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Lisa Salberg Find out more about Lisa Salberg
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  • HCM and me ...

    Many of us have differnt views of HCM based on the way it has affected our families. Lets see where we are all coming from.
    144
    I have HCM
    56.94%
    82
    I have lost a loved one to HCM and have HCM myself
    11.11%
    16
    I have lost a loved one to HCM, but do not have HCM
    3.47%
    5
    A loved one has HCM
    23.61%
    34
    I have lost a loved one and another loved one has HCM
    4.86%
    7
    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)

  • #2
    My husband is the one with HCM in my family, and as far as we know, he's the only one. How about the rest of you?
    Reenie

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

    Comment


    • #3
      My son was diagnosed in July and since then myself and my brother have been diagnosed.

      Comment


      • #4
        My kids (Krista & Tyler) have HCM. They are in the picture at the left. They were diagnosed at birth (Krista 11 yrs and Tyler 8 yrs).
        Michelle - mom to Krista and Tyler both HCM
        Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
        Tyler surgery: 1/98 myectomy

        Comment


        • #5
          "Ditto" to Reenie's post - Hubby is the one with HCM and the only one as far as we know. He was diagnosed about 9 months ago at age 49. Most difficult was the shock of the diagnosis and the uncertainty of it all. Even with meds, he continues to be symptomatic and is often depressed. I've learned to appreciate his 'good days' and be patient and understanding on the 'bad' ones.....he refers to them as 'wash-out' days when all he can do is lay around and watch TV. He'll go through phases when he'll have a stretch of 'bad days' and then a stretch of good ones. As a family, we've had to adapt and accept that sometimes he just doesn't feel well enough to go places, or sometimes if he does go, he tires easily. This does bother him and usually results in him feeling guilty, frustrated or depressed. We've learned to 'pitch in'and pick up the slack of things that need to be done around the house when he's not able to do it.

          This is the effect HCM has had on our family.....

          I've read countless stories of HCM patients and their families, and I'm very grateful to God that our situation is not nearly as grave as what others have had to face.

          I'm also very grateful to HCMA for providing such a wealth of info and support! (This new Web Board is great!)

          Karla

          Comment


          • #6
            My son was diagnosed with HCM at 6 weeks. There's no evidence of it anywhere else in our family, however his Father and I have yet to be tested. (I know, I know). I had a murmer as a kid and some chest pain incidents but not recently. I WILL get tested soon.

            That's Dylan in the picture, at the County Fair this summer.

            Peace to all!

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

            Comment


            • #7
              Dee...Please get screened soon...
              PLEASE
              Thank 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


              • #8
                My husband & 19 year old daughter have HCM. My husband inherited it from his dad, who passed away at 40. (2) other uncles died in their 40's, (2) in 50's and an aunt at 65. Only (2) first cousins of my husband have the disease out of about 20 cousins & none of his 2 siblings have it either. One of his first cousins children has the disease also.

                Comment


                • #9
                  My husband has HCM. He was diagnosed about 15 years ago at the age of 36. His father died suddenly in his early 40's. They believe that he had HCM, although he was not diagnosed. Bill's sister was diagnosed last year at the age of 56 and they have at least 2 first cousins with it.
                  Sonja
                  Wife to Bill (with HCM)

                  Comment


                  • #10
                    ICDs

                    Dear Karen,

                    Does your husband and/or your daughter have ICDs yet? That is a lot of family sudden death. Just making sure he is covered.

                    S

                    Comment


                    • #11
                      Good morning Sarah,

                      Yes, they both have icds now. My husband's was implanted almost 3 years ago due to family history & v tach. Our daughter's was implanted Christmas eve due to a syncopal episode in the gym. That episode was exactly 3 weeks ago this morning!! I don't think I will ever forget that conversation. I am sitting in the same spot that I was on Dec 23rd........in front of the computer!

                      Thanks for checking.

                      Karen

                      Comment


                      • #12
                        Karen - hey Jersey Girl! - You should take a ride down Green Pond Road sometime and have a cup of tea with me!
                        How is your family doing?
                        All the best,
                        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


                        • #13
                          Family History

                          I have HCM and have lost three loved ones to the disease. I was diagnosed at age 25. My mom passed away at the age of 56. I had a stillborn that possibly died of HCM. They did not diagnose him because I did not know I had the disease, but looking at the autopsy now, his heart weighed more than it should have which indicates HCM. My 10-year old nephew passed away in November on the playground at school. Since then my brother and niece (his sister and dad) have been implanted with defibulators. I have a defibulator along with my sister. My three year old has the disease and I am awaiting a secong opinion as to whether or not he needs a defibulator. My doctor feels he is too young and that the complications of surgery at this age outweigh the chances of sudden death.

                          Comment


                          • #14
                            Hi Everybody!!!

                            My son, Keanu, has HOCM and arrythmia. When my he was born a cardiologist was called in and an echo was ordered. At first I was told that both ventricles were hypertrophied and another echo was ordered for when he was 6 weeks old. At that time I was told that Keanu had HOCM. He didn't have arrythmia at the time, however, he did develop it when he was five months old. Keanu is a very active child (he'll be 2 on the 7th of March) and I worry about how this stuff affects him, especially since he doesn't understand the problem and still doesn't talk much. How do you not constantly worry about your child when he can't tell you what's going on (when he hurts, etc.)??
                            Mom of Keanu
                            4 years old (will be in March)
                            Dx at 2 days old with Biventricular hypertrophy
                            Dx at 6 weeks with HOCM
                            Dx at 5 months with V-tach
                            Dx at 3 with Noonan Syndrome

                            Comment


                            • #15
                              SheliRenee, You're a Mom and Mom's worry about their "healthy, normal" children. So it's only natural that you will worry about your little one. Keanu sounds like a delightful little 2 yr old who enjoys every day just like a 2 yr old should be able to. Arm yourself with knowledge, know your resources and backup plans. Start teaching him early on in little ways, a little at a time, what to tell you about and how to care for himself. As he grows and matures, it's tough to put more of these responsibilities on him, but when he is ready to fly, you will find comfort and security in knowing that he has the good habits, knowledge, and responsibility to take care of himself when you're not with him. Be sure others responsible for his care are well informed and prepared (know CPR, etc - this should be for anyone these days). Have the Medic Alert bracelet. I personally prefer the bracelet, I think it's more obvious in an emergency, plus I was always leary of anything around the neck of a child without a "break-away" type fastening. While you are learning, teaching, and preparing both of you, you may even have less time to focus on the worrying and you will know you are doing something about it. So much easier to say these things than do them, but we all have days where we can move ahead and those that we just sort of stall out on. Hope this helps and can be a day you can move ahead on. If you haven't already called Lisa at the HCMA office, please do so. You will receive a wealth of info. Linda

                              Comment

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