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Daughter diagnosed with HCM

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  • Daughter diagnosed with HCM


    I have a daughter that is 25 years old and was diagnosed with HCM almost three years ago only after some spells that warranted hospital trips but to no avail as no one would listen to us. Said it was anxiety.....Even though I explained that her father had died suddenly at age 37 from HCM. My daughter had about 4 years of chest pains, alot of stomach problems, etc. She was playing competetive soccer at the time of the first problems. They suspected it was activity induced asthma and put her on inhalers. Symptoms got worse and she slept alot. Only found out her problem by pushing the doctors nonstop. At age 22 she had an ICD put in and went on beta blockers. She no longer has the stomach problems (which the doctors say was from heart problems) and looks healthy. Is due tomorrow for an echo. I'm praying for her. Only hope she will have a normal life and can live it to the fullest.
    Life may not be the party we hoped for, but while we are here we might as well dance.

    Sherry

  • #2
    Re: Daughter diagnosed with HCM

    Hi, sorry to hear of the problems first of all! Your daughters situation sounds very similar to many I have read on the board, I knew I had a "problem" for nearly 20 years before I was diagnosed. Good part of your story is that she is being treated and with that she should have a long productive life ahead of her. Good luck and keep us posted! Rick
    \"A Misty Morning Does Not Signify A Cloudy Day\'

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    • #3
      Re: Daughter diagnosed with HCM

      Hi! Im 24 and was diagnosed when I was 17, I also have an ICD - sounds like your daughter and I have alot in common!! Good luck with the echo.

      Ali
      Proud Heart Transplant Recipient - November 6, 2004.

      Comment


      • #4
        Re: Daughter diagnosed with HCM

        Good luck with the upcoming echo. I'm glad you were persistent and got her diagnosed and an ICD. We're here if you want to share more or ask questions.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Daughter diagnosed with HCM

          Good luck with the echo. So many of us have been there before, isn't it great to know that you have a link to aother people out in the world who understands. I've also got the ICD in 2001 and I am here if you want to talk more.
          Jen
          Jen

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          • #6
            Re: Daughter diagnosed with HCM

            Sherry,
            I dont know if my private message got through to you - let me know if it did - glad to hear all went well

            Ali
            Proud Heart Transplant Recipient - November 6, 2004.

            Comment


            • #7
              Re: Daughter diagnosed with HCM

              sherry,

              i'm in my 30s and also recently diagnosed. both my wife and i know exactly what you're going through since we went through all this uncertainty ourselves 18 months ago. you should know that with the icd the worst of it (the fear that you or someone you love may disappear without warning) is gone. almost everything else--should it ever be an issue, and for most hcm'ers it is not--is treatable and controllable. fortunately for me, i was never an active person (to put it mildly) and so the lifestyle restrictions were more like continuations for me! i'm sure that is one of the things that is hard for your daughter. but you know when certain things we like to do our closed off to us we usually find new things that we like just as much if not more.

              but waiting for those echoes is the worst part! during my first echo the tech (who had never heard of hcm) told me my heart was great! as i was leaving they came running after me so that the doc who'd happened to see the film right away could tell me that no, i actually had hcm! (talk about good news and bad news!) in your case, your daughter is already diagnosed and has the icd--there will likely be very few surprises in the future.

              you should look to these boards for information and community but keep in mind that those of us with the most problems are understandably the most vocal (because we need the most reassurance or have the most problems). please don't get the sense from these boards that bad things are inevitable. the path of hcm for each person is unique and individual--within families as well--my father has a MUCH milder case of hypertrophy than i do, and he was a fighter pilot (who still hasn't been officially diagnosed).

              regards to you and your daughter,

              mongo

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              • #8
                Re: Daughter diagnosed with HCM

                I agree that some of the people here who are the most vocal are the most symptomatic or "sick" but not all of us. My husband's septum is extraorinarily thick, 3.8 cm, but has has very few symptoms. And his grandmother is 91 and has HCM. All of us are different. Regardless of who is posting, there is a lot of information here.

                Reenie
                Reenie

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

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                • #9
                  Re: Daughter diagnosed with HCM

                  Originally posted by Reenie
                  I agree that some of the people here who are the most vocal are the most symptomatic or "sick" but not all of us. My husband's septum is extraorinarily thick, 3.8 cm, but has has very few symptoms. And his grandmother is 91 and has HCM. All of us are different. Regardless of who is posting, there is a lot of information here.

                  Reenie
                  reenie,

                  i didn't mean to imply that only the information from the people with the most symptoms count or that anyone who posts a lot must have (or must have a family member who has) lots of symptoms or "problems". and i certainly hope no one thinks i am saying that people with a lot of symptoms or "problems" of whatever kind shouldn't post just as much as they like. and boy, am i glad there's someone who has a septum thicker than mine!

                  my point was only that there is only a point to which it is safe to extrapolate from conversation on any forum anywhere on health issues. and for newcomers to a site like ours it isn't always easy to parse what is the norm and what is exceptional or less usual. for example, when i was first put on beta-blockers i went looking for information on side-effects. i found a site (don't recall the url) that had people posting side-effects for various medicines. reading the entries for toprol i panicked--thinking i was pretty much going to be done for. my wife pointed out to me that the people most likely to post to sites like that one were the people who'd had the worst reactions.

                  didn't mean to offend anyone, and i hope i didn't!

                  regards,

                  mongo

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                  • #10
                    Re: Daughter diagnosed with HCM

                    Balanced is how I like to think of our approach. There are many with significant symptoms, and many with minimal symptoms. My favorite thing to chuckle at is when people tell me they have "a little HCM" - my canned reply (which many of you know) if "its kinda like being a "little bit" pregnant!" If you have HCM you have HCM. Your symptoms may be different, they may run in cycles, they may be very bad all the time, they may sneak up on you when you least expect it. You may have a "small" septal measurement - 1.5 to 1.9 and have MANY symptoms or have a "Big" septum and have little to no symptoms.

                    Some symptoms can be managed with meds with ease - some can not. It may take months or years to find a good mix of meds to manage the syptoms and for some that magic mix may never come and they must live with the symptoms. Everything is variable, thus HCM is a frustrating condition to live with.

                    Just some thoughts,
                    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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                    • #11
                      Re: Daughter diagnosed with HCM

                      Mongo, I didn't take offense. I was just pointing out how variable our members here are. You're right, newcomers often have a hard time knowing how to take the info here. Thanks for your thoughts.

                      Reenie
                      Reenie

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

                      Comment

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