Should I get a Kardia?: I’d be grateful for... - AF Association

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Should I get a Kardia?

Plantome
Plantome

I’d be grateful for thoughts on whether I should get a Kardia. My wife thinks I am prone to anxiety but I can’t help thinking my anxiety symptoms could be due to my heart condition.

I was born with a hole in the heart which was repaired when I was three, but led to subsequent arrhythmia - both VF and AF - in my late thirties. I now have a meditronic ICD and am on the carelink system. I have had two ablations.

I know the carelink system should in theory pick up on arrhythmias automatically but I’m not convinced, as the thresholds set by my cardiologist may be too high for ‘small’ ones. I don’t want to bother my EP with regular manual uploads so was thinking a Kardia would be the answer. But my wife thinks it will just feed my health anxiety and I’ll become fixated on measuring my heart rate.

I’d be grateful to know whether the Kardia is likely to work with my condition - my resting heart rate is 65 - and the experiences of those who are also prone to anxiety.

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I think there is doubt whether you should use a Kardia with your ICD. Inaccurate readings? Certainly check with your cardiologist first.

If you ARE able to use it I can thoroughly recommend. I like it for the reassurance it gives me when I feel something funny starting up. Yes, you can get a bit obsessed with it at the beginning....new toy !! ....but the novelty does wear off !

Since I bought the Kardia I would say I am more relaxed about my condition and less concerned.

It will be interesting to hear whether you get the go ahead from your medic.

Regards

Sandra

Thanks for your advice/comments. I hadn’t realised that the Kardia could interfere with my device so will definitely get that checked out with my cardiologist. Also, my anxiety symptoms, when they recur, are too long-lasting to be solely due to occasional arrhythmia (I don’t have permanent afib) so minded to think it’s more in my head than my heart!

Hi there, I spoke to a Kardia rep about this at the last AFA patients day and they said that the ICD can interfere with the reading and so I shouldn't bother. They also said I don't need to use it anymore as the ICD should pick everything up.

I then went to speak to the Boston Scientific rep on the stand next door and they said that the ICD should pick everything up, even the 1-2 beat arrhythmias. Indeed, that seemed to be the case at my last device check so I don't use my Kardia anymore, even if it is a great piece of kit and actually captured the dangerous NSVT which led to the ICD in the first place.

Hope that helps.

Plantome
Plantome in reply to Pikaia

Thanks for that. Really helpful. I get a monthly report through the carelink system from my EP which is usually absolutely fine. but I’m not clear whether I have to wait for this report if I get sensations mid month or whether they will automatically be uploaded there and then. I think for serious arrhythmias they get notified immediately but not for less serious ones. But the less serious ones can still leave me feeling anxious! I could do manual uploads when I get these sensations but I don’t want to keep crying wolf if there’s nothing wrong!

Do you have objective evidence the thresholds are set too high? Sounds like you need to talk to the pacemaker clinic.

Plantome
Plantome in reply to oyster

No, although I only get notified of short episodes of AF or VF in the monthly report, not when they occur.

It sounds like you have few if any symptoms that require further intervention. Your continuous implanted monitoring suggests that any theoretical benefit of a Kardia device at present is outweighed by the likelihood of pointless rumination over the interpretation and significance of your recordings.

Hi Plantome,

Although I won't give 'advice', I can tell you what it's been like for me with my Kardia. I've had a 10 year history of intermittent AF and one cardioversion. Been on anti-arrhythmic drug Flecainide all that time. Now also anti-coagulant Apixaban. That drug was only added when, early last year, suddenly I was getting woken up every night by racing heart doing 100 (my normal is 50 - 55 when asleep in bed, so that's nearly double what it should be!). When I'd wake all my muscles were tight, my jaws clenched (broke a molar) as if I was in fight-flight intense anxiety. But the odd thing was, when awake I was not in anxiety about anything. But after a month of being woken, losing lots of sleep, nosebleeds, worry about the drug, a few all-nighters in the ED, plus a splitting 24/7 inexplicable headache, I WAS starting to get very anxious - about my health!

