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People in my life understand HCM

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Heart Disease

    "Heart Disease" has been and will continue to be used to describe Coronary Artery Disease. The two are so interconnected in the public mind, I really don't beileve they can ever be separated.

    I usually say "heart problem" or "bad heart" or "genetic heart defect" depnding on who I'm talking to and how much I expect to have to explain.

    I used to moderate a board at ivillage.com that was called Arrhythmias & Angina. Then they changed the name to Arrhythmias & Cardiomyopathy, then they proposed changing the name to Heart Disease (while also having a CAD board as well). I opposed this most strenously and they capitulated to Heart Problems. I quit moderating a few months later. It was clear that whoever the medical person who was supposedly in charge had no clue or no input or anything.

    Oh, yeah, and my mom (who has HCM) is the most unsympathetic of anyone.

    S

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    • #17


      Good lord, what was i saying!

      I meant to say 'now i just tell people i was born with a heart defect', not birth-defect! LOL. That's what i get for posting late at night. I do believe that by implying that it is a physical abnormality in the structure of the heart that i was born with, that people immediately seem to understand. I also give the example of the high school football player quite a bit as that also seems to drive the point home.

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

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      • #18
        "Heart Disease"

        I was thrilled when my husband went with me to the HCM specialist and I thought he really understood what was wrong. Then he attended a lecture by Dean Ornish and came back to say we were going on a special diet and I could be cured. I was so disappointed in his level of understanding---and angry too. Guess he gets it now!

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        • #19
          I was at a meeting 2 years ago and was seated with Dean Ornish... He told me that he felt that I would feel better on his plan...yet outright said that HCM was not able to be corrected by diet...I thought to myself..DUH! but was not about to say that to his face
          So during dinner he ate a plate full of veggies and I enjoyed my prime rib...I thought he was gonna toss his cookies watching everyone eat...it was kinda funny
          Thought you would find that funny too!
          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


          • #20
            Oh by the way...about Dean Ornish... I know he is this big diet guy that is selling tons of books and has a big following but to be very honest...up close they guy did not look well at all. His skin had a strange color, his eyes were dull and his did not look very happy. I do not know if I say him on a bad day...but I was not sold on the diet just by looking at him.

            With all due respect I am not a diet pro by any means.... but my husband and I really thought it odd that he looked so poorly.

            OH this dinner we were at was in Washington DC it was in the Senate building... and while we were there we also say "Josh Lyman" from West Wing...but he was just walking around and we took the elevator with him...he was very nice.

            Boy I am chatty tonight..

            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


            • #21
              Dean Ornish

              Wish I had seen him too to see just how healthy or unhealthy he looked. That's interesting. I'm impressed with the research he has done and I think he has helped a lot of people but it's the same old "heart disease is vascular disease."

              Then, of course, there is Dr. Atkins who shocked the world by having heart episode when he had promised that his diet (with the steak) would not give one heart disease. That took a lot of explaining that what he had was cardiomyopathy, not cardiovascular disease.

              I guess I should be glad I'm not famous and having people talk about me all the time!

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              • #22
                Funny thing about the Atkins diet...some very well known docs really think it is good... I still find the base concept a bit hard to take but I do know people it has worked for... BUt then again every diet out there has worked for someone...proving yet again we are all a bit different.
                Thinking back to Dr. Ornish..I can not help but think he was not well that night... I have seen him many times on TV and he never looked like he did that night..and I do not think TV make-up could change the things my husband and I noticed. sunken eyes, greenish tint to his skin and his eyes were so dull it is hard to explain...

                Anyway...back to the topic .. do your friends and family understand HCM?
                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


                • #23
                  I agree with Pat. There are some days that if one more person says but you don't look like your sick I may scream. My husband is probably the only person beside myself that really truly understands the ups and downs of this disease. Even now that I am on the heart transplant list, my thirty something kids say Oh Mom you will be fine. I think that is because I have always tried so hard to not let people know I was ill. Maybe I tried too hard. It is a crazy and frustrating disease. I sure do not want to look sick but I would like to be believed. Am glad for this board as we all know and understand.
                  Midge

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.

