IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Colin_P
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 Nov 2013, 12:02am

A bit of feedback from me as well.

I'm now 3 months post ICD install. I'm almost 43 years old now.

I've been cycling quite a bit including occasional commutes through central London. If anything will fray your nerves, cycling in London will but hasn't.

I'm not a extreme a cyclist as a lot of you with the longest ride I've done being a touch over 20 miles (but done on a 30 year old classic 10 speed racer).

I've also dared to do a bit of welding as well without incident.

Time is a good healer and the psychological side of having an ICD does ease in time.

I'm also glad to read that this thread and the information contained therein has been of use to people. I know when I was searching for information soon after having my ICD, this thread alone was the only source of information I could find with real world information. Many thanks to TPractice for starting it off

Colin_P
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 14 Jul 2014, 2:12pm

Well it has been almost a year since I got my ICD and what an interesting year it has been.

The ICD has saved my life twice, where I literally would have dropped dead if I hadn't had it. The latest episode was only about three weeks ago.

I've undergone quite a few tests in the year one of which was an exercise tolerance test. This was to establish safe limits for me to exercise too. The result for me was no restrictions at all, I easily reached (and slightly exceeded) my maximum theoretical maximum heart rate, which if anyone is interested is calculated as follows;

220 minus you age.

Which for me is 177 beats per minute.

I'm in a bit of a funny place as I'm quite fit with no exercise restrictions yet my heart periodically tries to kill me every now and then. It is sometimes difficult to get up out of the chair and get on the bike. But I do. I don't go mad and limit myself to a daily off road ride of about five miles with my beloved dog running along side. I say quite fit but not anyway near the fitness of a lot of you on here but given my propensity to suddenly keel over without warning, I think I do quite well.

Interestingly though, when I do have an episode and for the three to date that I have suffered, they have all been whilst I've been sitting or lay down almost totally relaxed. When I'm moving I always feel fine. I liken it to existing like a shark, where a shark if it ever stops moving sinks to the bottom and dies.

I did get my driving licence back for four months but it is gone again now as a result of the latest episode but I really don't want to take the risk anymore. This itself presents issues with work and family life but at least I am not going to hurt anyone if I had an episode at the wheel.

Life is interesting at the moment!

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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Vorpal » 14 Jul 2014, 3:54pm

I'm glad to read your updates. It is inspiring to read about someone who continues to cycle in the face of such difficulties. :D
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[XAP]Bob
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby [XAP]Bob » 14 Jul 2014, 8:50pm

220-age...
Not sure that works for all age ranges - partly because I used to hold 210-220 bpm for significant time frames in my late teens (serious training)
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.

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NATURAL ANKLING
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby NATURAL ANKLING » 14 Jul 2014, 10:34pm

Hi,
[XAP]Bob wrote:220-age...
Not sure that works for all age ranges - partly because I used to hold 210-220 bpm for significant time frames in my late teens (serious training)

Thats cyclist excluded, these quotes normally include that individuals will see higher with no ill effect.

Basicly your heart rate will top out and go no further, unless you have some condition.
Colin_P's condition sounds a bit like he has been unfairly caged but can still get a pass now and again.
When you are recovering from serious health issues a noticable step forward seems to bring about euphoria which can be stimulating and pleasurable, but to an outsider might seem a bit lame.
Good luck.
Priority Is Still 500K In 24......Just Dreaming..............Stay Focused Guys And Keep Sharp.....
You'll Find Me At The Top Of a Hill...............Somewhere

Colin_P
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 Jul 2014, 12:52am

The 220- thing is a general rule, there will always be exceptions. As Ankling has said, it is however a safe upper limit to work to as I understand it.

The beta blockers I'm on play more havoc on what you can and cannot do as they limit the force with which your heart beats and thus reduce the volume of blood per beat pumped. I'm still doing the same hills I was before I was on the betas, which has only been since the new year. I think I'm doing all right in consideration.

I am out there every day though. :wink:

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NATURAL ANKLING
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby NATURAL ANKLING » 15 Jul 2014, 10:47am

Hi,
Talking from experience of Beta Blockers, these actually led to me giving up cycling on the road (outside the house) for ten years.
If there is a safe way to get off them try, with medical advise of course.
Normally you would be on several different meds for hypertension :?:
I realise your case is somewhat more complex.
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[XAP]Bob
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby [XAP]Bob » 15 Jul 2014, 10:51am

No way I'd get to that kind of HR now - I'm somewhat older, and 220-age is much more realistic as a cyclist in my 30s than it was as a swimmer in my teens. Then again I had "unhealthy" levels of body fat at the time (4% IIRC, yes I was a sinking swimmer...).

Serious health conditions have been my way of life since I was 10, although symptoms are sufficiently well managed that it is rarely apparent.
A shortcut has to be a challenge, otherwise it would just be the way. No situation is so dire that panic cannot make it worse.
There are two kinds of people in this world: those can extrapolate from incomplete data.

