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New here- My Intro


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  • New here- My Intro

    Hi there,

    I joined awhile ago and thought I better do my intro and say hello to everyone. My name is Dolly, I'm 53 years old and was diagnosed with HCM 10 years ago. I was hospitalized with CHF and found to have complete heart block and a leaky mitral valve. I got a dual chamber pacemaker and had a newer model put in 3 years ago.

    I have SOB with any heavy exertion, limited energy and stamina with good days and bad. Occassionally I get episodes of CHF and treat that with rest & diuretics. I don't tolerate Beta Blockers well at all and instead I'm on a calcium channel blocker (Calan SR).

    After several years of feeling especially lousy with almost constant CHF, I had a mitral valve repair job in Nov. 1999, which didn't go very well. I didn't have internet access at that time but would have loved getting info and support from this group.

    I have finally recovered from the surgery and have felt pretty good the past six months with no CHF and more good days than bad. My mother (age 75) was diagnosed with HCM over 30 years ago and had some of the early pacemakers. She felt like a new woman as soon as she got her pacemaker unlike me. Her valve is alright and she takes different meds.

    I currently live in Huntsville, Alabama but prior to that we lived in S. Jersey and my surgery was in Philly.

    To be honest, I think I've given up on the search for better health but am willing to learn what has worked for everyone else here.

    Thanks for listening,


  • #2
    Hi Dolly

    Hi Dolly,

    My name is Dolly also! You don't hear of too many of us, but there's another Dolly on this board as well. Interesting. Anyway, welcome to the board.

    I'm sorry to hear about your rough times, but glad that you are currently feeling well. I'm sure that Lisa, Sarah, Linda and Reenie will chime in to welcome you and give you plenty of good advice. You didn't mention if you are currently seeing a specialist. So many times Lisa and Sarah have said that seeing a specialist makes all the difference, and it does.

    Good luck and best wishes for continued good days!

    HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07


    • #3
      Dolly, Welcome and thanks for sharing your story. It's been a busy few wks for Lisa, but she should be in the office this wk. Maybe you will be able to make contact with her soon if you would like to talk about anything in particular. You may just want to join in the board postings, reading past threads, etc. for a while. I'm glad things seem to be going well for you now. Linda


      • #4
        Welcome to the board, Dolly -

        You will find a lot of wonderful people here. With this forum you will always have a place to share your experiences, vent, ask questions, and find the often-needed support that help us all deal with such a complex condition.

        I hope you continue to do well.

        Thanks for sharing.

        Mom of Keanu
        4 years old (will be in March)
        Dx at 2 days old with Biventricular hypertrophy
        Dx at 6 weeks with HOCM
        Dx at 5 months with V-tach
        Dx at 3 with Noonan Syndrome


        • #5
          Hi there, Dolly. Welcome to our group. I hope that we become a place you come to learn, share, ask questions, and generally support others as well as get support. I do think that if you haven't seen a specialist yet, please call Lisa and she will hook you up with one. Her phone # is 973-983-7429 and if you don't catch her in the office, leave a message. She'll get back to you as soon as she can. I am happy to hear that you've had more good days than bad in the past few months. I hope that trend continues. Take care of yourself and again, welcome.


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


          • #6
            HI Dolly,
            A major goal for us here at the HCMA is to help each person living with HCM have the BEST quality of life they can! I have personaly worked with nearly 2000 families...and in the overwhelming majority of cases...once quality care is found and treatment custom tailored to each person quality of life improves!!
            DO NOT GIVE UP on the possiblity that a better quality of life is out there for you...we will help in any way we can!
            Take care!
            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)


            • #7
              Thank you all for the kind words and warm welcome.

              That's weird that we have three Dollys on the list, I'll sign my posts as Dolly Y to prevent confusion.

              If I join the association, am I sent info about how to find a specialist? I don't think I ever saw anyone except a regular cardiologist and an electrophysologist(sp?) when my old pacemaker was acting screwy.

              I'm also trying to get the book that Lisa helped with, but it was out of stock at Amazon last I checked. I'm hoping to get to the book store this week and will probably have to order it.

              BTW, I first found out about this group from the Harvard Heart Letter article.

              Dolly Y


              • #8
                Hi Dolly Y. I wanted to answer a couple of your questions. You don't have to join the association in order to get information on specialists. All you have to do is call Lisa. A specialist knows much more about HCM than most cardiologists, so it would be a good idea to see one. If for no other reason, you could just make sure your reg. cardio is doing the right thing. About the book, you can buy it through Amazon and maybe Barnes and Noble, but if you do decide to get a membership with the association you will get the book as part of your kit. Also, more of the proceeds go to the HCMA if you get it through us than if you buy it outside of us. And it's wonderful that you found us through a Harvard article. Isn't information grand?


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


                • #9
                  Dolly, welcome to what my family has started calling my second home. I have learned a lot from the people here. I was on vacation for 10 days and was having withdrawals. Till I found a computor to check to see what I had misses. I know that you will find a second home here also. Take care and have a great st. Patty's Day.
                  Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.