Untreated Atrial Fibrillation

In July 2023 I got my second pacemaker..Medtronic Azure two-lead and I use the iPhone app for monitoring with the doctor setting the default upload to every three months. My first pacemaker was St Jude and with help from people on this board I finally got my electrophysiologist to agree to change to Medtronic for the advanced monitoring esp when we travel. That said, on Feb 14 the doctor called to say my three month upload told him I had been in atrial fib for six weeks. I had had atrial fib four years ago for 17 hours then it stopped on its own, but I continued on Xarelto for two years after that just in case. This time also I was asymptomatic..he said to start Xarelto again to thin the blood and a nurse will call to give me an appointment. She did and it was for seven weeks from now. That leaves me with persistent atrial fib for 13 weeks, 25% of the year....is that a standard of care??   I was trying to find out if the two-lead Medtronic Azure had any setting to help with afib? I called Medtronic and they said there is a CareAlert setting the doctor could enable to be alerted for afib--and a delay parameter (e.g. afib continuing after one day ,or after one week etc.) but my doctor had not set that despite my having afib that time time before.  My atrial pacing anyway is now about 30% of the time, ventricular pacing < 1%.

Reality check for people with experience..shouldn't the pacemaker monitoring have been coded to be alerted for afib such that the doctor would have been notified, perhaps right away, rather than wait for a default three month upload? And is it customary for patients to continue with afib up to 13 weeks with no treatment other than a blood thinner?

I've been very worried..would appreciate some knowledge and perspective! 

Thanks!


3 Comments

Untreated Atrial Fibrillation

by Gemita - 2024-02-26 13:08:59

Scott, firstly I am truly sorry to hear that you are in AFib.  A nasty arrhythmia.

You say you are asymptomatic, which tells me that your AF is probably not very fast or causing other difficulties.  As long as you are anticoagulated (if you have risk factors for an AF related stroke) and your heart rate is controlled, they would not usually be too worried.  AF can only be controlled with medication, cardioversion or an ablation and these would only be offered if we were symptomatic, well at least this has been my experience over here in the UK.  However, I believe a good doctor would try to stop AF quickly because the longer it runs, the faster it could cause remodelling of the atria (scarring) and then promote further AF.  

I am symptomatic when in AF and have AF with a rapid ventricular response rate.  In your shoes after 6 weeks in AF, I would have been knocking at my EP’s door but in your case, without symptoms, it is difficult to argue that you need immediate treatment, other than the anticoagulant.  Do you know what your heart rate is Scott?  Do you have any breathlessness, dizziness, chest pain?  It could be that it will still stop on its own, even after this time.

There are settings that might help like Rate Smoothing or Atrial Preference Pacing and these should be turned ON.  There will also be a Mode Switch function which will prevent the tracking of any fast atrial rates, preventing a rapid ventricular paced rate in response to the rapid atrial rate, but I would have thought as an AF patient, these settings would already have been activated?  Realistically, the pacemaker cannot stop an arrhythmia like AF although it can certainly help to control it when our settings are optimally set.

I am afraid AF is not regarded as a dangerous arrhythmia (like say VT/VF) providing the heart rate does not go too high or stay there for long periods. 

Is this the usual standard of care?   Sadly yes sometimes, particularly if we are not symptomatic because AF is far too common and extremely difficult to treat, especially in the ageing population.  The two most important treatments are rate control and anticoagulation.  You are on the latter.  If you were symptomatic, then you would probably need rate control for any high heart rates although a rate control med like a beta blocker, calcium channel blocker or perhaps an anti arrhythmic med could be tried immediately to see whether medication would stop your AF?  You would need to discuss this with your doctors, although without any symptoms???

Your question, "shouldn't the pacemaker monitoring have been coded to be alerted for AF such that the doctor would have been notified, perhaps right away, rather than wait for a default three month upload"  Yes, in view of the fact that you were not on an anticoagulant, your doctor should have set up an alert but clearly didn't.  With low heart rates, AF wouldn't have been automatically picked up (as an Atrial High Rate Episode) ... "and is it customary for patients to continue with AF up to 13 weeks with no treatment other than a blood thinner?"  This is a possibility, especially if the patient is completely asymptomatic, although I am in no way suggesting this is a good policy with an arrhythmia like AF.

Scott, please go back to your doctor for peace of mind.  You need some answers

Thank you.

by scott02467 - 2024-02-28 11:54:02

Thank you, Gemita, for the time you took for such a helpful response.  No, I have no breathlessness..occasional light-headedness (more in the lines of orthostatic hypotension only sometimes for a few seconds after standing, and although occasionally some chest pain, my wife (who is an advanced practice RN) tracks this more to muscle pain from left arm/pectoral muscle movement.  I went out after getting little help from the electrophysiologist and bought an Apple Watch whish has EKG tracings confirming the a-fib...the heart rate is around 90-102bpm. I continue to be on the exercise bicycle twice a day (total time about 40-45 min with level 13 resistance of possible 20). I also stopped any wine with dinner once I was notified...between that and the bike, I'm down 5kg/almost one stone. I did meet with my GP yesterday, and got validation about my concerns, and related what's gone on (plus the fact in December the EP had made two mistake with my meds)...his recommendation was that I start looking around for another EP...that the trust level was broken by the general lack of appropriate response by this current EP plus his lack of coding on the Medtronic pacemaker.  However, atrial fib and on blood thinner (Xarelto) and being asymptomatic he confirmed puts me down lower on the level of importance..hence the 7 wk delay in seeing the current EP again. The change to a new EP will take a while. Here in the States (expat here) I won't get another appointment elsewhere until records are sent over, and this will take a few weeks after which there's the delay to see the new EP based on his schedule. Based on what you wrote, though, I am going to drop this current EP a message about medication.

Thanks again for your very helpful reply.

 

Cheers,

Scott

Onset of Atrial fibrillation

by Selwyn - 2024-02-28 14:55:14

Hello Scott,

It certainly is not helpful to your well being to be in atrial fibrillation (AF)  I am sorry to hear that this is the case.

It is better that you know that your have AF and are anticoagulated as even paroxysmal AF is associated with embolic stroke. 

I find AF reduces exercise capacity, even if it is otherwise asymptomatic, as it often is. 

I think it is fairly important to get rid of the AF if you can... if you want to look at the prognosis NICE gives you the graphic details ( https://cks.nice.org.uk/topics/atrial-fibrillation/background-information/complications-prognosis/). It is therefore important to try to get something done to stop the arrhythmia. Failure may have to be accepted, however, I have now had two atrial fibrillation ablations, and two flutter ablations. Success! There is absolutely no reason why you should not try medication first - for years I took Flecainide with some success. 

Please get someone to check your thyroid function as this is a cause of AF.

You should be screened for ischaemic heart disease, hypertension etc.

I would stop alcohol and caffeine.  Overtiredness and stress is not helpful. 

The longer AF goes on, the harder it is to get rid of it.  Whilst not an emergency, it is best managed sooner rather than later. 

Luckily for me I saw my consultant in 2 months of atrial flutter and within 5 days was having this sorted with an ablation. 

I hope you soon get a satisfactory outcome. Personally, I use a Kardia device(EKG) to monitor if I have AF - it is really quite reliable at detecting just this arrhythmia.  Your Apple Watch sounds that it could be reliable.

 

 

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