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hello my name is Becky

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  • hello my name is Becky

    Hi everyone, I have been reading your posts for awhile and trying to learn as much as i can about hcm. I was diagnosed in December of 2002. Hcm with obstruction. About 10 years ago I had my first symptoms of sob, and just feeling so lousy. I had a complete workup and was told i had alittle thickening of the heart nothing to worry about. Since then i lived my life as best I could by limiting my activities day to day. This year in December my blood pressure spiked and i was so short of breath and dizzy. Another round of tests and this time they knew exactly what was wrong. I'm on lopressor 100mg bid and imdur 30mg. My pressure and pulse are good but i'm still very short of breath. Tomorrow i'm having pulmonary function tests to see if maybe some asthma plus the lopressor could be the problem. If so they said they could try a channel blocker. I went fora second opinion in Boston and they think i'm a candidate for alcohol septal ablation. I'm not ready to make any decisions just yet. I have a wonderful cardiologist who said i'm not an expert on this subject but I will keep researching and calling everyone until we can make an informed decision together. She is a peach and i feel blessed to have her. I also have a great husband and one son who is also scheduled to be tested this month. This is not the news one hopes for but i'm a positive person and with a tear or two here and there I know I will be fine. Any help anyone can give will be appreciated. Thanks for being there. Becky

  • #2
    Becky,

    As many here have said... Welcome to the club you never wanted to join! As you may already know, or are learning, symptoms and treatment of HCM and HOCM vary with the individual person. I am glad that you have had a second opinion (I assume by an HCM specialist) and also have a good cardiologist who is willing to learn with you.

    There is a lot of information in this site's archives that you may wish to read. Please also give Lisa, HCMA's President, a call as well. Please post any topics of concern, we're here to help.

    I recently had a myectomy in November 2002. I'm not sure I could have made that decision if I had not found this forum.

    Good luck on the path to feeling better.

    Bob Hartwell
    Cleveland Myectomy Crew
    Member since November 2002

    \"Chance favors the prepared mind!\"

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    • #3
      Welcome....

      Hi Becky.....Its nice to meet you........I just recently, Jan. 21st 2003 had my Septal Alcohol Ablation @ MUSC in Charleston S.C.. So far I feel much better and am glad I made the choice to have it done. My advise is to make sure you are evaluated by an HCM specialist and take a look at all your options. This place is a life saver, HCMA, I dont post a lot but I do visit everyday just for the support and friends. When I first came here I was so confused and found answers and some peace of mind here. Connie
      The BEST is yet to come !!

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      • #4
        welcome

        Dear Becky,

        I'm glad you found us. Did you see the HCM team at Tufts-New England Medical Center in Boston? Because that is the only group in Boston the HCMA recommends. Your cardiologist sounds great, but it is important to stay in touch with the specialists and have the doctors consult from time to time.

        Betablockers can cause asthma-like stuff as a side effect --not very often, but possible. Whatever you do DON'T go cold turkey with a beta-blocker --it can make you worse. So if you decide to switch, please taper off slowly. Not even some doctors know this, just so you know. (I know this the hard way.)

        Keep us posted and take care,

        Sarah

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        • #5
          Welcome Becky,
          I can offer this advise, move slowly, learn about HCM and make careful choices.
          Slight correction to Sarah - there are 2 centers in Boston that are very good - Harvard and TUFTS - TUFTS is spending a great deal of time and energy on building a large center - the structure of there program is a bit different then Harvard. Harvard is the leading center in the terms of genetic studies and a top program as well.
          Get to an HCM specialist, think it through and make the best choice for YOU.
          By the way how old are you?
          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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          • #6
            Hi, Thanks for all the responses. I went to Beth israel which is the teaching Hospital for Harvard, but I will continue to get more opinions as I go along and if and when I need surgery I would prefer to go to the most experienced Dr. and Hospital. I feel that i've been very lucky so far everyone has gone out of there way to get me the help I need. Does anyone take plavix? Oh yes and Lisa i'm 52 and gorgeous Becky

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