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                  • #24
                    how can i e mail you?

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                    • #25
                      You can email Lisa, President of HCMA, at [email protected]. I hope this helps you.

                      Reenie
                      Reenie

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

                      Comment


                      • #26
                        Re: People in my life understand HCM

                        I know that it's been a while since anything was posted to this topic, but I felt I had to reply. Alan constantly hears the same thing - there's nothing wrong with you - you look healthy. While at Disney World in February 2001, I got shin splints pushing Alan around in a wheel chair for three days (and I'd do it over and over again!!!) Anyway - Alan was so bad at that point that walking from the handicapped stalls in the parking lot to get to where they rented the wheel chairs left him stopping and gasping for breath. As we were leaving on the third day (walking out after having dropped off the wheel chair) a man behind us said very loudly to the woman he was with, "See, I told you he could walk. There's nothing wrong with him." I turned as Alan started to head back and grabbed his arm and just told him it wasn't worth it - people only understand what they want to understand.

                        Alan's mother was convinced that if he lost 20 pounds that he wouldn't need the defibrillator or the ablation.

                        A boss that was trying to fire me - who thank God didn't get re-elected - said to me that he "saw Alan last night, he looked so well that there couldn't be anything wrong with him". I was rude - you'd have to know the guy - and said that his daughter looked terrific last time I saw her, too (she had just gotten out of a psych ward for bulemia).

                        I guess the fact that you can't see it can be a mixed blessing!!

                        Love to all and thanks for the great support

                        Ange

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                        • #27
                          Re: People in my life understand HCM

                          Well, I guess this thread is open again, so I might just as well vent here. I’m not as lucky as some of the people who have posted here, in that I also have familial hyperlipidemia which clogs the **** out of my arteries. I’ve had four heart cath’s so far, had my renal arteries and my iliac arteries cath’ d, half my right kidney doesn’t work anymore, etc., etc. I also have run-away diabetes and a few other unpleasantries – but I look great. At one point or another I’ve been told by doctors to avoid every food there is, but also to eat every four hours. Sometimes I’m ready to foam at the mouth and bite somebody.

                          Now my wife, whom I love, at the age of forty-five developed epilepsy that has ruined her career and only just recently been brought under slight control. One day she was following her doctor’s advice and letting her friends know of her condition in the event she had a seizure when with them. She still gets riled when she remembers a friends innocent remark, “Gee, You look normal.”

                          Well, this wonderful girl who has been to every doctor’s appointment with me, and more or less read all the material I printed off the computer for her, and heard my multiple explanations of my conditions, will still go off on me. She will complain to a friend, in my presence, about how I won’t go out and walk with her. When I say I can’t, she say’s “Only walk a little bit. When you build yourself up you can walk more.” Our friend, who doesn’t know HCM from BVD sides with her, and I sit there with my eyes crossed.

                          Or if I get sudden SOB, or my chest tightens up, she’ll say things like, “You ate too much,” “You didn’t eat soon enough,” “You skipped breakfast – didn’t you!” and other words to that effect. If I had the breath I could scream – but I love her, so what can I do? She knows about disabilities, and she knows about my conditions, but sometimes you just can’t fight a lifetime of conditioning. It’s a knee jerk reaction, and knowledge has nothing to do with it. - - - Love does strange things sometimes.

