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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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  • #31
    Re: The person in my life that has HCM is ...

    Dear Fiend... I am glad you are sharing your feelings. It's really important, I think, to be able to share what you're feeling, rather than bottling it up. And this is the perfect place to do that, because we are all "in the same boat" here. So whatever you're feeling, many others are feeling, too.

    I had the same experience as you when I was on beta blockers. I take a calcium channel blocker that works great, but I couldn't add even a half of the smallest dose of a beta blocker. It made me like a zombe, and I couldn't accept that.

    It's good that you have your music. I am a musician, too, and I know that helps me through some of the darker feelings when they come.

    Keep sharing, and know you are not alone, and your feelings are welcome here, as are you. Blessings, love and light.... 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

    Comment


    • #32
      Re: The person in my life that has HCM is ...

      Hi Drumfiend,

      I agree with what Mary wrote...I think it's good to share your feelings. That's what's nice about the forum, if you don't feel that you can share your feelings with those around you, you can share them here. There are others here who understand what you're going through. I think another benefit that I've already seen here is being able to ask questions and read about other people's experiences in perhaps simpler terms than you can get from your doctor.

      My husband is a drummer too! (And I play the piano/keyboard. Our sons all play musical instruments as well.)

      BTW, I like your avatar!


      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.

      Comment


      • #33
        Re: The person in my life that has HCM is ...

        Fiend,

        I know how you feel with the medications dragging you down and feeling worse. Are you obstructed or non-obstructed? Also, is your cardiologist an hcm specialist? If not I would be leary of going off of all the cardiac meds because they help you in the long run by relaxing your heart and if you are obstructed can help with that.

        It is good to share your feelings with others. If you bottle them up then it adds more stress and can aggravate the HCM. We all have went through the stages you have mentioned. It is alot like when we lose someone in fact we have lost someone our old self. So, we just have to make a new self that comprimise between what we were and what we are now.

        Hope this helps!

        Mary S.

        Comment


        • #34
          Re: The person in my life that has HCM is ...

          Well, my son had his follow-up appointment with his cardiologist today. He said that everything looks great! They did an echo and an EKG today, so he could see how things look "in there" now. He said that the obstruction is gone (thanks, Dr. Dearani!), but there is still some mitral valve leakage, which we knew about already. That may clear up some when his hemoglobin count gets back up to normal. So that is something that they'll keep an eye on. But he was very pleased with things! He said that he was glad he sent us to Mayo!!!

          Next appointment: May 15.

          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.

          Comment


          • #35
            Re: The person in my life that has HCM is ...

            Awesome!!!! Good news is always....good.


            Mary, I have no idea if I am obstructed or what that even means. My mom goes to the same group of Cardiologists so I guess he's good. My job causes me to miss appts. alot. It's a very small company that does more work thane we should. But coming to this board is part of the change I want to make. I want to be a little healthier, little more in shape. I need to browse some threads to find some nutritional advice. Alot of the diets, I hear, are not too good with HCM. Off to surf...
            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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            • #36
              Re: The person in my life that has HCM is ...

              John

              Correct if I'm wrong but I believe you told me your thickest part was in the middle of you septum if so it is likely that you are non obstructed, that is something you need to ask your doctor, I know I'm your mother but I think If I were you I would go see a specialist like I did, Dr. Maron did straighten out and answered many questions I had concerning this disease that these doctors here answered very vaguely. Any time you want to talk you know I'm here for you and will help you with just about anything, but right now I need to lay down this flu is kicking my butt

              Mom
              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

              Comment


              • #37
                Re: The person in my life that has HCM is ...

                Shirley and John,

                Just because the thickest part of the septum is not at the top does not mean that he is not obstructed. The thickest part of my septum before my myectomy was in the mid cavity. Dr. Dearani called it a "lemon" shaped septum. That is also where my obstruction was - in the mid cavity. He cut all of the lemon away so now I am not obstructed anymore.
                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


                • #38
                  Re: The person in my life that has HCM is ...

