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  4. Rythmol

    Hi Nichole, Please become a member on the forum so that you can post with others and get answers to your questions. Also, please post your question under Afib General Discussion, not here under the Getting Started tab. No one will see your post here! Please email me at support@stopafib.org if you have any more questions or need help. Thanks!
  5. Rythmol

    Hello! My husband has recently been diagnosed with afib rvr....his cardiologist wants to start rythmol after we went to his follow up appt and was still in afib with rvr....any experience or suggestions with rythmol?
  6. I see that you had an AV ablation and pacemaker recently....sounds like you did well.  I am scheduled Jan25 for the same only they are using the Medtronic Micra Pacemaker, installing in the ventrical with no leads.  Very new approved by FDA 2016 after a ten  year study.  I was not aware of the AV ablation procedure when we met with the EP but was startled to learn that this is permanent deal, if the pacemaker fails--that is it, you are done, kaput.

    This has me very concerned, do you have any positive info to offer.  Negative is ok, of course, if I need to really consider it.

    I am calling my EP office tomorrow to discuss this with them.  I am 86, have had AF and AFL since 2011, controlled with Sotalol and Xarelto until this past November when it seems to be pretty consistent.  I have Kardia program so that help identify issues.

    1. AgentX86

      AgentX86

      Hi Ginger,

      Not sure I'm doing this right - didn't know there was a "profile message" until I saw the email saying it was there.

      Yes, I had an AV ablation last February.  I've done well, generally, but a few months ago I started having bigeminy PVCs that felt awful. My EP up'd my pacer to 80bpm, which isn't good either but we'll see where this goes.  Overall, I wouldn't go back for a second.  It was a good choice for me but more information would have been good at the time.

      Yes and AV ablation is a one-way street but it's usually not as bad as you imagine.  Most have an "escape rhythm" that would take over if the pacer completely stopped (highly unlikely).  The problem is that the escape rhythm is usually quite slow and may not be enough to remain conscious but is usually enough to survive.  They test this periodically, during pacemaker "interrogations".  Mine doesn't kick in when they run my pacemaker down to 30bpm, the lowest they're allowed to test, so they don't know if I have one or not.  A little disconcerting but not the end of the world, either.  As I understand it, most will have an escape rhythm around 40bm.

      The "pacemaker dependent" issue did make me think hard before going with it.  My EP had been sorta pushing me that way for about a year but I wanted to make sure there were no other alternatives, first.  When I started having pauses (8-seconds recorded), which my EP says was caused by sotalol, a pacemaker became an immediate necessity so it wasn't a large leap from there to the AV ablation too.  It did "fix" my flutter.  I put "fix" in scare quotes because it isn't.  I'm still in flutter 100% of the time but it doesn't matter (much).  If I understand your situation, you'll have no atrial function (AV dyssynchrony) - I don't either.  The Micra can't sense the atrial beat so can't time the ventricles to coincide with the atrial pulse.

      I'm a little concerned about your EP recommending the Micra with an AV ablation.  As I mentioned in one of my postings, the Micra precludes CRT pacing which, according to my EP and cardiologist, will prevent pacemaker induced cardiomyopathy.  My pacemaker is biventricular so both ventricles beat together, normally, rather than a small delay between the left and right that can cause cardiomyopathy.  I would ask your EP about this.  I would also make sure you understand the dyssynchrony issue above.  I sorta missed this when I had mine done.  It wouldn't have changed anything and it does make sense but I don't like surprises.

      Good luck with your surgery and if you want to talk further, please don't hesitate to reach out again, before or after.

       

  7. Hi, I'm going to give as brief but complete a history as possible and I thank you for asking.

    April 2016 started getting short of breath.  Cardiologist said my two-leaflet aortic valve was too stiff and needed to be replaced.  Work-up showed a 4cm aneurysm in my ascending aorta.  Open-chest surgery June replacing aortic valve (bovine) and resection of aneurysm with graft replacement.  Came from OR in afib and it has never stopped.  It has just gotten so severe that  I was in heart failure and had to be hospitalized 3 weeks ago.  Wasn't started on rate control med (diltiazem) until 3 months ago when shortnesss of breath became much worse.  I live in Central, SC, about 30 miles from Greenville, SC in the upstate.  

    I am a terrible patient and for many months/years just lived with it and didn't see doctors often.  I simply wanted to keep working and find a way to deal with it later.  I have an internist whom I love as my PCP and a cardiologist whom I also love but the EP is new to the area and new to me and I don't know anything about him.  He's alright to talk with but he hasn't spent any time giving me possible options or more information.  I get the feeling that he is gung-ho the av node ablation and wants to jump right into it. 

    Thank you so much for responding to me and please accept my apologiy for talking so much. lol   

     

    1. steffke0104

      steffke0104

      Dell, sorry, I know it takes a while to figure out how the mechanics of the forum work. By responding to just me, the rest of the forum members can't see it, and there are several others who are way more knowledgeable in complicated cases like yours. Carey and Sue in particular.  I'm going to see if one of the forum monitors can move it over but (sorry) it might be best if you can just copy and paste your message as a response on the original thread. 

