They Do Not Believe You. Get a Kardia!

[mjames1]

So I had a video appointment recently with an ep. Unfortunately, some of my medical records did not arrive at his office on time, so he only had partial records. He had some ekg's that showed flutter, but he couldn't find one with afib.

I explained to him that I have a 40-year history of afib progressing from one episode every ten years to three episodes a month. Talked about how I tried various lifestyle interventions and a one-year trial on flecainde and diltiazem, Told him I didn't tolerate meds very well, etc, so I've finally come around to ablation. Something that has been suggested to me over the years by other ep's but until now I was resistant to. AND that I'm sorry he doesn't have the ekgs in front of him, but that have them documented with several 12-leads at ep's offices over the years AND multiple single and six-leads at home with my Kardia.

He just gave me this look. "I don't see it here, you don't need an ablation", he says.

I consider myself above average knowledgeable and conversant about afib, but was treating me as an idiot and I almost lost it. Ironic after avoiding an ablation for so many years even after ep after ep told me to get one, here is an ep telling me I don't need one!

But to move the discussion along, and after several deep breaths, I said, "Can we proceed the visit under the assumption that I have had multiple documented episodes of afib and that I will email you as soon as this visit is over? I thought that was very contained, I mean someone has to be the adult in the room?

He didn't bite, just that blank stare. "Sorry, I don't see that you have afib".

But I kept talking cause it looked like he was ending the visit -- but then, as he must have been scrolling through computer screens while we were talking -- he says, "Oh, I found an ekg with afib, I guess you do have afib".

DUH

The rest of the visit went well and I promised I would email him my afib ekg history after the visit. He said, "Oh, just send me a recent one". Sure. After what he put me through, I'm going to send him 50 ekg's showing afib!!!

Back to the Kardia. They just don't believe you, but they do believe an ekg. Get a Kardia and you will be taken seriously seriously. Many have been denied needed treatment for years because doctors did not believe them.

Jim

[jeanjeannie50]

So annoying for you Jim. Well done for keeping your cool.

Yes, it's always a good idea to have some evidence with you that proves you have AF etc. Whenever I have an ECG I always ask for a copy. Fortunately at my hospital the consultants still obtain, from storage, folders holding paper copies of medical records, as well as being on the hospital internet.

Jean

[mjames1 in reply to jeanjeannie50]

Should have asked him for a copy of his medical school diploma so I could have documentation that he really is a doctor Would it have been so hard for him to at least acknowledged that I may indeed have afib but he just doesn't have the ekg's in front of him.

[jeanjeannie50 in reply to mjames1]

What a good idea, yes he could have been a cleaner for all you know.😅😂

[CDreamer]

Been there, got the T-shirt. Patient persistence pays - in the end!

I tackled a doctor having gone through a similar procedure and thankfully he was patient enough to explain to me that it wasn’t that they didn’t believe me, just that they couldn’t schedule a procedure without documented evidence.

Fair enough - thankfully Kardia worked for me as well!. They got there evidence!

[LPE44]

Apparently you need to be fainting in front of them! But seriously, when I was finally in persistent Afib to the point where I couldn't make it across the room to the BR without sitting down half-way there, I was believed. Plus my previous ER visits when my records finally got sent.

As to the EP you mention, I hope you found a different one! Sometimes evidence based science gets in the way of actual good doctoring - and that can make all the difference.

[Buffafly]

Even a 1 lead is helpful. I used to have pauses when I converted. One morning my heart was pausing over and over and luckily I was still in bed and had my kardia handy and was conscious enough to record a few minutes. My GP was very scornful but reluctantly referred me to a cardiologist who was very impressed and referred me to an EP who phoned me on a weekend and told me I was either having a pacemaker or an ablation, choose.

Very impressive handling of the EP!

[Ppiman]

Fascinating!

I'm waiting for the low cost version of the new Wellue home monitor to be approved as that seems to offer far more than the Kardia in terms of AI ECG analysis (free of charge, too). The Kardia is good mainly for AF itself, it seems to me, but at £10/month.

Steve

[MaryCa in reply to Ppiman]

But I have a 6l kardia. I don't pay the subscription. AFib is irregular, no p wave, not hard to see on an ECG. No need to be paying kardia anything extra

[Ppiman in reply to MaryCa]

Yes - I wasn’t very clear there. Sorry. If the only issue with the heart is occasional AF, then I agree with you.

Steve

[mjames1 in reply to Ppiman]

You get free AI ECG analysis on afib and a few other arrhythmia's with Kardia. The monthly fee is for a few extra determinations such as "Wide QRS" and some other perks. At least in the US. But as mentioned, the ECG's are easy enough to read by themselves without the AI analysis at least for afib. Beyond that, not sure how much I'd trust AI, anyway. EP's generally ignore AI analysis, even on the 12-leads.

Jim

[Ppiman in reply to mjames1]

Hi Jim

I have a wide QRS and LBBB and Kardia regular reports only “inconclusive” unless I pay the monthly fee. The Wellue looks to be a potentially much more useful home device to me.

Steve

[mjames1 in reply to Ppiman]

Not sure I'd trust AI on either Kardia or Wellue, Even afib can be off. What I do like with Wellue is 24/7 monitoring. Customer service seems non-existent, however. Emailed them a question a week ago and have not heard back. Still may get it for the 24/7 feature.

