My new "toy": Following my ablation in... - Atrial Fibrillati...

Atrial Fibrillation Support

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My new "toy"

Curlychriscoach profile image
22 Replies

Following my ablation in January I have been through various monitor tests and have been discharged, taken off xarelto and told to keep an eye on my heart rhythm. I opted to get a Kardia montior and have started recording at various times as a routine or when I feel symptoms, very low level.

Having got a number of "unclassified results" I read the various entries here that helped me understand a little more. They seem to happen when I am suffering a series of close ectopics. Fair enough... I think.

Also I have now seen one ECG with AF so I know the shape.

The danger is I become fixated on taking another recording and another recording and... How do people generally use the Kardia and how often? Probably "depends" but some sort of steer would be useful. Thanks All.

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Curlychriscoach profile image
Curlychriscoach
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22 Replies
GrannySmithgs5 profile image
GrannySmithgs5

Hi Chris , I used mine initially for a diagnosis , now only use it confirm that I am in AF before taking my Pill in Pocket . Best wishes on your journey

Finvola profile image
Finvola

I found it to be quite a learning curve at the beginning and, like you, probably used it more than was needed. But, that was useful in learning to recognise an odd feeling and have it translated into a trace and, usually, a diagnosis.

Once that phase was over, I use my Kardia when I feel a prolonged arrhythmia and, as I have my AF controlled by Flecainide, to confirm that the beat is not AF.

It is a really useful tool in recording the heart's mis-steps to show to a doctor and its use has meant for me the confirmation of elusive arrhythmias and it has taught me to recognise my heart's gymnastics pretty well.

Incidentally, haven't used mine for a couple of months since my last bad bout of ectopics. You'll get there . . . it's normal to play with a new toy!

All I can offer is the advice I got from Beancounter soon after I was diagnosed when I was obsessed with using my blood pressure monitor. "Lock it in the shed at the end of your garden and get your (in my case) wife to hide the bloody key". Doubt you will go that far, but I expect you get the gist, try to use it only when and if you sense a change in your heart's funtion.

All the best, John

ps. No I don't sleep in the shed!

BobD profile image
BobDVolunteer

I have always worried about the ease in with which normal sane people can become OCD over such devices and warned of this on many occasions--- speaking from personal experience I add. . It is a powerful tool for helping diagnosis but should not be used as a toy although I do know that some people find them comforting. Again purely personal but I KNOW if I am out of rhythm and do not generally need to see it on a screen.

Nanfranz profile image
Nanfranz in reply toBobD

But Bob, what if a person isn't certain what's going on -- an AF episode, or ectopics? A person can easily know if his or her heart is in some kind of arrhythmia, but there is still the question of what kind of arrhythmia. I'm going through that phase right now and supposedly keeping a diary of kinds of episodes and their duration to show the cardiologist later this week. He want to know how long the episodes last so that he can make a wise decision on whether to keep me on Xarelto. Half the time I'm not sure if I'm having ectopics or Afib, so if I had a Kardia I'd be using it often until I knew the difference. I understand the danger of becoming fixated, so don't intend to buy one, but I can also understand the need to know.

BobD profile image
BobDVolunteer in reply toNanfranz

Try taking your pulse. Ectopics are like missing beats AF is total chaos.

Nanfranz profile image
Nanfranz in reply toBobD

Thanks Bob -- but having had occasional PVCs for many years and not a bit concerned about them, I am now having daily episodes lasting several hours, but which do respond to Flecainide. I also now have PAF (diagnosed 3 years ago but no meds needed until a year ago) and it sometimes feels that the ectopics and the afib are running hand-in-hand. I know they are two separate issues but there are those familiar skipped beats (about every third beat) seemingly coming alongside the quivering afib, and I find it hard to catch my breath. That's what puzzles me.

BobD profile image
BobDVolunteer in reply toNanfranz

I would try and get a proper twelve lead ECG . I arranged with my surgery to be able to pop in at a moments notice should I be out of rhythm to see what it was. There are limitations to Kardia and understanding ECGs is something not all doctors are good at but a copy to show your EP is always useful. .

Nanfranz profile image
Nanfranz in reply toBobD

Thanks again, Bob. I've had umpteen ECGs over the past few years, but haven't thought about the number of leads each time. Will ask cardiologist when I see him this week.

BobD profile image
BobDVolunteer in reply toNanfranz

Normal ECG is 12 lead with 8 around chest and one each on arms and legs. Shortform ECG and monitor uses four leads with colours Red. yellow, green and black with the mnemonic Ride your granny's bike to help position them. Red being your top right from memory.

Curlychriscoach profile image
Curlychriscoach in reply toBobD

... clockwise and lemon left as I remember?

Curlychriscoach profile image
Curlychriscoach

Excellent. Thanks for all the replies and warnings about the "toy" in inverted commas.

