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start of HCM for my son?


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PamR Find out more about PamR
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  • start of HCM for my son?

    I haven't posted in a while. And when I have in the past, it's been about my own surgery, ICD, events etc.
    Today is different. I have two sons, 16 and 19. I've had them screened annually for the past three years since my diagnosis. All echos have been normal until today.
    My 16 yr old Tyler's echo came back with some mild thickening, some concentric hypertrophy. My cardiologist here (Albany, NY) wants to just watch it. That may be very rational- but it's hard to be very rational where your kids are concerned.
    I called my Dr. at CCF and he would like to see all of Tyler's echos (to read and compare) and see Tyler. I think this is the prudent move and I'm glad he suggested it. Tyler is a football player (senior year next year)- a pretty good one who was thinking about playing at the college. (My other son got a DI basketball scholarship) So, sports are important to them, but I would never let him play if the Dr. diagnosed with HCM- I wouldn't risk it for anything.
    My question is...is this the way it starts- gradually like this- with echo results like this? There is no outflow tract obstruction and he has reported no symptoms at all. I know sometimes athletes get somewhat thicker hearts. He's been lifting and working out a lot- could that be it? I sure would like to think so.
    There's probably no answer available- except the one we'll get in Cleveland but I thought posting would at least let me hear from others about their experiences at this stage. Thanks for listening.
    Diagnosed 8/2002, Myectomy (CCF) 3/2003, ICDs 2003,2006 (fired once appropriately), FT researcher, wife and mom of 2 boys (17 and 20).

  • #2
    “Is this how it starts?” Let’s see – I’ll just check my program – Oops, my goodness, there is no program. I guess I’ll just have to fall back on that old tried and true – Everybody is different.

    If you want my opinion I think you are doing exactly the right thing. I think the call to your doctor at CCF was brilliant, and I would put much weight on his assessment and recommendations – for both your boys.

    If there is any way you can arrange it, I would think getting your CCF doctor to follow him would be ideal. Good luck and let’s hope it’s the result of all his sport activities.


    • #3
      Pam, it does appear that for your son this is how it starts. I haven't gone through this yet since my own children haven't been diagnosed and my husband was in full blown HCM when we learned about it. I agree that the call to CCF was the best move you could make, especially since he's a football player. Please keep us posted.


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


      • #4
        It "starts" differently for many people and this is one way we see rather often. Your doctor who wants to "watch and see" is not following the treatment guidelilnes set in the ACC/ESC document on the treatment of HCM. I am sorry to say that competitive sports need to be taken out at this point. Simply by having HCM he is at risk of sudden death and coupled with the fact that you have an ICD he may already have one risk factor for a high risk of SD based on his family history.
        Let your docs at CCF take a look at the records and give an opinion. However I would not think that a boy his age with a family history of HCM would now develope athletes heart - it is likely HCM and therefore all HCM precautions need to be taken.

        Start the conversation with him now so it is not a shock - give him information from the website - let him see there is more to life then sports and while it may not be easy he will come around in time.

        Be well,
        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)


        • #5
          Hi, first i'm new around here and a lot of people on this board know a lot more than me. I do however research a lot and have used a lot of information on this board to self diagnose myself (unfortunately). I am in a simlar situation to your son however i'm 37 have a slight thickening (nothing to worry about) so the cardiologist and my doctor say, however i do worry as i have children and i'm going to get a second opinion from a specialist in HCM.

          My mum (just recently diagnosed at age 60) and uncle have HCM and the family is just going through the screening process. Anyway i'd love to think i had athletes heart (sports mad ex cross country runner etc) But i recently read a study (i can find it for you if you want) in which 600 or so elite athletes were tested none came back with a septum over 12mm so the thinking was if you have a septum over 12mm you have HCM.

          No matter how much i want to believe my doctor and cardiologist i need to find out if i do or don't have HCM and even cardiologists don't seem to have a handle on this disease.

          All the best


          By the way my sister was tested and came back normal on her echo and was told not to worry about coming back for another 10 years even though mum and my uncle have it.
          \"There is no GENE for the human spirit\"


          • #6

            If your sister is an adult over 30, she should get an echo every 5 years.


            I'm sorry about your son. I would be sending my son to CCF asap with all the echos and go with what they find, but he should probably not be doing any training until he goes.

            Good luck!



            • #7
              Thanks Sarah i know and i've told her that (i will make sure she has another one in five years time).
              \"There is no GENE for the human spirit\"


              • #8
                I've meant to get on and reply for the past two weeks since we got back from CCF. And I was thinking of all of you at the annual meeting- couldn't go because of minor foot surgery.

                Anyway, to make a long story short...our trip to Cleveland was as close to a miracle as I've experienced. After three local docs, 2 cardiologists and 1 electrophysiologist, told us my son's heart wall showed thickening- Dr. Lever took a thorough look with many tests and says there is absolutely nothing. No HCM, no thickening- he's perfectly fine. He encourages him to be active, football is fine (although not his favorite sport- or mine!). It was so incredible. It certainly does demonstrate the value of specialists- the test here must have been wrong- the measurements bad or something.

                I am so grateful- I wish everyone else a similar experience. And thanks for the support.
                Diagnosed 8/2002, Myectomy (CCF) 3/2003, ICDs 2003,2006 (fired once appropriately), FT researcher, wife and mom of 2 boys (17 and 20).


                • #9

                  So happy to hear your good news. How great is that!!! You are right there is no comparrison to a specialty center!. Best to you , your son and the rest of the family. He is sure to have a great summer as will you all.

                  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
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 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


                  • #10


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