Requesting some stories from AliveCor users

Hi All,

I have been asked to be on a small panel at the upcoming 2015 SXSW Music/Film/Interactive Festival in Austin this weekend joining two doctors, one with WebMD and the other a NYC ER phyiscian and with me as the typical patient enduser while we explore the promises and pitfalls of the new Biometric revolution in health care and medicine.

My roll will be in discussing the benefits as well as any improvements that might come in handy for the ALiveCor and/or any similar or future versions of such devices.

I certainly have a few vignettes from my own experiences with the ALivecor to share but would very much appreciate if any of you who use the Alivecor could share ways in which is has made your experience with AFIB a bit easier, more reassuring or handy in some way and if there is anything you would like to see with this technology and other similar wireless digital devices that are exploding on the scene.

We will be discussing some of the potential pitfalls as well such as potential data overload for doctors if people abuse the privilege and send in endless amounts of ECG strip charts for every blip and wiggle. And the appearance of loss of authority that might be felt by some physicians with now patients increasing able to monitor, and even in some cases diagnosis more or less, conditions previously only under the control of a formal doc to patient relationship, and both the advantages and disadvantages of such a scenario for both patient and caregivers alike.

Anyway, if any of you can share a brief vignette of your own and an example of how ALivecor came in handy for you, either here in the forum or via a PM to me if you prefer to keep it private, I will pick a few to share with the audience (entirely anonymously of course) this weekend and at the same time you will be helping me fill in my portion of this three person panel speaking for an hour there this weekend.

Many thanks in advance!

Shannon

Also, while on the topic of Alivecor monitors, Mellanie True Hills of Stop AFIB.org has asked me to relay to those here planning or thinking about attending her patient oriented AFIB Conference in Dallas the last weekend of this month that they have a special offer for Alivecor monitors you will surely want to know about, Below is an except from Mellanie's post to me for you all to read on the offer.

' ...Folks who are attending our patient conference can register for a free AliveCor ($75 value), and 100 of them will be given away. That makes attending the conference even more of a bargain. Here is our news story about it in case you’d like to share this update with the AFIB Forum: Stop-AFIB Conference Alivecor Give Away'

Sounds like a bargain for those first hundred who can make it, in addition to the conference itself.

Shannon



Edited 2 time(s). Last edit at 03/10/2015 07:11PM by Shannon.

Shannon,

Without going into all of the details, I'll try to briefly summarize my experience with the Alive-Cor.

Being asymptomatic, I had no idea when I was in afib or when I was in NSR. I would often feel my carotid---sometimes normal, sometimes irregular. I often suspected afib, but I had no way of knowing for sure. I couldn't buy an ECG machine or go to the doc everytime I felt an irregular pulse. I continued to live my life and exercise as normal without a problem.

When I found out about the Alive-Cor device, I was elated that such a portable device could help me identify afib. I think I bought it in early October and immediately began using it. I didn't use it so much when my carotid pulse felt fine, and used it more when it felt irregular. This likely skewed the percentage of afib identified on the weekly reports.

It was a big pleasure for me to be able to identify that my irregular rhythm was indeed afib and then communicate how much I had been having with the local docs. Otherwise, I would have likely simply told them that I had felt fine during these periods. Having the Alive-Cor has been a big win for me.

I had an old Iphone 4 laying in the drawer so I purchased one of those when they were clearing out that model---around $50 I think.

I sent the first reading in because it was free----but I've never sent another on it.

I shared the info with the local EP and he said he liked them. Dr. Natale didn't seem as enthusiastic when I saw him this past January.....I think because sometimes it can be difficult to get a good reading.....and it certainly isn't a replacement for a regular 12-lead ECG. However, for me, it was a great tool to give me peace of mind. I woke up almost every day in NSR and enjoyed seeing that nice P-wave, QRS complex and T-wave. Too bad it didn't last all day. I tried to use it as a tool to help me identify triggers that were causing me to go into afib----but I was unsuccessful.

Anyway, I give it a big "thumbs up"! I really enjoy the weekly summary and being able to log into your account and seeing the history----all for the simple price of the initial purchase.

Have fun at the festival!

I hope all is well with you and Mag!

Best wishes.

Ken

Thanks a bunch Ken,

I really appreciate your insights on how the Alivecor has worked out for you.

