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.

New Member from Va

Collapse

About the Author

Collapse

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

  • New Member from Va

    I just found you site while surfing the net on hypertrophic cardiomyopathy. I was just recently diagnoised with this condiction in addition to CAD and cornary artery spasms. I had a echo done and my heart doctor said it was normal, however, after my next visit she said I had a thick heart but did not say hypertrophic cardiomyopathy. I searched the internet about thick heart and found this condiction. I asked what casued this and she said years of high blood pressure. I am on toporol 25 mg. , was on norvasc but am having periods of light headness. My heart doctor seems to think it is not my cardiomyopathy but could be my blood sugar. I went to my pc today and and have blood work for my sugar and she thought it my be a inter ear problem. If my tests for sugar come back ok, should I contact my heart doctor and let her know. I am also suffering from severe fatigue when I do any kind of work for very long, heart palpations, eposiodes of low blood pressure and heart rate and continued chest pain. I am at a loss of where to turn next. Any help is appreciated.

    I retired from police work after 30 years last Dec. Female age 51
    Pat
    Virginia

  • #2
    Re: New Member from Va

    Pat,

    Welcome to the HCMA website. I would suggest you call our office next Tuesday or Thursday between the hours of 9 a.m. and 5 p.m. and speak with Lisa. She will be able to answer a lot of your questions and give you a lot of information on HCM.

    Kelly
    Life is 10% what happens to you and 90% what you do with what happens to you.

    Comment


    • #3
      Re: New Member from Va

      Pat B

      what part of Va are you from? I live in Norfolk. I have HOCM, if you would like to pm me , we can chat a little, i'm 46 year old female, i found a good dr. in richmond Va, He was recommended by Lisa the president of this site, she was a great help to me, when i got so frustrated and didn't know what to do. It is very important to see a specialist that deals with this disease, not every cardio Dr. knows how to treat this disease, you can call Lisa in the office, she will talk you through any problem you are having, everyone here is great and will help you in any way they can, if you need the name of a good dr. you can PM me at


      I hope you get the answers you need, 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


      • #4
        Re: New Member from Va

        Hi and welcome.

        Um, I'm confused. There is a big difference between left ventricular hypertrophy (LVH) and Hypertrophic Cardiomyopathy (HCM).

        People can have LVH for a variety of reasons that are unrelated to HCM. HCM is a genetic disease that causes the left ventricle and septum to thicken, which in turn can cause mitral valve prolapse and/or various heart rhythm problems, and also (VERY rarely) sudden death.

        LVH usually happens when the left venticle wall gets too thick from being overworked due to -just what your doctor said- years of uncontrolled high blood pressure. (http://www.medhelp.org/forums/cardio/archive/890.html)

        Your doctor can't have it both ways --you can't have HCM caused by high blood pressure. And then you say that you have low blood pressure, but you are on a pretty low-average dose of a beta-blocker. Is your heart rate low too?

        Are you gaining weight and is your hair thinning? If so, you could be hypothyroid. Have they done a thyroid panel? Very important test, I would get one asap if they didn't do this already.

        Depending on where you are in Virginia, the closest heart centers that can treat you best for whatever you have are in Boston and Cleveland.

        It sounds like you are dealing with doctors who are not really up to speed on much of anything, really. Please see our links page for a list of heart centers that know what they are doing. You can also call the office for more help in choosing one.

        take care,

        seb

        Comment


        • #5
          Re: New Member from Va

          Sarah,

          I do have mitral valve proplaspe (sp) and also tripusid proplaspe. (mild) I am on the low dose of toprol because my heart rate got to low when I was on Cardizem 180 and Norvasc. I was in intensive care for 3 days with my heart rate at 40. I had an echo at bedside and the doctor said it was heart failure. I had a ekg for pre work up for surgery on Sept. 25 and my heart rate was 50 with t wave abnormailties. It has been going from one extreme to another. I read that HCA was genetic and also can be caused from uncontrolled high blood pressure.
          I will ask my heart doctor at my next visit what she meant by thick heart.
          The HCA would explain why I fatique in hot weather with hands and feet swelling and when I would stand in one place for a long time (especially in hot weather I would almost pass out). I will touch base with my heart doctor after the results of my blood test. Also I have sent for my ekg to have her look at it. I have all the other symptons of HCA jerky pulse, hard pounding, light headness. I beleive that my smoking keeps my heart rate up because when I don't smoke for 3-4 hours my heart rate goes down.

          I've had three different doctor's tell me three different things. Maybe I should go to a another specialist, (I have been going Wake Forest University Bapitst Hospital in Winston Salem, NC and is only a 2 hr. drive for treatment and removal of a bone tumor so I may check there)

          Thanks for your advice.
          Pat
          Virginia

          Comment


          • #6
            Re: New Member from Va

            Dear Pat,

            HCM is genetic. It cannot be caused by high blood pressure. It sounds like you need to get to some doctors who can help you figure out what is really going on. You may or may not have HCM. I'm sure you would want to know what the real deal is.

            If you have HCM, it's likely that others in your family do too. One of your parents most likely has this disease. If you have HCM and you have children or siblings they should be tested for HCM too. It's a genetically dominant trait.

            You really need to get some straight answers now. You can't get proper treatment for something when you don't know what you're treating. Please, call Lisa at 973-983-7429. She'll be able to help you.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: New Member from Va

              Pat,
              The road to understanding HCM is often a complicated one. LVH is one thing - HCM is something else. HCM is genetic as Reenie stated and is NOT caused by outside factors (such as Hi BP).
              If you have a copy of your echo report that will help us help you figure out what is going on.
              Call the office or fax the report to 973-983-7870 (our NEW fax number).

              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


              • #8
                Re: New Member from Va

                From what I'm reading, it does look like you need to see a Specialist asap and get taken care of if you have HCM. Calling Lisa is an excellent idea! She is really nice and will help you out a lot. I mean, a Specialist is best b/c it looks like your cardiologist doesn't know a thing in regards to HCM and from you listing your symptoms and reporting them to your doctor and it may be me, but from reading into it, it seems they act as if it is nothing except this or that....Well, I hope you get to feeling better and get some new docs,

                Comment

                Today's Birthdays

                Collapse

                Working...
                X