marmite1
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marmite1, April 6,  2021  2:35pm EST

Newly diagnosed Afib

Hi Everyone,

My name is Ruth and I am 66 years old and just been informed that I have Afib. I don't have many symptoms, I just get more tired than usual. When I am in Afib my heart rate is about 140-160 and I stay that way for a day and a half at times. Is that of concern? Will it cause heart damage? I am on metoprolol, diltiazem, and eliquis. I am being evaluated for sleep apnea and I have been told that I am a good candidate for the cardiac ablation. I have had my first appointment with the electrophysiologist, but now I am just left sort of "flapping in the breeze" so to speak. I wore an event monitor for a month and have just called for those results. I am worried about the high heart rate going on for such a long period of time before it normalizes. Am I right to be concerned?

Thank you for any advice.

 

 

6 Replies
  • AHAModerator
    AHAModerator, April 6,  2021  5:22pm EST

    Hi Ruth, 

    Thank you so much for sharing your experience with the MyAFibExperience community. I am sorry to hear that you are more tired than usual but glad that you aren't having many other symptoms. As you wait to hear from others in the community, I can share with you some resources about Lifestyle Strategies for AFib, Sleep Disorders, and Ablation.

    Please keep us updated on how you are feeling!

    Best wishes,

    AHA Moderator 

  • Thumper2
    Thumper2, April 7,  2021  9:32am EST

    Hi, Marmite1 !  Welcome!  It sounds like you are on a good start to dealing with your AFib -- you're seeing an EP, you're taking a blood thinner, you've gotten a suggestion that an ablation could be a good thing (and if you have sleep apnea, treating that should help any ablation be more effective).  You're right to wonder if your AFib could be damaging your heart--that's a possibility, but IMHO generally the damage occurs slowly, over some years (that's what happened to me).  I think you could "push" your EP for more information and possibly an appointment for an ablation (assuming your EP has done hundreds of successful ablations).   Sometimes, ablations are described as the nearest thing there is to a "cure" for AFib.  Keep reading on AFib -- go to   StopAfib.org    for lots of information.   Keep us posted!

    Thumper2 (Judy)

  • DkinAA
    DkinAA, April 7,  2021  3:56pm EST

    I am not a doctor, but based on my paroxysmal afib experience, and what I've learned on this site and at stopafib.org, maybe your dosages need adjustment. I was on diltiazem & eliquis for a long time, a standard "rate control" approach of keeping the heart rate down during an episode with the diltiazem, which is considered to be a good idea. Beta-blockers, like metoprolol, are also used a lot for rate control.

    Later, my EP clinic moved me to a "rhythm control" regimen which added propafenone to the mix, which reduces the frequency of the episodes, but didn't stop them completely. So I was also given a beta blocker (propranolol) with "pill in the pocket" instructions to take it "as needed if in afib and heart rate is above 100."  I noticed that it felt a lot better just to keep the HR down during an episode.  So maybe it would help to have a higher regular dose, or an as-needed extra dose, of the metoprolol.  Be sure that your EP is aware of your heart rate observations, especially since you are concerned, and double especially if it affects your ability to function.

    From what I've seen, there doesn't seem to be an agreed-upon guideline for how much proxysmal afib is OK before your heart takes too much damage. Apparently they don't have a clear idea about the urgency of fixing paroxysmal afib because until recently, it wasn't feasible to do long-term monitoring of paroxysmal afib patients.  For persistent or permanent afib, the consensus seems to be that an ablation would be a good idea, and the sooner the better. And even with paroxysmal afib, if your quality of life is poor because of the episodes.

    And dealing with sleep apnea can help a lot, both with the afib, and better sleep!

    Check the resources here and the excellent videos by experts at stopafib.org - a good way to learn about our condition.

    Please let us know how it goes!

