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The person in my life that has HCM is ...

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Re: The person in my life that has HCM is ...

    I've been reading through the posts and noticing how much pain some of you have been going through. My goodness it's so sad. Has anyone here found a friend on the board who they contact on the telepone. I was just wondering! I myself am a little jealous that I live so far away. Not to many Canadians here. Too Bad!
    Tammy

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    • #17
      Re: The person in my life that has HCM is ...

      Hey Tammy,
      Some of us Instant Message each other from time to time. You can download AOL Instant Messenger free of charge – without subscribing to AIL. If you want to IM me anytime, please feel free. My ID is, [email protected] – but don’t be shocked if I don’t answer. I almost always have my PC on, and since I use a cable modem, I’m always connected, even when I’m not here.

      If you get set-up, let me know your address – and we’ll ‘talk’.
      Burt

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      • #18
        Re: The person in my life that has HCM is ...

        Hi Tammy. I've spoken to a few people on the phone from the HCMA and I've IM'd more. If you would like to IM me, feel free to PM me and I'll send you my user name. I use MSN and AIM at home and AIM at work.

        Reenie
        Reenie

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

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        • #19
          Re: The person in my life that has HCM is ...

          So far, I am the only one in the family with HCM. When I was diagnosed 3+ years ago I was told to tell my brothers to go get tested. They have not. However, at 45 and 37 they show no signs of the disease. I have my kids, 5 and 12, echoed every year. No sign so far.

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          • #20
            Re: The person in my life that has HCM is ...

            I am the only one in my family with HCM, but my grandmother had open heart surgery a few years back. My mom has a heart murmur, but I dont think she has had any problems because of it.
            I'm just your average 16 year old teenager who loves to have fun and be wild and crazy with my friends.
            One day I hope to get past the fact that I have a heart disease and become an SBI or ATF agent.

            Comment


            • #21
              Re: The person in my life that has HCM is ...

              Hi my name is Sharon Huxtable. My husband is the one with the HCM in our household. He is 32 years old, we have 2 children ages 7 and 5. He also suffers from CHF, and mitral valve prolapse. He had an AICD implanted in September of 2005. It has been a very hard road to travel, but the best way we have learned to survive this is to live day by day. It has helped tremendously. We don't think about what tomorrow will bring lets live today. I love my husband dearly and this disease makes me angry. It helps to talk to my family about this but most of all our support has come from our mothers and my siblings. Without them I'm not sure what i would do. I'm glad to have found out about this site to know we are not the only ones going through this.

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              • #22
                Re: The person in my life that has HCM is ...

                I'm glad you've found us too. Is there any way you can go to NJ in June? We'll have the annual meeting and you can meet a lot of others who know exactly what you're going through.

                Reenie
                Reenie

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

                Comment


                • #23
                  Re: The person in my life that has HCM is ...

                  Welcome - I'm glad you have such a supportive family. Now, you will find much more support here. Please try to find a time to call the HCMA office to talk more specifically about your situation. Search thru the web-site to learn more about HCM. I hope your husband will use the site to learn also. Best wishes - Linda

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                  • #24
                    Re: The person in my life that has HCM is ...

                    So far it's most of my father's side of the family - him, his brother, probably their father, and me. It seems to hit us around 50 or so, and so far none of my sub-50 siblings have had any symptoms.
                    First major HCM symptoms at age 50
                    ICD 6/06

                    Comment


                    • #25
                      Re: The person in my life that has HCM is ...

                      Sorry to hear about your son's condition. There is so much to be learned about this thing. He is young enough that he will learn about living a restricted life as far as activity is concerned.
                      My son was diagnosed when he was around 30...by then the damage was done and he passed away suddenly in May at age 36. (He was playing ball.) He led a very full life and travelled and enjoyed every minute of living. He was married for 2 years, but did not have children. I guess that's a mixed blessing, because his young wife would have been left with a potentially ill infant.
                      But, in addition to learning to deal with the disease, you will have to teach your child to love the more sedate things in life. There's so much out there in this world to enjoy, that should not be too hard.
                      Good luck to you. Love that little one and enjoy every minute of every day.
                      Linda G.
                      Son died of cardiac shock second to HCM at age 36.
                      Live Well...Laugh Often...Love Much

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                      • #26
                        Re: The person in my life that has HCM is myself.

                        Hi to all I am a new member and think this a great way of getting to know others who has HCM. I have just turned 21 yrs of age. I have been diagnosed a year now of this. I was a athlete playing all sports on the Irish team for table tennis and played inthe all -Ireland final in Gaelic football but at this stage of my life i knew their was something serious wrong and scared. I was passing out within 4 minutes into matches vomitting everywhere not knowing what 2 do. I am a very determined person and will not giveup or let anything drag me down. I was diagnosed but i dont think it has sunk in really. I find it very hard 2 give up what i dream sport sport but from that day i was diagnosed the buzz out of life has gone. When i am happy must is when im in full control on the pitch. That is no longer the way all my friends play with me and that what community is all about. I have moved into goalkeeper position but i know i have to stop or HCM will stop my life alltogether. I had 1 year left of my teaching sports degree that had to be stopped so now im in 2nd year of my teacher training course for primary teaching it was a risk which i throughly enjoy. I am a smiling, jolly person that will not let anything drag me down but i feel i have lost that kick of life.

