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Just Diagnosed.

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marjen Find out more about marjen
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  • #16
    Re: Just Diagnosed.

    I think I understand the reason behind the beta blockers. I don't feel any different on them yet which is good as I understand it can make you feel lethargic. Plus I think he gave me a low dose (25mg) so I'm hoping that is a good sign.
    Its great to have a resource like this, the wonders of the internet. Without it I'm sure it would be harder for all of us, as I'm sure few of us know people with the condition in our everyday lives. I'm slowly coming to grips with things. The hardest part (and maybe the biggest eye opener) is looking at my two young children. I guess one always feels they will be here forever and forgets about the little things. INstead of my usual weekend handyman projects I spent most of the weekend with them and I am going to try and do more of that.

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    • #17
      Re: Just Diagnosed.

      I completely understand your concern for your children and their lives. I have 3 kids myself. When my husband was diagnosed they were 4, 7, & 8. I have certainly been in your shoes. And my husband was about the same age as you, he was 35. That was 3 years ago and he continues to do well. The biggest plus is that so far all of my children have screened clear of HCM. I'll continue to have them screened anually, but that's wonderful news for the moment. Good luck and know that we're here for any questions or support you need.

      Reenie
      Reenie

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

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      • #18
        Re: Just Diagnosed.

        When faced with diagnosis of any chronic condition you concider the effect on those you love, often your children. This is a process that we have all been through or are in at some level. The issues may deal with how you will function in your family, work and play life, you may wonder if you will be there for your family or will the disease take you away, you think of finacial, social and other impacts this may have on your life. This is common and I believe this is healthy. Only after you have allowed yourself to look at these issues, as painful as they may be, you can get on with your life, understand its importance and take the best care of yourself possible.
        So what about betablockers...in short they give your heart a bit of a break from the force of the beats and helps your heart relax so that it fills better. I wouls estimate that 80% of those with HCM are on some form of a beta blocker.

        Best wishes,
        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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        • #19
          Re: Just Diagnosed.

          Now I'm a little confused. I just talked to my dr. I finally got the nuclear stress test and echo cardiogram results back. He says that he now is fairly certain I do NOT have cardiomyopathy. THe echo showed NO thickening of the heart wall, it is at the upper end of normal. Last years showed a similar result, but he said this one actually looked a little better. My stress test was completely normal, my fitness level was excellent and my heart pumps vigoruously, which he said was excellent. The only thing he still sees is a very subtle narrowing of the path between the aorta and left ventricle and something about a small overflow? issue. He has me on beta blockers and wants to continue that and check on it on a yearly basis. He still recommends I stay away from lifting weights as that can thicken the heart wall, but does not feel I should any issues with my normal running although I may want to tone it down a bit.
          So while I am glad to hear all this I still feel a bit weary of the situation. Another doctor that he works with looked at the results and did not see anything that concerned him at all. Does this all make sense?

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          • #20
            Re: Just Diagnosed.

            Do you have high blood pressure? Have you been an avid weight lifter/athlete? These things can cause the heart walls to get thicker too. Lots of things that can be going on. Please call LIsa and I'm sure that she'll have some directions for you to look in to figure out what is really going on.

            Reenie
            Reenie

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

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            • #21
              Re: Just Diagnosed.

              No high blood pressure. It usually is on the high side of normal like 135/80 or 130/72. He actually says there is no thickening. I'm within the normal range. It is this subtle overflow issue that is keeping him from saying 100% I'd don't have HCM. THats what worries me right now. He said is isn't going to diagnose me with HCM, but still can't say for sure its not there. Something is causing the minor obstruction and overflow issue. He now thinks the fainting issue on the roller coaster was not directly related to my heart. I am glad all the tests look good, but would feel better if it was conclusive. THere is always going to be that lingering doubt.

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              • #22
                Re: Just Diagnosed.

                Good news!!!
                If you still feel worried you may ask for a second opinio in an other center/hospital.
                Wishes for healh, peace and love!

                Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                Haifa - Israel.

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