Jim

[Ppiman in reply to mjames1]

Thanks Jim. I didn’t expect there to be other than AI available, medically, although I have found their customer service to be efficient. If I bought one and it were to show anything untoward, I would send it to my doctor for comment. The Wellue analysis looks accurate and comprehensive, though, and it is included in the cost of the device which, as you say, can be used over a long period to catch the many events a Kardia is likely to miss, perhaps especially during sleep.

Steve

[momist]

Hmm. My middle name is a fairly common surname, it's a family tradition for the eldest son. My real surname is also a common first name. However, in the past, this has lead me to having three separate medical records - at the same hospital - due to different combinations of my real surname, middle name as surname, and complete name.

[frazeej]

AMEN to your Kardia suggestion! Saved the day for me!

[AussieHeart]

RUN to the next EP. I wouldn’t waste my time sending him EKG’s. I’d want an EP who took me seriously to carry out a major surgical procedure such as an ablation. You should have been discussing Cryoablation versus radiofrequency ablation to decide which is best for your circumstances. RUN, RUN or get another opinion at least.

[mjames1 in reply to AussieHeart]

I hear you, but part of the problem was on my end, not checking to make sure that my files arrived on time. I just wanted to use the incident to highlight the importance of documenting afib, or any arrhythmia for that matter, because as you know, by the time you get to the hospital or doctor's office, you may be in normal rhythm. No doctor is going to do an ablation without seeing it on an ekg, not should they. He did check many of the boxes, so not going to put on my running shoes yet, but thanks for the concern. Oh, I did email him the ekg's earlier today and just heard back that it is now confirmed that I have afib and therefore qualify for an ablation. Who would have known

Jim

[Hidden]

Your collected response is commendable, Jim - I would have been strongly tempted to respond more forcefully! It never serves me well so you did the right thing.

I was very lucky in that my first AFib episode was captured by my new Apple watch. I'd done an ECG a couple of times for the novelty value but couldn't really see the point of it as it says categorically that it doesn't diagnose a heart attack and I was blissfully ignorant of arrythmias. So when my heart started banging around like a box of frogs in my chest I remembered the ECG and was promptly advised that I was in Atrial Fibrillation. I called 111 but fell asleep while waiting for them to call back! Woke early next morning and drove to my nearest A & E but by the time I got there I couldn't feel anything and would have gone home had my watch not assured me I was still in AFib. I went into A & E and they immediately captured it with a 12 lead, at which point normal (sinus) service resumed. Had I not been there it's doubtful I would have been diagnosed for quite a while as I was only having one episode every 4-5 months.

Since then I've got myself a Kardia too - so I'm covered! But it's really shocking, and sadly very common, that medical people don't believe us.

[doodle68]

Well done standing your ground mjames . Why of why are things often made harder than they need to be for AFers

When I first got my Kardia some years ago doctors dismissed it , now the EPs arrhythmia nurse says 'can you send over your Kardia readings please' .

[lovetogarden in reply to doodle68]

I’ve had that experience too. Some medical folks were interested in the “new fangled” device, others dismissive. I was impressed w the EP who did my procedure this week, he asked for the Kardia readings and scanned through them on my phone. I had to chuckle at one dr who started to explain the Kardia device to me, but he’d totally forgotten that I was the first person to show him one a year or so earlier. He’d even done his own ekg on my Kardia. 😂

[kkatz]

OMG I would have totally flipped.So glad you eventually got through to him.I have an American version of kardia called emay.Single lead but arrythmia nurses seem to accept the readings.Just as well as I have had no NHS tests since my failed CV a year ago.

[Desanthony]

Well done there. Let's face it he wasn't really ready for your consultation was he? I always get annoyed with this. When I was first diagnosed 6 or so years ago I had appointments to see the GP and the number of times I then saw a locum who had no idea about the whole practice let alone me. Eventually I asked one of them if they had actually read any of my notes before the appointment and she basically said "don't be silly I have no time to do that" so I said well its hardly worth coming then as by the time I explain to you everything you should know there is hardly anytime left in the 10 min consultation. To be honest she didn't even have notes on the desk so how or a laptop so I was already wondering how on earth this consultation was going to progress. Having said that I also had an appointment with another young locum who had also seen me when I was admitted to A&E with AF when she was a locum in A&E and she was absolutely marvellous - took time to listen and explain and suggest things to try and help. You are right you do need your own evidence of all sorts of things. For about 15 years my wife and I have asked for copies of all letters sent between GP and consultants and got copies of tests and scans from hospitals and take them with me to relevant appointments as there are many times that the lap top in the consultants office cannot access a scan for some reason but I have it on a DVD in my folder and that DVD always works. We started doing this when my wife found that a consultant had actually asked for her to change her asthma medication and sent a letter to the GP which had been filed and not actioned. It was quite by accident that a new GP at the surgery 5 years after the letter had been sent asked my wife how she was getting on on the medication as she hadn't asked for a repeat prescription in the last month - she had never had the prescription. We have to remember to be proactive.

[Desanthony]

I forgot to add that also 6 months after I had finished my radiotherapy for prostate cancer it had not been put on my GP notes - I know because I got a private consultation with a cardiologist and needed a medical history from the GP surgery. I collected a printed document with a medical history in bullet point form and there was no mention of PCa diagnosis, Hormone Therapy or Radiotherapy received. So we need to check that everything gets noted too.

[lovetogarden]

omg! I’ve run across drs that don’t want to take me seriously too. But the way that dr treated you is inexcusable. Glad it worked out in the end, but still, how aggravating. Not a way to develop trust.