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Wish I didnt know.

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  • Wish I didnt know.

    I was trucking along just fine with my life without knowing about my HCM I just thought I had a heart murmor!! Now I am fighting insurance companies, noticing that things I've always thought was normal are symptoms, and stressed beyond all belief. There are no HCM clinics in my state!!!
    I wish I had NEVER had that stupid echo done. My mom was 62 before having any HCM related problems, I could handle this at 62. Im really having issues at 30.
    We were trying to have another baby now I dont know whether to or not. I am terrified my 2 year old son will get stuck with his mom's screwed up heart.
    Am I just weird or have any of you guys ever felt this way.
    2.6 Septal Measurement
    ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
    "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
    ~Steel Magnolia's~

  • #2
    Re: Wish I didnt know.

    Gayle,

    You have no idea how absolutely normal you are... at least here among your fellow HCM'ers! I was diagnosed officially about a year and a half ago, and it just blew me away when i started realizing all the little things that i thought were perfectly normal, but were actually HCM-related.

    I thought most people had heart murmurs.

    I thought everyone's heart pounded like mine when they drank alcohol.

    I always got winded so fast, even in highschool, but figured I was just one of those people who wasn't good at sports.

    Twenty years ago, when a girlfriend layed her head on my chest and said 'my god you've got a loud heart'... i thought it was a good thing!

    I always thought it was perfectly normal to be able to hear your heart beating in your head. LoL.

    I thought everyone got a little dizzy when they lifted weights!

    The list goes on and on. Perhaps others will come along and share their own 'I thought it was normal...' stories. We've all got them. Trust me.

    Don't be sorry you found out you have HCM... be glad that you know now so you can do something about it! You're among friends here, so please feel free to post any questions or concerns you ever have. We're a pretty nice bunch

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

    Comment


    • #3
      Re: Wish I didnt know.

      Yep, sounds familiar!

      For me it was more like I beat myself up for everything. When I was your age and quite thin, I assumed that chest pain when I jogged was because I was out of shape. I was a bit puzzled by the fact that it got worse instead of better when I tried harder, but still figured I was out of shape.

      When I got older and fatter, shortness of breath, pain, and inability to increase my fitness were easily explainable as "fat and lazy."

      I am nearer to your mother's age at diagnosis - 56 - and diagnosed in the past year. Would it have been better to have known all those years? Hard to say, since I didn't live that life, but I suspect that it would have been easier than blaming myself and also safer and healthier. I certainly understand your fears for your son, but truthfully, we all give our children lots of things we wish later we hadn't and never intended to in the first place - fears, bad habits, etc. - so HCM is no worse than the rest, and is a LOT less our fault.

      I hope this helps a bit.

      Rhoda

      Comment


      • #4
        Re: Wish I didnt know.

        I sure do agree with Jim and Rhoda in their replys. Sometimes when I hear others desribe their lives and symptoms prior to HCM diagnosis I feel like we are a bunch of clones. We all cross over in so many areas of our disease similarities and at least at this age 50 I don't feel like I did not fit because I was a misfit ,it was because of a genetic heart disease that I was struggling with . About knowing I have HCM well if it means that I no longer beat myself emotionally because I am different well that's a good thing and bigger then that, if my family members know that they have the potential for HCM then maybe knowing will lead to one less death in my family as a result of the knowledge. It is very tough when the diagnosis first comes give your feelings time to settle in with your intellect. Another words give yourself time to wrap your mind around this. Best Wishes. 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


        • #5
          Re: Wish I didnt know.

          Hi, I know exactly how you feel, I was diagnosed 6 yrs ago and wasn't told a whole lot about hcm. I spent several yrs trying to forget that I had it. It has added so much stress to my life. On top of it I worry about my kids developing it-and I feel so guilty. I don't know about your specific situation but my husband and I decided to have another baby(he's 4 now) and everything went 'normal'. The only difference was I had a whole crew of Dr's and interns crowding me the whole time I was in labor.
          It is a constant daily struggle and I imagine the older I get the less intrusive it will seem(to me), right now though while my friends are living it up, I am taking it easy, I make a good companion for my grandmother(we both have about the same amount of stamina)

          You are not alone in this,
          Take care
          Pam
          It's not what you gather, but what you scatter that tells what kind of life you have lived.

          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

          Comment


          • #6
            Re: Wish I didnt know.

            Pam ,you made me laugh ,I'm sorry but you did . My mother gets mistaken for my friend or sister a lot. Once we accidentally wore the same style of shirt and several people at my hospital appointment thought it was cute that "2 friends would dress alike!" I used to get mad inside now I laugh. WHat can we do? My kids said I should not leave my hair natural but it is a very pretty whitish silver ; totally . My mom still has a lot of black in her hair. You are right my friends are living it up at 50 too ; traveling getting boyfriends off the internet etc. etc. ( some of the divorced ones are already getting remarried for the second or third time ). Hmmm Who would I rather be. Sorry but some of the messes they have created for themselves , I guess hanging out with your grandmother and my mother does not sound so bad. Besides, I don't have the energy to get in that much trouble. I know it is still hard at 50, I cry sometimes about being the only one in my family who has such a limited lifestyle. The myectomy has not changed that, I guess I was hoping for a new life style after. HCM has many downsides and they are hard to accept . Feeling and acting like an 80 year old is hard . I may have to up that # because my mom who is 75 and many 80 year olds I know can and do more then I can. At least here we have the support of each other through this. Hang in there and for this, trying not to think about it so much helps. Too bad we don't live near to each other we could all develope other talents that don't require so much of us and form some talent co-op. Oh just me fantisizing a little. But a shop could emerge and if they were quality things that people made we could have a "all proceeds go to the HCMA section." Well I think I need to go wake up more now. Be well . 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


            • #7
              Re: Wish I didnt know.

