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HCM and me ...

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Lisa Salberg Find out more about Lisa Salberg
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  • Chezzden
    replied
    Re: HCM and me ...

    I have HCM. Of my eight children three have HCM; one of which died at age 16. Two other children have had the genetic test and have the gene. The three of us with HCM have ICDs. The remaining three that haven't yet been tested haven't been in a financial position to get tested yet. Fortunately, none of them exhibit symptoms.

    My youngest son with HCM has persistent fatigue. He doesn't complain ... but it sure is hard for me to watch him struggle with simple things. Yesterday, his ICD misfired twice. Uhg. It was so traumatic ... and then such a roller coaster when the technician told us that the ICD has misfired because his heart was working well with in parameters. The doc reprogrammed the ICD so it's now less sensitive ... so it shouldn't miss-fire again.

    He gets so discouraged right now. He's having a hard time reconciling the life he wants with the one he fears he'll need to settle with.

    Trusting God's goodness...

    Leave a comment:


  • Cynaburst
    replied
    Re: HCM and me ...

    Rachelle - Sorry to hear this, put please be optimistic. Now that you know, there are steps that can be taken. Also, medicine is evolving all the time. They are coming up with more and more treatments for HCM, and are doing so much work in the area of genetics. Who knows what is around the corner for any of us? Your son will in all likelihood lead a normal life with some small adjustments for HCM. Just get him the best care at an HCM Center, and be the same great mom you were before.

    It will get easier, I promise. The HCMA is here for you every step of the way.

    Hang in there!

    Leave a comment:


  • Rachelle
    replied
    Re: HCM and me ...

    I was diagnosed with HCM 15 years ago while pregnant with my first son. I had no symptoms but my OB heard an unusually loud murmur during an exam and sent me on to a cardiologist who diagnosed it. Because my septum measures 3cm, I had a ICD implanted - never gone off. No obstruction, no real symptoms until I was in my 40's and even now at 46, I don't feel too bad - some chest pains with exertion and occassional shortness of breath but still very active. I was always very thankful that my symptons weren't worse. My life was changed 2 weeks ago when my son was diagnosed as well. I have both of my boys screened every year because they're so active and have always had clean check-ups until now. He's 15 and right in the midst of puberty - go figure. My son has no obstruction, no scarring on MRI, no gradiant, nothing except a thickness of 16mm. Although I would give anything for his condition to stay just like it is, I know there are no guarantees with this mysterious disease. I just pray for him and for my younger son to be healthy. It's been a very hard 2 weeks.

    Leave a comment:


  • murmom
    replied
    Re: HCM and me ...I anot new but back again, son is having myectomy

    Lisa It's Marnie the Murray Family from Delmar, NY. Our family history is my husband and 1 son have HOCM with ICD's and meds. My husband's brother died at 16 and mom at age 60 from this. We recently went to Tufts to see our beautiful Dr. Maron. Thomas (my son) who is 17 had a check up and we received devasting news his thickness is now 39mm with obstruction. He has been having symptoms chest pain, tirednes, shortness of breath and worst of all extreme pounding of heart. This is puberty's bad side with HCM and was our biggest fear. We are going back on July 23rd to do pre ops and schedule a Septal Myectomy. He is nervous an scared as all of us, I just pray he gets relief he is so young for it to have progressed so much. Does anyone else have a child with this size and have you heard of any children having the myectomy? If so what age and how was recovery and results?

    We are raising funds for our family I am not asking anyone to donate but if you want to read our story it is there so we all know we are not the only ones battling this terrible disease.

    http://www.giveforward.com/th

    I know we are in good hands with the Tufts team and cannot thank this organization for putting me in touch with them many mooons ago.
    Dr. Rastegar will be our surgeon. Keep us in your prayers and will certainly do the same for you all

    God bless,
    Marnie

    Leave a comment:


  • Jordans
    replied
    Re: ICDs

    grandfather-sudden death
    mother-diagnosed with IHSS 20+ years ago, has had pacer, open heart(myectomy, maise, valve replacments)
    brother- diagnosed 3 months ago HCM non obstruction
    myself- diagnosed 1 month ago HOCM

    Leave a comment:


  • Nisie
    replied
    Re: HCM and me ...

    Hi, I'm new to the site. My husband (56) was just diagnosed with HCM. As far as we know, no other close relative died from HCM. We are both still coming to terms with the effects and possible consequences down the line. It worries me that my two adult sons (28 & 25) may have inherited HCM, although they have not been tested yet and show no symptoms (They will be tested soon). This is a wonderful site for information and I have recently enjoyed watching the live video presentations given by doctors who specialize in this disease. If you get a chance check out... http://www.4hcm.org/2008meeting/ to view the presentations.

