If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Heart Defect

Collapse

About the Author

Collapse

cooksnj Find out more about cooksnj
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Heart Defect

    I saw a commercial recently by the AHA that had some kids on there talking about how they had a "Heart Defect" instead of heart disease. I think thats great. I have told many people about my heart condition, and I allways here the same things. Cut down on greassy foods, walk, eat more vegatables. I wish I had a dollar everytime I've had to explain that my condition has nothing to do with clogged artieries, or high cloestrol. I wonder why doctors started calling clogged arteries, and high cloestrol heart diease. I could fix those problems, but HCM is different. Watching what I eat has no impact on this defect what so ever. Everyone should eat less and better quality foods, not just heart diease patientces. Any way just wanted to see if any one else saw that commercial. I think from now on I will refer to my heart condition as a "heart defect", it'll be easier to explain.
    \"When I\'m gone and people think of me... I want them to smile and laugh.\" Jason Caldwell

  • #2
    Re: Heart Defect

    I have HCM, I’ve had four heart caths and stentings so far, and I’ve had both renal arteries angioplastied and stented, - and both iliac arteries as well. I’m cardiac, diabetic, renal, and have familial hyperlipidemia. I have significant stenosis throughout my body - especially in my legs - making walking difficult, and the bottom portion of my right kidney is so clogged up it has stopped working.

    You think you have problems with people telling you what to eat? I have been told by various specialists to avoid proteins, carbohydrates and fats (there is nothing else) – and I should eat small meals every four hours to avoid having my blood sugar level bounce up and down too much. I was so confused I made an appointment with a special dietitian to work out compromises on what I could and should eat, and when.

    I then went to my (fourth) nephrologist who gave me a long lecture telling me to ignore what my dietitian told me (he doesn’t trust dietitians) and to follow the diet that he forced on me – which just covered my renal condition. I dutifully carried it home – and threw it in the garbage. It seems every one of my specialists has his own pet diet he or she wants me to be on – to the exclusion of, and in contradiction to, every other doctor’s diet.

    I take my wife with me to all my doctors’ appointments. She is now so concerned about me and confused about my diet that she complains about everything I put in my mouth, every time I eat – even the stuff she cooked for me herself. Then of course every person I know is a specialist on what I should and should not eat, and is more then ready to tell me exactly what is what - according to their lack of understanding.

    I’m sorry to have rambled on like this, but my goodness, now I feel just great. I should have unloaded long ago. Listen all you nice folks out there, I know what you’re going through with all that unsolicited dietary advice. All you can do is know it’s because people care about you, and let the advice just roll quietly off your back. OK, now let’s go out and get something to eat.
    Burt

    Comment


    • #3
      Re: Heart Defect

      dear burt

      sounds like ensure and pedialyte for you!

      good luck!

      Comment


      • #4
        Re: Heart Defect

        Burton,
        I have high chlosterol and have been to naturopaths, dieticians, nutritionists and of course regular MD's. I have had the uncommon problem of significant weight loss and have tried to gain weight. It is so confusing - vegitarian(can't gain weight), hi protein/fat(chlosterol goes up), fresh fruits and veggies(sprayed with pesticides), fish(mercury), organic(expensive and hard to find). It's so frustrating!!!!!
        Chuck B

        An inch is a cinch, a yard is hard

        Comment


        • #5
          Re: Heart Defect

          Saw my nephrologist again, and according to him vegetables are not in the carbohydrate, protein or fat food groups, but fall into a fourth food group known as ‘water.’ Also, he’s very down on salt. I haven’t touched a salt shaker in over twenty years, but I still got that good old lecture about going to a restaurant and having my food specially prepared for me with no salt. Also, we should never buy anything in the supermarket that has any salt content listed in the ingredients. Try it sometime – there’s ice, some waters, and little else. There are “no salt added” foods, but no salt at all? Sometimes he’s downright scary.

          Next, did you ever go to a regular restaurant and order specially prepared food? They don’t laugh. They get a pained expression and say, “I’m sorry, we don’t make special meals here. You have to select from what’s on the menu.” Even in the hospital I couldn’t get the exactly proper foods for my diet. Thankfully I don’t have to see my nephrologist again for four months. I guess there’s a bright side to everything.
          Burt

          Comment


          • #6
            Re: Heart Defect

            cooksnj,

            I couldn't agree with you more! I started refering to my HCM as a 'genetic heart defect' some time ago. And to the people who i really know i'm going to have a problem with, i will go as far as to say 'I was simply born with a defective heart', which is not altogether untrue. I don't even go NEAR the term 'obstruction' anymore, unless it's with doctors or fellow HCM'ers. That word just screams coronary artery disease.

            I just get so tired of having to explain myself over and over again to the same people, i'm about ready to start carrying around pamphlets. It would be one thing if i at least felt like every one of these people were genuinely concerned, but unfortunately you run into a lot of 'curbside doctors' and nosey people who want nothing more than to hear bad news and spread gossip and misinformation.

