Is it a choice? Pacemaker v Implanted... - Atrial Fibrillati...

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Is it a choice? Pacemaker v Implanted defibrillator?

Chinkoflight profile image
17 Replies

Hi, it's #chinkoflight here with an update. Things are moving on. I'm in coronary care, and the evidence for my fainting whilst running story has now shown an arrthymia at the time of the fall, effectively stopping my heart functioning, leading to the drop in blood pressure and the syncope event. It's not common.Two consultants have expressed a view, the duty one saying pacemaker fitting the likely position by the end of the week. My consultant who had my LINQ loop ECG recorder fitted saying implanted defibrillator.

I'm one for trusting the consultants they do know there stuff, but I am also conscious there is so much still unknown so much intervention is " the best solution we have available now..".

Has anyone else faced this fork in the road under similar circumstances? How has it worked out? Any questions I need to make sure I ask. I'm reckoning this is going to be one of those whirlwind weeks and I've not caught up yet on my loss of sleep from 4 days in A&E!

Trying not to think about the impact of an indefinite driving ban on my life right now!

Looking for the next #chinkoflight

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17 Replies
BobD profile image
BobDVolunteer

I'm not an expert but I thought that an internal defibrillator was to protect against ventricular fibrillation which can be fatal. If your LINQ picked up any VF then I guess this is why that consultant is saying what he has. The local chap may not be in posession of all necessary information.

Regarding driving, my understanding is that if the ICD does not activate for six months then driving may resume.

Chinkoflight profile image
Chinkoflight in reply to BobD

You are the sage, meant in the very best of ways! 😁

Chinkoflight profile image
Chinkoflight in reply to BobD

Just got interrupted by the EP technician with my data. LVF! Nasty things happen! But I think there are other things being picked up that need ruling out too or put to one side as less important. Many thanks for your prompt and always helpful replies to all the questions. You deserve a medal.

Buffafly profile image
Buffafly

Guess you have been lucky, otherwise it could have been ‘Lights out forever’ instead! Best wishes

baba profile image
baba

Your doctors will have your medical information and LINQ data, best be guided by them.

Some info on different devices:

api.heartrhythmalliance.org...

Best wishes.

Chinkoflight profile image
Chinkoflight in reply to baba

Absolutely the specialist responsible for the decision will be listened to by me ! I guess there may be a specialist preference as both options offer a solution. This is the final view as relayed by the consultant. In my case the decision is made because so far it's a one off event of it's type in nearly a year of monitoring. So it's better to have a device lurking and ready to deal with the event. So ICD it will be unless something else is identified. The tachycardia is responsible for the heart muscle damage causing raised troponin levels. ie it's not just ischaemic heart attacks that cause muscle damage. There is little chance to assimilate all the information and get a handle on what might be being proposed when it's so unusual an event. My first post gave some really helpful answers which steered me to check what some thing's meant etc. This enable me to research and find a definitive medical summary paper for syncope. I was able to have a really focused feedback with the registrar this morning and able to give more precise information realising some history was helpful. I am in such a better place for the considered experience of the respondents from my original post in this sequence over the weekend as my situation has unfolded. Just have another 8-9 days in coronary care, a barrage of interventions and leaving eventually in a better safer condition.#chinkoflight

Singwell profile image
Singwell

This sounds positive- you did the right thing getting properly checked put.

Sustainedvtach270 profile image
Sustainedvtach270

Hello, as Bob mentioned the driving ban is for 6 months, I managed it about 3 years ago when my pacemaker/icd was fitted, uber to get to work and my wife to pick me up. For myself I wear a pacemaker/defibrilator. The pacemaker kicks when the heart rate jumps down lower than 50, which happens about 10-20% of the time, and the ICD kicks when HR jumps up above 220. When the heart rate is very high, you can go into vtach, then vfib, and then cardiac arrest... That little machine saved my life at least 3 times... You seem to be very active, which will help you to recover quickly, it just takes a bit of time to adjust your life, for me 1/diet 2/exercise 3/develop slow nasal diaphragmatic breathing. Take care!

Chinkoflight profile image
Chinkoflight in reply to Sustainedvtach270

Thanks for the really helpful reply. I note the DVLA don't specify any times, and I will have had a single event and straight to ICD implant. But maybe the process of approval ends up being 6 months. I spotted a recent research paper following up incidents post fitting of an ICD for the purposes of clarifying future risk. Sorry don't have the link but if I come across it again I will post it. So maybe with experience and data risk might be better managed.

Sustainedvtach270 profile image
Sustainedvtach270

There is a very large and active support group on facebook "Living with an ICD", very useful when you have some very specific question about ICD. However, can be very depressing, people tend to share on forum when they have some bad news. I prefer to follow this afib forum, there are many very well educated members on afib, and for me as long as I can stay out of afib, I am out of trouble! And listen to your doctors, medications are not optional for people like us...

Chinkoflight profile image
Chinkoflight in reply to Sustainedvtach270

Hi thanks for that. I tend to have a limited engagement on FB. But like you I like Afib because it tends to stay focused and purposeful and genuinely supportive.

timetabler profile image
timetabler

Pacemaker alone (in the UK, ie. DVLA) : driving ban is just one week; and you must tell your insurers.

Sorry, I don't know about other devices.

Chinkoflight profile image
Chinkoflight in reply to timetabler

Hi thanks for that. I think for me the complication is the syncope event. But you're right I don't think there is a specific length of ban like I had for my stroke and I do think my medics will be engaged so there is some bureaucracy and time blocks potentially in the system from what I can see. I am high risk hence having the implant without going on a list, so will have to see. But I am now so better informed and beginning to adjust to my situation with the support. I'm not feeling isolated and what do I do.

Skertchly profile image
Skertchly

I had fall down steps and woke in hospital and had a heart pacemaker fitted with no say in the matter. Now six years later all functioning well except the Covid I’ve had this week nearly finished me off.

I take all the diabetic meds including insulin plus bisoprolol and other heart meds. Good luck and health to you

Chinkoflight profile image
Chinkoflight in reply to Skertchly

Thank you for your helpful reply. Sorry about the COVID. I avoided it all through the crisis but got it the week before my last booster jab was due. The symptoms were very unpleasant with a vicious fever. It took a couple of weeks before I started to feel it was out of my system. In hospital still soon to have an angiogram decision is probably a ICD.

Gumbie_Cat profile image
Gumbie_Cat

Good luck with it all. Thank goodness for that LinQ device, we are all in a better position these days with both technology and medications.

Hoping that you will be back running, and driving, before too long.

Chinkoflight profile image
Chinkoflight in reply to Gumbie_Cat

Thanks ,so right. Good job there are some clever people around doing good!

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