Artgirl46
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Artgirl46, October 13,  2020  8:10am EST

New to AFib

I was diagnosed with AFib 10 days ago.  It was such a surprise and I feel my life will never be normal again.I am 74 and was placed on Xarelto. I am afraid and so anxious that I'll go into AFib and have to go back to ER. I constantly check my vitals. I live alone and I'm afraid of dying. I've always been so active and feel younger than I am. My family acts like it's nothing. 
I have lots of friends and church support but I just can't constantly talk about my anxiety and fear. 
How do you seasoned AFIB people learn to accept and live with this disease.


 

7 Replies
  • dsavoie1953
    dsavoie1953, October 13,  2020  8:25am EST

    You do not have to live with AFIB. Go to StopAFIB.org and attend virtual conference in two weeks. 

  • Thumper2
    Thumper2, October 14,  2020  8:30am EST

    Artgirl46, it's normal to feel anxiety and fear, with the onset of AFib.   I know you want to get your active and younger-feeling life back, and the first thing I'd recommend is that you see an electrophysiologist (EP).  This is a cardiologist whose specialty is AFib.  (Regular cardiologists may not be up-to-date in this area, although I'm glad to see that whoever you saw put you on Xarelto, a "blood thinner".)    

    The next thing I'd recommend is that you educate yourself on what AFib is all about and the various ways it can be treated -- as dsavoie1953 said, "Go to StopAFIB.org and attend virtual conference in two weeks."  It only costs $47, and knowledge is power!  And it incidentally will give you more to talk about with your family, friends, and church folk!   The websites of the Cardiology departments at the Cleveland Clinic, the Mayo Clinic, and others are also very informative.

    You may be able to take medications that reduce the occurrence of your AFib, but, even so, I hope you will not decide to just "live with" AFib --- it's likely that your heart will quietly be degenerating.  A good EP can advise you on your options, and if he/she recommends an ablation, I hope you will consider it -- ablations are the closest thing to a "cure" that there is for AFib.   They are also a "procedure," not surgery, and generally are at most an overnight stay in the hospital.  

    Assuming you decide to go the route of ablation, make sure your EP is someone who has done hundreds of them successfully!  Lastly, if possible, be tested for sleep apnea -- there is some evidence that untreated sleep apnea will lower the chances of success of an ablation.   Please keep us posted!

    Thumper2 (Judy)

  • BethClark
    BethClark, October 14,  2020  10:48am EST

    As Judy says, it's very normal to feel a lot of anxiety and fear when you get an AFib diagnosis. If you read past posts on this forum you will find many posts from people new to AFib that are very similar to yours. My first post was very much like yours. My doctor told me that of all the heart ailments to have, AFib was the best because you can live a normal life with AFib. I didn't believe him at the time but now, 5 years since that conversation, I have found that to be true. The limitations resulting from my AFib diagnosis are actually the ones that I have imposed upon myself because of my anxiety about it. Five years ago I had two episodes, 4 months apart. After the second episode my doctor added Flecanide to the Metoprolol and the anti-coagulant I was on. Since then, no episodes. After my diagnosis it took me many months before I was comfortable even leaving my house in case it happened again. I am very symptomatic with my AFib so being alone and having to get myself to the ER when I felt so bad made me anxious. A few things that have helped. My doctor pointed out that the job of emergency personnel is to help people in distress. So I should call them if I needed help. He said that having an AFib episode is not an emergency; that people don't die from an AFib episode. Just to get to the ER within about 8 hours. When I was going on day trips I initiallly made sure that I knew where hospitals were on the route. Gradually my comfort zone for where I would be willing to drive widened because it had to; my son was in a hospital outside of my comfort zone so I had to go there. Some friends invited me on weekend trips and I knew that they would "have my back" if something happened. They are good friends so I know they would not feel like I was imposing on them (something I don't want to do). Here 5 years later my anxiety about it isn't completely gone because I am still limiting myself some. I haven't been willing to go on public transportation because it would be a hassle to deal with AFib if I were by myself. I haven't been willing to fly for the same reason. But these are limitations I've imposed on myself. (I have to say that after being stuck at home because of the pandemic I'm rethinking how I've been keeping myself at home.)