            People are always so shocked to hear that my blood pressure is in fact very good, if not even a bit low, my cholesterol when last checked was only 160, and my arteries are clean as a whistle. Sometimes that doesn't even do the trick. I often get this distrusting look from people like i'm lying to them or something to try and cover up my little 'secret' bad habits.

            AAAAAAARGH!!!

            Wow, that felt good

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

            Comment


            • #7
              Re: Heart Defect

              Hey Jim,
              If they ask, I tell people, “I have Hypertrophic Cardiomyopathy” and stop there. I just let it roll off my tongue. Since they usually can’t even repeat it, the conversation tends to die there. Sometimes one will say to another, “He’s got this heart condition with a big long name,” but that’s about it. I find myself smiling inwardly at how quickly the silence is filled with another topic. Try it – It’s a gas.
              Burt

              Comment


              • #8
                Re: Heart Defect

                When I tell people what I have if its not my medical friends I just say I have a genetic heart condition. The lay people tend to realize it's a bit different. I may also have the whole age thing on my side too. I always get your too young to have a heart condition.

                It's only the idiotic doctors who give me a hard time. My total cholesterol is a whopping 107 so no problems there either!

                mary S.

                Comment


                • #9
                  Re: Heart Defect

                  "heart defects" are not heart diseases. They are refering to structural abnormalities that are repairable in most cases. Such as VSD's (ventricular septal defects) and similar conditions.
                  HCM is a disease process. While I agree the terms do not seem to fit us well "heart defects" do not explain the condition either.

                  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


                  • #10
                    Re: Heart Defect

                    I agree Lisa... but using the term 'heart defect' sure shuts people up a lot quicker.

                    Disease: A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.

                    I guess maybe technically we have a disease that results from a genetic defect? Both terms are not wrong, but neither is exactly right?

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

                    Comment


                    • #11
                      Re: Heart Defect

                      My wife Sandy was disappointed yesterday that I didn't jump into this discussion.
                      I use the term "Genetic Heart Condition".
                      When I had to explain the situation at work before I left for my Myectomy, I clearly stated that my cholesterol was at 160, and I had no blockages whatsoever.
                      I hate being lumped into the same category as smokers and people who have no control over their diets. And that includes my own parents who both had Cardio-Vascular disease (poor diets, but they didn't smoke).
                      During my recovery at the hospital, I had to attend a couple of sessions explaining the best procedures for recovery at home. Of course the other attendees took one look at me and asked "How Many?” thinking I was there like them for Bypass surgery. I very coldly said zero, and that I had a rare genetic heart condition.
                      But this is all part of our responsibility as people with HCM, to educate the public. Given time and effort, we should make great strides over the next few years in making people aware of what HCM is (including the CWC"s...Cardiologists without a clue).
                      Fx

                      Comment


                      • #12
                        Re: Heart Defect

                        Hi,

                        I have a poster from HCMA showing HOCM trying to explain my husband's condition and people have a confused look on their faces and still talk about diet and exercise and blocked arteries. So far my husband is the only one in his family (10 children) that has had symptoms. His siblings have not been convinced they need to be screened. Their dad died at age 66 from cardiac failure due to hypertrophy. This is on his death certificate and my sister in law says "Hmm, I never knew dad had heart trouble. I wonder what mom's copy of dad's death certificate says." I told her they say the very same thing. Last fall my husband had alcohol ablation and now his family thinks the heart disease has been 'fixed'. UGH! Frustrating!!

                        That felt good.

                        Paula

                        Comment


                        • #13
                          Re: Heart Defect

                          I always just say that my husband has a heart condition. Unless they ask I don't go into any details. If they do ask, I simply tell them that his septum is 3 times thicker than a normal heart. (Really closer to 4 but who's counting? hehe) I've never had anyone ~ yet ~ spout off about diet, cholesterol, etc. I hope they don't.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            Re: Heart Defect

                            How about this, Reenie , I said the same in reference to septum and had cocked heads looking at me saying "wow I did not know that a nose problem could be tied in with a heart problem, I wonder how big my septum is, I have trouble breathing, maybe I have that disease." I just laugh to myself as I shake my head. But what the heck I live in an area where a news reporter recently said an artistic child fell in the river and drowned! LOL. 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

                            Comment


                            • #15
                              Re: Heart Defect

                              Originally posted by felixdacat

                              When I had to explain the situation at work before I left for my Myectomy, I clearly stated that my cholesterol was at 160, and I had no blockages whatsoever.
                              Felix do you find that, even with this information, some people just don't 'buy' it? I'm about ready to start carrying around my latest bloodwork and echo results with me everywhere i go. Sometimes i just feel like saying 'none of your business' to these people, but then God only knows what they'd come up with in their own minds. But there are times, like at Thanksgiving, when i get that look from across the table as i'm picking up the gravy boat or salt shaker, that i just want to start flinging food!
                              "Some days you're the dog... some days you're the hydrant."

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X