If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

9 weeks post myectomy and have A-Fib

Collapse

About the Author

Collapse

progers Find out more about progers
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    No information from me, just a quick note to say that I am so sorry that you continue to struggle with this. It sounds really rough. I'm sure hoping it settles down soon, also hoping that you can get some really good medical advice and treatment. Take care, and stay as positive as you can, Lisa Inman

    Comment


    • #17
      Pam,

      I do so hope you are right about this. I've just been cardioverted successfully for the second time and, as of a couple of hours post procedure, am still (thank God) in sinus rhythm. But I am absolutely terrified I will go back into A-fib. One of my cardiologists (but not the one at the hospital where I had my procedure) said she thought my a-fib will happen again. This thought has me in a state of terror, because my a-fib was absolutely debilitating. I went from active and fit pre-surgery, to a disabled heart patient during my a-fib episode. At this point I have so many regrets.......

      The doctors at the hospital have started me on Amiodarone so I am praying this works. Does anyone know how effective it is? I will take my chances with the side effects for now. Down the line I will get off it if possible, but like you say Pam, for now I just need to let me heart get over the surgery as this may be the cause of my a-fib.....

      Thank you all so much for your support. It is so important to me and is greatly appreciated.

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

      Comment


      • #18
        Hi Paul:

        I was put on amiodarone in late February, and it has worked wonders for me. No drug is totally going to eliminate AF for you or anyone else (and I can attest to this, having been seen in the ER a couple weeks ago for AF). For me, it has more or less kept me in sinus rhythm, and I can't tell you how much of a difference that has made in my everyday life.

        There are a few threads here about the drug, and you will see that there is some controversy about it. It can cause some serious side effects for some folks. During the "loading phase," I had an almost constant, low-level headache and nausea and didn't feel much like doing anything. It gradually went away, though. The idea is to get the most benefit from the smallest possible dosage; I take 200mg a day.

        Don't take this as gospel, and keep in mind that medical opinions are going to vary, but I was told by my doctors that HCM patients with AF respond better to amiodarone than other antiarrhythmics. But like I said, there is a risk of side effects, and the doctor who prescribed it ought to be ordering periodic blood tests to see if it's affecting your liver, pulmonary function and vision. If s/he hasn't mentioned this, make sure to ask.

        -- Tim
        Life is a banquet...and I got botulism! -- Me

        If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

        Comment


        • #19
          Paul,

          I will keep you in my thoughts and prayers. I do acknowledge well how the input from a medical person stating it will come back plays a strong roll in negative and fearfull forboding. Please, please try to take the statement in with less intensity. The fact that you had major heart surgery with some complications probably put you , like me in a little different category for awhile. Remember we were in the 25% category for those with HCM to have an obstruction and now we are in another category , 40% for post open heart surgical patients who may get A-fib. This type of A-fib is specific to heart trauma and CAN certainly resolve as precariously as it emerged.

          Chin up and try , try to only allow peacefull , calm and positive thoughts to occupy your conscious thinking. Predicting the future of your A- fib returning or not by this doctor was unneccesary and better left to the crystal ball soothsayers. You know what I mean? I think you will do far better to remain with the positive thinkers.

          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


          • #20
            Thanks for the info Tim. My docs will be doing regular tests to make sure my thyroid, liver etc. functions are ok when I take amiodarone. When you have bouts of AF, do you need cardioverting, or do you flick back into sinus rhythm on your own (presumably with the help of amiodarone)? Are your a-fib episodes continuous for days on end like mine and are they debilitating?

            My problem has been that once I go into a-fib, it is not controllable and is continual. I can't even walk. The only thing that has worked so far has been cardioversion.

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

            Comment


            • #21
              Pam,

              You are SO right....and have helped put things in perspective for me.

              Thanks,

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

              Comment


              • #22
                Dear Paul,

                I know exactly how you feel and I would gladly strangle your doctor for saying that to you.

                When someone said that to me, I totally freaked. It had never occurred to me that I wouldn't be in sinus again and I know it made a difference in how my treatment went.

                Amiodarone is very strong and has one of the highest success rates of any Class III antiarrhythmic. My mom has been on it for almost 20 years and it keeps her in sinus quite well. You are ALREADY in the winner's circle b/c you converted. Congrats!!!

                If you dwell on the fear, it will eat you up. I know from experience. I use the techniques on emofree.com to release from stuff like this. I don't, on principle, trust things that claim to fix everything and I can't say that the technique will do that, but I can say from my own personal experience that it really does make a difference with fear-based emotions and undercurrents.

                Be grateful for what you have, focus on de-stressing and being healthy and you are on your way.


                take care,

                S

                Comment


                • #23
                  Originally posted by progers
                  When you have bouts of AF, do you need cardioverting, or do you flick back into sinus rhythm on your own (presumably with the help of amiodarone)? Are your a-fib episodes continuous for days on end like mine and are they debilitating?

                  My problem has been that once I go into a-fib, it is not controllable and is continual. I can't even walk. The only thing that has worked so far has been cardioversion.
                  I've had three of what I would call "serious" bouts of AF, enough to send me to the ER. They've been considered paroxysmal, but there is suspicion that I've gone chronic because they know it's happened before. I was told after #2 that if it should ever happen again, I should take one of my atenolol tablets and then go into the ER if it doesn't help after a reasonable period of time. (What I don't know is what would be considered a "reasonable period of time.")

                  The first time it happened was September of last year. When it hit, I didn't know what it was and thought I might be gearing up for a heart attack. I had some difficulty in speaking and taking full breaths. Staying still helped a little bit, but not much. I remember they gave me nitroglycerine, which didn't help at all. I was eventually given an amiodarone drip and kept overnight, and it worked too well: my heart rate went very low every time I dropped off to sleep (somewhere in the 30s).

                  The second time, in December, was more dramatic. For the first time I felt like I was truly in some sort of danger because everything was going white, as if I had my eyes up to a TV tuned to white noise. So what did I do? I (perhaps stupidly) drove myself the five miles home from work so my partner could drive me to the ER (we had only 1 car at the time). I was given esmolol in the ER, but my cardiologist thinks I converted on my own.

                  The third time, two Fridays ago, was relatively mild. I took the atenolol, but when there was no change after 20 mins., we went. I spontaneously converted, an hour and 45 minutes later after taking the pill.

                  Usually I feel somewhat fatigued after a bout with AF. It took me a couple days to feel like myself again after that second one.

                  Hopefully the amio will do you some good. Just give it some time to work.

                  -- T.
                  Life is a banquet...and I got botulism! -- Me

                  If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                  Comment

                  Working...
                  X