  • marmite1
    marmite1, April 7,  2021  4:12pm EST

    Thank you for your detailed response. I called my cardiologist office yesterday to ask if they needed to adjust/add/change my medications. I had to leave a message with the receptionist and I haven't had a call back yet. Not sure I will at this point. I was told by the nurse at my EP office that their policy was if my heart rate was over 110 and I wasn't feeling well that I needed to go to the ER. If I did that, I would be there pretty much every other day. Seems like a very impractical solution. She was very condescending......not at all what I needed. I have only (knowingly) been dealing with this for a month, so I'm still finding my way and I was more frustrated after speaking with her. Hopefully, the apnea will be resolved by the beginning of May. Then my EP will schedule me for the ablation. I have to admit, that procedure scares me, but I also don't want to live with the constant in and out of Afib. It makes me very lethargic......not the normal "me" at all. 
    Thanks so much for taking the time to respond. I'm feeling sort of alone in this new world I have found myself in. 
    I will definitely keep you posted. 

  • Thumper2
    Thumper2, April 8,  2021  8:46am EST

    Marmite1 (BTW, does this name mean you're a Brit? or an Aussie?)  You are right to feel annoyed with failures to respond to phone messages, condescension from nurses, etc.  As DKinAA and I have recommended,  more self-education may be helpful.  We both recommended checking out    StopAfib.org.   And if you really would like to see what the annual conferences that Mellanie organizes are like, you can take a free look at the 2018 one:

    "- Livestream replays from the 2018 conference (free, thanks to a sponsor): https://getinrhythm.com/2018-livestream-registration/"

    If you're not sure that your EP has a good record of successful ablations, you might ask for a second opinion.  In the USA, area EPs can be found here:

    "The best way to find a local EP is to search at the Heart Rhythm Society (the EP medical society) at https://www.hrsonline.org/find-a-specialist"  [info. also from Mellanie]

    As for ablations, most of us here have had one or more and have not found them to be difficult.  Some have gone home the same day; others, the next day.  But some apprehension is, of course, normal!   As for sleep apnea, I hope you get a sensible response from whatever tests you may take.  (I didn't, but that's another long story.)  I'm glad you'll keep us posted!

    Thumper2 (Judy)

     

  • MellanieSAF
    MellanieSAF, April 8,  2021  11:38am EST

    Judy, 

    Thanks for sharing the link to the 2018 conference videos. Let me provide an even simpler way to access them (as well as conference videos from 2019 and all the way back to our first conference in 2013). They're all free.

    They are in the StopAfib.org Video Library, which is an organized learning management system (LMS). The LMS software requires that you set up a sign in, so we tried to make that easy. If you go to https://stopafiblibrary.com and provide your name and email address, our system automatically sets up your account and all you have to do is set a password in order to access the library. (You'll receive an email with the easy details for accessing the library.)

    All,

    If I might add a few resources to help those who are newly-diagnosed:

    1) The 2013 conference is a great overview as it is a compact half-day program of four hours to you give you the basics.

    2) One of my favorite talks for those newly-diagnosed is the 2015 Opening Keynote by our dear friend Dr. John Day who is the former president of the Heart Rhythm Society and is always on the AHA Scientific Sessions faculty. (2015 was 1.5 days so it is also more compact than all the rest, which are 2.5 days.)

    3) We have lots of free webinars, but a great one for those newly-diagnosed is the one by Dr. Emelia Benjamin (who is very active with AHA) about the role of lifestyle and prevention in managing afib (it's titled Afib Genetics, Risk Factors, and Prevention Webinar).

    Sorry I've been away so much - I'm buried working on the 2021 patient conference. We have a planning meeting today with our event planning company that always helps us put on the conference and that is a very time-consuming process for us all. 

    Mellanie

    P.S. While American Heart Association/American Stroke Association and MyAFibExperience have been co-sponsors of many of our patient conferences and most of our faculty are members of AHA and faculty at AHA conferences, AHA is not endorsing the conference content. StopAfib.org is only responsible for the list of topics that we ask the faculty to present about; the actual content presented at the conference is the sole responsibility of the individual faculty members. 

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