      I know there are some who have experience with AV node ablation, persistent AFib, HF and valve replacement. (I'm paroxysmal but chronic.) It would be good for you if they can jump into the conversation. That's the wonderful thing about the forum, we've got such diverse experience with this condition and can offer some realistic insight's.

      Take care, my friend, and you'll find the forum is like being with a group of good friends who completely understand the mental effects of AFib.

      Sandy

       

  8. Thanks for all the info. I just got an EKG and my heart rates have been around 90-100 even when resting. Took your advice to contact the EP and went this morning, waiting for a call back but definitely in afib, flutter. You’ve been really helpful and have eased some anxiety for me. Thx

  9. If you are looking to post on the forum, please do so under Afib Forum - General Discussion.
  10. Takotsumo cardiomyopathy. The name comes from the shape of an octopus trap, interestingly.  It is explained well in cardiologist Sandeep Jauhar's newest book, Heart: A History. That part starts on page 24.

      This is a book that I enjoyed generally because of the medical history stories  and suggest it for at least borrowiwng from the library, which I did, then decided I wanted to own it, so I do.

     

    1. netmouse

      netmouse

      And who knew, right?  thanks.

  11. hi carey, thanks for your reply mate, its so frustrating having this thing with us and not knowing where its guna go.  iv read that some folk stay paroxysmal for 20/30 years but others are in permanent within 3 years.!!  I'm only just managing in the paroxysmal state (mentally anyway) and the thought of persistent/ permanent afib terrifies me. I know I should man up and think myself lucky that I have afib and not a terminal illness like some poor souls get and I am really. but I just cant help worrying.

  12. Hope you are doing well. How was your procedure with Dr Natale?

    Patrick

  13. PAROXSYMAL AFIB DIAGNOSED 2008. HAVE BEEN ON FLECAINIDE& METOPROLOL SINCE 2011, AND MOST RECENTLY ADDITION OF XARELTO. EPISODES ARE BECOMING MORE FREQUENT, OCCURRING AT TIMES I'M NOT EVEN AWARE OF.

    RECENT 30 MONITOR REVEALED "NUMEROUS & SUSTAINED" EPISODES.

    CONDITION SEEMS TO BE WORSENING, SO PLANNING ON 1ST ABLATION DECEMBER AT MGH WITH DR MANSOUR. 

  14. I am76,retired, a former jogger (motto: start slow and taper off). I've had afib for years and been through medication, electroconversion, and ablation without lasting success. Currently I cannot walk more than five minutes without resting. and I've been recommended an A/V node ablation with pacemaker. I have some trepidation about such a last-ditch treatment and want to explore some of the newer non-invasive surgeries such as the mini-maze. I've asked my EP for a referral for a second opinion and am waiting to hear from him.

  15. Pete,

    If there weren't as many "crossovers" would the trial have given us any new indications or is the fact that the study was not really not long enough  the main issue to draw empirical conclusions?

    Rob

  16. Would like feedback from people w/afib (preferably sudden onset) who don't show classic symptoms of noticeable heart beat arrhythmia etc. Particularly interested in effect on blood pressure  and fatigue and kidney function and or other effects.

  17. Hello Everyone.

    Am so happy to have found this site. Although I have had an irregular heat beat for 30 years and was taking meds on and off over the 30 years, nothing prepared me for my heart to go into a mode that I have never experienced before. Now 2 months after being diagnosed with AF and still having a few issues with my heart, I am so ready to learn and connect with people living with AF. It does scare me, but hope by talking to people and sharing their experiences will help me to cope better. I look forward to any advice out there.

     

    Wishing you all better days

  18. What I loved about Marchlinski was even though he ids so skilled and BRILLIANT he does not talk down to you and ( im a music teacher  to k-5 kids so this REALLY impressed me)he explains it so you can understand what will and can and cannot happen. Santangeli did my ablation though

    1. mellanie

      mellanie

      Dr. Marchlinski is one of the nicest people. His family is incredible, too. He brings his wife and son to many of the medical meetings, and I have watched his son grow up. His son has even become my "buddy". When we were all in Melbourne, Australia to speak at Asia Pacific Heart Rhythm Society, they took us down the river on the boat and then we walked several blocks to the National Museum for the faculty dinner. Dr. Marchlinski's son and I were first off the boat, and we walked together to the museum, leaving the "adults" behind. Now, every time he sees me, his son gives me a big huge, which is very unexpected for a young teen boy. But, he is a sweetheart! 

      Mellanie

  19. I had a bovine aortic valve replacement (Edwards sapien 3) 2 yrs ago and just recently had several afib episodes. My electrophysiologist put me on Eliquis 25 mg 2x/day. Also changed my pacemaker controls. Don't know if afib is any better yet until next download. When I had afib episodes I did not notice any symptoms except maybe I was more fatigued.

    Has anyone else experienced afib after valve replacement - 1 to 2 or more years post.

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