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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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • Results from Doctor Visit

    As I said in my earlier message, my son was diagnosed last Friday. I went today to a second doctor. The one we had been going to the last few years. He had quit taking our insurance and that was why we changed. He came up with a little smaller measurement but still diagnosed him. The lady who did the echo said that James had a septum paritel band (or something like that, I can't remember what she called it) that you should not measure. She said when you measure that with the septum it is thicker. Has anyone ever heard of that? But she said you should not measure that. But anyway it still came out to 16.

    They increased his Toprol to 25 mg and also are going to do a stress test and holter next week. The doctor was so great talking to James about it and how important it was to take his medicine and let me know when something is going on. James asked the doctor if he could cure him. The doctor promised him he would do everything to help bhim but did tell him there was no cure but there could be.

    So I feel good after today, although I am confused as to two different doctors measuring differently. Any comments about that would be appreciated. Thanks for everyones comments and words of encouragement.

    Janet
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Janet

    It really isn't usual for the 2 different tech's to get 2 different readings... I could have 2 from 2 different center on the same day and the measurements would be different, this is why i think it is very important to see an HCM specialist that sees this disease on a daily bases, i hope this helps and good luck

    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


    • #3
      Dear Janet,
      A few interesting facts that you might not run across when you go investigating this disease - and try to figure out which doctor is giving you the straight info.

      First, it is estimated that only one in five hundred on average have this disease. Second, it is estimated that about ninety percent of those with the genes / the disease – are not aware that they have it. Consequently, we represent an extremely small segment of the practice of cardiology. Almost all of these doctors spend their study hours on the conditions they see and treat every day, so by and large, they have little information of HCM, and not infrequently what they do know is out of date – or just plain wrong.

      We who deal with HCM on a personal bases (including all family members) have to research its treatment and care for ourselves, and learn as much as possible about it. But the picture is really not all that black. A few cardiologists are right up to the mark with HCM (and are prized), and there is also three major centers in the US that specialize in HCM and its care. If and when you need help, Lisa Salberg, our Founder and President knows most of these ‘special’ cardiologists across the country – and in a number of other countries too. A conversation with her could steer you in exactly the right direction. That is why you will see so many people advising new members to call her for advice. She is also a fund of HCM information, and is happy to share it with us.

      With this background you can see why it is important to learn all you can about the disease and its care; find a ‘special’ cardiologist and team to treat and do the proper testing of the patient; and to seek care from the specialized centers when or if that becomes necessary.

      Finally, let me say that this is an excellent place to get started. There are lots and lots of straight information here, plus the board members will be happy to share their experiences with you, and provide what help they can. You, your son, and your entire family are welcome to join us in this life boat of ours, and we are happy to extend a helping hand when and if necessary. Please feel free to take full advantage of these opportunities – we hope that you do.
      Burt

      Comment


      • #4
        Shirley is right, it's not unusual to have a slightly different reading from one technician to another. You're on the right track trying to learn what you're up against. Keep reading, keep learning. We're here for you.

        Reenie
        Reenie

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

        Comment


        • #5
          Thanks

          Thanks Burton for your information! It is SO WONDERFUL to have people I can talk to that understands what we are going thru and have knowledge and information. Most people ask me what James' disease is called. When I tell them, they look at me totally lost.

          I thank God for this forum and organization! May God Bless each one of you!
          My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

          Comment


          • #6
            Janet - give me a call on Tuesday and we can go over this a little more.
            It is early and I need to get a train so I do not have time to explain it all in a post.

            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

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