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Am I Going To Die?


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TammyC I have 3 beautiful children who mean the absolute world to me. They are my life...... Find out more about TammyC
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  • Am I Going To Die?

    Am I going to die from HMC? Can I have a normal life???? I'M SO SCARED.......

  • #2
    Re: Am I Going To Die?

    Tammy -

    People with HCM can live a normal life with some limitations. It looks like you have been around the site here. Call Lisa Salberg in the HCMA office. The number is 973-983-7429. She will be able to answer your questions and find an HCM specialist that hopefully might be in your area if you aren't already seeing one. Feel free to continue posting your questions and/or concerns here also.

    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome


    • #3
      Re: Am I Going To Die?

      Dear Tammy,

      SheliRenee is correct about those of us living normal lives with some changes. In fact, most of us with HCM live to normal life expectancies. Yes, we do need to manage our health and its care but for the majority of us, life marches in step with those around us without HCM. However, I think most all of those here on the board can relate to moments of anxiety over our future; some days it just becomes overwhelming.

      Hang in there and if you aren't seeing a specialist please get in contact with the HCMA office for reccomendations - a specialist can make all the difference not only in your care but for peace of mind as well.

      All the best,
      Lynn Stewart
      HOCM 4/2002
      Cleveland Myectomy Crew 8/2002


      • #4
        Re: Am I Going To Die?

        Dear Tammy,

        Shelirenee and Lynn are absolutely correct! Hang in there. Don't let those feelings of anxiety get you. Talk to your doctor about what your expectations should be for you.


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


        • #5
          Re: Am I Going To Die?

          Dear Tammy,

          You are probably more likely to die from a car accident than from HCM. If properly managed, you can absolutely live a full life span.

          Please see a specialist to make sure you are on track for that.

          We all get scared from time to time and yes, there are no guarantees. But we do the best we can.

          One of my favorite quotes: Why should I fear death? If I am, death is not. If death is, I am not. Why should I fear that which cannot exist when I do? -Epicurus, philosopher (c. 341-270 BCE)

          take care,



          • #6
            Re: Am I Going To Die?

            Are you going to die from HCM? Maybe...but in all likleyhood it will not be much sooner than the average life expectance in the USA. You need to be evauated for risk factors for S/D and take action if needed.
            Most people with HCM live normal life spans and you will likely be fine...getting good care will help you manage your symptoms.

            Be well,
            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)


            • #7
              Re: Am I Going To Die?

              Hi Tammy, been there, thought that, but not for a long time now.
              I am 55 and feel better now than I did 25 years ago and still plan to be around for at leat another 25. So much for feeling like I was going to die back then.
              Sometime ago when you first started posting I suggested that you have your currect doc refer you to Dr. Wigle at Toronto General Hosp.
              They have an excellent HCM unit there and Dr. Wigle is a very well know HCM specialist, people come from all over Canada to see him.
              Don't sit around in fear, take some action and go see him, he maybe able to eleviate some of your fears.
              Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
              So if you are capable of thought then you are capable of great things
              Good luck and stay well.


              • #8
                Re: Am I Going To Die?


                Don't give up the ship. There is lots of help out there and lots of living proof that we'll be around for quite some time. Don't get discouraged and most of all keep a positive attitude.

                God Bless.
                Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
                Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
                Non Obstructive. Atenolol


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