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

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Harrybaby666 Find out more about Harrybaby666
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  • Hi There...I am New Here

    Hi There,

    I have been referred to this site from valvereplacement.com as I have issues with my valves also. I have been having chest pain and pressure, fatigue, shortness of breath when exerting myself such as climbing the stairs to my apartment. I have been under the care of a cardiologist who has told me that my heart is growing extra fibers which is thickening my walls. I have also been told that the front of my heart is not relaxing. I have been having a very hard time communicating with my cardiologist trying to get a straight answer out of him about what is actually wrong with me. So far, I have been doing research on the internet, and I have found that the term for what I have is Hypertrophic Cardiomyopathy (on the basis of what the doctor has told me). I am 37 years old and feel that maybe the doctor might be holding my age against me as far as spilling the beans about what I have wrong with me. I have also been having from time to time, shortness of breath when I am laying flat, and a horrible dry cough, and I have told the doctor this, but he seems to brush it off. Does anyone else here feel as they are in the same boat as me? I would love to hear from anyone who has this same problems. Thanks, Harrybaby666
    Striving for good health...LOL...that\'s a laugh!

  • #2
    Re: Hi There...I am New Here

    Harry, Welcome. The symptoms you are describing are not uncommon with HCM, but can occur with other conditions also. Your cardiologist should be able to give you a definitive diagnosis and treatment options. If he/she cannot, then it would certainly not be out of line to ask for a second opinion. Is your medical doctor involved? That may be the way to go. If you call our HCMA office in NJ, Kelly will be happy to send you a packet of info on HCM and set up a time for you to talk with Lisa. The key at this point would seem to be learning that diagnosis. Then you can research for info and treatment options. With the symptoms and your age, I would expect your cardiologist to want to move forward with a plan for relief. Best wishes, keep us posted. Linda

    Comment


    • #3
      Re: Hi There...I am New Here

      I just wanted to post the phone # for the HCMA office:
      973-983-7429

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Hi There...I am New Here

        Welcome!

        I will be in the office from 1-6 tomorrow if you want to give me a call and we can get you on track with HCM!

        I am in a rush so I will be brief - -I look forward to speaking to you soon!

        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


        • #5
          Re: Hi There...I am New Here

          Hi Lisa,
          I just want to thank you for your help in getting this matter straightened out. Unfortunately, tomorrow I will be in the hospital all day with kidney surgery and will be back on Friday...Would there be a specific time you would be on Friday as I really would like to discuss this with you so I can start feeling better. Thanks so much, and I hope to talk with you Friday or whenever you are in the office next. Harrybaby666
          Striving for good health...LOL...that\'s a laugh!

          Comment


          • #6
            Re: Hi There...I am New Here

            I will not be in the HCMA office on Friday but if you send me a private message with your phone number I will call you.
            Best wishes with your procedure!

            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


            • #7
              Re: Hi There...I am New Here

              The information you are getting from your cardiologist is similar to what I got from mine. You want to find someone who will tell you everything and give you a chance to learn about treatment options for yourself as well as from them.

              When I transferred to another cardiologist at my family's request I found I was a candidate for sudden death--based on the reports from the previous cardiologist that he hadn't explained to me. Having a defibrillator implanted saved my life the following year when I went into severe tachycardia.

              I'm not saying you are in the same condition as I was but that you need to be part of the information gathering and decision making team. Seems as if this is what you are trying to do. Good work and good luck!

              Sue

              Comment


              • #8
                Re: Hi There...I am New Here

                Hi Sue,

                Thanks for your reply. I am having such a hard time with my cardiologist that I am going to set up with a new cardiologist for a second opinion. The doctor that I have now seems to be back pedaling with the information that he has given me. I cannot afford to have this as my father is dying of heart failure right now. We don't know how much time he has, but if I can help it, I am not going to wait until it's too late to find out. Thanks for your help, and take care. Harrybaby666
                Striving for good health...LOL...that\'s a laugh!

                Comment


                • #9
                  Re: Hi There...I am New Here

                  I,m really sorry to hear about your dad, my dad just got out of the hospital because of his CHF, he had fluid on his stomach and chest they admited him because of his age and the fact he has had 2 major surgeries heart related. I hope you find a doctor for your second opinion, talk with lisa she will help you out in any way she can
                  Take Care
                  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


                  • #10
                    Re: Hi There...I am New Here

                    Just a quick FYI since no one else has mentioned this and you seem to be from New Hampshire.
                    I'm heading for New England Medical Center next month for a full evaluation. They are one of three hospitals in the country that specialize in HCM.
                    Forget about your cardilogist. Just get a referal to NEMC. They do full evaluations on Tuesday. I know that they have openings on 12/23.
                    Fx

                    Comment


                    • #11
                      Re: Hi There...I am New Here

                      Felix, you are right about NEMC being a major HCM medical center, but there are others too. We try not to direct patients to any particular center over the board. We encourage the patient to call Lisa at 973-983-7429 to discuss where the best doctor to meet that person's needs practices. Thanks.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Hi There...I am New Here

                        Hi Felix,

                        I will give them a call, but as I am on medicaid, I don't know if they will allow me to see them, but I will be looking into it. Thanks for the help. Harrybaby666
                        Striving for good health...LOL...that\'s a laugh!

                        Comment


                        • #13
                          Re: Hi There...I am New Here

                          Hi all,
                          just a quick note - We try not to make referals on the message board here, each case is different and there are several good centers available. While we communicate about several centers here on the board and encourage this exchange of thoughts we do try to keep specific referals off the board and kept to a more personal level.
                          We have very few 'rules' out here, but this is one we try to stick to. I know that sometimes we forget that some of you are newer to the site and may not know this...sorry I should post a reminder more often.

                          Thanks everyone for their input and concern for each other!

                          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


                          • #14
                            Re: Hi There...I am New Here

                            Originally posted by Harrybaby666
                            ...I have also been having from time to time, shortness of breath when I am laying flat...
                            I have always had this symptom. When I lay down it takes me a couple minutes to catch my breath. I don't remember not having it like that. I always thought it was a bit strange or backwards or something.

                            You wanted to know if anyone was in your boat, so I just wanted to let you know that someone was in the boat with you, incase you get tired of rowing or something.


                            Deedee
                            »-(¯`·.·´¯)-> HCMA LOVES YOUR HEART <-(¯`·.·´¯)-«
                            Murmur detected in childhood (3rd gen, 3 clear siblings)
                            Chronic dyspnea, dizziness & palpitations (21+)
                            Echocardiogram showing 3X thicknesses 2000
                            Cardiac CT 2009 no significant obstruction or plaque (Yay!)
                            Cardiac MRI 2010 showing septal scarring (Boo!)
                            Verapamil 280mg a day (metoprolol starved extremities)
                            ICD MAR 2010 - Canadian Trials St. Jude FORTIFY

                            Comment

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