Remote monitoring and atrial fibrillation

My experience

by Gemita - 2023-04-22 02:48:40

Hello John,

I am sorry to hear about your need for an anticoagulant for prevention of stroke and systemic embolism.  These arrhythmias are real pests.  Yes it only takes a short run apparently, however infrequent, to put us at risk.  In my case a short run was initially around 11 beats of Atrial Fibrillation (AF).  Have they confirmed Atrial Flutter or Atrial Fibrillation?  Both would require an anticoagulant if you have risk factors.

I have been on Edoxaban 30 mg since 2016 for AF and I can honestly say my fears of having a bleed or experiencing gastric distress were not realised.  In fact, I am totally unaware that I am even taking the med, although to be fair, the usual dose for AF stroke protection would be 60 mg, but this was reduced to 30 mg for my low body weight (under 60 kg).  At this dose it is still apparently effective for AF stroke protection.  My husband is also on the same anticoagulant at 30 mg, due to poor kidney function, and he also tolerates it well.

I tried Apixaban 2 x 5 mg (the usual daily dose for stroke protection) before Edoxaban and although it is one of the best anticoagulants in terms of tolerance and safety, it didn’t suit me at all, causing gastric distress.  The other two big players are Dabigatran and Rivaroxaban, both of which can be hard on the stomach, although some tolerate both meds well.  It might be trial and error to find a suitable anticoagulant, but Apixaban, although costly, is one of the best to try first according to my doctors.

Regarding monitoring for further episodes, I personally cannot directly view data from my Medtronic pacemaker using a phone APP although any downloaded information to my clinic would give my doctors this information which I could then ask about or request a copy of.  Many of us have Kardia Mobile for monitoring our heart rhythm.  I also use a blood pressure monitor because sudden swings in blood pressure (high or low) is an indication for me that I am in an unstable rhythm like AF.  I also feel my neck pulse to see whether my rhythm is irregular, fast or slow, but personally I know from my symptoms alone (quivering chest sensations, sudden weakness and fatigue, sometimes shortness of breath/chest pain, racing/slowing heart rate and unstable blood pressure) that I am in AF or some other atrial tachy arrhythmia.  

Please try not to dwell on your arrhythmias, that would be a sure way of making the situation worse.   Providing the heart rate is well controlled and you are protected from having an AF related stroke if you have risk factors, you should remain safe and hopefully symptom free.  If you have difficult symptoms, then please report these or get help whenever you feel you need it.  I hope you have long periods of blissful normal sinus rhythm.  Good luck.

Remote monitoring /atrial flutter

by Selwyn - 2023-04-22 07:22:42

Hello John,

Sorry to hear that you need all this treatment and monitoring, however the idea is to keep you well. Personally I have been anticoagulated for at least 15 years without any problems. 

Anything over 2 hours with regard to atrial flutter and fibrillation puts you at risk of an atrial clot, and this can then come loose and travel producing strokes etc. therefore it is very important to have anticoagulation if possible, and that depends on your other risk factors ( eg. the risk of bleeding ). There are on-line calculators to work out the risk-benefit ratio. The risk of blood clots forming is in proportion to the duration and frequency of the arrhythmia, perhaps? ( there is some debate about this). Some risk may be acceptable - again there are on-line calculators for this risk, for your  age etc. 

I used to be on warfarin and had my own meter to monitor this- it is a real pain to have to have regular blood tests, and the levels are very variable. I now take Apixabam and this is just twice a day tablets and needs no monitoring. Outcomes vary with different anticoagulants. All doctors have their favourites based on their experience and the literature.

With regards to monitoring your arrhythmia, pacemaker interrogation will give you an idea of the frequency and duration of your arrhythmias, via the AMS readout ( that is automatic mode switching, where the pacemaker stops the ventricles from being over stimulated due to the high rate of atrial activity. ) One of the advantages of having a pacemaker is that you have a built in monitor for atrial flutter and atrial fibrillation - treatment for your arrhythmias can be titrated accordingly. I always ask about AMS activity on my pacemaker check ups, however I now have a bedside monitor and rarely go to the hospital. Then again, nothing has changed over the years, other than having atrial flutter every time I have had Covid (x2).  I am due for my 6th vaccination on Monday!

