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I went to Boston!

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Dave Johnson Find out more about Dave Johnson
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  • #16
    Re: I went to Boston!

    I will chime in here a little
    1. HCM can present any time in life...from birth to 90 years +
    2. It is thought to be more common to develope it by 20-25 yrs of age - HOWEVER - in polls taken here by the HCMA the average age of diagnosis is nearly 40 years old.
    3. ECG's/EKG's often pick up abnormal patterns in the heart beat in those with HCM - about 10% have normal ECG's/EKG's
    4. Echo's pick up nearly all known cases of HCM - however there are some that are very difficult to pick up on echo and we are still learning about these cases.
    5. The role of MRI in HCM has not been clearly defined at this point. It will likely become more common in those cases where the echo is not providing ample information.
    6. Children and teens may begin to have cardiac signs (not symptoms but signs) of HCM before the hypertropy kicks in. This is one reason why follow up screenings should be done every 1yr to 18 months during rapid growth.

    On a side note - I would like to share a story - This will show you all where we are and where we need to go.
    Of all those who die from HCM - only 50% are diagnosed - the rest never have the oppurtunity to seek treatment because there first symptom is death. In the 7 years since the HCMA has been running we are aware of only 1 death that was a true HCM death however the person did not show any hypertophy - only myocardial disarray at autopsy - then a family screening found HCM elsewhere in the family.
    This story has always reminded me of how much we still need to learn about HCM and how little is really understood about the heart. At the ACC meeting a very prominant doctor gave a talk about the history of cardiology. It is simply amazing how far we have come in only 100 years - and the amount of progress in the past 20 could make your head spin...
    The moral of the story... WE have a great deal to learn and what we learn today will help our children and their children and so on.

    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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    • #17
      Re: I went to Boston!

      Hey guys,
      Just an update. I've been off Atenolol for almost 3 weeks now and my life has changed dramatically. I can function on a normal night's sleep (7-8 hours as opposed to 10-12), my short term memory has improved 200%, my blood pressure is back to normal (instead of of floating around 50/65!), I'm waaaay less irritable, more focused, less S.O.B., only slight fatigue, etc. etc. etc. - it's unbelievable.
      Oddly, I'm still on 900mg of Norpace (Dysopyrimide) per day - I've tried to back down from it but notice immediate symptoms, so I'm staying put with it for now.
      Dr. Maron has suggested increasing my Verapamil from 80mg to 160my per day and thinks I'll feel even better (is that possible? I'd forgotten what it was like to actually feel just 'ok').
      We are so incredibly indebted to the HCMA, Lisa, Tufts, Dr. Maron, and a young lady named Mindi Barger that helped us find this site. My wife and I feel like we have our life back.
      I can't emphasize enough- if you haven't been to a REAL HCM clinic - make it your top priority. General cardiologists mean well (I think mine is brilliant) but they just don't seem to have a grasp of the condition or merits of the various treatments. Don't waste any time - especially if you're feeling bad all the time. You never know what you might gain.
      "We come into the world and take our chances, fate is just the weight of circumstances - that's the way the lady luck dances...roll the bones." - Rush

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      • #18
        Re: I went to Boston!

        Dave,
        Thanks for the update..can you do me a favor...give Mindi a big hug from me!
        Be well,
        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)

        Comment

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