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Agapi Find out more about Agapi
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  • Death?

    I have been diagnosed now for four years I am currently 18 and lately I've been having a lot of pain in my in my chest and left arm that spreads to my back, neck, and jaw I have always been more symptomatic with shortness of breath, high heart rate, fainting and so on sometimes i cant even walk down the hall without me not being able to breathe and other times i can be sitting doing nothing and my heart rate can easily reach 160 i have a septum thickness of 2.9 and the last doctor i just went to two weeks ago behind my parents back (because they hate doctors) he told me he finds it 100% necessary for me to get an ICD because he is very worried of sudden death that he said can happen at any moment because my heart is working way too hard and I have told this to my parents once again because many doctors have told them before that I am on the danger side but they won't listen they think that just keeping healthy will make it all better but it got to the point where my symptoms where getting so bad I had to drop out of college this semester I don't want my life to be like this and I've learned how to deal with the boundaries but it seems to keep getting worse and my husband tells me that I am playing with fire that will not give me a second chance which scares me for once because I've never taken the death part too seriously since not a high percentage of people die with this heart problem and I have my whole family telling me I'm fine just because I am young but my body does not feel fine and its honestly starting to really worry me and just because my mom who has it too (significantly less thick than me) is still alive and so is my grandma even though we do not have the same thing she is convincing herself theres nothing wrong with me they wanted me to stop getting checked up even though they told me i have to be coming at least every year they wont let me get on medication (I've secretly started this past week and its been actually helping me) or have any surgery even at the beginning when i first got diagnosed they said the doctors where lying even though they had taken me to go see if i had asthma because I was having so much trouble breathing when I was younger and I couldnt exercise anymore anyways they took me off the insurance so i cant pay for surgery and it really hurts that they would take that chance so I dont know I could really use your opinions concerning my case based off of your experience too any help would be greatly appreciated!
    Last edited by Agapi; 03-07-2017, 04:11 PM.

  • #2
    I'm sorry this is happening to you, I'm assuming you are in the USA since insurance is an issue. It definitely sounds like you have life threatening issues, I had some of your issues while I had my ICD until all my meds were right.....I don't want to make assumptions but are your parents nuts?

    I dont know much about US social services, hopefully someone here can help you find any help possible. I'm not a very religious person but I will pray for you.

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    • #3
      If you are in the USA, at 18 yrs old you are an adult and decisions are now yours for your own body. It sounds to me like You truly need to be seen by an HCM specialist , need medication , quite possibly need an ICD and maybe surgery. There may be programs for you if you do not have an income or insurance. Generally you need to work that out with the medical center you go to to be evaluated.
      You also may want to call the HCMA office and talk to them about your problem. I'd like to say a good HCM doctor might be able to change your parent's minds......but Maybe not.... You need to learn all you can about your disease so you can feel strong in your health decisions. If you are still in high school you might want to report what is going on to a counselor or the school nurse .... or your pediatrician if you have one still. You can try local social services also.
      You are correct that your health needs attention.... you have a treatable condition....but ignoring it could be dangerous.
      please find an adult you trust to help advise you on what to do......and call the HCMA, they will help also.
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

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      • #4
        Jill is right: HCM is treatable (but ignoring it is a very bad idea). Please call the HCMA office!

        Gordon
        Myectomy on Feb. 5, 2007.

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