I few people only have very paroxysmal arrhythmias of short duration - it is possible to treat these people with 'pill in a pocket' medication. This depends on the person being able to recognise their onset of arrhythmia and then take medication to stop the arrhythmia. There is some risk, as who knows what is going on when we are asleep? Luckily, those of us with pacemakers do know.

So, in summary, get someone to calculate the risk/benefit ration for you as an individual of anticoagulation.  See if you can get your pacemaker people to give you regular information about your AMS information until you are happy that you are stable.  Flutter is notoriously variable - if it relates to Covid  or a specific activity and is of limited duration , you may not need anticoagulation. Cardioversion ( chemical or electrical) may get rid of flutter for that episode. 

I've had flutter/fibrillation for at least 15 years and a pacemaker, and remain active and relatively well, anticoagulated with Apixabam and Clopidogrel, though this is not to everyones recommendation. 

Selwyn and Gemita

by piglet22 - 2023-04-22 12:10:06

Ref the phone app, it's going to depend on the pacemaker model.

I've never been able to detect any Bluetooth activity, despite scanning it.

My bedside monitor has BLE on the factory label, which normally stands for Bluetooth Low Energy. There aren't too many ways of wirelessly transmitting the sort of data that flows between PM and bedside base unit, and Bluetooth is the usual choice. Near Field Communication (NFC) is another, but that is much shorter range.

The actual chest reader unit that communicates from reader to PM does has some sizable coils in it that indicates NFC.

My feeling is that until you get a compatible PM, the Medtronic app can't be used.

Don't take that as gospel.

Selwyn

The MyCareLink if that's what you have, will send AF data, but as I'm finding, it does send anything about ectopic episodes which is why I'm keen to collect my own data.

Yes, I'm on number 6 jab, due Mat 6th. At least one person I know isn't going to bother, but that's their choice. Personally, I go for everything on offer.

Slightly off topic, have you had the triple A (AAA) scan? It's not widely publicised in all surgeries, but mine was good at telling me.

A relative of mine died instantly from an aortic aneurism and was found at the bottom of a swimming pool.

Thanks for the info on heart rates etc.

Piglet

by Gemita - 2023-04-22 13:24:04

Hello Piglet, yes I am aware some older models may not be bluetooth enabled (mine certainly isn’t) and I need to use a MyCareLink Smart reader to connect my pacemaker with the App to download data to my clinic on an as needed basis.  I don't do this very often since I attend clinic quite frequently (lucky me).  Notwithstanding this, I am not aware that members with bluetoothed enabled pacemakers are able to view on the App much in the way of data?  Some information might be available to view, but certainly not everything for obvious security reasons.  

Most members to my knowledge usually ask for a copy of their downloads from time to time, giving information on all their settings, events (like arrhythmia burden), history of highest/lowest heart rates and duration of episodes, battery and lead status and things like this.

You could try to ask your pacemaker team to allow ectopics to be monitored for a period to assess your "true" ectopic burden?  Ectopic burden count should be available to programme.  I am sure it can be done, even if it takes up valuable storage space for a short period of time  and uses more battery.  If this gives you and your doctors valuable information, it will be well worth the effort.  What have you got to lose by asking?  Alternatively, you could ask for an external long term Zio patch (10 or more days) to pick up all your arrhythmias.  You could also keep diary dates and time/duration of any symptoms too, to correlate with your ectopics or other arrhythmias?

Off topic, my brother and husband were both called to have the triple AAA scan.  Seems to be offered to all men in the UK when they turn 65+?

