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Daughter Diagnosed with HCM

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Rene' Koenig Find out more about Rene' Koenig
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  • Daughter Diagnosed with HCM

    At the moment, my heart is in the pit of my stomach I'm sure MANY of you have been in the same boat. My daughter Melissa, who is 23 yrs. old just received her ECHO results (which was done 3 yrs. ago) and it confirmed that she has HCM. I have HCM also and so does my brother. When Melissa was in middle school, my Cardiologist said he thought she was developing it. He advised against playing soccer (which at the time was very important to her)...it changed everything for her, since she was very active and athletic. She has never been symptomatic. Several years passed, and he thought that maybe she didn't have it afterall. She is extremely independent and bullheaded at times, and only had the echo 3 years ago, because Lisa was able to talk her into it. She would not go back to get the results...decided she didn't want to know. They would not give me the results, since she was no longer a minor. When I visited my Cardiologist last week, he mentioned (thank goodness he wasn't concerned at the moment about HIPPA !) that she needed to come in, that as he recalled, the septum was thickened. After me pleading, she finally had the results faxed to her. She acted very casual about it and said that she would make an appt. in September when she has health insurance again. As a mother, I am crushed and worried, and feel really guilty that I passed this on to her. How have others dealt with finding out that your child has HCM? I realize that she's 23 and an adult, but she's my only child and has always been my entire life! We have always been very close and I want to be supportive, but don't even know what to do or say. Any advice would be greatly appreciated!

    Rene'

  • #2
    Re: Daughter Diagnosed with HCM

    Hi Rene

    You said in your post that you feel "guilty" passing this disease on to your daughter. I believe all parents that have passed it on feels guilty. That is the love we feel for our children and the knowledge of what they may have to go through that makes us feel guilty. I too passed it on to my son. To make a long story short, my son passed away when he was 15 with us not knowing he had HCM. Feel blessed that your daughter, if need be, had been diagnosed early. Can you convince her to come to this site and read some of the posts and maybe ask some questions? Many people live a long, eventful life, with some restrictions, with HCM. I was diagnosed when I was 20 and I am now 51. I have 1 daughter, gave birth to my son after my first myectomy, worked a full time job since I was 23 and had my second myectomy in 2000. The technology is far more advanced now that ever before. It is almost like making miracles happen. Of course we do have our down days, I'm sure you are aware of this, but with a very knowledgeable cardiologist in HCM there is so much they can do. First of all, your daughter MUST be informed about how serious this disease is. She must realize the consequences if untreated.
    Esther

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    • #3
      Re: Daughter Diagnosed with HCM

      Rene
      For some reason I couldn't finish my post. I think most important is KNOWLEDGE. Lisa always stresses this is very important, and it is! Maybe you'd like to talk to Lisa. I'm sure she will be able to give you some pointers. She is like a mother hen to all of us due to the knowledge she has. Her number is listed at the end of this page.
      Please keep us posted.
      God Bless
      Esther

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      • #4
        Re: Daughter Diagnosed with HCM

        Dear Rene,

        I'm sorry about your situation. I am a daughter whose mom "gave me" HCM. Please don't feel guilty. It is normal to feel that way, but it isn't as if you picked and chose which genes to give your child. I don't feel any animosity towards my mom about the HCM. I am angry sometimes about the HCM in general, but my anger has only been with how she has dealt or not dealt with it.

        Your daughter may feel that her progression of HCM will be identical to yours. Please assure her that it will not. Despite being in the same family, each indiviual's experience of HCM will vary depending on their own health, their attitude, and their treatment. Despite her soccer ban, it isn't the end of the world. It does mean that she should be seen to make sure she gets the full story on her heart.

        If she doesn't have any symptoms, then that is great, but if she does, she should consider medication. She needs to be honest with herself about it. Hiding from HCM isn't possible, although god knows we've all tried.

        Ultimately, all you can do is be there for her, but make sure she gets accurate information about HCM as best you can.

        take care,

        S

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        • #5
          Re: Daughter Diagnosed with HCM

          Dear Rene’,
          I inherited a whole mess of things from my folks – HCM of course, but that is more or less a side issue. The big one is familial hyperlipidemia (cholesterol, triglycerides, etc.), which brought on diabetes, multiple angioplasties, kidney problems, and a whole list of associated ailments, but most of all, and by far the greatest thing I got was - life. Everything else pales in comparison.

          You can feel guilty if you want, and she can feel abused if she wants, but you can’t escape the bottom line – you gave her life itself. Everything else is a handful of confetti in a blizzard. By all means have a ‘heart to heart’ talk with your daughter and explain your feelings and concerns – and listen to hers. She sounds like she is in an escapism mode now, and I think you should try to impress on her that the condition will not go away by ignoring it, but it can, and is, dealt with and controlled by a whole lot of people every day of their lives.

          Next month I will be 72 years old. I am still living - with a whole raft of ailments brought on by inherited conditions – and I plan on continuing enjoying life for as long as the good lord allows. Problems have a habit of getting right in your face, and often hide the many blessings we enjoy every day also. Stand back and you’ll see how lucky you are to have her, and how lucky she is to have you. HCM is a condition, not a sentence, and a full long life is still as possible to us as it is to everyone else.
          Burt

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          • #6
            Re: Daughter Diagnosed with HCM

            Rene',

            I am glad she had her echo. I am happy she now has her results. I must admit I am outright shocked that the doctors did not call her and give her the results 3 yrs ago, however, she now has them and can take care of herself.

            You asked basicly how to deal with her during this time. In short there is no magic answer to that question - we are all different. Some need to talk talk talk about it - some need to process it inside then talk about it. Do not push too hard, simply let here know that you are there, which I am sure she knows. Help her understand how to protect herself and that there are people she can talk to if she has any questions (You, Me, the others here on the board and most importantly her doctor).

            We know you love her and we know it hurts to know that your child has this *&#$%$$ disease, but we also know that she is all the wonderful things she is because of YOU!

            Take care

            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)

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            • #7
              Re: Daughter Diagnosed with HCM

              Rene

              My Mother had HCM, My Brother & I, also have HCM & worst of all my Son (who's 31 & Father of 2) has HCM. Thanks to this Disease I've had 2 "Open Heart Surgeries" this Year. I've also learned how strong I am, How GREAT & LOVING My Husband & Family are. I've Had a FABULOUS LIFE!
              HCM, is NOT a death sentance for goodness sakes! Everyone has some restrictions. You can treat this as "Glass half empty" OR BETTER YET "Glass half full" I can think of no way this has really impacted my Life, so I felt a loss. I have been at the point where I visited my Cardio weekly, spent lots of time in the CCU etc-but you gotta bounce back! When I feel good I play golf, spend time on our boat, travel etc. When I don't feel good I read, knit, talk to my Friends. I enjoy my friends & family every single day - good days & bad.
              It's up to You, to help set the tone for your Daughter. Remember, we all think our children & grandchildren are the Sun & Moon, noone wants HCM - or for that matter any Disease, but it happened to Me & it happenned to You.
              BE WELL
              RONNIE

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