Colin_P
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 Jul 2014, 11:11am

I'm on the beta blockers only to control the arrhythmias that suddenly strike me down. All of my heart issues are electrical, the plumbing is fine.

My blood pressure without the betas is low/normal with a resting heart rate in the high 50's. With the betas my blood pressure can get quite low and my resting heart rate now can get down to the high 40's. My heart rate still seems to get up there but the force with which my heart beats due to the betas isn't what it once was and that makes exercise a bit slower than it once was. I don't have a heart rate monitor as that would be something else to obsess on, I have enough to worry about as it is!

I'm only 43 and sometimes find the whole situation I find myself in quite difficult to deal with and as I've stated in earlier posts, there are no rules. It can sometimes be quite difficult to write your own. I just hope that my inane ramblings help someone else who is looking to establish a new normal as well.

rickangus
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 15 Jul 2014, 9:48pm

Hi Chaps,

It's been a while since I last posted here but having read the recent correspondence, thought my experience may be of interest to others here.

To recap; I was fitted with an ICD in June 2009. At the time it was a major issue for me and I understand the fears/frustrations that others here have admitted having. In due course I was 'shocked' four times and found the experiences to be thoroughly unpleasant. Indeed, I became quite apprehensive of receiving further shocks and whenever my heart rate rose I became very anxious.

At the beginning of 2013 my heart failed catastrophically and I was blue lighted to Papworth Hospital. Once there I was quickly placed at the top of the urgent transplant list. However, apart from the numerous clinical issues, a practical problem facing transplant operations is that a donor heart has to come from a person of similar height/stature to the recipient. I am 6' 5" and there are fewer 'tall' donors around.

No suitable heart was were forthcoming and I continued to deteriorate. After losing consciousness a decision was made to fit me with a 'ventricular assist device' (VAD) - namely an electrical heart pump. This required open heart surgery - the aorta is cut and the two loose ends fitted to the pump which runs continuously. I have wires exiting my abdomen running to a battery pack on my waist that requires changing every three hours. Because the heart is virtually non functioning there is no systolic/diastolic differential so I no longer have a pulse and my blood pressure cannot be measured - at least with conventional means. That operation was on 4th July last 2013.

I am about the 100th person in the UK to receive such a device although many have since gone on to receive transplants. By definition, in the UK a VAD patient' is on the transplant list, and so am I.

Without wishing demean in any way the concerns of those who have had ICDs fitted (mine is still fitted) - and I was as 'put out' as others - all of a sudden having an ICD isn't such a big issue.

I am cycling a little bit but I'm a bit like one of those Duracell bang drumming rabbits. As long as I have fresh batteries with me I can ride 10 or so miles!

Meantime, and with no warning, I await a phone call from Papworth...

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Tigger
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Tigger » 15 Jul 2014, 10:38pm

Good grief Rick :shock: words fail me! But it puts everything into perspective, that's for sure. Best Wishes to you in every way possible.

All credit to you for getting out on the bike still.

Oh, and I had no idea that donor hearts were also 'stature' matched, that was interesting.

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NATURAL ANKLING
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby NATURAL ANKLING » 15 Jul 2014, 10:46pm

Hi,
What about recharging your batts on the bike with a dynamo :)
Yes should we ever complain again...............
Priority Is Still 500K In 24......Just Dreaming..............Stay Focused Guys And Keep Sharp.....
You'll Find Me At The Top Of a Hill...............Somewhere

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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Vorpal » 15 Jul 2014, 10:50pm

Wow, Rick. I hope you get your transplant soon & it allows you resume something like normalcy.

And thanks for sharing your story.
“In some ways, it is easier to be a dissident, for then one is without responsibility.”
― Nelson Mandela, Long Walk to Freedom

Colin_P
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 Jul 2014, 11:40pm

That certainly does put things into perspective with my problems paling into insignificance by comparison.

Rick, you are a double hard ******** for getting on the bike. You have my total and utter respect.

rickangus
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 17 Jul 2014, 10:51pm

Well, thank you all very much for your encouragement and best wishes! I was very touched - as was my wife when I showed her the posts!

And chuffed to bits to be called a hard ------- :D

I have to say though that if you've got an ICD fitted and you get a big bang then the practicalities of losing your driving licence for six months are far reaching. I know the inconvenience it is for Colin-P and you have my sympathy. Ironically my job involved a lot of driving and and, but for the fact that I've been put on long term sick leave, I would have been made redundant.

I went for a ride with my wife and friends yesterday, about 13 miles all in but with lunch stop half way. That was more that I could really do and ended up walking up inclines that I'd barely have changed gear for before my troubles and I'm still recovering now. But I suppose everything is relative really. Other folk would have to ride a 100 miles to feel just as knackered!

I do like the idea of a dynamo though. Being bit of a luddite I'm a firm believer in dynamos even if they are painfully uncool. Reminds me of those stupid arguments we had in school physics lessons about perpetual motion...