Anticoagulant

by AgentX86 - 2023-04-22 19:20:52

Like any drug, there are potential, some serious, side-effects of anticoagulants. Again, like other dsorts of drugs, thereis usually an alternative drug.  One of the side effect is gastric distress.  This is easily detected and corrected. A rare side-effect is a brain bleed (a hemorrhagic stroke).  In some sense, there is a tradeoff between a hemorrhagic stroke and ischemic stroke.  There is a guideline called CHADS2, that doctors use for the prescription of anticoagulants.  There is noting for nothing but in general ischemic stroke has a much higher probability. Atrial arrhythmias increase this risk something like five fold, hence anticagulants.

Also,  because of the small risk of a hemorrhagic stroke, if you're hit in the head (e.g. fall, auto accident, etc.) you really need to seek help.  A CAT scan is suggested to rule out any bleeding.  I have had to have a CAT scan a couple of times, just for safety. 

I've been on Eliquis since 2014 (some time before that, warfarin). I've noticed no unusal bleeding from cuts, other than paper cuts bleed a little more, perhaps. Anything larger isn't a problem, particularly with the NOAC/DOACs).  Warfarin makes a noticable difference.

In short: Anticoagulents aren't perfectley safe (nothing is) but the risk is lower with them (assuming a CHADS2 score suggess them) than without.

Bluetooth:  You won't see Bluetooth/LE unless it's transming.  There is no beacon like there is with Bluetooth.  It won't speak unless spoken to. That's the LE (low energy part).  I have seen my pacemaker on my phone but it's very rare. Yes, NFC is also used but it requires the puck to be placed over the device.  This is what they generally use at an interrogation, though my last few must have used Bluetooth, which concerns me more than a little.

Pradaxa

by Stache - 2023-04-22 21:15:41

I have been on the anti-coagulant Dabigatran (Pradaxa) for the past two years.  Yes, there are side effects for me the first 1.5 years were the worst but it has gone away now for the most part.  I have had the following side effects:

• Upset stomach

• Abdominal pain

• Heartburn

I take two capsules daily every 12 hours, in my case, my body had to adjust to Pradaxa.  However, I am taking a blood thinner as well and the combination of side effects is similar.  Again my body has come to accept the medications and it is not a concern for me anymore.  I still do blood tests every six months to make sure the medications are not causing other issues.  I have a dual chamber pacer and two stents as well.

Anticoagulant

by Julros - 2023-04-22 21:41:23

I've been taking Eliquis (apixaban) for 3 years with no ill effects, other than increased time to clot after a cut, and increased bruisng after an injury, like a twisted ankle. It sure beats have a stroke, which I had prior to starting the Eliquis. 

Aortic Aneurysm Screening

by Selwyn - 2023-04-23 10:04:56

Ultrasound screening is available on the NHS for all those men reaching 65 years of age.

If negative, you are unlikely to go on to develop an aneurysm. If your aorta is dilated, this will be monitored until the risk of surgery is beneficial. 

I have seen plenty of burst/leaking aneurysms - the mortality is terrible. They get sent to hospital and never come home.

Get screened. If you think you have been missed by the National Screening Service, contact your GP. The screening is simple, painless and interesting!

Many Thanks!

by BradyJohn - 2023-04-23 12:11:21

Gemita, Selwyn, piglet22, Agent86, Stache and Julros,

Thanks so much for your wise and thoughtful comments.  I first witnessed the effects of stroke in my grandfather when I was about 8 years old. Since then several of my mother's siblings, and my mother and father and my older sister have all had strokes of varying severity and kind.  I've lived my life thinking that I could literally outrun or outcycle the stroke risk.  It turns out that I should have chosen my birth parents more carefully ;-).  I'm also not a big fan of being on medication at all.  However, I have to make a wise choice here and your input is very helpful.  As my wife said when the first responses began to come in, 'that's a caring community'.  I completely agree.  So, I will be following up with my doctor and deciding how to proceed from there.

May you all find some ease and joy in your day,

John