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I feel like I am at a crossroad.

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scottdg Find out more about scottdg
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  • I feel like I am at a crossroad.

    As I started to mention in another thread I was diagnosed in 1998 at the age of 24 with unobstructed AHCM. I was diagnosed after I went into sustained atrial fibrilation, apparently brought on by a night in which I had a little too much to drink . I was in the hospital for several days and while I was medically cardioverted. I immediately contacted a HCM specialist in NY and was put on Verapimil. I tried it for several months but didn't like the way I felt. I was them put on 100 mg of Toprol XL. I felt great for a long time with only occassional symptoms. After another case of afib in 2001 while on vacation (i flew across country while in afib, not my smartest hours) I found myself in in the hospital again. I ended up on Coumadin for six months but after 2 weeks I went back into a normal rhythm. It was during this time that a cute medical assistant was drawing my blood every week...we will be married in October . I few months later I was in afib again and this time I was electrically cardioverted. I have felt great ever since. I stopped seeing the specialist after the second hospital visit because he would not return my phone calls. I have been seeing a doctor at Deborah in NJ but I feel it is time to find a new specialist. I feel like I am at a crossroads because the last two months I have been having an extreme amounts of PVCs which are leaving me with some SOB and feeling very fatigued. This has been constant at times. Other times I have noticed it especially after eating a meal. Is this normal? It doesn't matter on the size of the meal or what I eat. Anyway. My doctor at Deborah is great but lately I have heard things like " I am not an HCM specialist", I didn't diagnose you", and "let's try this". I understand there is a certain amount of trial and error involved, but it is time to see someone with a little more insight to HCM. I am not real happy with the options he gave me. Right now it is either go back on the Verapimil or a choice of a few other drugs which would require hospitalization for w few days to be monitored. I assume he meant anti-ahrrythmia drugs which I would like to avoid. Well, sorry to go on forever, I just feel like I am starting all over and I guess typing all of this makes me feel a little better. Thanks for reading my 5 year history.

  • #2
    Re: I feel like I am at a crossroad.

    Scott,
    If you feel it is time to see someone new for an opinion---your right--its time. A specialist is not that hard to find...however it may take a little travel to get there.
    Your situation is very similar to many others I have heard from in the past 7+ years (all but the marring the nurse part that is )
    There are treatment - there are centers to help you ....
    Call the HCMA office and I will give you some names...this week is NUTS with the golf outing and the meeting - it is best to contact me Saturday 10-2est OR Thursday all day in the office 973-983-7429.

    Be well,
    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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    • #3
      Re: I feel like I am at a crossroad.

      Scott, Congratulations on the upcoming wedding! Lisa will be able to help you locate a specialist. It will be great to have this all done before the big event. Linda

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      • #4
        Re: I feel like I am at a crossroad.

        Scott -
        I hope to see you at the meeting! It was nice speaking with you yesterday!

        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


        • #5
          Re: I feel like I am at a crossroad.

          Scott, symptoms after a meal, particularly a heavy one or alchohol is very consisten with HCM.
          Sometime it's not always bad having HCM, you got to meet your future wife.
          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
          So if you are capable of thought then you are capable of great things
          Good luck and stay well.
          Glen

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