All really useful to get the best out of it. I spend a lot of time coaching in sport and having much the same conversations about controlling the use of Garmins, Polars, and every other technical thing to record efforts. Triathlon brings out the worst of technical and gadget needs in people.

I think I am less conversant about the type of issue going on in my heart, spotting the difference between different arrhythmias and ectopics. I have been very fortunate to asymtomatic throughout. This has helped so far and agree I must not become a prisoner to the tool.

I also had a very difficult time trying to get my Doctor to take my questions seriously for a year of so before getting a referal so I like the idea of having some information to share with him in case of a return to AF that requires further action.

Finally thanks for the tag normal sane people... in my case questioned on more than one occassion!

Beancounter profile image
BeancounterVolunteer

Hi curlychriscoach.

I can only tell my story, about 3 months after diagnosis, I bought a BP monitor, shortly after that a Kardia (before it changed name) and I was religiously measuring everyhting twice a day. I worried about every slight change in the ECG and even tried to second guess interpretations, which as most doctors will tell you is a highly specialised job especially with the big 7 lead ECGs

The result was that I was focussing on my AF to the exclusion of just about everything else. Bob D and others told me to stop testing, but of course I knew best and for a number of months I went into a downward spiral of depression convinced I was going to die.

I can't remember the trigger that brought me out of it, but it was this forum, or rather it's predecessor on Yahoo.

Now looking at my BP machine on the shelf I think the batteries ran out maybe 6 months ago, just went online to find my last Kardia test it was June 23rd 2016, over a year ago.

I still have AF all day every day, but now I don;t think about it, take my anti-coagulations tabs and get on with my life.

That's the danger of over-measuring, however please note I am NOT saying they are a bad thing, for people trying to catch episodes, or on medical advice and other reasons they are brilliant, just don't get hooked up too much in them, life is too short.

Be well

Ian

Curlychriscoach profile image
Curlychriscoach in reply toBeancounter

I agree with all the above. Thanks for taking time to share thoughts and advice.

When my sister in law rang my wife for the 4th time in an hour and asked what to do about her new sons high temperature, which was causing her to panic, the advise was "stop taking his temperature...".

I have agreed with my doc that he will look at my records, which I have kept from the beginning due to interest in exercised induced heart issues, in a months time. Unfortuntaly no 12 lead ECGs offered by our surgery. As with Nanfranz this will determine whether I restart Xarelto.

I will be disciplined and limit the use of the recording, in fact I forgot this morning? back to the shed, Flapjack!

I also think this discussion shows up the different needs of people in managing their conditions and the psychological impact, which I have posted about before. Human nature is to have certainty and we manage different ways to get that certainty.

Exercise induced arrhythmia is a whole other subject, some covered here, maybe another discussion some time...

Redhead1949 profile image
Redhead1949 in reply toBeancounter

Dear Beancounter and CurlyChrisCoach, Thank you for sharing your stories. I went through the same thing. I have had afib for several years and only took aspirin. I wasn't ready to take warfarin yet. In Jan. I fell on my bad hip and can no longer walk on it (doctors said couldn't do the hip replacement because my spinal cord was in bad shape.) 2 weeks later got C-Diff. That is a beast in itself. Am still doing a tapering for that 6 months later. I was losing my eye sight. Couldn't see at all out of right eye. So I managed to fit in 2 cataract surgeries. Then one night couldn't breathe so made a trip to the Emergency Room only to be told I have permanent A-Fib now and that my childhood asthma had come back! Left hospital 3 days later on Digoxin, Warfarin, and an asthma nebulizer! Digoxin made me extremely ill. Came off Digoxin and doctor upped Atenolol to 100mg instead of 50mg. I had side effects from the warfarin, but stuck it out as I didn't want to try any of the newer ones. So, I, too, got extremely depressed. I begged God to take me. But little by little I had to accept where I was at. I had to find a way to go on. I used to love sewing, but haven't sewn since Jan. The joint pain from the warfarin finally went away, but I do have "purple toe syndrome", occasional bloody nose and headaches. My biggest thing now is, I still have shortness of breath and bloated stomach. I think it is from the warfarin, but doctor won't listen. So I use my nebulizer at least twice a day. In the beginning, I spent HOURS researching everything. Now I limit myself to only a couple of hours. I think I am finally ready to start sewing again! Take my meds and try not to think about things too much. I am soooo thankful to have found this site! Just to know we are not alone, we aren't going crazy. I wish I could meet everyone in person just to give them a hug! So hang in there CurlyChrisCoach! And thank you Beancounter! I look forward to hearing from you and how you are doing. Many hugs and blessings!

Poodlewoman profile image
Poodlewoman

I purchased the Kardia Monitor after recommendation by the Heart Foundation. Its marvellous. Whilst in the beginning you do overdo the testing..... it does even out.

I live in the middle of nowhere, so the purchase of the Kardia device and also an Accucheck device from Roche for measuring my INR..... have been invaluable and in a way, put me back in control of my symptoms.

