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  • new here

    Hi I am new here. I have a 13 yr old son who the dr. suspects has hcm. We are awaiting the results of the echo and he is hooked up to a holter monitor for the next month. I also have a 2 yr old that has hlhs and other chd's. We have three peopl in the family that also had or has hcm. Right now he is having palpitations, shortness of breath, dizzy spells, and he is tired alot. I am hoping that the tests all come back okay but my heart tells me that a 13 yr old does not have problems like that and need a nap during the day. I came here because you all know what we are going through right now and what our future may be like. I am holding it together because I don't want him to worry about his health anymore that he already is but I feel like crying. Thanks for listening.

  • #2
    Re: new here

    Welcome here to the hcma, glad you found your way here, this is a good place to be, lots of information and good ppl to talk with about your concerns. I will keep your son in my thoughts and prayers and I hope everything comes out good for him God willing. Have you spoken with Lisa yet? She is wonderful and packed with lots of information, she has help me out alot. HCM runs in my family strongly, My father had it and my son and myself. If there is anyway I can help you or if you want to talk, feel free to pm me.
    Jen

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    • #3
      Re: new here

      Christie,
      Welcome to the site – you are welcome here, there are lots of us here who can help you understand what is going on from a been there position.

      Unfortunately you are walking down a well trodden path. But hold it all together. This disease is genetic in origin, so we have it from birth, although it presents itself at different times with different people – and often the doctor will miss the diagnosis.

      From about the age of four on I was told I had an athletic heart and a murmur, but I wasn’t accurately diagnosed until last December 30th. I am now seventy two years old, with a long list of ailments, but I am still chugging along fine. Well, I’m fighting my diabetes, and my Hyperlipidemia, and my renal problems, and the water in my legs, and my degenerative arthritis, and some other things, - but aside from that – I’m in pretty good shape.

      What I’m trying to say is that medicine has come a long way, and will continue to improve. It is best to get a positive diagnosis so something can be done about it. What will be, will be, but what you do about it is something else. Become informed. Read through these postings, read the information at the front of this site, ask questions you can’t find answers to – both here and from your doctor. Here you also have access to probably one of the most informed persons on HCM. That’s Lisa. Make a list of your questions and give her a call. Her number is at the bottom of the page, and she is usually in on Tuesdays and Thursdays.

      So, chin up, and good luck –
      Burt

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      • #4
        Re: new here

        Hi Christie,

        Welcome to the family. This is a great place to get information. Give Lisa a call. She will really help you. The number is at the bottom of the page...


        Tigger1
        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

        Comment


        • #5
          Re: new here

          Christie

          Welcome.
          Please tell your other family members with HCM about this website.
          In my opinion, in a person who has HCM, the diagnosis is a good thing.
          1- Knowing is always better then not knowing.
          2- The chance of a worst case scenario (which already is very small), is greatly reduced.
          3- If your son has the type of HCM that can benefit from an ICD, then now he can get one.
          4- If your son has the type of HCM that can benefit from surgery, then teenagers are great candidates because they recover so much quicker than adults.
          5- You know to avoid competitive sports.

          We’re not sure where you live, but if your son has HCM, before making any major decisions you should think about getting him seen by an HCM specialist. In certain areas of the country, this may be difficult.

          I can empathize because there is a 50/50 chance with each of my two children that someday, I will be in your shoes. Let us know how things are going.
          Fx

          Comment


          • #6
            Re: new here

            Christie

            Welcome to the board, and have your son come on too we have a place called the hang out for all the young HCMer's, Again welcome to the HCMA

            Shirley
            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

            Comment


            • #7
              Re: new here

              Christie,
              Hello and welcome to the HCMA.

              As others have already pointed out there is a wealth of information to help you here and lots of people who care about what you are feeling and experiencing.
              As parents we worry about our children more then ourselves so this is understandably an overwhelming time for you as you wait for more answers and think of more questions.

              Ask away, we will help you decipher the tough stuff. A phone call to Lisa will be very beneficial as well. Try to take it a little at a time and know that we are here for you and your family,

              Best wishes.
              Pam
              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

              Comment


              • #8
                Re: new here

                Hi Christie - Have you heard back about the results of your son's echo? Crying is very very good for you! I remember when Dylan was first diagnosed being scared to death to START crying because I didn't think I could stop if I let myself start. For me, the shower is the best place for a nice long cry. And I always feel so much better and ready to fight the good fight once again afterwards. I understand needing to be strong for your son - my son has HOCM also. He's 5 now and was diagnosed at 6 weeks of age. He's doing really good right now.

                I've been thinking about you and will continue to keep you and your sons in my thoughts.

                Dee
                Dee, Mom to Dylan
                (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

                Comment


                • #9
                  Re: new here

                  Christy,
                  I am glad you found the site - we are here if you need us! Let us know how the echo has turned out.

                  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)

                  Comment


                  • #10
                    Re: new here

                    Hi everyone,
                    Well it has been a long week. We have been calling all of the episodes in to the co. for the holter monitor. Had a fight with the ped. After she took him out of school for a moth, she has decided that he can go back to school. He has missed 2 weeks and will be lost. We go to see her tomorrow and find out what his restrictions are. She said he can go back because the ekg was fine, but I know that there are alot of things that don't show up in an ekg. Hopefully she will have the results of the echo. He returns to school on Thurs. and I am a nervous wreck about it. Plus this week has been one thing after another with the kids. I will let you know how things go tomorrow. I am heading to bed as I have a terrible migraine. Thanks for the support.
                    Christie

                    Comment

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