IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 10 Aug 2014, 11:30pm

I had another event today.

I went into VT then VF and if it wasn't for the ICD I would not be here.

I collapsed very suddenly without any real warning and hit the deck very hard. I've got four loose front teeth and a proper shiner around the top of my right eye socket.

But at least I'm here to tell the story.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 11 Aug 2014, 1:02pm

Hi Colin,

I saw your post last night just before I went to bed and spent some time thinking of you and how you must be feeling.

I suppose it's a bitter-sweet moment. Frustrated with your heart for misbehaving, the pain from your contact with the floor, dread at the thought of another six month driving ban but grateful for the ICD working as it should and that you're here and able to tell the tale.

It seems like you were out of it when you were shocked? If so, at least you were spared the experience of being shocked while conscious. Nevertheless I really feel for you at this time. Had you been cycling beforehand?

Before I ended up on the transplant list (still waiting) and being fitted with a VAD, the cardiologists were talking about upgrading my ICD to a dual chamber version and/or cardiac ablation. I didn't have either of those procedures done as events overtook them. I wonder if they'll talk about them with you.

Anyway, I hope you're feeling better and that your teeth don't fall out!

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 11 Aug 2014, 3:33pm

Rick,

Good to hear from you.

I've been quite a long way down the treatment road already. I currently have a duel chamber / twin lead lead ICD.

I had an attempted ablation five weeks or so ago, soon after previous ICD shock. They couldn't induce the arrhythmia so therefore couldn't map it and therefore could not ablate. I'm currently supposed to controlled by drug therapies, namely a selective beta blocker whatever selective means. I'm on 2 x 5mg nebivolol.

Yesterday was a close call if it were not for having the ICD I would not be here. I had three beats of VT and then went into VF. On the third beat of VT it landed right in the middle of the re-polarisation phase (or words to that effect, you know what it is like, you hear them say it and immediately forget it!). The timing of the VT meant it went straight to VF.

The ICD prepared to pace me out of the VT within that three beat period but then started charging as soon as I was in VF at 263bpm. It charged its capacitors for 9.3 seconds then shocked me back to life. It didn't mess about, it delivered a full power 41 joule shock. I came round round and felt a lot better straight away, funny that, dead one second, alive the next! Except for the damage to my teeth and head where I went splat on the floor. The whole thing happened in the space of about 10 seconds with me coming round a few seconds after that.

I wasn't doing anything strenuous at all. I was making the family lunch, bacon sarnies. I'd just put the bacon under the grille, went to the loo, washed my hands and was drying them when it happened. I hit the hard tiled floor. I had what felt like about a second of warning them came round.

I have experienced a shock while awake and it doesn't hurt at all, it is so quick you don't have time to even register pain but you certainly know you have had one. For the last two shocks though I have been unconscious.

I have been cycling and walking daily between 3.5 and about 10 miles mainly off road and quite hilly. I only seem to have issues when I am quite still and without exertion. I'm home now and am even thinking of getting out on the bike to clear my mind which it has an amazing ability to do, even a short ride. I probably won't not so soon but will be itching to get out tomorrow no doubt!

I've just read back on your adventures and mine pale into insignificance compared to yours. Mine are quick and sudden episodes whereas you have constant reminders. What a pair we make!

It would be fantastic to catch up at some point when you are better! Alas geography may be against us.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 14 Aug 2014, 5:28pm

Hi Colin,

Have read and re-read your post a number of times and it's made me feel rather uncomfortable... Gosh, 263 bpm - no wonder you got the Full Monty! I think my ICD is set to shock at 188bpm. When I've been shocked whilst conscious I always thought it was painful but perhaps it was more psychological. You think it should hurt even if it doesn't - a bit like having a tooth extracted with a local anaesthetic. Either way though, it is amazing quite how quickly you feel better. That is A Good Thing.

I don't know if you saw yesterday's Daily Telegraph but the front page headline leads with what seems to be a genuinely exciting gene therapy trial for heart failure patients (I can mail you a copy if not). By the sound of it, it may well be applicable for both of us. The first trial patient (of 24) is a guy with a VAD (like me) and since I'm at Papworth next week I will ask for more details and possibly offer my service as another trial patient. That seems sensible, to me anyway, as my wait for a heart could be a long one because of the requirement to match the donor's and recipient's stature.

If the gene therapy is successful it could spell the end for the need for transplants and that gets my vote.

A catch up would be great if practical - I'm near Horsham, West Sussex

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 14 Aug 2014, 11:36pm

Rick,

A link to that article would be great if you could.

Yes, these ICD's are really rather good especially the being dead then getting up soon after part. Plays a bit of havoc with the mind though.

They are talking about putting me on some powerful medication either Amiodarone or Mexilitine to calm the heart down. Both have severe side effects so if they do suggest them it will be a difficult decision as to commence them.

My understanding is these drugs are so powerful and toxic you need to be admitted while taking the loading doses and have to have frequent medical checks thereafter for lung, liver and thyroid function.

With all that to possibly contend with I might consider taking the risk of riding the lightning every month or so and not taking them.

I'll know more tomorrow.

This heart stuff certainly keeps us on out toes!

A catch up may be tricky at the moment. I'm in Maidenhead Berkshire by the way.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 15 Aug 2014, 9:38am

Colin,

Here's a link to the DT article from Tuesday

http://www.telegraph.co.uk/health/healt ... rgery.html

I've not come across Mexilitine before but I've been on Amioderone since 2002. As you say, it's nasty stuff, toxic towards other organs thus requiring regular tests but it is good at maintaining sinus rhythm. It also makes your skin particularly sensitive to sunlight and this is something to watch out for if you're out and about on your bike. I have found it makes my skin go red as if sunburnt - even when not burnt. Suntan lotion needs to be applied regularly.

