IMPLANTED CARDIOVERTER DEFIBRILLATORS.

[michael42]

Michael42. With respect(and on reading your text),I think you're wrong. The more info you have,the better you're informed. You just can't get enough information.

There is such a thing as wrong information. Wrong information doesn't make you more informed.

No one person,no one hospital,no one specialist has the one true answer.

So you're basically saying Doctors aren't always right and don't have all the answers.

This is true, but do you know what the accuracy rate for non-medically qualified medical opinions is?

[michael42]

Colin_P is looking for others who have an ICD. He's not asking fellow cyclists for medical advice. The OP was a couple of years ago.

Please take the trouble to read my posts before replying to them. Thanks.

(and before you tell me you did, I mention the fact that the earlier part of the thread is old in it)

[Colin_P]

No doctor, unless they to have one of these devices fitted can provide answers to the question of what is it like to live with one of these things.

I've searched and searched for more information about what it is actually like living with ones of these things at my age in my circumstances, to no avail. Most people are a fair bit older and have other heart issues rather than just arrhythmia as I do.

Hats off to this forum and in particular Riverside for starting this thread, Rickangus, Tpractice and everyone else.

My cap is humbly 'doffed'.

I'll continue to update on my progress as and when and would encourage anyone who stumbles on this thread with an ICD to chip and or ask questions.

My current progress is;

Although healing physically, I'm feeling really low about the whole experience and the future. Which I'm told is quite normal!

[michael42]

No doctor, unless they to have one of these devices fitted can provide answers to the question of what is it like to live with one of these things.

I've searched and searched for more information about what it is actually like living with ones of these things at my age in my circumstances, to no avail. Most people are a fair bit older and have other heart issues rather than just arrhythmia as I do.

Well look at it this way, from your other posts it's clear you want to cycle.
So you want to hear from other people that it's ok to cycle, I presume?

This is really what you will do with "more information" - you'll just look for stuff that tells you what you want to hear.

This is what we all do with "more information" we use it to reinforce our opinions and ignore
the stuff that says what we don't want to hear.

As such I find it difficult to believe you cannot find good medical opinion about the level of exercise and so on you may be capable of given the device inside you
and it's rather disingenuous to suggest that a qualified medical professional who has put ICDs in myriad patients for years cannot give you advice
because he doesn't have the device himself.

I can believe you don't like the advice you were given. Which is why you're in the pub and on the bike now telling us that you're
going against the advice you were given. In your own words "Self destructive behavior level = idiot"

That's exactly what I would do. I would go out on the bike with my HRM as I do now and I'd take it easy at first
and I'd judge entirely on how I felt and how that feeling matched my previous experiences when cycling and then
I'd take it from there.

But, if I got half way down my road and dropped dead, I wouldn't post anywhere afterwards saying "Sheesh guys, don't cycle!", would I?

Good luck to you (not the least because if you use google to find medical advice you'll need it)

[DavidT]

I'd like to address Michael42s comments, although I hope I have interpreted your points correctly. Apologies in advance if not. You seem to be suggesting that one should only listen to medical practitioners and avoid a possible trap of listening to anecdotes that only reinforce what you want to hear, whilst ignoring the negative stuff?

I have a complex cardiac condition and have undergone several treatments, not least of which involved the implant of a pacemaker. My Doctors and pacing technicians know a lot about the subject and have been very supportive amongst some very sober conversations over the years. Treatment has been wonderful. Thank you NHS. However I've yet to meet a medical practitioner who has had one, let alone all of the conditions I have been treated for (to my knowledge that is). When I tell them how much I cycle, they are delighted, but find me at odds with what the textbook suggests. So they don't know everything. More to the point they surely can't know everything?

It can therefore be reassuring for patients to speak to other patients in the same or similar situation and with similar interests (cycling in this case) to find out what their experiences are. I don't think people should be too openly challenged for having that approach. As a patient, I don't necessarily see anything wrong with searching out the information that "you want to hear". It can help you get through things.

Best wishes, and happy cycling.

[Colin_P]

Fantastic response David.

There is so little information about these things other than the 'textbooks'.

These devices are American made and so are the textbooks. Because of the nature of what these devices have to do, the textbooks are written in a very conservative manner regarding cautions and no doubt wanting to keep the manufacturers out of court.

As these devices are so cutting edge and due to a seeming lack of feedback and knowledge on the post surgery and recovery side, the doctors here in the UK it would seem simply recite the textbooks.

In my case, the fitment of this device is as a backup. I have no underlying plumbing issues and my heart health plumbing wise is excellent. I just have the occasional dodgy electrical issue. Knowing this I'm prepared to push the envelope just a little beyond what is suggested in the textbooks.

