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sixteen_and_still_living I am very friendly. I enjoy spending time with my husband and my friends Find out more about sixteen_and_still_living
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  • my story to the point.

    when i was 6 months old my mom and dad took me to the hospital because all i did was eat and sleep and i was losing weight. that is when they told my parents i had HCM. they also told my parents i wouldn't live passed a year when i did they told my parents that i had no chance of living to 5 years old. when i made it to 5 they said no doubt that i would need a transplant by age 15 i am going to be 19 in less than 2 months and i am still going strong now the doctors say that i am serious but stable and if my heart gets any worst i am going on the transplant list. i am so scared of needing surgery and/or dying.

  • #2
    Hi there. You have quite a story. You're beating those doctors' odds every day, aren't you? I'm glad you're here with us. Can you tell us where you go for treatments? Have you thought about calling Lisa yet? She will probably have a lot of insight on things and could make you feel a lot better. The phone number is 973-983-7429.

    Reenie
    Reenie

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

    Comment


    • #3
      Hey sixteen,
      I know this Hangout is for the younger set, and I’m so old I’ve already gone through my second childhood, so I will be as brief as I can be – and then be gone.

      Everybody dies. It’s the name of the game. What matters is what you do BETWEEN birth and death that counts. Have you been evaluated by one of the Big Three centers for HCM care? Why not get the most accurate information and best care you can?

      OK – Bye-bye. I be gone now.
      Burt

      Comment


      • #4
        Ok - lets look at this a little closer - how often have your doctors been right about your prognosis - sounds like they are hitting a big fat ZERO to me!

        Have you been to any of the large HCM centers yet? If not I think it is time and it may well be time to hit an adult cardiologist as well.

        Hang in there - we are all here for you!
        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


        • #5
          I go to Childrens hospital of Wisconsin. no i have never been to one of those centers. i am certain that i need more help then what i have. i would love to meet people who can give me more and accurate information on HCM. and people who can help me understand what to do with my life to get passed this hard time.

          Comment


          • #6
            Ok here is my take on this disease it is not a death sentence with proper help and treatment, i also have had this most of my life, i passed out all the time as a child and my 29 year old son also has it and he works and has a family, he had some rough times in the beginning as he was just diagnosed last year, listen if you need anything you can PM me anytime, i hope you can get to a center soon, and welcome to our little community

            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
              Hi,

              You are not alone. I had two aunts who were told their hearts would never allow them to grow up. One was frequently told she had less than a year to live. When she wanted to be baptized, her cardiologist baptized her because he was afraid she would die under the water. But both survived into adulthood, both married fairly late, one adopted a son, etc. and all that was before HCM was ever discovered and heart meds did not exist!

              So, just think about the possibilities today!

              Rhoda

              Comment


              • #8
                Have you told your parents about this site? They might learn a lot here too, and we might be able to help them find a specialist for you. Have one of them call Lisa to see which one might be best. Also, if you are up for a trip and can convince your parents too, we'll have an annual meeting in June in New Jersey. There will be people there from children to adults who have HCM and live with it every day. You can learn a lot there.

                Reenie
                Reenie

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

                Comment


                • #9
                  We have been to Children's in Milwaukee for our surgeries. A couple of the doctors followed my children while there. That is the hospital where I got my second opinion on my son.

                  Our cardiologist is from Children's Hospital of Madison. My kids are 13 and 10 now. They have been diagnosed since birth. They are doing great. Take daily meds, but other than that they are not really limited. They cannot compete in sports but they have full lives with friends and other activities. Very active in choir, boy scouts, girl scouts, theater and many other things. They don't feel limited or scared to do things.

                  It doesn't sound like your doctors are very up on this condition. As you can see there are many people that have had this disease for a long time and are doing fine with management and making sure they see the right doctors. We've been very lucky with our cardiologist. He is not a "specialist" in HCM, but has been right on top of everything. He will go so far as call Cleveland Clinic or Mayo when he is stumped in what to do for my kids. I hope you find the doctor who will give you better treatment and soon.
                  Michelle - mom to Krista and Tyler both HCM
                  Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                  Tyler surgery: 1/98 myectomy

                  Comment


                  • #10
                    Hi, I ususally don't post but....... I was diagnosed at age 14. I have had a ICD implant at age 14 and recently a myectomy at age 17. Im now 18. I live in Wisconsin just like you do, and when I was first diagnosed, I went to the Childrens Hospital of Wisconsin, too. They gave me some pretty crappy news about my condition too, but then we went to Roddchester Minn. instead and now im treated well and im happy with what is going on. Maybe you should try a second opinion. Your docs. seem to be wrong and wrong and wrong again. Just a suggestion. If you ever wanna chat or whatever, IM me , my AIM name is mandan207 hope I can help!

                    Comment


                    • #11
                      Dan,
                      Nice to see you on the board.

                      Dan meet everlastingbaby - Everlastingbaby meet Dan... You two have a great deal in common and I spoke with both of you this week -- You two should PM each other I think you will both find a wonderful new friend!

                      Take care!
                      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


                      • #12
                        im about to go on the transplant list too. my cadiologist says that if my ICD goes off one more time, its on the list i go....

                        I also go to Children's Hospital, but I go to the one here in Omaha. My parents tell me my doctor knows what hes doing, hes actually highly recomened in this field. i dont know the exact info, but i hear he study under a man who had studied HCM at the Mayo Clinic. he even knew what i had before i landed at the hospital.
                        ~Kimber~

                        Comment


                        • #13
                          Kimber, have your parents talked to Lisa? Her phone number is at the bottom of this page. I think it would be a good thing for them to call her.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            I wanted to say something

                            I had surgery the summer after 4th grade at age 10. (I'm now in 8th). It's natural to be freaked about surgery. I was. But I guess that's what we get for having HCM. (I hate every moment of it...)

                            Hang in there!
                            Diagnosed - April 1992 (age: 2 months old)
                            Myectomy - June 2002 (age: 10)
                            Propanolol: 120mg (morning & afternoon), 90mg (evening)
                            ~~~~~~
                            “The person worth listening to is often the quietest person.” — Japanese proverb
                            “When you paint a dragon, you paint his scales, not his bones; when you see a man, you see his face, not his heart.” — Chinese proverb

                            Comment


                            • #15
                              CardioClay, I see you're from NJ. That's where the HCMA office is. Have you or your parents contacted Lisa or the office and asked for an information packet? Your family might find it very helpful to talk with Lisa. Welcome to the HCMA - Linda

                              P.S. - You're so right! I can't imagine anyone not being freaked by surgery.

                              Comment

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