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Atrial Fibrilation Surgury needed!! SCARED!


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Julie Jackson Find out more about Julie Jackson
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  • Atrial Fibrilation Surgury needed!! SCARED!

    I am 33 and have known about my HCM since age 17. I have had a murmur since birth and was always told it was innocent. I played Field Hockey at the time and was instructed to stop.
    I never really took any medication until about age 26. I started having episodes of atrial fib. I am now on the max dossage of Norpace 300mg bid, verapimil 240mg/day, & nadalol 40mg/day. I had to have a pacemaker implated on my birthday last year. To many meds for my body to handle. I made it to the hospital just in time. Heart rate was 26bpm upon arrival. I did stop breathing at one point. I guess God just wasn't finished with me yet.
    I just came back from meeting with Dr. Castle and Dr. Lever in Cleveland earlier this week and I am waiting on a date for my surgury. They are telling me that I need to have the Maze procedure done. This means a 5 to 7 stay in the hospital and 6 week recovery at home. The operation scares me. I want to be here for my 5 year old daughter and my wonderful husband. I just keep praying this works. I am hopeful to be able to be off of this medicine. It makes me feel terrible. I don't have obstruction but the rhythm problem is making it difficult. I hope this surgury helps. I want to be able to do more vigorous activity without felling like my legs are going to fall off.

    Hoping for a better life!!!!
    Julie Jackson/KY
    Julie Jackson
    Trust God and leave your worries to him.

  • #2
    Best wishes

    Hi Julie. I certainly hope the surgery will be a success for you! It sounds like you have had a rough time of it. You need a break from all this. Take care of yourself and your family.
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness


    • #3
      Julie, the best advice I could give you is to keep a postive attitude. Live each day to the fullest. I have been living with this disease, since I was diagnosed in 1980. I have had myectomy in 1987. Was lucky enough to find someone who loved me for who I am and have had a daughter who is now 12. I think if I had just given up then, none of this would have never happened. I am truly blessed.
      Life is too short to worry about the trival things in life, So live life to the fullest.


      • #4
        Julie, You will have a lot of other people praying for you also. Keep us posted. At least we know you are headed to a wonderful facility with excellent doctors. I'm sure you are anxious to have this all behind you. Best wishes, Linda


        • #5
          Julie - we all understand how you feel - We all fear for the "what if's" when living with HCM.
          The MAZE is a procedure not done much in those with HCM but those that have been done that I know of at the Cleveland Clinc have done very well. You are in great hands and honestly could not ask for better care...anywhere in the world for what you need done.
          There are a few members of the HCMA who have had the procedure done - I hope they check into the board and see your post - I am sure they will contact you.
          Be well - stay positive - and know we are ALL here for you and your family.

          Best wishes,
          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)


          • #6

            It is normal to be scared. While I did not have the maze procedure done, I had a septal myectomy done at the Cleveland Clinic in November, 2002 and went though a "similar" surgery. 5.5 days in the hospital and 6-8 week recovery. While I was very nervous prior to the surgery, 12 weeks out I feel like a new person! Life is too short to feel bad all the time.

            If there is anything that I can do to help you through this, please send me a PM or e-mail me directly.

            Bob Hartwell
            Cleveland Myectomy Crew
            Member since November 2002

            \"Chance favors the prepared mind!\"


            • #7

              Forgot to mention that my friend Howard had the maze procedure done along with a myectomy at the same time I was having my surgery. At last report, Howard was doing extremely well.

              Cleveland Myectomy Crew
              Member since November 2002

              \"Chance favors the prepared mind!\"