Patient access to pm data

PM data

by AgentX86 - 2020-01-20 20:17:57

You can't.  It's only available to your medical team but, like all medical data, you can get it from them.

If by "fit it" you mean FitBit, yes I have a lot of experience with them.  Like any watch, they're nice toys but useless for gathering any real Afib data.  They don't measure Afib and in fact Afib makes what pulse information they do give, completely useless.

I know nothing about fibricheck but a similar app exists, free, on Samsung phones.  Again, a nice toy but rather useless for real data (Samsung's, again, I know nothing about fibricheck other than it uses the camera in the same way as does Samsung - i.e. as a pulse-ox).  If you're serious about this, get an AliveCor KardiaMobile. 

Two versions are available.The six-lead version is much better than the older one-lead but both are FDA certified for detecting Afib.  The six-lead also uses Bluetooth, where the older unit uses the phone's microphone as an acoustic coupler.  Bluetooth is better but will only work on a limited number of phones. 

The six lead will show other arrhythimias other than Afib.  I think it's show flutter (but won't automatically detect it).

The KardiaMobile creates a EKG strip that you can read (much information online) or email to your EP. AliveCor also has techs that will read it for a nominal charge ($9, I think) or as a subscription service.  They say that it's not for pacemakers because they may fool Afib detection but you, and your doctors, can still read the EKGs that it generates. Nice tools.

Take a thumb-drive with you to your next PM interrogation

by crustyg - 2020-01-21 05:06:23

You can normally get them to put all of the PM reports onto your USB stick and take it away with you.  This doesn't give you the actual heart traces, but it gives you all of your settings, log entries, percentage paced in atria/ventricle(s) and lots of other useful information that tells you how your heart is doing.

You *may* need to get your EP doc to authorise this with the EP tech, depending on the team you work with.

You can buy a little single-lead, portable EKG gadget for about $90 which will record any single lead that matches what you would get with a full 12-lead EKG in hospital.  If you know how to read EKGs this is enough to detect AFlut and AFib.

AMS

by Selwyn - 2020-01-21 11:41:58

The automatic mode switching (AMS) on the print out from the pacemaker  lab will tell you the duration and frequency of your AF between check ups.

As you don't have symptoms, I would suggest trying to keep an eye on the duration and frequency of your AF is a waste of time as you cannot monitor it for 24 hrs, 7 days of the week. 

You can adjust any medication in response to the AMS.

Personally, I use the above print outs and a Kardia with my iphone if I am worried about palpitations. 

Paroxysmal AF may or may not have the same thrombotic risk as continuous AF- it is an interesting subject, especially if the AF is well controlled.

Thrombotic Risk with paroxysmal AF

by Gemita - 2020-01-21 12:33:45

Selwyn, I was told thrombotic risk (if we have risk factors) is the same for Paroxysmal AF as it is for persistent or permanent but maybe the jury is still out on this ?  It only apparently takes a short run, however infrequently, of PAF to put us at considerable risk I was told ?  Could it possibly be the in and out nature of PAF compared with persistent or permanent AF which makes PAF equally dangerous, I am not so sure anymore. 

Ludwig yes I have asked my PM clinic for access to my PM data and they have sent it all to me on a disc which is password protected and it is really interesting to see the detail on what my heart has been up to over the last several years !  Unlike you, I am symptomatic during any arrhythmia, so I know immediately I go in and out of normal sinus rhythm.  I keep diary notes of anything "major" to correlate with my downloads when I attend clinic for PM checks.  I also check my pulse manually for speed and irregularity/regularity of heart rhythm during any nasty episodes.  I can usually tell what rhythm disturbance I am in with accuracy (mainly from my symptoms).  You are lucky to be symptom free.  I don't use Kardia Mobile although I have heard the new 6 lead is very good and is approved by my doctors for patient use.  Happy learning

Thrombotic Risk with paroxysmal AF- all is not clear.

by Selwyn - 2020-01-21 13:18:58

Gemita, as I say, it is an interesting subject:
'Although randomized controlled trials of thromboprophylaxis in patients with paroxysmal AF per se are lacking, the approach to patients with paroxysmal AF should be similar to that in patients with sustained AF.  Despite paroxysmal AF being a common condition, management strategies are limited by evidence from small randomized trials, with inconsistencies over the definition of the arrhythmia and the inclusion of only symptomatic subjects. Evidence for antithrombotic therapy is also based on epidemiological studies and subgroup analyses of the large randomized trials.'  ( See https://doi.org/10.1093/qjmed/94.12.665 ).

At present the advice is to treat as persistent AF. However, as we have PMs with AMS counters, you can try to assess risk on the basis of AF burden ( ie. those especially that only have AF < 1 hour), I quote:

'The advent of various cardiovascular implantable electronic devices (CIEDs) such as implantable loop recorders (ILRs), implantable cardioverter-defibrillators (ICDs) and permanent pacemakers (PPMs) helps us in calculating the AF burden and determine the need for anticoagulatants based on this. An AF burden of ≥1 hour daily is believed to carry higher risk of embolization, but in those with a history of AF who maintain normal sinus rhythm (NSR) or low AF burden, long term OACs may be more harmful than beneficial. This is true mainly in elderly population with high risk of bleeding. Thus, the use of long term OACs must be tailored to the need and preference of an individual'.

