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Introducing Kathy

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xx1kitkat1xx Find out more about xx1kitkat1xx
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  • Introducing Kathy

    Hi everyone
    I'm soooo excited I found this website, YAY I'd like to introduce myself.... My name is Kathy and I'm from Boston, Mass. I was diagnosed with servere HCM when I was just 10 days old. I am now almost 20 years of age and I am confident with the young woman I have become. I know people can live a normal happy and most importantly heathy life with HCM. So this is my story which might take a while considering I got most talkative in high school! lol When I was born I went through many tests and like I said at just 10 days old I was diagnosed with HCM.... I was put on meds ever since that day. During my childood I participated in many sports and dance classes..... but when I turned 12 my doctors told my mother that we had to choose from three options. These three options were heart transplant, pacemaker, or lastly to cut away at the muscle. We decided that the pacemaker would suit me best. So there I went at 12 years old I had my first device implanted... which was a exciting experience because I woke up in the middle of surgery Then after surgery I was sent home only to find out that my x-ray had showed one of the leads had popped out of place. So there I went again to the hospital to get that popped back in. After that little complication I was fine but I was extremly limited from physical activities. No more gym in school, no more softball, no more dance classes, no more etc.. etc... you get the point. But even though that sounds awful it wasn't because even at that age I knew that it didn't change or define me. Plus It made me feel special and I always had a great story to tell. ( the great story being about how I awoke during surgery and could see blood everywhere ) lol I felt really good, actually I felt better than I ever had after the surgery. But, six years later I was 18 and I was having trouble breathing, numerous palps, and a lot of cheast pain and lightheadedness. When I went for my yearly visit my doctor informed me that the battery in the pacemaker had died and I needed a new one. I couldn't believe it, but I had confidence in my doctor. After a long discussion we deceided that I needed an ICD with a pacemaker in it rather than just a pacemaker. So there I go again at age 18 back in surgery... which went quite well. I was only in the hospital for 2 days. Now I'm approching 20 years old and I've lived for 2 decades with HCM.... but I feel great, I'm a full time student in college and I work part time as well. I plan on living a long happy sucessful life. If you read this I just want to thank you and I hope you got something positive from it. [/b]
    19yr old Kathy

  • #2
    Great attitude

    Kathy you make me smile! Keep that attitude and you will accomplish all that you find on the road ahead! Thanks for your inspiring story.
    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

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    • #3
      Welcome to the board!
      You do sound like you will be an active participant here... most talkative hmmm
      Your story sounds very interesting..we should talk sometime. Call the office when you get a chance.

      Best wishes,
      Lisa
      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)

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      • #4
        happy to read about you

        you sound very postitive, ready to go have fun, full of life chickie,
        I love that, Glad you are here, look forward to talking more, I posted my story, hello, by Lisa R.
        Keep that spirit KitKat,
        Lisa R.

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        • #5
          Kathy, Wish I had had you to talk to when my son was diagnosed! You will have inspired a lot of parents today - Thanks. Linda

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          • #6
            Introducing Kathy

            I'd just like to take the time to thank everyone who took the time out of their day to read my story.... especially those who replied. To Largehearted I'm glad I could make you smile. To Lisa R. I also look forward to talking to you. Linda what you wrote made me feel helpful and I'd like to thank you for that (It's an awesome feeling). Lastly, Lisa salberg it would be my pleasure to speak with you although I don't know the office number, so if you could leave it I would definitly give you a ring. Thanks again :P
            19yr old Kathy

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            • #7
              Kathy,

              It's great to hear from someone who started out so young with HCM and has such a positive attitude. My son will be 2 in less than 2 weeks. We just found out about HCM in the last 6 months when he was 18 months old. Thanks for sharing your story.

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              • #8
                Hi, Kathy. You can call Lisa at 973-983-7429. I'm sure she'll be happy to talk to you. Keep up the good attitude!

                Reenie
                Reenie

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

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                • #9
                  Introducing Kathy

                  Reenie thanks for the nuber I will call Lisa as soon as I get a chance....probably this week. Amy N. I'm sure your son will be fine, when I was 12 my gradient was 90!! now it s down to 44
                  19yr old Kathy

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                  Today's Birthdays

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