The whole recovery so far has been an up and down process and mainly psychological. It is still early days as I'm only 2 weeks post surgery but the warts and all stuff I'm posting is exactly the kind of stuff I'd want to read if I was looking for an answer of what it is like living with one of these things.

Some people will of course stick to the textbooks and not get out of the chair, which is fine.

Me, i'll always read the book but will always get out of the chair, which is also fine.

[tpractice]

I have been living with my ICD for almost 2 years now and since my previous post in December 2011 when I was looking for heart rate monitors I have had a completely trouble free life with good results on my 6 monthly check-ups. I fully understand the anxiety faced by those with implanted devices who wonder what they can do and can't do. Mainly loved ones worry more. I have cycled almost on a daily basis since my previous post and even completed a charity ride from Glasgow to Edinburgh last year on a dahon folding bike with no problems and coped on the hills encountered with no difficulties. Prior to that ride I completed a 12 week cardio rehab program with physios here in Glasgow and realised that I could push myself physically with no adverse side effects. I did find that my polar hr monitor is sometimes affected by my ICD and not the other way around. I'm now planning a european cycle tour over 28 days returning to GB via eurovelo 15 route. Now I am looking at a GPS computer such as Garmin but without the heart rate monitor function as it might be like my polar and be erratic. Does anyone recommend a good GPS with mapping but without the hr function. Any comments appreciated. Many thanks.

[Colin_P]

Great post Mr T and good positive feedback.

The polar HR device, is it one your using with a chest band sensor or is it one of the ones you have to touch as I'm quite interested in what my max HR gets to.

Another bit of feedback from me 2 weeks and 1 day post surgery; just got back from quite a vigorous (hilly) 7 mile off road trip. I feel great.

Sat back in the chair now though

Think I'd like a road bike....

[LollyKat]

Now I am looking at a GPS computer such as Garmin but without the heart rate monitor function as it might be like my polar and be erratic. Does anyone recommend a good GPS with mapping but without the hr function.

Etrex 20, with free maps from OpenStreetMap and/or VeloMap. There is a bit of a learning curve but lots of help available on the web. Aukadia is a good place to start.

Glad your ICD has been so successful.

[tpractice]

Nice to hear from you Colin
Great news of your hilly ride. 2 weeks and one day after my op I was not up to exerting myself. Tried walking but before I had walked 100 yards on the flat I felt light headed, panicked and returned home. Through time and with the right support my fitness and confidence grew and now I feel I can do practically anything. I have learned through meeting others with ICDs that we are all affected differently so there is not a "one size fits all" cure. I am now totally unaware that I have an ICD except when I'm having a shower.
As for the polar HR monitor mine is one on a strap which goes round my chest. The polar instructions do warn that implantable devices may affect the monitors readings. Some of the time I was getting max hr readings of 196 and higher but I felt great and my ICD didn't "fire" and no bleeps from the polar. when interrogated at my check ups there was no record of my hr being so high as to trigger my device and that my ICD was working properly. The physiologist told me that she had never heard of hr monitors affecting ICDs. Another reading I used to get was "no signal" on the wrist monitor. I eventually noticed that if the wrist monitor ever came near to my heart/ICD it would bleep and give a strange reading. Advice? Keep the wrist monitor away from the chest sensor and ICD, reboot HR monitor and check polar batteries.
Keep healthy.
David

[TonyR]

2 weeks and one day after my op I was not up to exerting myself. Tried walking but before I had walked 100 yards on the flat I felt light headed, panicked and returned home.

People tend not to realise just how much surgery takes it out of you and the time needed before the body can stop focussing on putting itself back together and start to think about getting back to fitness. Everyone is different and the best advice is to listen to what your body is telling you about its readiness to exercise.

[richie012345]

Hi all

I was looking on the net for someone similar to myself who has had an ICD fitted.

I am a 49 yo male who has always kept himself in good shape (slim build and a non-smoker) and played football, badminton and regularly cycled (a mountain bike).

My story. I had a brief history of ventricular tachycardia (3 years), which suddenly started to affect me whilst cycling and playing 5 a-side football. On June 17th 2013 I had a cardiac arrest after resting (lying down) after a VT episode.

It was 12 minutes before the paramedic arrived, but luckily I was attended to by a couple of security guards - one who knew CPR - and was eventually given at least 3 defibrillator shocks before my heart began to beat again.