( ref: Godtfredsen J. Atrial fibrillation, etiology, course and prognosis: a follow‐up of 1212 cases. In: Kulbertus HE, Olsson SB, Schlepper M, eds. Atrial Fibrillation. Molndal, AB Hassle, 1982:134–45.).

An interesting subject indeed! There are a number of papers published similar to the above. 

Following my ablation for AF and the results of my AMS print out, I have not been brave enough to chance stopping my anticoagulation!

Oh that is music to my ears !!

by Gemita - 2020-01-21 13:45:56

Thank you Selwyn, I will certainly do some more reading.  I like the idea of long term OACs being tailored to the need and preference of an individual.  I don't believe I have any other risk factors apart from being female and over 65 and my AF/other arrhythmia burden is certainly low and I have long long periods now of normal sinus rhythm thanks to my pacemaker keeping my heart rate at a steady 70 bpm, filling in pausing and helping to pace me out of my arrhythmias (at least this is what seems to be happening).  However I do have paroxysmal AF with a rapid ventricular response rate and it can get pretty nasty at times although Bisoprolol does wonders for me.

I certainly would be brave enough to stop my Edoxaban if my doctors gave me their blessing !

Just to muddy the waters some more

by AgentX86 - 2020-01-21 23:37:03

"Strokes" are not the only problem with paroxysmal Afib.  Microscopic clots can form and embolize in the brain, causing "microinfarcts".  The result is often dementia or similar brain dysfunction, and not detected for years or decades.  Antocoagulants will mitigate this process, as well as maor strokes.  Of course anticoagulants are a two-edged sword.  The chances of a brain bleed have to be balanced against the chances of embolized clots. 

AgentX86

by Gemita - 2020-01-22 03:53:16

Yes how best to tackle all the potential risks of having AF without taking out the sledge hammer is still somewhat muddy and we have much to learn.  I guess my EP wouldn't be interested in moving me forward to ablation without several months of anticoagulation beforehand but clearly  to be anticoagulated for life does seem overkill at this stage.  Fortunately low dose Edoxaban (because of low body weight) is pretty troublefree at moment. Hope you are doing okay AgentX86

Paroxysmal AF seems to be a *much* bigger risk for stroke than previously thought

by crustyg - 2020-01-22 07:32:01

I see that the UK NICE is now recommending (guidelines out for consultation until 4th Feb 2020) Reveal LINQ implantation for any patient who has presented with a stroke for which no other cause can be found.  The rationale being that when the Reveal implant used for six months, AFib is found five times more often in such patients than in those who do not have the implant.

Given that everyone in this group has alread had one stroke, it makes the evidence that periods of AF are a cause of stroke much more compelling.  But there are still unanswered questions, not least number-to-treat to avoid a single stroke.

IGNORE THIS ERROR {CHA2DS2-Vasc scoring still doesn't add a point for AFib, but perhaps it's time for another update. } Much of the risk/benefit seems to be done with novel direct-acting anti-coagulants which do have a much better safety profile than the Vitamin-K antagonists.  But cost is a *big* issue, esp. in the USA.

CRUSTYG

by Gemita - 2020-01-22 08:21:07

Good to have another point of view.  

I have certainly had the benefit of 3 years LINQ monitoring so I have lots of good information and yes you are right, it is incredible what this little gem picks up.  Even though I am completely symptomatic and I know when I go out of rhythm, LINQ was able to detect periods where I was completely unaware of having slipped, however briefly, into AF.  It really is one of the best monitors out there, although a bit more invasive and expensive.  I am glad UK NICE is recommending this now for patients who present with a stroke for which no cause can be found.  There is no better way of detecting AF and to assess total time spent in AF.  However I would go further and say everyone who presents with worrisome symptoms, like breathlessness, syncope, chest pain from heart rhythm disturbances, should be offered this monitor.  It would save time, money and lives.  It is no good waiting for the event to happen before taking action.

One of the frustrations of having paroxysmal AF is the time it takes to pick up this potentially lethal rhythm disturbance and many of us have to fight our doctors all the way to get a confirmed diagnosis.  It is often a waste of time with paroxysmal AF to receive short term monitoring unless AF occurs during this all too brief period.  This then just prolongs the agony of receiving an AF diagnosis and worse, gets many of us diagnosed with anxiety related palpitations instead.

Actually to my knowledge, I havent had a stroke (hubby has had several but not me) although a silent stroke is certainly a real possibility for any of us with paroxysmal AF, so who knows?  Yes I too believe the CHA2DS2-VASc scoring system needs upgrading and a point awarded for AF.

We are extremely lucky to get our OACs on the NHS.  It must be a nightmare having to pay for essential meds.

