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why some ppl I found don't post ?

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blazinspirit 30 yrs old, diagnosed hcm in 1988, ICD implant 2001 & replaced 2005, AF,CHF Find out more about blazinspirit
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  • why some ppl I found don't post ?

    I have recently found 2 other ppl with hcm in my area, one I talked to personally for a little while, both seems to be in denial and also not getting good care, I gave both good advise and the links to here and to the CCF and none have posted or registered from what I can tell, I don't understand it.

  • #2
    Re: why some ppl I found don't post ?

    You can lead a horse to water, but you can't make them drink!

    I can't get members of my own family to get tested! It's just how it is. People don't want to acknowledge that there is something wrong, or can't face their mortality, or whatever.

    All you can do is point them in the right direction.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: why some ppl I found don't post ?

      I can't get my family to get tested or anything else or get their children tested. Like Cynaburst says, you can lead the horse to water.... I guess my family feels this is my problem and not theirs. I have tried to tell them its genetic etc. Thats all I can do and you did what you could do.

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      • #4
        Re: why some ppl I found don't post ?

        I just returned from a visit with my brother in Germany. He still has the same glasses he had 20 years ago, and he has trouble reading. I discovered he has not seen an optometrist for 20 years. I asked him why he doesn't go to the eye Dr. He had numerous excuses, but none that held a lot of water. I kinda gave up on getting him to see a cardiologist after that.

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

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        • #5
          Re: why some ppl I found don't post ?

          Holy Cow!! They live that close to The CCF and have never been there!

          The only thing that keeps me from moving to Cleveland is that I have 2 children ages 12 and 9 who live in Phoenix and their dad will not leave the state.
          Therefore, I have to live here to be around my children.


          Otherwise, it would be adios Phoenix.
          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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          • #6
            Re: why some ppl I found don't post ?

            I have told my family and they have witnessed 3 people in the family die from it and still won't get tested, I think they feel if they don't get tested then they don't have it, I have had 1 brother get tested but I don't think he is getting good care because they are treating him as though he has Hypertention even his EKG looks like he has had a mild Heart Attack and I have told him to go see someone else and I have heard nothing go figure

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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            • #7
              Re: why some ppl I found don't post ?

              Even if your family got care, it doesn't mean they would join the HCMA or the message board and post.

              50% of my family has HCM and they all go to the doctor and take medicine, but they never come to the site or post. One of my brothers has read some of the site once, though, I think. But otherwise, nothing. And i used to be a moderator here.

              Just not their thing...

              S

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              • #8
                Re: why some ppl I found don't post ?

                I can sympathize with people who are in denial and thought I'd try to present that side.

                My daughter was diagnosed with HCM in May, at age 14. She has no symptoms, but is now on drugs and being considered for an ICD. Her life is forever changed, yet the odds are in her favor of living a long normal life without this burden of medical intervention and fear. I keep thinking, "does the knowledge of HCM in patients without symptoms really do much good?" My logical side says "yes, of course," because the drugs and the ICD can reduce the risk of sudden cardiac death. As parents we feel that the down side of SCD is worth the hassles of the medical intervention.

                However, follow this alternative logic; SCD hits a minority of people with HCM, so most people would be better off without knowing. Only the minority who face SCD get a benefit by knowing that they have HCM.

                The catch is that nobody knows if they are in the risk pool for SCD or not if they don't have symptoms. The guidelines for high risk (history of syncope, family members early death, obstructed outflow path, septum > 30 mm, SOB, etc.) identify those who definitely need intervention, but for those without these symptoms there is something to be said for being dumb, and happy. Ignorance is bliss.

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                • #9
                  Re: why some ppl I found don't post ?

                  Blazinspirit,
                  It is good of you to try to give those others some good advice, but questioning their doctors orders is something that a lot of people would never think of.

                  I grew up in Medina, just an hour from the CCF and never thought of going there myself. It was the kind of place people went with "real serious illnesses". My cousin went there because he was born with an heart defect, he died when he was 18, from a variety of complications, but to my knowledge he did not have HCM.

                  As for the testing and care issues, the rest of my family do not even want to be tested either, my children would rather not know.

                  There seems to be a lot of HCM in Ohio. I've noticed a lot of locations listed in general areas of Ohio. I am presently in Columbus. Where do you live in Ohio? Do we have a tally of how many members of the baords live in each state?

                  JudyA
                  Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                  Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

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                  • #10
                    Re: why some ppl I found don't post ?

                    If indeed there are as many undiagnosed HCMers out there living to ripe old ages with asymptomatic lifestyles, it makes me question how (un)fortunate I am about knowing I have it!

                    Nick

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