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Recently diagnosed


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Jayson Find out more about Jayson
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  • Recently diagnosed

    Hi to all, I found this great site while searching for new information about this disease. I've read most of the posts through out the site. I'd been having difficulty exercising the last 6 months. I'd feel like I was going to faint and my heart rate was going through the roof. This news couldn't have come at a worse time. My wife was just in ICU for week with Pulmonary Embolism in her lungs. A week later her father has a heart attack and her mother has now developed an irregular heart beat.

    I come from a long line of this disease IE.. Father; Mother (deceased); Sister (sudden death 18); Sister; Grandpa (sudden death); Uncle (sudden death); numerous cousins and many more. I was checked when I was 15 and once again when I was 24. I had negative results both times. This time I was not so lucky. I'm 32, married, and have 2 kids. I have a septum thickness of 22mm and the Doc says I have obstruction. He started me on Metoprlol 75mg a day. I'm getting used to it and will be consulting with a Dr. Lee at UCSF in San Francisco in a week, for a ICD. This board will hopefully create a safe haven for me to come and read about others with this condition.
    Tight lines...

  • #2
    Dear Jayson,

    Wow. You have a lot on your plate and I'm very sorry your family has been struck so hard. I'm glad you found us and are getting an ICD consult. Sounds like it would be a smart move. Please see the recent posts on Guidant's troubles, by the way.

    Please keep us posted on how you are doing and ask any questions you may (should I say will?) have.

    Hang in there --you aren't alone.



    • #3

      Welcome to our little community that seems to be getting very big these days, Sarah is right you have alot on your plate but please take care of yourself so you can be around for your family, with all the SCD in your family it is very wise you get that ICD and have your kids checked also, welcome aboard

      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


      • #4
        Jayson, Welcome.

        We are all here to help when you need it . I am sincerely sorry for all your troubles.

        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


        • #5
          Hi Jayson. We're here when you're ready to ask questions, read about HCM, or just vent a little. I hope that your family's hard times are over with for a long time.


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


          • #6
            Hi Jayson.

            Whew! You are going through a lot. Please know that we care and will provide you with a safe place to vent when you need to, ask questions when you want to, and chime in on the discussions at will. With your permission I will be praying for you as you sort everything out.


            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness


            • #7

              I am so glad you found this site. It has been wonderful for me. My son was diagnosed in January as well as my exhusband, his brother and their father. I am sorry to hear about how your family has been affected. This is a wonderful, caring group of people and you will always find support here! Welcome! 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.


              • #8
                Hi Jayson,

                Nice to meet you, and welcome!

                You've been through the mill with this disease.

                Take care, and hope to hear from you soon.



                • #9
                  Thank you all...

                  To everyone, thank you very much for your thought and prayers they mean a lot to me and my family. I just returned from San Francisco where I had my two children checked out. Thank God for good news, they had no signs of HCM! What a load off our minds! We will continue to check them yearly as recommended. Once again I want to thank you all for your care and concern.
                  Tight lines...