                  Sorry Cynthia

                  I knew you were going to come into this one I couldn't remember if you could still be obstructed or not come to think of it I think he also has SAM so please educate us as I'm not familuar with that kind of obstruction mine was at the top of the septum

                  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

                  Comment


                  • #39
                    Re: The person in my life that has HCM is ...

                    I am a little fuzzy here myself. As much as I understand it, obstruction is most frequently occurring in HCM at the top of the ventricular cavity caused by a bulge at the top part of the septum. While this is the most common form of HCM, it is not the only form. Some people have concentric hypertrophy where the whole left ventricle is thicker than normal (like me) and some people have their thickest point down further but the rest of their ventricle is not thick.

                    I also had and still have SAM. I always thought that SAM = gradient, but apparently this is not true. The three factors which they look at are:

                    1) a true pressure gradient, measured in millimeters of mercury - mmHG which is a number, like before my myectomy my last one was 85 mmHG;

                    2) the presence or absence of SAM, or systolic anterior motion of the mitral valve, which is when the valve touches or catches on the septum; and

                    3) mitral regurgitation, which is how much the mitral valve leaks blood back into the ventricular cavity instead of sending all of the blood out into the body. This is measured on a scale of 0 - 4, or trivial up to severe.

                    Now, I get confused as to how these combine. Maybe someone who understands this a little better than me can jump in here. I still don't have it straight as to how you can have SAM but no MR, or gradient. Or a gradient with no MR.
                    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


                    • #40
                      Re: The person in my life that has HCM is ...

                      Well,

                      I am non-obstructed with mine being lower to the extent that some of my echo's have even said apical. But, to that matter I also have SAM and some mitral regurg.

                      You can request your echo results from your cardiologist or the hospital. That will probably shed a little light on what form of HCM you have.

                      If you want start another thread when you get the results and we can help you mill through them.

                      Gotta love trying to figure out HCM!

                      mary S.

                      Comment


                      • #41
                        Re: The person in my life that has HCM is ...

                        my 4 month old nephew, Magglio. He was just diagnosed this past Wednesday and my family is devastated. As far as we know he is the only one in our family to have this condition, so we are all frantically researching everything and anything we can get our hands on. We are still trying to figure out the cause and the proper course of action to cure or live with this condition.

                        Right now he is on beta blockers and we are awaiting gentic testing to find the right course of action. In a few weeks they will take another EKG to see if his ondion is worsening and after that there is a chance he will go on a donor list.

                        Any feedback would be appreciated.
                        From a caring and first time Uncle.
                        Keith
                        Uncle Keith
                        Magglio-Diagnosed with HCM at 4 1/2 months old on 3/13/08

                        Comment


                        • #42
                          My Dad

                          So my dad actually died from HCM 10 years ago this past March. His father we also suspect may of had it as he died 44 years ago from a heart attack. My aunt and one of my uncles also has HCM. I am currently in the process of getting tested to see if I have it and though my EKG was ok, I am having an ECHO on June 2nd. Its a frightening thing. Especially reading some of the statistics out there. What prompted me to be proactive and get tested is that I was watching a tv show where one of the main characters was diagnosed with it and his two son's both went to get tested. During the episode they mentioned the disease and I though hey thats what my dad had I think. And they also mentioned that there is a 1 in 2 chance of it being inherited by their children. I though that has to be made up so I started searching online. And searching and searching. And article after article backed up that tv show. So I sat down and talked to my boyfriend and discussed how my dad died when I was 16. I told him the disease was hereditary and there is a huge risk of it being inherited. I called my dr and she agreed that I should get tested. Especially since I have some of the symptoms they state are commonly misdiagnosed.

