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new to the site...boy, do I feel uninformed


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Chuck Find out more about Chuck
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  • new to the site...boy, do I feel uninformed

    compared to some of you!

    just had a cardio visit yesterday...doc wants to switch and up my drugs, so I was just browsing around, looking for some info, and I found this!

    reading your stories prompts so many questions. I guess I didn't realize how "in the dark" I am about this disease, even though I've known about it for 16 years. everything I've seen or read or been told is oh so vague.

    considering my depth of knowledge on other nerdy pursuits, some medical in nature, I'm aghast to learn how ignorant I am of my own situation in this case. live and learn, eh?

    well, I don't know where to start. I guess whats bothering me today is the prospect of increasing my beta-blockers, when I generally feel that this treatment is worse than the disease itself. I've had a love/hate relationship with ccb's and b-blockers since I started taking them...reluctantly, many years ago. at times, I went "drug-free", and felt much better, overall. yet now, this doc has somehow convinced me to not only stay on the meds, but actually go UP, thinking that I'll feel better on a higher dose. seems to me that if a little bit makes me feel bad...more makes me feel worse....even more still is going to pretty much put me to sleep!

    I know...I dont' think we're supposed to talk about specific issues in this particular forum. so let me just tell you that my disease was not diagnosed as the result of an inquiry into any sort of symptomatically prompted complaint on my part. it was accidentially "discovered" in a very thorough career-ending physical exam. I never would have known I had anything wrong with me, otherwise. yeah, I get winded when I run up a flight of stairs. who doesn't? I had occasionally noticed a racing heart beat. too much caffeinne, right? skipped heart beats...same thing. well...apparently not. LOL! (who knew that you aren't supposed to be constantly aware of your heartbeat? nobody ever told me that. thump, thump, thump,....). So anyway, I've been faithfully going to my routine followups over the years, getting my echo's done, etc. But I have no idea what my "gradient" is. I have no idea what the thickness of the septum is. I am told that nothing has changed over the years, and that's a good thing. I do know that there is obstruction (how much, I don't know), and some mild mitral valve regurge. (tiny amount..doc says). no family history.
    What I do know is that I am not particularly pleased with the meds, and I'm not looking forward to taking more. I am looking forward to chatting more with you folks, and learning.

    I will offer this one jewel of information: if you're male, and interested in child bearing...avoid the calcium channel blockers. mention this to your cardiologist, and he'll look at you like you've got 2 heads. but ANY reproductive specialist will tell you the same thing. why they don't print this in BRIGHT RED LETTERS on the bottles...I can only theorize....

    clueless no more....
    dx'd HCM @age24, (1989) |Gene + |no family history

  • #2
    Welcome Chuck.

    Your post brought back many memories. I was diagnosed in 1990. I learned more about HCM on this board in three months than I had in the previous 10 years of knowing that I had the disease.

    You will find many people here with lots of experience and knowledge. You may want to give the office a call and chat with Lisa. She is the resident walking encyclopedia on HCM. It may also be a good idea to have yourself checked out by a HCM specialist. I believe there are a couple of very good cardio types in Boston who are experts in HCM. Again the HCMA office can get you that info too.


    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness


    • #3
      Chuck, Welcome, and yes, do call Lisa when you are ready. You'll get so much info here, but talking with Lisa will help you with specifics for you. Glad you found us, Linda


      • #4
        Welcome, Chuck. I'm glad you found us too. I hope that you learn a lot with us and that we can learn from you too.


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


        • #5
          Welcome Chuck fellow Massacusetts HCMer. You have come to a good place and we are here to assist any way we can. Do call Lisa when you can , she will only enhance further the path you travel.

          Best wishes.

          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


          • #6
            Chuck, welcome.

            Like you, I just recently discovered this "place". Similar to Leon, I've learned so very much more about my HCM reading this forum (almost daily) for 2 months, than in the 9 years since I was diagnosed with HCM. You have come to a wonderful place with informed and caring people, accepting of everyone and their ignorance. Like you, I went to my yearly checkups and was told "no problem, come back next year" for years. No use beating ourselves up about info we didn't know, just gotta start where we are.

            I really relate to your saying "who knew that you aren't supposed to be constantly aware of your heartbeat? no one ever told me that". My cardiologist used to listen to my heart and ask was I SURE this wasn't bothering me more??? So many times I answered, I don't think so, BUT it is the only heart I have ever had. I don't know what other hearts feel like.... (I once asked him, what do you hear that makes you say that? and he said my heart sounded like the agitator cycle on a Maytag washer--which it does...)

            Any rate, you've come to the place where there's always support and information. Talking with Lisa Salberg is really useful too, she gave me a lot of good information.

            Best wishes, Lisa Inman


            • #7
              Welcome Chuck

              I was diagnosed almost 10 years ago. I too learned more in just a few months from this site than from seeing doctors for 10 years.

              It is good to have you with us. I wish you wellness.

              49 yrs. old
              Diagnosed at 31.
              Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
              First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
              Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
              Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
              My brother passed away suddenly at 34 yrs old from HCM.
              2 teenage children, ages 17 and 15.


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