After 2 days spent in Critical Care in hospital - where it was 50/50 whether I'd survive or not - I started to show signs of recovery and after a couple of weeks underwent an ablation procedure and had a ICD fitted on July 3rd.

I started cycling again about 2 weeks after my operation. To begin with I'd do maybe 5-6 miles and now I regularly do 12-15 miles.

I started back at football 3 weeks ago and play a full hour's 5 a-side - with lads many half my age!

I have felt physically tired after the footy, which is normal considering what I've been through (and my age too ), but have had no problems with the cycling.

I too have been/am still in a mini-depression regarding having the ICD fitted and the reasons for it, but it's getting better each day.

So far I have had no shocks, but have had a lot of chest pains and aches, and days where I feel a bit sickly.

I am set to see my consultant this Friday for a thorough check up so will update my posts here and let you know what he thinks about my football and cycling - I'd hate to stop doing either!

Feel free to reply or PM me if needed.

[tpractice]

Hi
I read your post with interest as I too have an ICD fitted. At 49 you're just a boy compared to me. I am 66 and cycle almost every day. My ICD was fitted in November 2011. Like you I've kept fit all of my life and survived a few heart attacks and a stroke and had bypass surgery 22 years ago.
My ICD fired appropriately 4 days after being fitted but I've had no episodes since and when I get my regular check ups it's been encouraging to be told that there has been no activity since November 2011. I have my driving licence back but decided against buying a car so now I cycle daily. I have a dahon folder which I have used often and have cycled from Glasgow to Edinburgh with no problems and on the hills I left younger riders behind. The gearing on the bike and years of experience helped. I have 2 kalkhoff ebikes. One I use in the city for shopping and the other for touring. It's hilly here and can get pretty windy but having an ebike makes cycling in such conditions pleasurable.
My cardiologist is pleased that I still cycle and am fit. He only wants to see me once a year now. I know cycling, like swimming alone is not encouraged if you read the leaflets available, but knowing how it feels to be shocked I am confident that I will have time to get off the bike and sit down.
My cardiologist advised me not to raise my left arm for 6 weeks until the wires embedded into the heart tissues so I had to give up my tango dancing for that period. He was very strict about not raising my arm and avoid contact sports and falls.
I consider myself to be a heart failure veteran so I know all experiences of recovery vary from person to person so would never presume to give you advice. You don't say if you are on a cardio rehab program through the NHS. I gained so much more self confidence after completing the 12 weeks here in glasgow.
If you have any questions before you see your cardiologist I am happy to offer help if I can.
Regards
David

[andyhtrc]

Hi Chaps

I'm 39 years old, a club cyclist ( only a mere 4th cat ) and dabble in a bit of time trialing, I've had pacemakers fitted since i was 9 years old. Back in Apirl this year i had a cardiac arrest whilst asleep at home. I woke up in hospital a week later not knowing what had happened. After a few test and a few visits to theater and a couple of hospital transfers i had my icd fitted. In total about 4 weeks in hospital.

It took a while to get my fitness back starting off with a one mile walk with my mum and building up from there. I've had my dark moments feeling scared, emotional and angry but with my wife, family and friends i'm getting on top of it.

I started of my cycling slowly and steadily built it up. I did a 70 mile ride with my club yesterday, longest ride so far since my arrest. It was hard towards the end but my club mates stayed with me and gave me a push up the last couple of hills to the pub ( Great Club mates ).

I intend to return to Racing next season as long as things keep going in the right direction. A few weeks ago i did a couple of laps in our evening road race league i got dropped early on but it was that feeling of being back doing what i did before that feeling of normality back in my life, it was the lift i needed and something to build on and move forward.

I think because i've had a few pacemakers fitted over the years i don't notice the icd as much and just get on with it, It is in the back of my mind thinking will it go off, but like my cardiology nurse said there are too many things in every day life that can kill you so try not to worry about it. Kind of makes sense.

I'll keep you posted with my progress and hopefully it may help you with yours.

Keep Smiling
Andy.

[richie012345]

Hi guys

I saw my consultant last Friday and he was impressed with my recovery.

He told me to keep on playing football, but make sure to wear a pad over the ICD in case of damage, and to keep cycling too BUT, as I do a lot of off-road biking (nothing too extreme) he warned me against riding for a long time on any uneven surfaces as this can lead to problems like the leads moving out of position (regardless of any suspension the bike has) - but again, this very rarily happens.

So keeping fit is encouraged as long as you're sensible about things.

I have a few more tests to endure but that's only because they can't figure out what caused the CA in the first place. It's a small sacrifice compared to the other outcome

So keep on riding lads - the fresh air and exercise WON'T kill you

Richie