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


No announcement yet.

What do you tell your friends?


About the Author


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

  • What do you tell your friends?

    At this point I think most of my casual friends know I have some type of heart issue, but most do not know any of the details. Some know I have something implanted in my chest, but they tend to think it is a pacemaker. Some know I have had some "issues" but the general story might be that I have had a "heart attack."

    To be honest, I really do not want to dump any drama on anyone, nor do I see the benefits of a graphic description of my condition or the symptoms and experiences (my favorite question - "Did you see the white light?").

    How do you handle it? Who do you tell? What details do you share?

  • #2
    Re: What do you tell your friends?

    UGH...it's the worst, isn't it ?! Especially if you are out and they insist on buying you a drink. You say.."Nah, but thanks, I don't drink." then it's a game of 20 questions......such a pain. Then they tell you that "Wine is good for your heart"....ugh.........then i simply say it's an electrical problem and any booze is not good. Finally I just say Im the DD.
    Most of my friends know . We live in a small town. Maybe 30,000 in our entire county. Word travels fast.



    • #3
      Re: What do you tell your friends?

      I treat them like children - answer just what they ask as honestly as possible without going into details.

      I recently had an ASA but I just tell those that ask that it was surgery because that is what they understand and I do not have to explain the procedure to them.

      If they want to think that an ICD is a pacemaker so what? -- really doesn't make a difference. And John, when they ask if you saw the white light tell them no, it was the "red light" district.


      • #4
        Re: What do you tell your friends?

        Hi John,
        With most people assuming that I have the common heart deseases that they know about , with questions like "are you watching your colesteral now?" or "now are you trying to lose weight?" and making me feel like I brought this upon myself with lifestyle or diet, I have no proplem with educating them to the fact that this is genetic. Being in need of a transplant it's hard not to sound dramatic or dire,so (when I see the look on their faces) I soften it with a smile explaining the support I get and great and proper medical care I'm receiving for my HCM, most people are interested and supportive. I don't care to much for sympathy but empathy is fine. Humor is the best way to make someone at ease with you and your desease, I have enough silly or stupid stories associated my treatment that after I tell them the 'heavy' I make it light with laughter. It tells them that you're in control and that you're doing ok. This works for me

        John F.
        Last edited by maztbo; 12-07-2010, 02:36 PM.
        had HCM since birth
        'enlarged heart' identified in 96'
        HOCM dx in 7/08
        Myectomy 8/09
        extended Myectomy 5/10
        'End stage' HCM dx 8/10
        CRT-D implanted 9/10
        evaluated for Transplant 11/10
        Listed for transplant 6/11


        • #5
          Re: What do you tell your friends?

          My friends know my situation. Those who have any questions, I answer the question. I tell them that I have a genetic heart disease of the heart muscle and not "garden variety" heart disease of the coronary arteries. Works for me. I've never been asked the white light question, but I have been to the red light district in Amsterdam.........as a tourist.
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08


          • #6
            Re: What do you tell your friends?

            I've answered those questions so many times - "No, I don't have stents like your Uncle Arnie; No - my arteries are clearer than a 13 year old girl; My cholesterol is really none of your busy, but since your He**-bent on knowing, its normal".
            I just say its a genetic disorder that affects both the Muscle and the electrical system. If they pry further I use the opportunity to educate them (briefly). Some of my co-workers know I have a heart-thingy and some think its low BP. As I look at it, if they ask, I tell - and I dole out the answer that best suits the situation. If their techincal & like details, I give them that. Otherwise, I keep it light.
            Diagnosed @ 48
            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
            AICD - Valentines Day '08, Spark Plug replaced 11/14
            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
            Quietly going insane . . .


            • #7
              Re: What do you tell your friends?

              I'm sort of like Frosty here. Straight answers, but I try not to give too much information, because then people's eyes glaze over. Yes, it's annoying when people assume that you brought it on yourself by eating too many pork rinds, or that you're so frail you might die in the middle of the conversation, or that obviously nothing's really wrong, but . . . there's not really a lot you can do if people want to stick with their preconceptions.

              Myectomy on Feb. 5, 2007.


              • #8
                Re: What do you tell your friends?

                Though it is not technically accurate, I usually just tell folks that I have a congenital heart defect, and that tends to circumvent any discussion of CAD or cholesterol or bypass surgery. The word 'disease' almost always causes folks to assume that this is something we did to ourselves. It's a slight fib I guess, but it avoids all manner of unpleasant conversation and when you think about it, the cellular disarray that causes HCM is in fact a structural defect. That's my story anyway.
                Last edited by mtlieb; 12-07-2010, 06:01 PM.
                "Some days you're the dog... some days you're the hydrant."


                • #9
                  Re: What do you tell your friends?