Take care,
Shannon

HI Shannon - as you know, I started using the AliveCor at your recommendation, sometime last year, I believe. While I had AFib for 10 years and could feel it when I had it, I never used it then. However, after I got Flutter last Spring, it was a relief to have something I could send to you in this case, and get feedback to be sure it wasn't someting that warranted more attention. (I did have my flutter ablation a few months after that)

I was using the event recorder which was sent to me by Dr. Natale's office, after my flutter ablation - and used it at least once/week or anytime I felt things were feeling a little "funny". All was fine and I'm about to send that back. I like the Alive Cor even better as it makes NO noise - unlike the event recorder which is quite loud - and because I don't have to call my recordings in (and often wait awhile to get someone on the phone), AND because I get immediate feedback. AliveCor now has a feature that tells you right away if all is normal or not. How reassuring to quietly take a reading, and get a message to let you know all is OK! I much prefer this way of recording. Also..I won't be charged by my insurance company for the time I have the AliveCor - or for anything at all regarding this. I also like that it tells me my pulse rate.

btw..I had an IPhone 4S for awhile with the appropriate AliveCor attached to it on the back. When I upgraded to the IPhone 6, I thought I would have to buy a new AliveCor. Turns out there is no need to do that. If you don't mind having the device as a separate item and not attached to your phone, you can keep the older version (like I had for the Iphone 4) and use it on the newer phone. Just place the device no more than 10 feet away from your phone and hit "record". Very handy. For those who are likely to lose their AliveCor if it isnt' attached to the phone, then you might want to buy the newer version for a newer phone.

I"m a fan!

Thanks ~ Barb

Thanks too Barb,

Just to let you all know the panel talk with me, Dr Robert Glatter a skilled Trauma MD at Lenox Hill Med Center Emergency Department in NYC and Dr Michael Smith Chief Medical Editor for WebMD went very well! We got a lot of very nice feedback for our over an hour discussion on the Promise and Pitfalls of the biometric device data revolution in which I discussed the many pros of the AliveCor and the one big gotcha of potential overwhelming overload from too many strips being sent in to very busy EP staff for every little hiccup that is felt in the heart.

Both I and Dr Glatter emphasized the need for a new field to mature and that us already springing up, to manage to huge droves of such instant biometric data and act as a buffer and intermediary between doctors and patients in which doctors and their staff get only the essence of what they need to know, and patients are trained not to go overboard with every little squiggle sending in an ECG.

There is also the legal issues too, one of my friends from a prominent EP and ablation center in Utah shared with me the scenario in which a huge stack of AliveCor strips arrive at his desk and say only two of them show a few seconds of a brief burst of AFIB... When you technically need to see 30seconds of continuous AFIB to confirm a diagnosis of real AFIB. Let's say you follow guide lines and do not treat the person and then they wind up having a stroke .... It sets up a potential legal quagmire.

I think too the 4 new handy detector algorithms that AliveCor has recently released will greatly help slow the data Avalanche on already very busy top
Level ablation centers. As Barb noted, being able to see instant confirmation if you are in AFIB, are Normal (even better!) or if it's too noise and must you repeat the ECG or if it the reading is indeterminate meaning it is likely another arrhythmia other than AFIB and not NSR, which is a good reason to send that to your doc for eval,.... Anyway these are very welcomed new additions that elevate AliveCor to an even more useful tool.

The fact that they have responded to the weak link in the original version is worth big kudos to AliveCor in my view!

Alas,, just half an hour before we went on stage to give this talk when our group panel were in our assigned green room. (We felt like we we're getting ready for a Jay Leno appearance) I get a text from Magdalena that she had meant only for my brother Walt and expressly asking him not to tell me until after my talk was over, that her 89 year old mother in Kelowna BC Canada had just had a stroke while Magdalena was talking to her on the phone!

She sent the text to both Walt and me by mistake, not realizing it was a group text address, so I called right away before the talk and Magdalena is flying up to Canada shortly as well for an indefinite period and I may well have to go help out too for some time after I return for a must business trip back to Hawaii the first week of April that has been long overdue. We just don't know yet the extent of her communication disability though she was starting to get some speech back this morning but it's still way too early to know when she can leave the hospital. They start the stroke rehab today or tomorrow and said expect a minimum of two weeks in the hospital.

Her mom has been very independent and lives alone, but that may well now be coming to an end. It's never good timing for something like this but we were both hoping for a good break on medical stuff for us both for the next year, knowing too that Magdalena needs to have her own hysterectomy and ovary removal as soon as possible which we we targeting for mid April when I return from a whirlwind non stop trip of errands to Hawaii for 8 days starting March 31, after she is fully recovery from her nephrectomy. Magda is doing much better now but still not 100% by any means.

Anyway, no rest for the weary as they say....

Shannon



Edited 1 time(s). Last edit at 03/18/2015 12:07AM by Shannon.

I am new to Afib but have a heart that has skipped jumped and bumped its way through the last 15 years or so: my HR is regularly irregularly irregular!! For the few days that I have had Alivecor I have had the ability to know that I am back into NSR. My practitioners are able to see aspects of what happens to my HR at various points in my day. I am used to taking charge of my won progress and this is another tool that allows me to do that.
Les