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My Story


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DLCC2 Find out more about DLCC2
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  • My Story

    I am a 45 yr. young female. I have had a heart murmur most of my life and it wasn't a big deal until I went for a pre-op physical for surgery 13 years ago. During this physical they didn't like the sound of my murmur and after much testing was diagnosed with a thick heart muscle and an explanation that I also had a mitral valve that wasn't working correctly. I was told then that it was no big deal and that I just needed to be medicated during dental visits. About 8 yrs ago started noticing shortness of breath that was not like my asthma. Was put on Verlan (sp)and I felt much better. Than about 5 yrs ago I started to have racing heart spells. This year in August I started having spells so strong I thought I was going to pass out. After a long string of tests that ended with a heart catherization and a diagnosis of HOCM. I'm also dealing with Hepatitis C and life time Asthma. I have been avoiding dealing with this latest medical condition (I am taking new meds Atenelol 50 mg. & Diovan 80 mg.)in that I'm very angry and I've been medicating that anger with food and not taking care of myself in other ways as well.

    I am very grateful for this web site. I visited it often in the beginning but didn't get involved. I appreciate the information I have found on this site and the support that the people have shared with each other. I look forward to learning and sharing with everyone. One thing that has really struck me this day is that I need to make sure my family needs to understand is that this is genetic and that they make sure they watch for it and are pro-active.

    Thanks again.


  • #2
    Welcome Friend.........

    Hi Diana...........I understand exactly how you feel. I am 41 and was diognosed almost 3 years ago. I had all of those symptoms and then some. I was so unable to be active and I also turned to food. I think anger is a major part of this.
    You have done the right thing by coming to the HCMA, here you will find people who understand and care.
    There are a number of treatment options as well as proceedures to help you with your fight with HCM.
    Get in touch with "LISA" here, the president of HCM and she will be glad to discuss any and all concerns with you as well as put you in contact with an HCM specialist, if you arent already seeing one.
    Seeing a specialist and looking at "ALL" your options are very important.
    Again ...welcome.....................Connie
    The BEST is yet to come !!


    • #3
      Hi Diana. Welcome to the HCMA. I hope you find the answers and support here that you need. You are right, your family definitely needs to be screened. Especially your children, parents, and siblings. You can call Lisa to get hooked up with a specialist in your area. The phone # is on the membership page of this website. And speaking of the site, you might like to read through all of the pages, not just the message board. You will find lots of information about diagnosis, treatment options, and other good to know stuff here. Let us know if there is anything we can do for you.


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


      • #4
        I am glad to see your post on the board and glad you have introduced yourself to all of us. Your story is not uncommon. Many of us deal with years of misdiagnosis before we here "HCM".
        I am glad you have found the website helpful and hope to see you again posting on the board.
        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)