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9 weeks post myectomy and have A-Fib

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  • 9 weeks post myectomy and have A-Fib

    Hi guys,

    I have just spent all morning in the ER because I went into A-Fib first thing this morning. Its been 9 weeks since my myectomy and 8 weeks since I my first and only other bout of A-fib which happened just after the surgery. Last time I was in A-fib for 5 days and needed cardioversion to get back in sinus rhthym.

    Naturally I feel upset, because I was just starting to get over all the trauma and complications of my myectomy (bleeding etc.). The ER called my cardiologist who said I could go home and then call her on Monday to arrange anti-coagulation etc. I cannot get hold of my cardiologist in person to talk to her about this plan and am concerned about leaving it all weekend (its Friday here right now) until I get some further help. I feel pretty ill, SOB and uncomfortable. What should I do?

    Cheers,

    Paul
    Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

  • #2
    Place a call into your doc and state that it is urgent. Hopefully they will call you back. Asprin is a good idea to discuss with the ER doc if you are unable to get to your cardiologist.

    Best wishes,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Tell the office staff that you are at risk for a stroke if you don't get a coumadin prescription called into your pharmacy. That should rattle their cage.

      Good luck!

      Comment


      • #4
        Thanks guys,

        I am already taking 100 mg of aspirin each day. My doctor's office is closed this weekend so I simply cannot get hold of her. I don't know about others who have A-Fib but mine is giving me chest pain even when I am doing nothing. Other than go back to the ER I will just have to wait it out in discomfort.

        Are some of you able to function with A-Fib? If not, and you are still in A-Fib, why have you not chosen cardioversion?

        Thanks again.

        Paul
        ----------------
        HOCM, myectomy 18/03/05, repeat open heart surgery to fix internal bleeding 19/03/05, 5 days of post surgical A-Fib, cardioverted 24/03/05
        Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

        Comment


        • #5
          afib

          I'm still in afib b/c I'm stubborn.

          Norpace worked for a while and quit. Sotolol worked for two weeks and quit. Tikosyn worked for two YEARS and then quit.

          I refuse to take amiodarone because it is too toxic. My mom has been using it successfully for fifteen years, so it may have worked for me but I've now been out of rhythm for almost three years so I'm going the Eastern med route with energy work.

          The first time I went into afib, I could barely move. Now I work full time and while I'm tired all the time, I am funcctional. Your body adapts.

          You do NOT want to get used to afib. You want to get out. I don't think anyone chooses to stay in afib.

          good luck,

          S

          Comment


          • #6
            Sarah,

            When you say you are stubborn, does that mean you have just decided not to do cardioversion, or that you have done it in the past and have given up because you quickly revert back to A-fib?

            I am also curious to know how many of you out there have 'reverted' back to sinus rhythm on your own? My doctor made the statement that I would probably revert within 36 hours, but I just can tell that won't happen with me. I am all for cardioversion ASAP.

            Thanks,

            Paul
            Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

            Comment


            • #7
              if at first you don't succeed...

              The first time I went into afib, I went on Coumadin for three weeks and was cardioverted successfully --totally textbook.

              The second time, they successfully cardioverted me 26 hours after onset without any Coumadin or a TEE b/c they said it was not possible for me to have formed a clot in that time frame.

              They were wrong and I had a stroke the next morning. The day after that, the afib started up again. They were trying to figure out if they should convert me again or not and the neurologist told them not to touch me (his exact words) for six weeks.

              So I sat in afib, on Coumadin, for six weeks. Then the cardioversion didn't work, so we kept trying different medications --as mentioned above.

              I have tried every Western medical medication except amio (there are 31 posts by me regarding amio in the board, so I won't bore you again).

              The only other things I can try are to have a Maze procedure where they kill enough of my heart to force a correct pathway or they ablate my A-V node and install a pacemaker. In the first case, the procedure is risky and I wouldn't call it perfected (although some people have had good luck with it). In the second case, the procedure makes you feel better, but your heart is still fibrillating, thus still getting larger. Seems silly to me to damage your heart just to maybe feel better but not really fix anything.

              I'm not a good candidate for afib ablation/maze procedures in general b/c I do not have a "regular" irregularity. Sometimes I have flutter and PVCs on top of the afib, so not even the Mayo has said "you should do this." They offer it, like if you want that giant Big Mac with extra cheese and bacon, you can have it, but it might not do you any good.

              So that is my story, not in a nutshell!

              Comment


              • #8
                Hey Paul

                Harry asked me to tell you "hang in there mate"....maybe one day when we are all (I don't know what to type here to mean through this/recovered/over it) we can catch up and swap stories, have a drink or two (non alcoholic of course lol).

                Sarah you sound like such a battler, very strong lady.

                Paul why didn't they put a defib or pacemaker in when you had your op? They are going to put a pacemaker in Harry, whichever procedure he has.

                Leanne and Harry

                Comment


                • #9
                  G'day Harry and Leanne,

                  Thanks. I am trying to hang in there. Was just starting to feel great and this Atrial fibrillation started up. Its been more than 48 hours and I think the chance of me going back into normal (sinus) rhythm are slim at this point. I will talk to my cardiologist tomorrow and hopefully she will recommend that I have cardioversion (i.e. electrical shock). The other time I had A-fib was in hospital after the myectomy and no drug worked - I had to be cardioverted then.

