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  • My 15 year old son...

    My son is an avid hockey player and was just recently diagnosed with HCM. Needles to say we are devastated for him because hockey has been such a big part of his life. I don't think he truly realizes it and his hoping that a second opinion will reverse his verdict. At this point I could care less about hockey but I do care about his emotional state down the road.

    The news was given to us at a recent visit at the Dartmouth Medical Center in Lebanon New Hamposhire. Although the pediatric cardiologist was well versed in his field, he basically told us that pateints with condition are recommended to take pool and bowling and to stay away from all competitive sports such as hockey. He did mention skiing or snowboarding but was quick to mention that if you ski as hard he he does it could be problematic. Obviously he was the bad guy as it was our first visit, but I almost passed out in the room and proceeded home totally devastated.

    Thankfully, we live in a very supportive community, Keene NH. News traveled fast and family as far as Canada and New York are already on the case. My brother-in-law is head of anesthesia at a childrens hospital in Montreal and has already been notified.

    My biggest concern for the time being is dealing with his emotions. He's extremely active and want tpo be able to provide a light at the end of his newfound tunnel. Please help us. We love him so very much and want him to obviously outlive us. But, we also want him to be happy.

    Angela and Bert Poirier
    Keene, New Hampshire
    603-357-5101

  • #2
    Bert - I will call 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


    • #3
      I know this is tough for you and your whole family. I don't have any answers, but am pulling for all of you.

      Reenie
      Reenie

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

      Comment


      • #4
        We had a nice talk and Bert and his family are off to a good second opinion in Boston -
        Hang in there guys...we are 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
          Bert,

          We are all with you and your family. Please get the second opinion and let us know. Many times the challenge is within.

          Bob
          Cleveland Myectomy Crew
          Member since November 2002

          \"Chance favors the prepared mind!\"

          Comment


          • #6
            Thanks everyone!

            We'll be heading to Boston very soon. I'll keep you posted as to how we're progressing. So far Jonathan is doing well and is going about his business, with the exception of hockey of course. Time will tell...

            Comment


            • #7
              Bert, I can relate, I had to give up all athletic activity 30 years ago and I also went thru an emotional withdrawal.
              Over the years as they learned more about HCM I am able to do cycling and other moderate activities and live just a great life.
              Maybe the second opinion will have better news, but if not, know it is not the end of the world, just another challenge the big guy has given your son and were all here to cheer you on.
              Keep us posted.
              Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
              So if you are capable of thought then you are capable of great things
              Good luck and stay well.
              Glen

              Comment


              • #8
                reply to 15 year old son...

                Our 16 year old son was diagnosed two years ago, just one year after he began to play football in school. He also was devistated, but we kept emphasizing how lucky we were to know about this condition BEFORE a tragedy happens. He is seeing a psychologist, even though he says he does not need it. I think it would help if teens had other teens who have the same condition to talk to. I know some of what he is going through, but I can't begin to feel what he feels. He is having great difficulty at this point staying in school all day because of excessive tiredness.

                Maybe they could email each other?
                dtip

                Comment


                • #9
                  Good idea

                  As soon as we get a our second opinion next week, he may be in need for someone to talk to. We are planning on seeking counseling for all 3 of us for that matter as I too agree that it's a good idea. I'll let you know what the prognosis is. Thank you for posting.

                  Comment


                  • #10
                    Bert,

                    I was wondering your son went for the second opinion yet. How is he?

                    My son was scheduled for his follow up this past Monday, but was cancelled due to snow. I'm anxious about this visit. He is a junior in HS and around the same age as my husband was when he was diagnosed. My daughter was 19 when she was diagnosed with HCM. In my heart, I feel he is following in his sisters footsteps, though I pray that he isn't. There is a look to his septum that made his dr suspicious, though his numbers were all within the normal range and his floppy mitral valve has truly prolapsed now...this was exactly how our daughters disease process went.

                    He's made the varsity baseball team & is looking forward to an incredible season. I hate to be the one to remind him of what the future MAY possibly hold - but somebody has to mention it. He thinks he is going to be a professional baseball player & will play with an ICD if he has to. And, believe it or not, my husband encourages him about the pro player thing!?! My husband swims in that river of denial!! lol.

                    His gift from Santa this year was a trip to Florida to a baseball camp with a friend, not solely because he was a good boy, but because I think his diagnosis is coming. I wanted that wonderful baseball memory for him just incase his season was cut short! We are blessed in a way because we know our family history and we can prepare somewhat. I don't mean to minimize our daughters diagnosis because it was hard, but we weren't blown out of the water as some families are. Anyway, our son's trip was tainted somewhat with reality when his sister had an ICD urgently implanted on Christmas eve. He left for Florida the day after Christmas with a heavy heart and a new found respect for HCM.

                    His follow up is now scheduled for March 7 - keep your fingers crossed & please say a prayer. I don't mean to be greedy, but I'd love to see him have that incredible year in varsity ball. Hopefully, HCM won't personally affect him...well, physically anyway since he already is affected by the disease as all family members are.

                    Take care Bert. Please keep us posted on your son. My prayers are with your family.

                    Karen

                    Comment


                    • #11
                      soldiering on...

                      Please read the postings under the heading "Pepperdine Basketball Player Adjusting to Life with HCM" ---I think it will help a lot.

                      I can't relate very well. I miss dancing, but it was never my goal to be a star ballerina. However, you will find lots of support here and many others going through the same thing --or have gone through it.

                      There are several postings about the Pepperdine kid that the search engine can pull up for you.

                      take care,

                      S

                      Comment


                      • #12
                        thanks Sarah!

                        Comment


                        • #13
                          Karen -
                          GOOD LUCK!
                          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


                          • #14
                            HCM and sports

                            We are fairly new to the HCM diagnosis, and maybe I should not be concerned about the above post becaue they have a great deal more experience with HSM than we do (plus we have Wolff Parkinson White and A-fib problems), BUT...
                            many students in our Houston area have died on the sports arena playing in an air conditioned gym. in the heat before school starts, etc. It has been in basketball, football, etc. I would be scared silly for my son to continue to play contact sports for even one game. We were told in no uncertain terms, never again. It only takes a second for a tragedy, no matter how badly they want to play.
                            dtip

                            Comment


                            • #15
                              Sadly, it is still happening

                              Please read the tragic post about the 26 year old who dropped while playing basketball --the obit doesn't say it, but since memorial funds are to go to an HCM clinic --I'm guessing that he had it and knew it.

                              Do we really think about our choices?

                              S

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