              I have been fortunate that I have not had any problems associated with my insurance company.

              My five year old has a slightly enlarged heart but no HCM diagnosis yet. My lovely bride and I are concerned about it, but decided its not worth agonizing over.

              Hope you find peace.


              Cappy

              Comment


              • #8
                Re: Wish I didnt know.

                Thanks everyone. I appreciate everyone's input. Its nice to know I am not the only one who has felt this way. It is just very hard to deal with something that alters the entire way you see your life. I am going to an HCM specialist this week (even without the help of insurance) so I will know alot more about my condition after that. Knowing will help. My last cardiologist dumped this on me over the phone, told me very little about it, and made a follow up appointment over a month later (needless to say I didnt feel the need to go back to him).
                It is great to hear from others who understand. Thank you very much.
                Gayle
                2.6 Septal Measurement
                ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                ~Steel Magnolia's~

                Comment


                • #9
                  Re: Wish I didnt know.

                  Hi Gayle,
                  Imagine how I felt when I found out I could never personally have any children - - my wife had to have them all. Actually I was ecstatic, but I’m so very glad we got together and had a couple. My daughter had twins, and I’m thrilled with them too. With the use of normal common sense, the great preponderance of us HCM’ers die of old age. Please don’t deny yourselves the joy of another child – or the child his or her life.

                  What you do need to do is to get a good cardiologist who is up on HCM (if you don’t already) and have him/her recommend a good high risk gynecologist who knows about HCM too. Together they should advise you properly, and see you safely through your pregnancy.

                  In closing let me suggest that if you randomly asked one hundred of us HCM’ers if they were glad they were born – how many do you think would answer yes?
                  Burt

                  Comment


                  • #10
                    Re: Wish I didnt know.

                    Gayle,
                    I am glad you have found the comments of others so helpful. I can honestly say that everything you are feeling I have heard from about 75% or more of those calling the HCMA.

                    Good luck with your appointment and let us know how you make out.

                    Best wishes,
                    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


                    • #11
                      Re: Wish I didnt know.

                      Hello and Good Morning To everyone

                      Information is the key here. HCM is not a death sentence. Find yourself the right Cardiologist that your comfortable going to and asking lots of questions. The more information you have, the better off you will be.
                      This is the place to get such information, I found this website very helpful. Good luck to you.
                      Marlene

                      Comment


                      • #12
                        Re: Wish I didnt know.

                        Hi Gayle
                        I felt the same way you did when I found out at 27. I'm 34 now and I just had an alcohol ablation in April. I never thought I was bad enough to have that done. I was basically living with symptons I didn't realize I had. I was adopted and when I asked my birth mother if it ran in the family she said no when in fact they all have one kind or another heart problem. They won't get tested and I don't know my birth father so...who knows! My two kids are MY LIFE and I pray every night that they won't get this "stupid disease". I know it's easier said then done but having this problem is better to me than having aids or cancer. If I had to choose something, this one's ok. We probably will outlive a lot of people and technology has improved tremendously. Look at me! 20 years ago I would have had NO CHOICE about Myectomy or ablation. Imagine what another 20 years will bring!
                        Take care and talk to people here about your feelings like you do. Mostly everyone here knows someone or has it themselves so we have all felt like you at one time or another. It will get better...I PROMISE....
                        Tammy

                        Comment


                        • #13
                          Re: Wish I didnt know.

                          Hi Gayle
                          It is normal to have negative thoughts. At the age of 20, I was told without surgery I wouldn't live long. After surgery I was told I wouldn't live to see 50....Imagine that...I am almost 52!!!!
                          With the latest technology and knowledge the doctors, etc...can do miracles!
                          Esther
                          (Minnesota)
                          Esther

                          Comment


                          • #14
                            Re: Wish I didnt know.

                            Gayle, Hang in there!! I'm 17, will finish my Junior year of high school tomorrow. I am "genetically positive" for the gene that causes HCM in my family. Duke Medical Center checks me out thoroughly every June and so far, no symptoms!. But I know that sometime in my future, HCM will rear it's ugly head. Out of 25 family members covering 5 generations, 16 of us are "positive". We have several members of the family with no symptoms yet, 4 with pacemakers/defibrillators, and one who recently had surgery. My great grandmother lived to be 82 and my grandmother is now 76 years young. She and my mother know that the heat bothers them and that they have to take things a little slower than usual. I play softball and Mother tries not to miss a game but I know the heat in NC bothers her. You have a good excuse to be lazy.
                            She and I are going to the HCM seminar June 4-6 in New Jersey. It's a great place to meet with people who are experiencing the same things you are going through and there will be some great speakers there.
                            Your lack of insurance stinks! My dad had to find work that included group insurance so Mother would be covered with medical insurance. They are trying to get a life insurance policy for me and I was turned down. They are in the process of appealing that decision.
                            About children---Mother had 3 and got along fine with all of us. Find a good HCM doctor and a ob-gyn that specializes in high risk pregnancies. Together they will help you deliver a healthy baby.
                            Good luck and God Bless!

                            Cynthia Patterson

                            Comment


                            • #15
                              Re: Wish I didnt know.

                              Wow Cynthia! You are so well spoken (written) about HCM. All the knowledge you have gained through your family experiences are very valuable to people that are just learning about this condition. Your comments and suggestions are very good. I am so proud of all you have to offer everyone here on the board.

                              I look forward to seeing you and everyone at the HCMA Annual Meeting in June!

                              Blessings,
                              Sharon

                              Comment

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