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in a state of confusion....

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  • in a state of confusion....

    First, I would like to congratulate the people coordinating this website and the newsgroup. It felt like I found home searching for some answers and information. Being an Electronics Engr, I have spent fast few weeks in understanding HCM, arrythmias, and electrophysiology of heart through books at library and web. 4hcm.org is doing an exceptional job for providing a comfort level and a place for dialagoue.
    So my story:

    I a 34 year old Sales Engineer in Las Vegas. I had a viral myocariditis when I was 11yrs old in India. Later on after recovering from mycarditis, we travelled 600miles to get an Echo done which showed HCM or they called IHSS.
    It was never determined whether HCM is congenital or result of viral myocarditis. Last measurement of AV septum was 22mm and stable in 1987. I had no symptons or obstruction. As a young kid, I did go to the gym did some weight training for 4-5 years, and had no symptons.
    Just out of curiosity, had an echo done in 2001 and the septum had grown to 26mm. Still had no symptoms or obstruction according to echo. Cardiologists suggested to take betablockers. I took them for a month, and didn't feel the need so decided on my own to discontinue since I never had any symptoms.
    Beginning of Jan 03 felt shortness of breath during physical activity, but didn't think much of it since I was on antibiotics for cold while I was visiting India. Although, as I came back to US, the symptoms continued, and once during my normal workout at home I felt my heart skipping a beat, so I went to a cardiologist and had echo/nuclear med/stress test.
    Echo actually showed septum to be reduced to 24mm compared to 26mm about 8months ago. But during the stress test, my heart showed atrial fib.
    Although, I had no symptoms of weakness or dizziness.
    So the cardiologist said that he would talk to a electrophysiologist and suggest let me know the line of treatment.
    I kept calling the doctors office for three weeks since my symptoms were getting worse, I felt my heart skipping beats with lesser and lesser physical activity.
    Finally, one day, I was having lunch with my wife a restaurant - finished my apetitzer, and felt palpitation. My heart was beating randomly. So drove myself to ER. They confirmed Atrial fib.
    Now I have a pacemaker and I am on betablockers.. I have been told that betablocker is for my HCM and prevention of arrythmias, and pacmaker is a back up in case my heart slows down too much since I have a first degree AV block in by Electrocardiogram.

    It has been two weeks since implantation but I am still kind of confused about how did I get arrythmias out of blue even if I have no obstruction or increase in thickness of the septum.
    Also, the way pacemaker works on Atral fib. is by increasing the heart rate to supress the Afib whereas in case of HCM, the betablockers are given to decrease the heart rate.
    Also, until I don't get on the treadmill, I wouldn't know if the problem is fixed because my symptoms of skipping beats occured only during physical activity. Fortunately, I haven't had A.fibs during meals anymore which is a positive sign.

    Thanks again to everybody for providing a place to vent my story. And I would really appreciate any comments, suggestion, Info, similar experience, anything...

    THANK YOU

    Ketan
    Ketan Thanki

  • #2
    Re: in a state of confusion....

    Dear Ketan,

    Welcome!

    I, too, have afib. About 20% of all HCM patients experience atrial fibrillation, some to most experience chronic or permanent afib. There is no answer right now as to why this happens. Only 20% of HCMers have obstruction either. It is just one of those things we are still trying to figure out.

    Has your family had echos to rule out family history? That would be very helpful to all of them, and you.

    Smaller meals, more often, helps some people avoid arrhythmias, as does avoiding caffiene, nicotine, alcohol, ephedra/ephedrine/epinephrine, and super cold drinks.

    There is still much to learn about HCM and afib and there are many here with pacemakers. I'm not sure how yours is programmed; it sounds very complicated.

    Keep us posted on your progress,

    Sarah

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    • #3
      Re: in a state of confusion....

      Thank you Sarah for the quick response.
      I have the St. Jude model Identity pacemaker. Actually, since they have turned off a lot of features of the pacemaker, I have been feeling much better. Now, they are only pacing the ventricles in response to the SA pulse. This as avoided any increased heart rate, and majority of the time, my heart is running on its own.
      Ketan Thanki

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      • #4
        Re: in a state of confusion....

        Ketan, welcome to our board. I think if you read through the site you will find a lot of information here. The board has a lot of stories that sound similar to yours. Please read through them when you have time. You didn't mention who your doctor is. There are only a few who are HCM specialists. Please contact Lisa at 973-983-7429 to find one who would be a good match for you. Again, welcome.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

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        • #5
          Re: in a state of confusion....

          After having a pacemaker implanted, finally I went to see a EP specialist who looked at my charts and thinks I didn't need a pacemaker.
          According to him there were some beats from top chambers that were not getting conducted to the bottom chambers, but they were not Afib ECGs.

          My cardiologist had diagonised them to be Afibs during stress test. To explain my shortness of breath with, only thing EP specialist can contribute it to is mild to moderate mitral regurgitation. My EF is 55-60%, there is no obstruction, but Echo reports in two years has always had a note of mild to moderate regurgitation. If it was MR, I don't understand how it would start short breath in two weeks.
          Also, I did not have short breath after pacemaker implant for a week. During the first follow up visit, they adjusted the AV delay to the shortest limit of 70ms. And I feel since then I have had this sympton of SOB.

          Now the EP suggests that since I don't have obstruction and the septul thickness has not changes, I should wait until the heart is healed from Pacemaker implant in 6 weeks and do an echo. I am on betablockers 100mg which also the EP thinks is high of a dose.
          My holter results have been normal. But my cardiologist increased my dose of BB after the week of pacmaker implant when he saw occasional PACs and PVCs on the Holter. I was also on antibiotics at that time(levaquin) which I have read to have side effects of irregular heartbeats.
          The holter after the antibiotics course was over is much cleaner and PACs and PVCs are very occasional and according to EP a lot of people including Him have them.

          Any thoughts/comments/suggestions.... please.

          Thanks a lot
          Ketan
          Ketan Thanki

          Comment


          • #6
            Re: in a state of confusion....

            Welcome to the board!
            I am a bit confused as to what is going on with your care at this point. Can you call the office, we can chat about this.
            I am in the office all day today.
            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)

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