I was on Amioderone before I had an ICD fitted so didn't have an either/or option but my cardiologist was anxious to reduce the dosage whenever possible.

I've never thought of ICDs facilitating a near-death-experience but I suppose that's the truth of the matter!

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 15 Aug 2014, 11:39am

Thanks for that Rick.

Some poor buggers are on a placebo!

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 4 Oct 2014, 6:00pm

And another 'episode' and some more time in hospital.

Just when you think you are getting over things and establishing a new normal, it strikes you down yet again.

Just spent another few days in hospital. Lots of tests and the conclusion is to increase the dose of the meds.

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 4 Oct 2014, 9:22pm

So sorry to hear that Colin. You must be really cheesed off.

I've just had a couple of weeks in Papworth. Think that was the wife's and medic's over reaction. I'd caught a chill - possibly from a ride in an open cockpit gyrocopter - so high temp, cough and generally feeling woozy. Went to GP, he thought it was an infection so prescribed an antibiotic but told me to check with Papworth; Papworth didn't like that antibiotic so referred me to nearest A&E hospital; they panic when they see me so ended up being ambulanced to Papworth. I do feel I get my monies' worth from the NHS!

When I was there I had a bed by the window and an air ambulance landed in the playing fields next door. Turned out to be the heart and lungs from a motor cyclist who'd come to grief. I'd been hoping it was a heart for me...

I've been invited to join the SERCA2a gene therapy trial that I mentioned earlier. They're only inviting people who are fitted with VADs as presumably we're more protected if anything goes wrong. However, the guinea pigs have to be monitored twice a week. Its a 250 mile round trip per visit so the thought of driving 500 miles a week doesn't exactly fill me with relish.

And there's no knowing whether I'll be one of the suckers on a placebo...

I really hope the increased dosage does the trick for you. Ultimately I have to say that I'm pleased to be living in the 21st century where science provides the where-with-all to fix many of our problems.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 22 Oct 2014, 1:09am

Sorry for not updating for so long.

It looks (touch wood and fingers crossed) that the increase in my medication is actually working. I have not felt as well for a long time.

In the past two weeks as well as going out on my daily 3 to 5 mile rides with the dog, I have managed to do two 27 mile rides. Nothing compared to what a lot routinely do on here but a fair accomplishment for someone like me I'd say.

Rick, I do hope you are well and that the therapy is having some effect.

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[XAP]Bob
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Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby [XAP]Bob » 22 Oct 2014, 9:19am

Colin_P wrote:Sorry for not updating for so long.

It looks (touch wood and fingers crossed) that the increase in my medication is actually working. I have not felt as well for a long time.

In the past two weeks as well as going out on my daily 3 to 5 mile rides with the dog, I have managed to do two 27 mile rides. Nothing compared to what a lot routinely do on here but a fair accomplishment for someone like me I'd say.

Rick, I do hope you are well and that the therapy is having some effect.


Accomplishment indeed...

Sod what others do - it's what you do that counts.
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.

rickangus
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Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 16 Nov 2014, 8:56pm

A couple of weeks ago I picked up a chill and took to my bed. That afternoon I was given three big shocks from the ICD. Boy do I hate those even if they are doing me favour.

I now find myself back in Papworth Hospital. Doctors believe I have an infection, probably lurking around around the ICD or LVAD. I'm on a six week course being given strong antibiotics intravenously every four hours. :cry:

In the morning of the day I was shocked I'd just bought a retro road bike. Ebay. Nice (for me) big 25.5" raleigh super course. The vendor put it on my bike rack when I collected it and my wife put it in the shed for me 'cos I was feeling rotten. I don't think I've even touched it yet! But I can still enjoy it vicariously on the web.

Gives me something to look forward to.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 18 Nov 2014, 2:08pm

Blimey.

Are you to be in hospital for the full six weeks? And three whacks, were they in succession for a single event or was there a bit of time between? Either way, they are not very nice. The shock itself isn't as bad as you read about, well for me it isn't anyway but what is is what it signifies and of course another six months off driving. I'm next due to see the consultant in early December for no doubt a quick 30 second chat!

I'm currently three months out from my last shock and apart from the wobble at the beginning of October seem to be doing quite well. I got the flue jab for the first time last week and I'm sure it has knocked me out of kilter a little bit. I have been doing between 50 and 60 miles a week since mid October but this week I think I'm going to back off a bit due to feeling a bit off. Ordinarily in the past I would have taken no notice but now with the ICD and what goes with it, I'm listening to my body and will not go mad this week. I blame the flu jab of course!
Last edited by Colin_P on 17 Mar 2015, 1:12am, edited 1 time in total.

Colin_P
Posts: 144
Joined: 19 Aug 2013, 2:21am

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby Colin_P » 17 Mar 2015, 1:10am

Just checking into this thread and obviously to ask;

Rick, how are you ?

I seem to be going through a fairly quiet period so it appears the drugs are doing their job. I'm still out there on the bike but not really doing too much but most importantly am out there!

If anyone who reads this and has heart trouble, any heart trouble, I've started a group on Strava for us heart people. Please feel free to join, you are more than welcome. There are currently only seven of us but some of the rides the others do are quite inspiring.

Link below

https://app.strava.com/clubs/uk-cardiac ... -survivors

rickangus
Posts: 230
Joined: 13 Jan 2007, 10:17pm

Re: IMPLANTED CARDIOVERTER DEFIBRILLATORS.

Postby rickangus » 20 Mar 2015, 12:01pm

Hi Colin,

Thanks for that - good to see the forum is still running!

An lot has happened since my last post - I've only just got home from Papworth after spending the best part part of four months in there. I need to gather my thoughts and recollect experiences before responding in more detail.

Watch this space as they say!