sharing our own tid bits of learning can offer reassurance, insightful advice for others and maybe even a bit of hope in there too. Thank you for your replies - I enjoy reading your posts and replies.

Henri33 profile image
Henri33

The only comment I can make is to watch your blood pressure which the bisoprolol can lower .Sometimes I can get it to around 90/67

Chinkoflight profile image
Chinkoflight in reply toHenri33

Hi, Thank you for your reply. That's not uncommon for me. I'm on a low dose ,1.25mg, because of the bradycardia. Early on in hospital I experienced some hypotension on the new meds and before the ICD implant but this seems to have gone now and I can't attribute any side effects to the drug. There was a suggestion of upping the dose over time but I've resisted this, although my smartwatch has shown a couple of high HR under modest walking pace. What you have reminded me is to still keep taking occasional readings.

Rabbit55 profile image
Rabbit55

Hello. It sounds like you are exercising far too much. I used to over do things, exercising and weight training, and now have been told to stop my training.

Chinkoflight profile image
Chinkoflight in reply toRabbit55

Hi, thanks for the reply. I was in hospital for 6 weeks, hooked up to a monitor so lost a lot of fitness which felt awful. I have gradually built up my walking since March, although this was limited for 6 weeks because of the impact of the ICD lead failure. I have been building up this month but my average steps count is only a tad over 8000. I have done a couple of 14km walks with some elevation but at a fairly modest pace. Most of the time I'm completely okay, just occasionally I experience a not so easy effort with no obvious reason. I had this experience before my LVT collapse. I logged all these events and used the report feature on an implanted loop recorder and drew the attention of the pacing team to these events but had no precautionary feedback or indication of any Afib or VT events.I feel like EmmJay Tee above as clearly I am at very high risk of an SCA. I think I'm not at risk from walking, so if I can't start running again then I would like to build up fitness to undertake some long distance walks which I think would be good for my self esteem and soul.

If I can run it will only be slowly. I am 72 and have managed a Parkrun PB of just over 35minutes which is around 49% of my age grading!! So slow! But in Parkrun it's a run not a race and a few of us run at that pace and it's a wonderful thing to do.

Chinkoflight profile image
Chinkoflight in reply toRabbit55

Hi, I have finished reading the link recommended by EmmJayTea above. Since my syncope I have only been walking, but I have also included modest hill walking too which might need to reconsider. I had walked 10km generally twice a week plus shorter walks daily. Certainly although I was considering starting to jog again, I'll not do this pro tem and until I get some proper and considered feedback or further exercise testing from the medics. The guidance suggests that endurance through longer walks may be the safe way to go. It is clear that exercise of some sort remains important for extending and improving life years albeit with SCA and SCD risks. The importance of rest days is probably more important too and certainly before my syncope I had been increasing my exercise to 5 days a week , probably around 250 minutes average/PW. I didn't do gym work but did do warm up, warm down stretches.It's finding a balance I guess . What is clear from the research above is that triggering exercise related shocks from the ICD is to be avoided. In this respect the ICD can't be considered as a comfort blanket.

PinkKizzie profile image
PinkKizzie

Hi Chinkoflight, just wanted to say it's great you are in full recovery mode and the ICD implant is healing well. Take it easy and keep well. 🫂

Chinkoflight profile image
Chinkoflight in reply toPinkKizzie

Hi, thank you so much. 😍

ringdangdo profile image
ringdangdo

I was having tachycardia. Started on biso 2.5. I.get constant palps if I don't get my heart rate up with exercise. All very weird.

Chinkoflight profile image
Chinkoflight in reply toringdangdo

Hi, thanks for the reply. Some times when I start even gentle exercise my HR jumps to 130 and stays there, then without explanation it's like " okay, I get it, you're going to carry on with this walk, fair do's I'll drop back to a normal 70-80" 🤣

Chinkoflight profile image
Chinkoflight in reply toringdangdo

Hi again. I have just finished The Exercise Review Guidance paper recommended by EmmJayTea above. It is an excellent read and has helped me enormously understand some stuff not explained by the cardiologists. There was a reference to exercise reducing PVC's but also circumstances where you should limit exercise too if experiencing PVC's. It explains this in relation to the type and origin of PVC's.

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