The doctors were baffled. I had tons of scans and blood tests, and all they found was my vitamin B12 level was way too low. But the symptoms went on even after we got the B12 sorted with supplementation. Another problem was that by the time I could get to the ED in the middle of the night, whatever had been going on had stopped so no-one knew if I'd been going into AF. But my pulse was never arrhythmic in this time, just way too fast. Then it started doing it every day with the slightest movement, like bending to smell a flower, or hang up washing, or even turn over in bed. It was debilitating and scary.

After 4 months of that continuously I was a tired, worried wreck. My doctor was concerned in case I was getting bursts of VF (because Flecainide could possibly end up causing that) and at risk of dropping dead. Talk about worry! So.... I figured, I need to keep track of what my heart is doing all the time, so as soon as it starts racing I can record it, then at least I'll have something to show my doctors. Also, if it turned out to not be fibrillation, then I could monitor for say 6 months and if all's OK maybe consider reducing the drug. So I researched monitors deeply. (I'm a scientist, so it's second nature.) I liked one that was way out of my budget, but lots of people on patient forums liked the Kardia as an alternative that's specially designed to pick up AF (and some other arrhythmias I think). There's some good clinical reviews - it seems to be very well regarded by cardiac electrophysiologists as giving a clinical-quality one-lead ECG. So I got one in Australia for AUD$200 and an iPhone 5S to run it.

It's been a fantastic, worthwhile investment. I could get readings every time I was concerned, and guess what? Always normal, just fast. I could stop during my early morning walk when I got half way up a hill and my heart was racing, and do a reading to check whether I was fibrillating from the exercise, as that had been a big concern. All normal. I can wake up tense in the middle of the night after a bad dream, heart racing, do a reading - normal. I showed my doctor, she's impressed. Several great things have come from this: 1. My anxiety about my heath has dropped down, down, and I'm not worried any more.

2. I feel in control of things, knowing that I can check right away any time, and if something does actually go wrong I can show my doctors what happened.

3. When my heart does race, because I now know it's OK, something about my nervous system, I can just deep breathe, let my body relax, run some cold water on my face and forearms, and get my pulse back to normal in a few minutes.

4. Because of that, the dread of having to drag flatmates out of bed in the middle of the night to take me to hospital is gone. Not to mention the dread of spending all night and next day awake in the ED with a line in my arm!

5. Even if I'm away from home, I can immediately email the reading to myself so I have all the recordings in pdf format on my computer that I can print or save to show my doctor. The basic plan stores them in the application's History for one month free, after that you have to buy Premium to get them stored. But by emailing right away, I have them all without having to pay for Premium.

So there you go. Bottom line is I love my Kardia, very glad I got it, very reassuring to have it. I also don't feel compelled to keep doing recordings any more, because I pretty much understand what's going on and it's OK. I sleep fine most nights.

I hope all that helps.

cheers

Right after sharing my Kardia story with you, I noticed another person's comments about you having a defibrillator. I don't have one. So I can't comment at all about Kardia when you have a device implanted. Definitely a good question for your doctor. AliveCor who makes it, have a section on their website for doctors.

Thanks Dianne for taking the time to give such a detailed answer. Can I ask, before you got the Kardia did you suffer these ‘anxiety’ symptoms all the time, or only when you felt your heart was racing? I seem to be suffering them pretty much continuously - loss of appetite, slight chest discomfort, restlessness, tremors, general feeling of being unwell. I know from my EP reports that I am not in permanent AF so cannot fathom why, if they are heart induced, these feeling don’t going away when I return to normal rhythm.

