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just stoppnig by

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smelly_cat1234 Find out more about smelly_cat1234
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  • just stoppnig by

    Hello im margie ,im 15 have hcm was dienoed with it when i was 7 but it has not caused me much trobble till now ,i have been in hospiltil twice in the last 2 weeks so i thou i would get some info on it
    i found this wedsite very helpful, and i think its a great idear of having this board thxs
    well i was stopping by so i jsut thou i ight say hey and thanks
    *m*

  • #2
    Re: just stoppnig by

    Welcome. I hope you find a lot of answers to questions here. We're here any time you want to talk or ask questions.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: just stoppnig by

      hey
      thxs that helpful to know i can ask my questions ,that wont get asnered in another langage aka doctors , i never have a clue what there talking about with them and there big words
      *m*

      Comment


      • #4
        Re: just stoppnig by

        Hi Margie,
        You've come to the right place! The board moderators are extremely helpful and full of information about HCM. I found this website last December when I started to have a few problems. Are there any HCM specialists in New Zealand?
        \"It is not length of life, but depth of life.\"

        Ralph Waldo Emerson

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        • #5
          Re: just stoppnig by

          Margie,
          I have sent you a Personal Message - It is nice to have you on the board, I would suggest you also tell your parents about the board, they may find it helpful as well.

          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


          • #6
            Re: just stoppnig by

            welcome aboard. I have a 13 year old daughter who has this disease. She has found the board very informative, and so have I. No question is too silly to ask remember.
            Life is too short to worry about the trival things in life, So live life to the fullest.

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            • #7
              Re: just stoppnig by

              hey

              thx for al your relpes
              it makes feel a bet better knowing im not the only person out there with hcm
              and to cynthia no i don't tihnk we do have a HCM specialists in New Zealand, were not quit that hi tech , peopel here still think its great you can go onlnie on ur phone
              *m*

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              • #8
                Re: just stoppnig by

                Margie, Welcome. I hope things go better for you real soon. It's not unusual to have times when things seem very complicated with the HCM, and then things go very well again. I'm glad you've found us. As Lisa suggested, your family may find this site to be very helpful. I'm sure they have many questions, just as you do. Linda

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                • #9
                  Re: just stoppnig by

                  hey
                  well thx for the kind words
                  and well my dad has hcm , but im still trying to teach him how to txt maybe when i done that i might slowly teach him about the world of the internet aka he sucks on computers ,but it might be helpful
                  and the other peopel in my family i know who have it ,my aunt and grandmother had it but they both died from it
                  *m*

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                  • #10
                    Re: just stoppnig by

                    Hi. You really need to be seen by a specialist. Lisa, here on our board, can help you find one. Let your parents know about us. With your family history, you really need to be seen by a specialist.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: just stoppnig by

                      Hey, Smelly Cat!

                      Yes, if your family members died suddenly, and if you have other risk factors, then they can put this device in your chest that will put your heart back to normal if it tries to go into a dangerous arrhythmia.

                      or you can get medication that will help you feel better if you are having symptoms.

                      take care,

                      s

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                      • #12
                        Re: just stoppnig by

                        Hey

                        well unforanly i am under a specialist ,(i hate seeing doctors all they do is tell me not to do this and that and do a hole lot of tests on me
                        but im due to see him in 4 weeks time and he was going to review me and see if i need 2 be put on medonsion and i have blacked out twice resonly so he was talknig about putting that device thing in me ,

                        so why im on the topic of that ,as my doctor not very good at explaning things without useing big doc words could any one tell me the pros and cons to it , i heard when they put it in i could not wake up

                        i don't know if they died suddenly , what does that mean if they did?, they died when i was quit young so i don't remeber

                        *margie*

                        Comment


                        • #13
                          Re: just stoppnig by

                          Blacking out is one of the risk factors to putting a device in. The other factors are history of blood pressure dropping instead of rising during exercise, history of ventricular tachycardia - a serious type of bad heartbeat, septum of 3+ cm, and family history of people dying at a young age from HCM related illness.

                          You may or may not be under a specialist. That's why I said to talk to Lisa. There are many doctors who do not understand HCM very well. It wouldn't hurt to talk to her. Let your parents know you've been talking to us. I'm sure they would learn a lot here too.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            Re: just stoppnig by

                            the device your doctor is talking about is called an implantable cardioverter-defibrillator and is called an ICD for short. It means they put a tiny box (about 4cmx4cmx1cm) into your chest with two wires that go into your heart. the wires record your heart beat and if your heart tries to stop, then the box stops it with a tiny electric shock. Cardioverter and defibrillator both mean almost the same thing: converting the heart and stopping "fibrillation" (which is one kind of irregular heart beat).

                            http://zaplife.org/ is a site all about ICDs. Click on the FAQ link on the right hand side for a list of the most common questions about ICDs and their answers. It covers almost everything!

                            The con is that there is a tiny, like 1%, chance that having the ICD put into you could cause problems. However, if you have risk factors for sudden death (and it sounds like you might) then the ICD has a 99% chance of saving your life if it happens to you.

                            Ask your parents about your family members that died from HCM. They would know if it was sudden or not. Sudden, in this context, means that their hearts just stopped working.

                            I hope this clears things up a bit for you.

                            take care,

                            s

                            Comment


                            • #15
                              Re: just stoppnig by

                              Smelly Cat--Please do check the website Sarah told you about, but remember, if you read the discussions there, that people on the Zapper board have all sorts of heart problems for which they have ICDs implanted. And they have all sorts of doctors, specialists and perhaps not so good doctors, implanting them.

                              After being involved with that board for a year now, I'm glad I took Lisa's advice to have my ICD implanted at a hospital where they really know what they are doing. I have had no "improper" shocks and the one shock I did have saved my life. I think, in general, that people with HCM who have ICDs implanted, have very little trouble with them.

                              I'm so pleased that you can access all this information via the internet. You can have things turn out so much better for you than anyone in your family prior to this time.

                              Very best wishes to you and your family.


                              Sue

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