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                        • #27
                          Re: The person in my life that has HCM is ...

                          I don't know if my mother or father had HCM... my mother showed a lot of the symptoms of HCM that I do, but she was very sedentary because she was crippled and couldn't get around easily. So that may have kept her alive longer, and there was never a diagnosis of HCM. Also, my father, his father, and his brother all died in their early 50's from "heart attacks". That was back in the 50's and 60's... did they know that much about HCM then?

                          Thankfully, my sister and brother have been screened and do not have HCM. My oldest daughter, who is 35 has been screened and is ok. My son, who is 35, has not been screened... I wish he would be. My youngest daughter, who is 16, has been screened every year since I found out in 2000 about my HCM, and is clear so far, thank God.

                          Tim... I tried your link, and it didn't work. I would love to read your story. My heart goes out to those of you who have suffered such great loss, and those who are dealing with the shock of learning of your loved one's HCM.... especially the little ones.

                          I will be going to Mayo Clinic on the 16th for a myectomy. Like someone else said, I try to stay positive, but it feels comforting to be connected to others living with this unique situation.

                          My love and blessings to you all.....Mary
                          MaryO

                          Though we travel the world over to find the beautiful, we must carry it with us or we find it not. Ralph Waldo Emerson

                          *****************************************

                          Diagnosed April of 2000, Septal ablation in 2002, scheduled for Myectomy at Mayo Clinic April 16, 2007, cancelled April 13, 2007 due to disappearance of obstruction and symptoms, radio frequency ablation at Mayo Clinic January 29, 2010 for AVNRT

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                          • #28
                            Re: The person in my life that has HCM is ...

                            Amanda - Welcome. I'm sorry you have so many difficult changes to make in your life right now, but you have lots of support behind you here. We look forward to hearing more from you and how things are going.

                            Mary - Best wishes go with you for your trip to Mayo. We'll be looking for updates -

                            Linda

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                            • #29
                              Re: The person in my life that has HCM is ...

                              My 11-year-old adopted son has HCM. Because he is adopted, we did not know his family medical history. I just posted in the "Hello, my name is..." section.

                              Here's the "short version" of our story: My son was diagnosed in August 2006 by his primary physician, who then referred us to a local pediatric cardiologist. His cardiologist put him on atenolol and increased the dosage twice with little results. A couple of months ago, he consulted with a leading expert, who recommended surgery. So, last week, on March 29, he had a septal myectomy done at the Mayo Clinic in Rochester, MN.

                              The echo done after his surgery showed that there is still some mitral valve regurgitation, but his surgeon said that it could be because his hemoglobin count is low. He said that they should get a better picture of things when they do another echo in 3 to 6 months. But he said that he may have to have another surgery down the road when he's older and bigger. The final word that we were given at his hospital discharge was, "it's not perfect, but it's acceptable"...not exactly the word this mother wanted to hear!

                              Anyway, while he was in the hospital, another patient told me about this website, so that's what led me here! I hope to interact with others who can relate to what our family is going through. I've done a lot of reading about HCM to try to understand what we're dealing with, and I'm scared! The surgeon told us that even with the surgery, there's no guarantee that sudden death won't occur. Our family has never been competitive sports-oriented (We also have 2 older biological children-both sons), so the "no competitive sports" rule doesn't bother us.

                              I want to be positive and believe that my son will live a long life, but I'm also trying to come to terms with the possibility that it may not happen...then again I remind myself that none of us has a promise of tomorrow. I've found, though, that this topic is not one that my friends and family want to talk about...they all just encourage me that he's going to be fine. One thing this diagnosis has done for me is to not take his life for granted, but to appreciate each day that I have with him, to enjoy his wonderful sense of humor and cherish his sweet smile.

                              Thanks for taking the time to read my post and I'm looking forward to discussing things here on the forum!

                              Gwen
                              13-year-old (adopted) son diagnosed August 2006, septal myectomy March 29, 2007, Mayo Clinic-Rochester, MN, ICD implantation, May 20, 2009, Monroe Carell Jr. Children’s Hospital at Vanderbilt (Vanderbilt University Hospital), Nashville, TN
                              One thing this diagnosis has done for me is to not take his life for granted, but to appreciate each day that I have with him, to enjoy his wonderful sense of humor and cherish his sweet smile.

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                              • #30
                                Re: The person in my life that has HCM is ...

                                I am not one for sharing my feelings. I don't know why. I've known I have this condition for almost three years and honestly, I try not to think about it. I rarely talk to anyone about it. My mother has this, too. She has her own problems and I don't want to cause her any more concern.
                                I don't know much about this stuff. Never really payed too much attention in science class so the heart is a mystery to me. My doctor is a pretty cool guy who tries to answer my questions but the lingo is beyond me. We've tried various meds but they all slow me down and make me tired. Honestly, I fell better off meds and my doc says it's ok to stop taking them.
                                I have felt all the emotions I can possibly feel. Confused, angry, sad, worried, and depressed. My family keeps saying 'at least now you know'. Sometimes I would rather not know. Now I have to worry about my sons and whether they will be ok.
                                I know this is a rambling mess but like i said, I don't usually share my feelings.
                                Diagnosed with HCM August 20, 2004
                                Family history.. ask Shirley Mahoney
                                ICD put in August 27, 2004
                                Generator replaced November 24, 2008
                                Two boys that are clear so far

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