Hi,

The anxiety got to the point where it was all the time, day or night. I had to keep consciously checking if my jaws, shoulders and leg muscles were clenching - all day every minute - and I had to unclench them as often as I could notice it. And yet the only anxiety was about my health and what would happen as a result of being too sick to work much. After most of 2018 with it, the symptoms slowly started to diminish but the underlying concern was always there. It's the Kardia that turned it around for me and once I got used to what my body was up to and seeing normal readings, I could relax a lot and get on with life. When I say 'get on with life', I don't mean go back to previous habits! I am much more aware and tender towards my body and what it needs: early to bed, no late meals, no overeating, no late TV, gentle balanced exercise (mostly walking and some swims), avoiding emotions, excitement, anger, etc, and of course no stimulants and no drugs (except the 2 meds I'm on). Part of evolving I guess!

Auriculaire
Auriculaire in reply to Plantome

Have you tried supplementing magnesium or getting your vit d levels checked out ?

I agree with Yatsura/Sandra's reply 100%.

After considering buying Kardia for a yeari bought it a month ago.

Yes, new toy at first but now using it much less - whenever I need to.

Big benefit is it REDUCES anxiety when you are feeling symptoms of AF but are not sure. It gives a proper reading of heart rhythm with clear results.

I have PAF, so have AF at unexpected times - usually wake up in the middle of the night with it. Sometimes in these conditions of palpatations, you can't tell whther your pulse is erratic or you just can't feel it properly. Last time that happened to me it had an elevated heart beat but NO arrhythmia. The result completely put my mind at result as I couldn't get a consistent pulse. I had awoken with GERD (acid reflux) a simple upset stomach. Sweats, palpatations and strong feeling of discomfort/anxiety.

Without the confirmation of Kardia I would have been more anxious thinking it was AF and after gaviscon and sitting up for a while I went back to a good sleep.

That certainty of result - no arrhythmia- gave me comfort as I think we all know that being aware of AF can perpetuate your anxiety, palpatatons or discomfort which might have started with a bad dream, indigestion or a sleep aopnea moment.

I wish I had bought it a year ago ! Its very easy to use and easy to carry (like a small credit card wallet).

Hope that helps.

Deacon L

Kellyjelly
Kellyjelly in reply to Deacon-L

Quick question, does it pick up atrial flutter or just AFib?

Deacon-L
Deacon-L in reply to Kellyjelly

Sorry, I'm not sure about that. Someone else might be able to give an accurate answer to that. I think it would pick up any deviation from a regular heartbeat.

Lets wait and hear from someone who knows 100% on that.

Kellyjelly
Kellyjelly in reply to Deacon-L

Thank you 😊

oyster
oyster in reply to Kellyjelly

Kardia will pick up many disorders of heart rhythm but the reporting function is only set up to identify “possible atrial fibrillation”, or at least that’s what it says on mine.

Think of Kardia as a single channel (Lead 1) ECG strip. Atrial flutter shows up better in Lead 2, right hand to left thigh recording.

It can be useful to send print outs to your cardiologist for reporting.

Kellyjelly
Kellyjelly in reply to oyster

Thank you

Z xxx a s2

For 30 years (I’m 43) I was told my palpitations was probably just anxiety as I was too young to probably have heart issues. 2 years ago I had an issue so bad they thought I had a heart attack at first. So my doc suggested inserting a loop recorder or ordering a Kardia. I ordered the Kardia and the next time I had an issue they were finally able to see I actually had SVT and needed an ablation. The ablation fixed the SVT but now I’ve have skipping it PVC, which I also use my Kardia for to keep track of issues or readings that I can show my doc at appts without having to run there every 2 seconds.

Kellyjelly
Kellyjelly in reply to JessMo

What a relief that must have been to finally get a diagnosis and the right treatment!

JessMo
JessMo in reply to Kellyjelly

So much!!!!!!!

All I can say is it made me feel more relaxed and less stressed......

I bought a kardia. Like you i have a lot of anxiety. It definitely shows if you have possible afib. Or a normal EKG. It will show unclassified if it can't tell you what it is that's going on with your heart. Sometimes I think all the extra information makes me more anxious but mostly I believe that it helps when I feel my heart acting a certain way and I'm anxious over it and it gives me a normal EKG. Of course when it tells me possible afib it freaks me out a little bit or unclassified as well. But all in all I think it's more helpful than anything I hope this is helpful in some way :-)

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