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The person in my life that has HCM is ...

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Lisa Salberg Find out more about Lisa Salberg
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  • #46
    Re: The person in my life that has HCM is ...

    Sorry to hear your daughter is now a club member. Maybe a counselor to help her talk about the ramifications would be helpful. Sometimes we have to hand it off to professionals so all bases are covered.

    Best wishes through these trying times.
    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
    Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 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

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    • #47
      Re: The person in my life that has HCM is ...

      Craig - Sorry to hear of your daughters pending DX. I know it rough for all of you. Glad your addressing it head-on. I think its how the parents approach and handle things where the child learns the most. As your aware, we don't have the greatest resources in So-Cal. Please do call the office for any help in finding a doctor. Also - she may learn from other young adults here (the hangout) on how to handle this sudden change in her life. Wishing you all the best.
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

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      • #48
        Re: The person in my life that has HCM is ...

        My 2 month-old daughter was diagnosed when she was 5 weeks old after a pediatrician discovered a murmur at birth. She is on Inderal (a beta blocker) twice a day. I had never heard of this condition and can't help but feel a little scared about the potential outcome. My husband, son and I are to be screened soon but to the best of our knowledge no one in either of our families has had the condition. We're from Trinidad & Tobago. Genetic testing is not available here and if the condition is as prevalent here as it is in the US, people are not talking about it. So support is limited to the pediatric cardiologist. No one else knows what to do!

        As it stands, we are all trying to cope with this. I would like to hear from another parent in a similar situation, or anyone who can help, how do I know if my baby is having chest pain or arrhythmia? How do I know if her occasional cough is just that or a warning sign? What should I be on the look-out for? i'm trying to remain positive but you cannot imagine how scared I am to lose her!

        Thanks in advance for the help and support!

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        • #49
          Re: The person in my life that has HCM is ...

          Daleybread-29
          I responded to your other post as well. Please remember that your wee one may not actually have HCM. Its really best for her to see an HCM specialist.
          I fully understand your concern & caution and it sounds like your doing all the right things. The resources on Trinidad & Tobago may be limited, but your doctor can access experts at the Mayo or CCF for advice (which they may have already). Your doing your best by being her advocate!

          Genetic testing is done only by a few labs in the US. Your blood is drawn & shipped to them for the process. And just because she has a cough could just be that - She is a baby and they do that! As for warning signs - Gosh, for a baby it must be difficult - I'd look for blueish fingernails, I'd learn to do accurate heart rate/pulse testing and Keep an eye out for fainting signs. I'm sure others with experienced with infants will chime in.

          Best of luck for you & your family. We're here to help in any way!
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #50
            Re: The person in my life that has HCM is ...

            Thanks. Your advice has put my mind at ease. I will pursue the option of shipping our blood samples to a lab in the US for genetic testing. Thanks again.

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            • #51
              Re: The person in my life that has HCM is ...

              my husband was recently diagnosed with HOCM. We found out 1 month after our daugther was born. it has now only been 3months but it feels like alot longer. Any support or tips of how to cope would be greatly appreciated.
              Husband diagnosed November 2010: Age 23. Currently he's trying different meds, talking about surgery with Dr. Klarich Mayo Clinic. Rochester, MN.

              7 month old daughter was screened 4/12/2011 at Wolfson's Children's hospital...Currently all clear...

              We're living life day by day, making it through, slowly but surely.

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              • #52
                Re: The person in my life that has HCM is ...

                My 12 year old son was diagnosed about a month ago and I am still feeling blind sided. We were going in for a possible heart murmur, just as a precaution so he could get a release to go back to Football at school and Select soccer. My son has played sports his whole life at a very competitive level and the thought that at any time he could have died during any of those hundreds of sporting events is beyond my limit of thinking. I had never heard of this (HCM) before and it scares the heck out of me. I am glad however that it was diagnosed before the worst happened. So we feel very blessed that a random ER doctor heard what my son's normal doctor has missed over 12 years. Even after we went to see his regular doctor, the doctor didn't believe us and said "no I don't hear anything but since it will make MOM feel better I will give a referal to a cardiologist". He even laughed when he saw the notes from the ER doctor. Like the ER doctor was stupid or something. None the less, we will never go back to that doctor again. At the Cardiologist at Children's here in North Texas we found out the true issue which was HCM. My son is aware of the diagnoses but I don't think he TRULY gets how this will change his life forever. My other 9 yr old son was tested and was cleared(thank God) but now I need to find out if he is a carrier.(I have to ask the doctor about that one). Should I start talking about the problems having kids for him will possibly cause for his children? IDK... This is all so crazy and unbelievable even still. My son has always been the healthiest one and now he isn't at all. I am so glad this site is here and I found another HCM group here in North Texas and we are planing on meeting the group OCT 22 for a run that raises awareness for Sudden Cardiac Arrest. We will be walking the 1 mile but it helps for my son to see he isn't alone in this. There are others out there who live with this everyday successfully.

                Comment


                • #53
                  Re: The person in my life that has HCM is ...

                  Welcome to the HCMA - we are here to help - it takes time to process all of this info. This thread is a fine place to start, but I think more people will see your post and respond if you post in "Hello, my name is..."

                  When you are ready, please call the HCMA office and talk with them. They will help guide you thru so much. Your son needs time to process this also, the here and now may very likely be all that he is able to work thru right now. It's totally understandable that you have so many questions and concerns, but I personally would think that it may be a bit early to talk of future children with him. Each parent knows their own children and what they are ready for better than anyone else, so you will know when it is time.

                  I'm glad you followed thru with the cardiology workup - and that you have the info to get the family screening started.

                  Will be watching for updates - best wishes - Linda

                  Comment


                  • #54
                    Re: The person in my life that has HCM is ...

                    Hi... I have just been recently diagnosed with HCM. This is all new to me i would appreciate any feed back from anyone on this...

                    Dave [emoji46]

                    Sent from my LG-E617G using Tapatalk
                    Last edited by davemartell.vacs; 08-01-2015, 05:16 PM.

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                    • #55
                      Re: The person in my life that has HCM is ...

                      Sorry,maybe i am in the wrong chat if this is family

                      Sent from my LG-E617G using Tapatalk

                      Comment


                      • #56
                        Re: The person in my life that has HCM is ...

                        Dave - no worries. You'll also note the last post prior to you was 4 years ago.
                        Marc
                        Diagnosed @ 48
                        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                        AICD - Valentines Day '08, Spark Plug replaced 11/14
                        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                        Quietly going insane . . .

                        Comment


                        • #57
                          Re: The person in my life that has HCM is ...

                          Mbcube..yes i just noticed the year now....oops i am new to this.

                          Sent from my LG-E617G using Tapatalk

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                          • #58
                            My daughter is 13 and was diagnosed a month and a half ago. She was an avid travel soccer player as well as school soccer. Extremely active kid. On the turn of a dime and the words of her diagnosis hanging in the air, everything changed. She is still in and angry/sad phase of grieving. There are many nights I cry in my pillow. There are so many restrictions and unknowns. Like what causes the ventricle wall to thicken?
                            How have you helped your child to cope and what's helped you to cope?

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