                  I tell my friends I have HCM, that it's a genetic heart condition I got from my mom who got it from her dad. They all know I have an ICD. I actually don't keep anything a secret from them...I tell them all about HCM and educate them as much as possible. They ask me questions, I answer honestly what I know about HCM. It's been a great teaching opportunity for me to tell people as much as I can about my condition. So many people now know about HCM that didn't before and I love that.

                  My friends also know that I don't take myself too seriously and we often joke about me having a heart condition/my ICD, etc...because laughing is what gets me through just about everything, but they all know that it can be serious and can cause serious problems in some people.



                  • #10
                    Re: What do you tell your friends?


                    I tell people that I have a genetic heart problem called Hypertrophic Obstructed Cardiomyopathy. My heart is thicker then it should be and this creates an electrical problem as well as a blood flow problem. I had a myectomy where the surgeon went inside the left atrium cut out some excess tissue that was giving me difficulties. I now have Hypertrophic Cardiomyopathy, I still have a thick heart but I feel a lot better. My prognosis is pretty good. Want to see my scar?

                    (Usually people see the scar and assume I had bypass surgery so that brings on the questions.)

                    So what is up with you?

                    Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!


                    • #11
                      Re: What do you tell your friends?

                      I tell people the truth ... I have a genetic heart disease ... give them the long name and then the abreviation People notice my scar out in public (it's been 5 yrs. since my myectomy) and will ask. That used to drive me crazy but now I view it as an awesome opportunity to educate AND tell a totally cool story about my journey with HOCM.

                      I will admit that if someone assumes I've had bypass surgery ... I get bugged by that. One of my pet peves.
                      Happy wife and mother of four
                      Diagnosed wit HOCM in September 2005
                      Myectomy at Mayo Clinic November 7, 2005
                      Pacemaker August 24, 2011


                      • #12
                        Re: What do you tell your friends?

                        I concur with the education point of view from the writers before me.

                        I usually point out that many of those seemingly healthy high school and college athletes who we often read about dying on the court or on the field most likely had HCM and didn't know it. I don't tell them this for sympathy but to educate them on the seriousness of the disease.

                        I always mention that if they know any parents with high school or college athletes that they ought to educate themselves about HCM and talk to their family doctor about it. Hoping somebody tells somebody else and one more athlete gets tested from my efforts.

                        Toodle pip... Moosedreams
                        Diagnosed HCM Nov 2009
                        100 mg Atenolol; Baby asprin
                        First Trip to CCF June 2010
                        HCM Specialist at CCF... Dr. Harry Lever
                        Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
                        AICD w/pacer at CCF... December 20th 2010

                        Once you choose hope, anything's possible. ~ Christopher Reeve

                        Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125



                        • #13
                          Re: What do you tell your friends?

                          I have to agree with just about everyone else on here - I try to answer as honestly as I can.
                          I too do what Moosedreams does regarding the athletes. I guess about 15 years ago now, there were numerous young, basketball players, who died from this spontaneously - most people remember hearing about that, so it's the easiest way to define it first.

                          My closest friends know exactly what I have and what my limitations are.
                          I am anxiously awaiting my appointment at Mayo (Dec 22) to hopefully get some news about having a myectomy/mitral valve replacement in the very near future. Unfortunately, now my friends and family watch me like a hawk. I very rarely go out by myself, which is good, because now my friends explain what I have, so I don't have to.

                          I get the cholesterol question too - my cholesterol is in the low/normal range, and my arteries are wide open - but until educated, people still think that it's something that I brought upon myself.

                          I think that is why I'm so open about explaining it.

                          While it scares me, I'm hoping to have a myectomy scar too, which will allow me to educate even more people.

                          Diagnosed with HOCM 11/03
                          A-Fib 4/09
                          Ramipril 2.5mg
                          Baby Aspirin

                          Myectomy 1/3/11 - Mayo Clinic - Dr. Schaff
                          Maze Procedure 1/3/11 - Mayo Clinic - Dr. Schaff

                          Mom to two crazy dogs


                          • #14
                            Re: What do you tell your friends?

                            I definitely agree with trying to educate as much as possible. If someone is genuinely interested in learning about HCM I'll go out of my way to explain it to them. Many of the new people I've encountered post-diagnosis are very sympathetic to my situation and once I get them past the dreaded 'coronary artery disease' conversation most are very open to learning about it. It's the folks who knew me before my diagnosis, when admittedly I did have many bad habits, who refuse to buy 'this whole HCM' thing. Even after eight years they think I am simply making excuses for my past behavior. I do find that discussing it as a septal defect gets past the snide remarks and accusatory tone... and if it opens a more constructive dialogue then I am more than happy to pursue that.
                            "Some days you're the dog... some days you're the hydrant."


                            • #15
                              Re: What do you tell your friends?

                              For a little while I was kind of a nerd for it - was learning a lot about it and wanted to share. But the result was awkward. Lately I have been not mentioning it unless it comes up as a problem. If they think I don't want to play Ultimate because I am a fat, lazy slob, that's better than being pitied.