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bsmruffnek Find out more about bsmruffnek
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  • hello

    hey everyone,
    my name's kyle and i'm a 19 year old sophmore at college in philadelphia. i haven't joined any discussion groups or chat boards sinced being diagnosed but i decided that it might be helpful for me to talk with others in similiar situations. anyways, i guess a quick summary... i was diagnosed when 17 right before senior year in high school. i never had any symptoms beforehand even though im high risk because of my thickness of over 3.0 centimeters. my family and i decided the icd was the only real option so i got it in november of 2002 only to have it taken out four weeks later for infection. after a week in the hospital and two more with an iv 24/7 i had the surgery again in late january. since then everything has been fine- it hasn't recorded a thing. although honestly i haven't let it affect me that much it has taken somewhat of a toll on me psychologically. i used to play sports competatively but obviously dont anymore. i try to stay active (on acceptable exertion levels) and get to the gym though in college sometimes its hard. there are two things which worry me though... i do drink and being in college ive found it hard for me to abstain (to be fair my friends and i were the partiers in high school). also i know its extremely stupid but ive been unable to completely stop smoking. i know its a terrible excuse but i tell myself im in college and when im out of the enviornment ill stop both. i also feel that the fact i havent ever had any symptoms or problems (besides the surgery) as well as the security of an icd gives me a feeling that im safeguarded. in any event thats more than enough for tonight... i just feel its good for me to get out and talk to people,and i hope to develop worth relationships... wish everyone good health and take care

  • #2
    Re: hello

    Welcome Ruffneck!
    You have come to a great place to talk about HCM. There will be many opinions offered and a genuine sense of caring for you. Perhaps the best thing will be the understanding of HCM that you will gain. I am sorry you have HCM, but welcome to our family.
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness


    • #3
      Re: hello

      Hi and welcome to the HCMA. Being a college student is hard, even without the added pressure of HCM. I'm going to mainly touch on alcohol for now. Some people have issues with arrhythmias when they drink, or even having a lasting effect because of drinking. The ICD is a good safeguard, but isn't foolproof because if alcohol makes you go into atrial fibrillation it won't help you. A-fib is something you can live with, but it isn't pleasant. Besides that, you know what the healthy choices are. You're an adult now. You can decide what you need to do as far as health choices go.


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


      • #4
        Re: hello

        Welcome to the HCMA!!!!!!

        we are happy to meet you!

        take care and I hope to hear more from you soon.

        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)


        • #5
          Re: hello

          Welcome to the message board!
          What a brave soul you are to reach out to this wonderful group. HCM is definately a challenge and adding young adulthood and life choices to your heavy load can be a bit overwhelming...take it one step at a time and you will get though everything that faces you.

          If you haven't already noticed, you are in the great company of some wonderful compassionate people. We are here to support you and love you just the way you are. When you are ready to make changes in your life style, we are here to love you and support you through that too. Take care and let us know how we can help you in your life.

          Love and best wishes!
          Sharon Bates



          • #6
            Re: hello

            Welcome to you. I echo the previous sentiments and add that I am glad I am not forced by a disease to make some of the very choices you face. It was very difficult when in college to not do what others were doing , I was no angel and far from perfect. I had many close calls and many symptoms , I was very lucky , I stopped competitive sports because I would pass out easily. I did not stop partying even though that made me pass out too. I just thought I had a poor tolerance.

            Best wishes to you and good luck with all your decisions and choices . It is not easy being different from others, it is however an adjustment and a way of life.

            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


            • #7
              Re: hello

              hey wsup kyle, my name is Steven i'm a 17 year old, junior in high school, cool 2 see someone as young as me here, hope u take care, i also got HCM but dont let it really run my life, its awesome 2 see that ur in college and can still be chill, goin 2 parties and what not.
              take care


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