                          OK, the vent is closed now. Thanks for letting me give off some steam.
                          Burt

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                          • #28
                            Re: People in my life understand HCM

                            Hi
                            I see this is venting time and I think I need to vent somewhere. Since before we married, my husband and I had an agreement that we both worked and would share the household responsibilities (he washes dishes and runs the vacuum cleaner). My husband recently had a complete shoulder replacement and was limited to his activities. I understood and took over the duties I had plus his and more. My husband knows when I am stressed it is very hard on my heart. Even with this knowledge, he will knit pick to the point where I had a horrible time breathing and could hardly talk, but during his recovery I understood and made his recovery easier. I work a full time job 8-5, and I would go to work, come home and make dinner, clean up, do the dishes, and finally sit down. When 9:00 came around, I was worn out. It has been 6 weeks since his surgery. When I received a phone call that my daughter needed emergency surgery I took into consideration how he was doing and had food ready in the freezer so he didn't have to cook, got paper plates so he didn't have many dishes and decided to fly to PA to help her. His family lives in the the same town as we do so I knew if he needed help all he had to do was call. When I came home I noticed a sink full of dishes in the dish drainer that had been washed. I didn't say anything and followed the same routine prior to flying to Pennsylvania. This went on for about a week. I finally said to him that I noticed he could take care of himself well and asked when he was going to return washing dishes. He said that sometimes when he does them he felt a lot of pain....then laughed. I said, "really?" He laughed even harder and longer. I then told hime I thought he was able to help me by at least washing dishes and stressed that I wouldn't do them when he was capable. I think what bothers me the most is arguing with me and I feel breathless. I am always afraid that I will go straight lined (like I had in the past - 5 times). He is a good man, big heart and I love him very much, but he doesn't understand the problems that I have at times even though he goes to the Mayo Clinic with me for every visit.

                            My venting time is over...... Thanks for allowing me to let go!
                            Esther

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                            • #29
                              Re: People in my life understand HCM

                              Since I started the venting, I'll continue - so many things have been popping into my head since I'm new to the message board am am so glad to know that other people are going through what we are. Words from:

                              One ER doc: How do you know he can't take nitro - let's try it and see what happens...

                              Another ER doc: His condition doesn't cause chest pain and his EKG is fine, there's nothing wrong with him...

                              My own sister (a former nurses' aid and now a dietician): What do you mean he's not on a special cardiac diet?? There can't be anything wrong with him if he's not on a special diet. I thought Dad told me he was sick (this within 2 months of the ICD implantation, the alcohol ablation and being overdosed on morphine).


                              Oh well, thanks for listening

                              Ange

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                              • #30
                                Re: People in my life understand HCM

                                Here we go: "There, there, now ( cardiologist patting my leg). There's nothing wrong with your heart , you don't have that disease you think you have . It is very rare. You have a very hyperdynamic heart . All we have to do is get you working harder , get your weight down -100 lbs "( I gained the 100lbs as I became sicker over 5 years under his care and guidance. ) "You'll be fine and oh this must have recently happened , so don't worry. "
                                After I sought an opinion from real cardiologists: "Well I still don't believe this what you have , why would you let them put a big metal devise in you . If your heart is as sick as they say it is then what is a defibrilator going to do ? It won't keep your heart alive! There is no way to tell you have HCM , they would have to check your genes and they don't do gene testing yet for HCM. What do you mean they say you can't work? What are you going to do sit around and do nothing for the rest of your life?You're only 47."
                                After my real cardiologist sent him yet another letter:" Well if this is how they are going to do it ,I quess I'll do what I can to help." He sent out my paper work poorly documented and late. I was denied disability 3 times because of his documentation . He was my cardiologist for 18 years,. I went to Federal court with the help of my congressman and with all new paper work from the docs I was then seeing . The witness cardiologist FOR the Federal govt. said, " we should not be here, she should not be here ,she is worse then the criteria we are debating over." Judge said "dismissed , disability retroactive to the date the disease was diagnosed." ahemmmm ( by a real cardiologist.)
                                FyI this original cardiologist of 18 years said that after I have my devise put in he would do the interrogations and there would be no need to go into the big city to have it monitored. WELL **** NO!! He never saw me again because I bid him farewell .
                                I have many bizarre stories about general non undersanding individuals, the most out ragious was my son's former girlfriends mother who said while doing a cancer walkathon she revealed to someone(just happened to be a close cousin who was very understanding and an advocate for me) she told my cousin that I was a hyperchondriac!That did not set well with my cousin. So these were a few of my most memmorable "people not understanding. " 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

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