    It will likely take a little bit of time for your doctors to work out your best treatment plan. Usually the doctors start out giving people drugs to control the AFib. You'll hear people talking about ablations; that's another type of treatment that is very helpful for some people, and sometimes must be done more than once for success. Educating yourself about this condition is really key. This forum is very helpful. There is a lot of information on the website. The virtual AFib conference is just around the corner.

    You're in fine company here. Keep posting.

    Beth

  • DkinAA
    DkinAA, October 14,  2020  2:22pm EST

    You've seen some good advice from other afib veterans so far, so I'll just comment a bit about the anxiety. I think that the reason why afib provokes anxiety is that there is already a heart-emotion connection - if you're upset, your heart speeds up and even "skips a beat" as they say. So if your heart is going too fast, or irregularly, your mind interprets that as being upset and anxious, and that feeds back to your heart, making it worse. I found that relaxation techniques, like slow "mindful" breathing or going for a walk, would help. That advice that the afbi itself won't kill you is sound and worth thinking about - the feeling of anxiety is not based in something to be so anxious about (even though it feels that way). You can get used to this and reduce the anxiety -- for me, my feelings went from "Freak out! *** I'm going to die!"  to "dang, I'm going to feel lousy for a while."  The real risk is the stroke possibility, which the Xarelto takes care of. 

    That said, getting to an EP is a really good idea. Most important is that this is a very individual condition - we are all remarkably different in how this feels, what brings it on, what drug treatments work, what their side effects are, and what surgery/procedure is called for. So you and your doc will have to figure out what works for you, and adapt if it changes.

    Good luck, and keep us posted!

     

  • Thumper2
    Thumper2, October 15,  2020  8:52am EST

    BethClark, thank you for the description of your journey with AFib.  When my AFib started in 2005, it was essentially non-symptomatic.  I took some meds, and I did not have any great anxiety about the AFib, until 2013, when a younger cardiologist observed that my heart was in bad shape (and I was tired all the time).   But before that, I had traveled to conferences in Philadelphia, Chicago, Madrid, and Boston, as well as family things in Iowa and California, all without AFib problems.  Unfortunately, as I have mentioned here before, it was too late for ablations to put me back into sinus rhythm, and I had to have a special procedure (and a pacemaker) to do so.  My point is, I wish I had seen an EP sooner and had ablations sooner -- I think my heart would be in better shape.    I guess I'm asking if you are seeing an EP and considering ablations, so that perhaps your AFib could be treated before any potential heart damage worsens, as mine did after 8 years on meds.  I certainly wish you all the best!

    Thumper2 (Judy)

  • BethClark
    BethClark, October 16,  2020  3:58am EST

    Hi Judy,

    Thanks for your concern, Judy. I can certainly understand your regrets for not taking a different "road" given what you know now about how your AFib affected your heart. 

    From postings on the forum it is clear that AFib experiences are certainly not the same for any of us. Your non-symptomatic AFib experience is certainly very different from my episodes of160-180 beats a minute. EKGs and other tests along the way haven't shown (at the time of the test) that I have had non-symptomatic episodes or that there are issues with my heart. Your comments about making sure that AFibbers see a specialist are right on. But my impression is that there is no "one size fits all" treatment; that using medications, even long term, is as valid a treatment as an ablation. That the decision for which treatment is appropriate depends on the individual patient's situation. With the conference coming up we'll be able to hear more about the current thinking regarding treatment methods. 

     

  • Artgirl46
    Artgirl46, October 16,  2020  5:48pm EST

    Thank you everyone for the time you took to respond to me. I so appreciate your advice and support. I've been diagnosed 3 weeks now. I've only had one severe episode where I went to the ER and was converted through IV medication..My cardiologist mentioned ablation as a possible treatment but I think he wanted to see how I do. I can certainly ask him about seeing an EP. I got an Apple watch and can do an EKG. I just have this feeling in my chest that keeps me anxious. I take my pulse rate and a lot of times it is normal so I think a lot of this is fear it will happen again and anxiety.
    Thank you again for reaching out. 

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