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My Son

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • #1

    My Son

    Well i just got the news no mother wants to here, my son just got back from his Echo and the tech said it looked like he had the disease, we don't know how bad it is yet or if he is obstructed but i will let you know more as i do, my doctor ordered a holter monitor for him to wear because he has been complaining of pains and his heart racing and the dizziness he was getting, i sent him to my doc because he will not just sit on this, i'm talking as if he is a little boy he is 28 years old married with kids of his own and yes i told him his kids have to be tested, i think i'm still in shock here i feel numb, i always thought if one of my kids were to get this i would fall apart

    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
    Tags: None
  • #2
    Re: My Son

    Do not fall apart - remember YOU have lived a rather "normal" life and so will he. I know you are upset, frustrated and angry...that is how we all feel at the time of diagnosis. Allow yourself to go through these feelings - BUT please do NOT allow it to step in the way of your recovery...FOCUS on the FUTURE...and all you have infront of you!

    Be well,
    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
      Re: My Son

      Hi Shirley,

      Sorry to hear that your son found out that he has this darn thing too. Like Mary always says, it's one club you definitely don't want to belong to. But it IS good news that he at least found out, right? He's also got a very experienced and knowledgeable mom to help him get this all straightened out.

      Take care,

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment

      • #4
        Re: My Son

        sorry to hear about this

        sandy

        Comment

        • #5
          Re: My Son

          Shirley, I'm sorry to hear about this. Remember, it's a good thing that he knows. At least he can adjust his lifestyle and get the proper care that he wouldn't get otherwise! We're here for you.

          Reenie
          Reenie

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

          Comment

          • #6
            Re: My Son

            Hi Shirley,
            Don’t listen to them – go fall apart and let Ken deal with picking up the pieces. Your son will get by somehow without your help, I’m sure. Hey, while we’re at it, did you ever consider bungee jumping, sky diving, or even a few snappy games of tennis?

            OK, feel any better now? Yeah, this disease stinks, and always has the potential to be shared with the family, but if a person takes normal care of themselves there is every probability they live a full lifespan – and enjoy it too. There are many diseases which stink much worse then this one does, with much more disastrous consequences.

            Your son is on top of the situation, and has a great mom to gain support and guidance from. If I know you at all, you will always be there for him and his family. Now go finish healing and take Ken out for dinner and dancing.
            Burt

            Comment

            • #7
              Re: My Son

              Shirley,

              First of all, I have a son who just turned 10yrs.old, even when he's 30! and he will always be my little boy! A mother never stops worrying and I worry about Matt getting HCM too. There have been so many extraordinary advances in medicine with this disease. Whatever feelings you have right now....let it all out. Then you can manage some composure and help him with the knowledge you have about HCM. He's 28 but most likely live a long life with it, like the majority of HCMers. Every day they are discovering new meds to help us live better with HCM...take care

              Cynthia
              \"It is not length of life, but depth of life.\"

              Ralph Waldo Emerson

              Comment

              • #8
                Re: My Son

                Shirley, You will be in my prayers. Cynthia is so right, a mother doesn't stop worrying. I'm sure a father doesn't either, we just all have different ways of going about it. You've had so much to deal with lately and are still recovering from major surgery. Please take care of yourself and let us know how things are going. You will deal with this whole thing in whatever way works for you, but you know we're all here for you. Linda

                Comment

                • #9
                  Re: My Son

                  Shirley-
                  I know exactly how you feel, my Baby Boy 32 years old, was diagnosed with HCM, last week. After my constant nagging he went to see a Cardiologist- fortunately he doesn't have an obstruction (at this time), but he is experiencing bothersome arrythmias(spell?)-so they gave him an Event Monitor. He unfortunately lives in a different State, so I can't share my great Dr. with him. However, when he asked the Dr. about testing his children, the Dr said "HCM is only passed down by Women" is this Correct? do I not have to worry about my Grand Daughters?
                  RONNIE
                  RONNIE

                  Comment

                  • #10
                    Re: My Son

                    Ronnie , I can't wait to read Lisa's reaction to your son's Dr. saying it was only passed down by women! I won't respond because I gotta see What she says ! I think his Dr. needs a packet of info and your son might need a new Dr.
                    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

                    Comment

                    • #11
                      Re: My Son

                      Shirley, I am sorry to hear of your son's dx. It is a worry no parent needs. My oldest girl 24 will be tested in early April and the 23 and 17 year old in May. I am so concerned and already worrying too much for my own good. So I like everyone else know where you are coming from. My thoughts are with you and you family. He is lucky to have you as his pioneer. Be well , Pam
                      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

                      Comment

                      • #12
                        Re: My Son

                        RONNIE

                        That doctor is SO SO SO off base. HCM is an equal opportunity genetic disorder!!!!! I can't emphasize that enough. Your son definately needs to educate his doctor and probably needs to find a new doctor. Bottom line is, if he passed the gene, your grandchildren will have the mutation that makes HCM possible. Please urge him to see another doctor. Also, contact Lisa to get him and his doctor HCM packets that explain what the disease is and lots of info about it. Show him our site, especially the front pages about diagnosis, treatment, complications, etc. He should find it interesting.

                        Reenie
                        Reenie

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

                        Comment

                        • #13
                          Re: My Son

                          Pam - this is for you...AAAAHHHHHHHH

                          Ronnie, Now let me respond to you... This is completely incorrect information and the doctor requires a great deal of education ASAP. I would be more than happy to send him a packet of information to assist him in his learning. If you would like to know my "gut" reaction to your post...please note my responce to Pam above

                          To all:
                          This is a "Lisa Venting Moment"..they do not come often but they are needed from time to time...
                          AAAAAAAAAHHHHHHHH
                          OK we need to REALLY get the word out there as to what HCM IS AND IS NOT!!!!!!!!!
                          I think we make some progress...only to be hit with "only women carry the gene"...or... "you need an alcohol septal ablation or a heart transplant" within 1 hour of each other..... AAHHHHHHHHHHH...

                          I will now resume my normal behavior....

                          In short...ladies and gentlemen...we have a great deal of work to do!

                          Love,
                          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
                            Re: My Son

                            I knew you would not disappoint us Lisa. In spite of the seriousness of this subject I got a major laugh from your response. Thanks for that. Love you too Lisa.
                            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

                            Comment

                            • #15
                              Re: My Son

                              I want to go see the doctor your son goes to....Maybe then I wouldn't have HCM.......But unfortunately, I am living proof of his being incorrect. I can promise you that I got it from my DAD....who, by the way, got it from HIS DAD.

                              This amount of ignorance in physicians scares me.
                              Daughter of Father with HCM
                              Diagnosed with HCM 1999.
                              Full term pregnancy - Son born 11/01
                              ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                              Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                              Comment

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