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Very Concerned Aunt

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DLCC2 Find out more about DLCC2
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  • Very Concerned Aunt

    My sisters 12 year old son last year was required to take a physical. My sister told the Dr. about my HOCM. He did an echo. HOORAY for him. He felt as though he saw signs of HCM. He referred my sister and her family to the Univ. of Oregon Medical Center where they told them he should possibly get a stress test. That was the way it was left. They didn't have the money.

    Now the story is the Dr. told him he can play football and it's no big deal. I inquired about the stress test and my sister came up with excuses like their insurance wouldn't cover the test unless he had signs which is why the Dr. said he could play football. Also because she didn't have it was a good sign her son wouldn't.

    We had a very heated discussion in which she told me I was being overly dramatic and to lighten up. She believes God has him covered. I reminded her that when her 9 day old son died from a heart defect, he had him covered too. But this time your getting a heads up.

    Sorry I'm going on and on. I'm just deeply sad, scared, angry and helpless.
    I'm open for the words of wisdom of those of you who have children with this illness, people who've had family members who think your just being dramatic and negative or dark and not a lot of fun. Bottom line i guess is that I've done everything in my power to empower them with knowledge and should the worst happen, God forbid it does, I can look at myself in the mirror and my God.

    Diana

    P,S. My nephew that died "Timothy" was missing one chamber of his heart". It was not HCM.

  • #2
    Re: Very Concerned Aunt

    Diana - This is a tough one. It will be hard for you to rest easy until you know the clearance is definite, not muddled as it seems to be.

    You might try calling the HCMA office and discussing with them what they would suggest as the next step and ask for the info packet to be mailed either to you or your sister. Your sister may be more receptive to info from another than from you. Point her to the website to learn about HCM for herself.

    I wish you the best in this - thanks for caring and trying so hard - your nephew is certainly worth it! Linda

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    • #3
      Re: Very Concerned Aunt

      I have no suggestions but want to offer my support.
      Reenie

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

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      • #4
        Re: Very Concerned Aunt

        Originally posted by DLCC2 View Post
        He felt as though he saw signs of HCM. He referred my sister and her family to the Univ. of Oregon Medical Center where they told them he should possibly get a stress test. That was the way it was left. They didn't have the money. [...] Now the story is the Dr. told him he can play football and it's no big deal.
        Hi Diana,

        You have all the right to be angry, frustrated, and saddened by all this. I, too, would be upset. But I don’t know that I have words of wisdom for you.

        Looking objectively at your predicament, it’s sad but it doesn’t seem like there’s much you can do. You must remind yourself that although the 12-year-old boy is your beloved nephew, he’s also your sister’s son, and therefore lives under her custody and care. It is your sister who ultimately decides what’s best for him.

        Having said that, it seems like all you can do is to (a) persuade her to keep the boy from competitive sports, (b) convince her to get the stress test done, or (c) offer to pay for it yourself (if money is the only issue, this might help change her mind). If there’s already one documented case of HCM in the family AND the doctor’s seen signs of HCM in your nephew’s echo, it seems irresponsible not to pursue a definitive diagnosis.

        Your post sent me looking for my copy of HCMA’s book “Hypertrophic Cardiomyopathy for Patients, Their Families and Interested Physicians (2nd Edition).” — an excellent book, by the way. Here’s what it says on page 56, under Family Screening: “When an individual is diagnosed with HCM all close relatives should be advised and afforded the option of screening for the disease with an echocardiogram and ECG. It is important to remember that such a family evaluation is potentially important because HCM may be present, even without associated heart symptoms.

        It goes on to say, on page 58, that: “Early echocardiography is also recommended for those young family members who are in intense competitive athletic training programs, since HCM is the most important cause of sudden death during sports in young people and disqualification from that lifestyle would reduce risk. In general, we recommend serial echocardiograms (and ECGs) about every 12-18 months, from the onset of puberty (which may vary from about 10 to 13 years of age) throughout adolescence or, until the echocardiogram ‘converts’ from normal to abnormal.

        You may want to get your sister a copy of the book, or at least read her the above. But ultimately, it’s her choice, and she must bear its consequences.

        Good luck to you and your nephew!

        Originally posted by DLCC2 View Post
        She believes God has him covered. I reminded her that when her 9 day old son died from a heart defect, he had him covered too.
        PS: I agree. I’m not sure I'd be this certain...or be so confident as to know His mysterious ways. Do all you can to have your nephew tested.
        --
        HCM patient on a quest for access to the data collected by my implantable electronic cardiac defibrillator. Diagnosed with HCM with obstruction in October 2006, at age 40. Estimated LVOT gradient of 10-23 mmHg at rest, 147 mmHg with exercise. Passionate about connected health. Join me on my quest.

        On TEDx: http://bit.ly/ICDdata
        On Twitter: http://twitter.com/hugooc
        --

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        • #5
          Re: Very Concerned Aunt

          I truly understand your frustration. My exhusband was diagnosed in 1996 and I had my children tested every year since 1996 to now. My son was diagnosed in 1995. My exhusbands brother also has HCM. He has two children and 5 grandchildren. None of them have been tested and I fear every day for them. I have pleaded and begged. The problem is that the two kids do not have health insurance and the 5 grandkids are on a state medical care program. I have finally gotten my nephews kids scheduled to be tested and one of them is already complaining of chest pains. I fear that I will receive a phone call one day saying that one of them have died.

          I have given them all of the information, medical documentation and advice I can. My ex brother-in-law seems convinved that girls cannot have it since he, his brother and my son are the ones with it and they are all boys.

          I have given him names such as Lisa's here, and many others.

          That is the most frustrating part. What I don't know is what can people do that do not have health insurance. My nephews is 26 and my neice is 24. They both could be walking around with it right now.

          Is there anyway to get them tested with out insurance? We are working on doing the genetic study for James and hopefully we can get that done and get everyone to do a blood test.

          It is the most frustrating part of this disease I have had to deal with. Knowing there are 7 people out there of which 3 probably have it and are not being tested. I don't want anything to happen to any of them. I don't know if I could deal with it. So I plan to keep trying!

          Good luck and just wanted you to know I feel your frustration. I also been accused of over reacting. Janet
          My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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          • #6
            Re: Very Concerned Aunt

            Thank you to everyone for their words of support. Many of you who share the same frustrations and fear helped me be a little less stressed and I got some piece that it wasn't just my family out there on another planet. Or me even.

            The great news is that I received a call from my brother in-law my sisters husband and he said he was getting a stress done on Joshua. He thanked me stepping up to the plate and shaking them up. They remembered this site that I had given them twice last year and went on it and the combination changed their minds. Halleljah. I can't believe it's really happening considering where we were 4 days ago. Plus their going to have my niece checked as well and my sister.

            Thank God and all His Angels for this Association. It is truly a blessing in so many ways. One last thing, when I see my card. in two weeks to talk about stomach surgery I'm going to talk to him about doing genetic testing. I read the articles on this site and they are very exciting. If I'm reading the articles right, once they have my markers then all my relatives have to do is have their DNA matched to mine to see if they have any of those markers rather then go thru endless echo's and ekg's etc.

            Well that's all for now. Thanks again to those of you who wrote.

            Diana

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