On a recent episode, which required hospitalization and chemical cardioversion, the reports from my Kardia were invaluable in aiding my assessment. I had emailed the ecg's to the doctor..... and to my husband, in case I couldnt get to my phone.

I tested my inr before arriving at the hospital so I was able to tell them what it was.

Also, because you can Guest record..... my mother in law who has never had any cardiac issues at all.... was taken poorly with what she thought was indigestion whilst out at a family meal. I got her to record three ecg's and sure enough she had gone into fast AF. So we were able to get her to the doctors early.

A very handy, reassuring little device that can really help with AF. Especially if you are following the 'Pill in Pocket' regime which requires you to monitor your attacks and lets you know when to take that second dose of Fleconaid etc.

So you will slow down the use of it....... but also remember that the journal it records could be invaluable in providing an overal picture of your own particular AF history.

Good luck🙋🏻👍🏻

Ria

KathFrances profile image
KathFrances

Hi Chris - When I first got my Kardia, I was using it frequently every day - couldn't stop taking recordings. But gradually the novelty wore off and now I only use it occasionally, maybe once every 2 or 3 weeks, if I feel a bit of a flutter in the chest. It's increased my confidence in reading the physical signs of AF, so now I don't need a Kardia reading to know whether I'm in sinus rhythm or not. I'd be surprised if your Kardia fixation stays at the same pitch for very long!

I don't have a Kardia machine but have considered it. I know exactly when I am in AF and when I am not however I find my BP/pulse monitor a very handy tool and from that alone can read the situation well. There are also times when I feel very unwell and that can have very similar symptoms to being in AF or building towards that firing and checking my BP/pulse monitor has given me the confidence that all is OK and also when to STOP if it is better to rest and let it pass naturally. It's natural for something new to me perhaps a bit overused (your words) but I hope like me and my monitor you can turn it into your 'friend' i.e. the useful tool to keep you sane whilst all the nonsense goes on in your body. I believe that it could be an invaluable tool. For me living with AF its not just about when I am in AF that I have a problem with how ill I feel then any tool that gives me confidence to carry on when I can barely put one foot in front the other is helpful..

One general question to the others who have replied to your question. My consultant wants the 12 lead ecg when I get my next AF alas my GP surgery has not been cooperative when I was there when one happened but I am sure all surgeries are not like that. Is a Kardia machine capable of giving the reading my consultant is after? I'm not clear and if it doesn't then no point me getting one and off to A&E for the reading I must go?

dabend36 profile image
dabend36

My EP used my Kardia Journal to confirm the need to do my ablation. Almost like proof for the insurance company. Also, not sure if it was mentioned but "unclassified" results are probably because your pulse was under 50. Whenever mine is under 50, that's what I get. The EKG, however, is valid. It just declines to assert that you are "probably" in AFIB.

Nanfranz profile image
Nanfranz

On the subject of "ectopics or afib?" It would be interesting and helpful to hear from those who are aware of their afib episodes, what afib actually feels like. My first known episode was during the high stress time of taking care of my husband in his final years. I woke in the night with my heart racing, blood pressure very high, along with skipped beats. Not knowing what was going on I called our Nurse Hotline and she told me to call for an ambulance. The paramedics were here in a few minutes with their portable EEG machine. . . which showed that I was in and out of afib. The printout sure showed the difference! I haven't had any more episodes exactly like that one and still tend not to know whether what I'm experiencing is afib or ectopics. So I for one would be very interested in hearing what afib feels like to those who know.

Redhead1949 profile image
Redhead1949 in reply toNanfranz

Dear Nanfranz, what is the difference between A-Fib and Ectopics? I hear people talk about ectopics all the time. Even though my doctor in the hospital said I was in A-Fib all the time, there are times when I have real trouble breathing and I know my heart isn't right. So if my heart is in a-fib all the time, what is it I am feeling, a faster a-fib? Anyone else out there know? My very best to you Nanfranz. Hugs

Curlychriscoach profile image
Curlychriscoach

Some great feedback, thanks. My take aways:

A useful tool for recording instances of irregularity

Dont get hooked on it... it is added information to what we feel not the be all and end all

Helps with gaining some certainty and therefore can reduce anxiety and increase confidence

Handy for sharing with Doc and for checking symptoms and timing with taking meds

There are better recording methods - 8 and 12 lead ECG

Learn to know the differences in irregularities - ectopic, AF etc

My experience of ectopic and AF, bearing in mind I have never had other symptoms, is a similar feeling in my chest from both but a different reading at the pulse.

Ectopics appear as missed beats, a hesitation, at the wrist pulse. Every 3, 7, 10, 4 and you get the idea.

AF appears speeding up and slowing down and an irregular number of beats but they are are all happening, just difficult to count.

I am guessing there are different reading with different people depending on underlying conditions etc?

Tvm All

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