                  Cheers,

                  Paul
                  Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                  Comment


                  • #10
                    Most times afib doesn't convert just from a medication. You start the med and then they cardiovert you and keep you on the medication so you stay in normal rhythm.

                    just an fyi.

                    Comment


                    • #11
                      Thanks for the info Sarah. Have your doctors figured out why you keep going back into a-fib and why the meds don't help?

                      I will meet with my cardiologist tomorrow. If they cardiovert me, what meds do you think they will give me to prevent a relapse into A-fib. I was on Sotalol and this didn't work - obviously! My biggest fear is staying in A-fib, beause my heart is not handling it well at all. I am getting severe chest pain just walking to the toilet. My heart rate is also still over 100, despite having 360 mg of Sotalol in tablet form, and an additional 60 of Sotalol IV.

                      By the way, when you say technical fixes for a-fib, what do you mean? The Maze procedure?

                      Cheers,

                      Paul
                      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                      Comment


                      • #12
                        Paul,

                        It sounds like when they put you on the Sotolol and cardioverted you , they did not leave you on it for awhile. When I was on the amiodorone post 5day myectomy for A-fib , it was at a very high dose( 1200mgs). They hung bolus' up to get me to a high dose. It was only one hour before my cardioversion that I suddenly reverted back to NSR and I had been at the high dose for more then 20 hours. They felt that they tapered me too quickly down to 400mgs and this may have left my still irritable heart vulnerable to A-fib again when 2 weeks post op , I went into A-fib again. Because you had post op complications , your hearts' healing and settling down may take some carefull tweaking of meds and carefull management. The electrical system of a post myectomy patient can often be (40%) prone to A-fib aftersurgery. Everyone is different. The type of a-fib you describe sounds very similar to how mine was. Yes it is no walk in the park , I too felt miserable and very scared and doubtfull. The high rate of a-fib wears you down physically and emotionally. I remember right before the reversion back the first time , I started praying and became very calm. No I am not very religious , just very spiritual.

                        Now with regards to the med. I stayed on it for 3 months after the initial A-fib. The doseage was very gradually tapered to 800mgs, 400mgs and then 200mgs before it was stopped.

                        Make sure you dicsuss all these concerns and what you have learned of others with your cardiologist. This may very well just all go away as your heart is more healed and rewires itself.

                        Hang in there.

                        Pam
                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                        Comment


                        • #13
                          mechanics

                          there are the two invasive procedures i mentioned in my post (maze and pacemaker) and there is an ablation for afib that they do on non-hcm people that ablates the origin of the afib in the vein entering the heart (yeah, weird) and they are starting to do this on HCMers too but the odds are worse for us b/c the heart muscle predisposes us to arrhythmias.

                          I don't know why you are so positive that you won't convert. You still have a few medication options to try, maybe even continue the sotolol and give it a second chance. Don't know.

                          Let us know what the doctors say.

                          Hang in there.

                          S

                          Comment


                          • #14
                            Thanks Sarah and Pam. Pam, I was, and still am, on Sotolol but went in to a-fib anyway.

                            I think it is more than a coincidence that I went into continuous a-fib for the first time after my surgery: I never had sustained a-fib prior to the myectomy (I'm not even sure if I had any a-fib let alone continuous a-fib like now). What do you think the chances are that my a-fib is playing up because of the surgery and that it will eventually settle down? Having said that is has been 9 weeks to the day since my myectomy.

                            Pam, how is your a-fib now? I've spoken to my cardiologist and she seems very pessimistic that even if it happens again, I will have to "grit and bear it". She said "you can't just keep being cardioverted...". WIth the way I feel I cannot accept this. I am already on 360 mg of Sotolol so rate control doesn't seemt o be doing anything. On the other hand, the surgeon who did my myectomy is not so pessimistic and thinks that I could go on amiodarone for a year and then the whole thing might settle down????

                            My cardiologist is also talking about RFA etc. as a possible alternative treatment, though she 'wasn't sure if this would be effective in HCM'. I am in urgent need of advice on this whole thing, though obviously I don't think I will have to make decisions today.

                            Thanks for your advice and support.

                            Paul[/quote]
                            Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                            Comment


                            • #15
                              Paul,

                              I agree with the surgeon who did your surgery. I think that in time the possibility of your heart settling down is very plausible. The ajustments or changes of medication and remaining on an effective dose also may offer benefits and in your case it may take a year for your system to adjust. I also see that there is some discussion about beta blockers. In my first year post myectomy , I started out on 75mgs of Atenolol and gradually had to go back up to 150mgs and then 200mgs and 250 mgs. This was because my chest pain returned and also I did note my pulse and BP were not as low as they should be. I do not know if the high dose of beta blockers effects this scenario. I had only those 2 major incidents of A- Fib after surgery and 3 minor episodes recorded by my AICD. Those I was not aware of and they were well down the road , several months after myectomy. My surgery was Oct. 2003 and there have not been any other incidents after that first year.

                              I hope my story helps and your doc explores the meds for you. This route is at least worth trying before you have to just "live with it".

                              For me it was actually the EP who had the expertise in managing to keep the A-Fib at bay with the right med and timetable. Amiodorone worked for me.

                              Take care.

                              Pam
                              Dx @ 47 with HOCM & HF:11/00
                              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                              Lead failure,replaced 12/06.
                              SF lead recall:07,extracted leads and new device 2012
                              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                              Genetic mutation 4/09, mother(d), brother, son, gene+
                              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                              Comment

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