    Leave a comment:


  • tereldm
    replied
    Re: HCM and me ...

    Please keep on them to get tested if we would only have known about this disease before we lost our son. I think that it should be a regular test that children take before entering school in K, Middle School and High School or more if there is heart problems in the family history.

    Leave a comment:


  • sarahmarie02
    replied
    Re: HCM and me ...

    My dad died from HCM and dialated cardiomyopathy when he was 44. His father died 44 years ago from what was listed on his death certificate as a heart attack I believe. Its now believed it may of been HCM as well. My dad's sister and also one of his two brothers also have it. I am just waiting to have my echo done on june 2nd to confirm whether or not I have it and I am encouraging my sisters to be tested and my sister to have her son tested. But so far both are resistant to testing.

    Leave a comment:


  • Bucky
    replied
    Re: HCM and me ...

    Hi All:

    Diagnosed in June of 2007 after a sudden onset of SOB. As I look back over the years I had some clues that something was amiss (palpitations, edema that would come and go), but never checked things out with an ultrasound. Had a number of treadmill tests and ALWAYS did well, so what, Me Worry? Nope.

    My mom told me once that she had an enlarged heart. She never said anything else and I never knew that it was anything I should get checked out. I recall my mom saying that a couple of her brothers had heart problems but they were much older and I never new them and mom never shared much info.

    So, here I sit along with the rest of us.

    bucky

    Leave a comment:


  • biokemkid
    replied
    Re: HCM and me ...

    I lost my Dad to HCM 5 years ago. I have HCM, as does my brother, and most of my aunts, uncles and cousins...if there's a 50% inheritance rate - then we're loosing that lottery

    The good news is most of us have ICDs implanted now (6 and counting!). And I can't say enough about the usefulness of genetic testing. The gene I have has an 80% penetrance...two of my cousins have the gene but have not developed HCM. They could develop it later in life or they could both pass it on to their children. Without genetic testing we would not have known to continue monitoring their condition or their children.

    Leave a comment:


  • krislawrence07
    replied
    Re: HCM and me ...

    My uncle died at 44, My dad, 56 and myself, 28. My daughter has no signs right now, she's 6.

    Leave a comment:


  • dkell88
    replied
    Re: HCM and me ...

    I have HCM but when I was 14 they told me it was a heart mummur. I did not find out until later what it actually was. I have never been big into sports or anything so I have never had to worry about that. Lately though I have been having chest pains and always tired. So I went to my family doctor who sent me to a cardio specialist. We found out I need heart surgery and he put me on to meds.
    Not to sure how much they help because they make me more sick then anything. I still suffer from my chest pains now and then mostly when I walk upstairs to go to bed or when I am just lying around watching tv. I use to walk everywhere I went but now I can't even do that. Here I am 26 years old and I feel like I am 80. I am just waiting to hear back from the surgeon as to when the surgery will be or even the appointment to meet with the surgeon.
    As for my family having it I am not sure as I was adopted when I was a baby and the adoption agency will not give me any information. The government is no help either. My adopted family is great though because they have learned everything they can about HCM and take time to let me catch up to them. I do have good days but it seems they are far and few between lately. I can't say I am depressed at all because I am a happy person all the time. I like to look on the good side of things and Praise God for giving me a good life and a excellent family. I know God has a plan for us all and we all have this for a reason. For me it is to show that no matter what you can not give up and you must keep fighting. When I think about Jesus dying on the cross for us he went through a lot worse then we could ever think of. We are the lucky ones because we had someone that did that for us.
    Keep on smiling and thinking about all the good in your lives it helps you when you need to keep going. Just think about those who love you and will always be there for you.

    Smile and Pray it does your heart good
    David

    Leave a comment:


  • tereldm
    replied
    Re: HCM and me ...

    Our son had and died suddenly to our knowledge no one else has died from it and my husband, daughter, grandson(his dad is the one that died), grandaughter and myself have been tested also 3 of by brother-in-laws no one has it. On my side I only have one sister and she is clear also.

    Leave a comment:


  • simmsrs
    replied
    Re: HCM and me ...

    I was 15 and collasped while playing basketball when I found out I had HCM. While in the hospital they screened my parents to see if they also had HCM. Come to find out my mother has HCM, but her case is not as bad as mine.

    Leave a comment:


  • Maddy
    replied
    Re: HCM and me ...

    I have HCM. One sister has HCM w/obstruction. One sister died in 2000...dialated cardiomyopathy and CHF. One sister is fine. 9 nieces and nephews have all checked out ok. My father had a triple bypass at 39 and 44...(killed in boating accident in 1985).........but my mom seems to have passed it to us.....she died at 59 of brain cancer. I have a copy of her EKG which is abnormal.
    Maddy

    Leave a comment:

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