                          a) I have asthma. My doctor has stated it is activity or exercise induced as it only tends to become an issue with strenuous activities or exercise.
                          b) I have moments where my chest hurts badly and yet after several ekg's the dr's have just decided these are a form of panic attack's or anxiety attacks brought on by post tramatic stress syndrome from a previous abusive relationship.
                          c) there are moments where I am just sitting there or standing there, not having just stood up that I get dizzy. I actually was sitting there one day at work, doing my thing when I passed out while on the phone with a customer. They called an ambulance and it was said it was because i was slightly dehydrated and had slightly low blood sugar.... but my dr suspected something more and just told me to get more rest.
                          d) my dr has had me on several different treatment plans for cronic fatigue. It seems no matter how much I sleep I am always tired. I can get a full nights sleep and then some and be tired, I can get just 6 hrs and be tired. Nothing seems to work. Did a sleep clinic and I don't have sleep apnea or any sleeping disorders except some times insomnia that keeps me from getting a restful sleep.
                          and e) I live in an upstairs apartment. I only have 15 stairs to go up and those 15 stairs kick my butt. I walk every day for excersize a mile and a half. My asthma keeps me from being able to do anything more than that because of how severe the attacks get and the fact that my rescue inhaler does little to help them.

                          So after discussing all of this with my dr she agreed I definately needed to be tested. Its scary. The possibility. The not knowing. But I am a firm believer in knowledge being power and strength. I already learned this from also having a disease called PCOS since i was 14 years old. (gotta love all the medical acronyms huh??)

                          Having grown up with my dad being sick since he was in his early 30's I know whats in store..... from the eyes of a child who had a sick parent with this disease and it is one of the biggest reasons I wanted to be tested. So I knew... and could be prepared for what may be to come.

                          I guess the biggest thing is I am confused, muddled and scared. Frightened of the unknown but still I feel disassociated in a way. Like its just my aunt, my uncle.... was my dad.... it won't happen to me. I'm only 26. I don't have to worry about this.... when in reality, I know differently.

                          Anyways, I'm going to stop rambling now. Thanks for listening/reading.
                          "Anyone who says sunshine brings happiness has never danced in the rain."

                          Comment


                          • #43
                            Re: My Dad

                            Hi Sarahmarie. I copied your post to a new thread in the "Hello, my name is...." forum so you wouldn't have to retype all your information. Welcome to the HCMA and good luck on your echo next week.
                            Reenie

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

                            Comment


                            • #44
                              Re: The person in my life that has HCM is ...

                              I was diagnosed with HCM in 2001. My father died of what my cardiologist believes was HCM at the age of 26. This was in 1952
                              so of course it was not diagnosed. I have a niece and nephew who refuse to be tested or have thier daughters tested. I have tried to get them to read the book I got when I joined HCMA. My nephew has gone to the emergency room in the past for rythm problems, but his family doctor has not even sent him to a cardiologist. Do any of you have any sugestions as to what I should do. My symptoms didn't start until I was older....so they don't understand the dangers. I have a four year old granddaughter. I have asked her mother to be sure to tell her dr about my HCM. At what age should she be tested if she has no symptoms?
                              Sassy Deborah
                              Diagnosed with HCM 2001 at age 52
                              ICD implanted December 3, 2005
                              Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
                              Myectomy performed at Cleveland Clinic Dec. 3,2008
                              Father died at 26 (1952) suspected HCM

                              Comment


                              • #45
                                Me and my Daughter!!!

                                Until last week i was the only one in my family with HCM, now it appears that my daughter Brianna age 13 also has HCM. I was hoping that day would never come, but here it is. Her life has been turned upside down, going from playing 2 different soccer leagues to being a couch potatoe for the next six months, while the doctors rule out an athletic heart. She has been a trooper so far, a little quieter than usual and very upset she can not get her heart rate up. My wife and I are probably taking it harder.

                                Now begins our journey to ensure she gets the right care to keep her safe. Genetic testing for both of my children next week, it has taken two years to get the insurance to cover this.

                                The bad news is that Brianna probably has HCM, the good news is that we KNOW she probably has HCM.

                                R. Craig S
                                Diagnosed with HCM March 1997
                                AICD April 2005
                                Last edited by swensonrc; 03-31-2010, 10:59 PM.

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