Everyone here has had a stroke

by AgentX86 - 2020-01-22 09:17:07

I don't believe that this is true. I haven't had a stroke,  per se but have had a seizure that MAY have been caused by the microinfarcts caused by micro-clots before I was on anticoagulants. I sa "may" because the MRI was inconclusive but they have no other guess (neurology is real voodoo medicine).

I have had my LAA clipped but will be on anticoagulants for life (that was decided long before any possible brain  damage was a issue). The benefits of a NOAC exceed the risk. As pointed out,  these things aren't cheap ($1400 for a 90 day supply). The good news is that generic apaxiban has been approved by the FDA so competition is about to enter the marketplace.

A word about CHADS2: CHADS2 is specifically intended to assess the risk/benefit of an anticoagulant for patients with Afib, so giving a point for Afib is, um, pointless. ;-). Also, the point  for being female is only given if other risk factors exist. It is not an automatic one point but if you're 65 or have even treated high blood pressure,  that's two (or three) points.

That's not what I said, AgentX86

by crustyg - 2020-01-23 06:47:50

What I wrote was that everyone in the group of patients who has already had a stroke - for which no cause could be found - should have a Reveal implanted, to look for paroxysmal AFib.  UK NICE is now recommending this, as AFib is such a powerful cause of strokes - but these patients aren't classified as being in AFib at this stage.

I did *not* say that everyone with AFib has had a stroke, nor that everyone with AFib will inevitably have a stroke - although that's the way to bet over the long term if there are other risk factors - see below.

But you are correct - I slipped up with the CHAD2DS2- vasc scoring.  My error.

Does that make more sense?

Understand

by AgentX86 - 2020-01-23 23:24:52

Since there was a paragraph break before "Given that everyone in this group has alread had one stroke", I assumed that it was a new thought and interpreted "this group" as this group (PMclub).  I couldn't figure out what you meant, whether it was micro-strokes, some sort of hidden stroke, or something else.  I was looking for clarification more than anything. The way it was written the "this" was ambiguous.  It's clear what you meant now.

Undiagnosed AF

by Selwyn - 2020-01-24 12:45:30

Here in the UK there is a national screening programme for undiagnosed atrial fibrillation, however  there are still many people that are missed and are at risk of stroke. 

I relate my Mother's experience... She had a number of attacks where her speech was lost ( lasting a few days to weeks), and repeat CT scans showed no abnormality. Her ECG was normal at all times.  It was only when she was admitted to hospital for an unrelated condition that the admitting doctor, doing an ECG found AF.

She eventually had a pacemaker ( or 2) and inspite of anti-coagulation died from a massive stroke ( as did her brother).

I have seen many people die from thrombotic conditions having had 'anticoagulation'.  I can only hope that the newer generation of anticoagulants are better, as that is what I take!

I would like to know, AgentX86, where the evidence is for the improved outcome of microinfarcts with anticoagulation for those having  AF? Certainly, in any event, as I recall, if you look at 'asymptomatic'  elderly folks' brains at routine post mortem you find damage from small thrombotic strokes- so called 'silent lacunar infarction'. Of course, if you have many of these you end up with symptoms of one thing or another. 

Undiagnosed AF

by AgentX86 - 2020-01-24 23:20:14

Sorry to hear about your mother.  It's clear that anticoagulation isn't 100% effective.  It greatly reduces the probability of clots but doesn't eliminate it.  It also causes hemorrhagic strokes, or at least doesn't allow the hemorrhage to clot.  Anticoagulants carry significant risk, which is why we have things like the CHADS2 score to balance the odds of ischemic and hemmhoragic strokes.

The big advantage of the NOACS is that the chances of hemmhoragic strokes is much less than Warfarin, particularly in the elderly.  This allows anticoagulation to be used for a wider set of patients (balance point moves), especially the older group.

I really don't know what studies have looked into this but it's clear from the statistics that anticoagulants reduce the numbers of clots, thus ischemic strokes. Perhaps the assumption is that a lower number of clots also reduces the number of micro-clots which cause the microinfarcts.  I know that my cardiologist and neurologist believe that any (if there are any - MRI was inconclusive) of my microinfarcts would have been caused before I was on an anricoagulant (years ago) and not a recent event.

The need for anticoagulants

by Gemita - 2020-01-25 08:01:37

I think this debate still has some way to go since there is a lot of confusion out there about the appropriateness of anticoagulation for life in some patients.  This has been an interesting thread and I have learnt a lot, but am I in any way wiser as to my best course of action?  I am not so sure.  Actually I feel slightly more confused as to whether I should really be on any treatment at all if I consider the present CHADS scoring system and the assessment (expressed so clearly in this thread) of what contributes a "point".   Additionally, my present low AF burden would perhaps make my need versus risk less clear but I know this could all change in an instant, AF being what it is.

I will continue to stay on anticoagulation for the moment but I will be asking for more guidance when I next see my doctors.  Thank you Ludwig for your post on patient access to PM data.  I have found this thread particularly helpful and thought provoking