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Abbygirl2 Find out more about Abbygirl2
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  • My appointment

    Hi all, I need some input so please bare with me...

    I saw my cardio the other day-was in his office for about 5-10mins. I told him about the feeling faintish, weak, lightheaded, all the many different arrythmias and heart symptoms I have been getting these past 8 months.
    He did some in-office tests(stand up/bear down/BP, pulse check etc etc. He did not feel it was neccessary to do an ekg, echo or anything else.
    He said my BP does not drop with stress, and rises when I stand(normal I guess).
    He said he would do an echo along with a new test?? next yr(July 05).
    He said the amyl nitrate they used (several times) was in place of the exercise stress test. (still not convinced of this one.)
    He doesn't think the lightheadedness and weakness is heart related. (althought the lightheadedness could be from the Atenolol).

    He said everything sounded great and told me if I raised my Atenolol, the arrythmias and palps would probably lessen and possibly go away.

    One thing he said to me haunts me still. He said, "your enlargement is minor."....which I have learned means very little as far as risk goes.
    Does this one comment mean he knows less than I had expected he knew? Does this mean I am being treated by someone who isn't 'up' on HCM. I am so worried about this. I wish he never said that.
    OK

    I am trying NOT to judge him too harshly, he has been good to me and has been my cardio since '99.

    I don't know what to think right now, I am sooo confused. After that comment I was so flustered I couldn't think straight, I just kept dwelling on that one sentence. So of course I never got to request a refferal to see a specialist.

    On the plus side...

    Since I raised the Atenolol to 75mg/day I have been feeling better- although I am still REALLY bothered by the heat and chest tightness(when climbing stairs), and the occassional thump...ugh.

    Yowza...I wrote a book here. My apologies.

    Thanks for reading if you made it way down here. I hope everyone is well and taking care of themselves.

    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.

  • #2
    Re: My appointment

    Pam,

    I am bit concerned with some of the comments made - please take this in the manner it is intended Having HCM is like being a little bit pregnant - you are or you are not - NOW will you have a boy or a girl, a big baby or a little one, blonde, red or black hair - those are the things that are yet to be detrimined. With HCM septal size can tell us only a few things for sure. 1. IF we have hypertrophy 2. Septal measurements of 3.0 or greater have been linked to high risk 3. most people who die from HCM have septal measurements under 3.0.

    So the ole question "does size matter"? Not as much as some think

    Your symptoms do sound like typical HCM to me and yes the meds may be adding to some of the symptoms - but it is all connected. Have you been to a specialist yet?

    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


    • #3
      Re: My appointment

      Hi Pam,
      Boy I know just how you feel. My old cardio Ė the one that first diagnosed me Ė left the group and started his own practice. To continue with him would require changing my coverage to a PPO status, and wind up costing me many thousands of dollars additional each year.

      I had my insurance companyís high risk caseworker do some checking for me, and she got me an appointment with a highly recommended cardiologist, and I saw him. He said a lot of the signs of recent tests were good, which was in my favor, but he did order new blood tests and chest x-rays to see if my heartís stents were still OK. He said the swelling in my legs, ankles and feet may be due to one of the drugs Iím on, but he didnít change anything. My next appointment is in three months, even though I told him I felt like Iíve been losing ground these last few months.

      Yesterday we went on a bus excursion to Laughlin on the Colorado River, near the bottom tip of Nevada. I brought my scooter and we had a fun day. We left the house at 7:30 and got back after six, then did a little shopping and didnít get into the house until about eight. I was at the refrigerator and squatted down a bit to see what was on a lower shelf and came within a hairís breadth of passing out. I grabbed Shirley and she helped me into a chair. I do get into instant trouble with SOB, dizziness, etc, with some degree of frequency, but I almost never get that close to passing out.

      So here I am, my old doctor has become too expensive to continue with, the new one seems knowledgeable about HCM, but Iím becoming more and more symptomatic and my next appointment isnít for another three months. I guess like most people when I become symptomatic I expect attention and want the doctor to make my symptoms go away. Unfortunately that may not be possible. Weíll just have to play this out and see where it leads.
      Burt

      Comment


      • #4
        Re: My appointment

        Thanks Burt and Lisa, No I have not seen a specialist yet, it is in the works.
        Why is it that a septal measurement of 3.0 or higher is associated with higher risk, yet most people who die from HCM have measurements LOWER than 3.0?? I am confused yet again.

        Burt, you get around much more than I do, I am glad to hear that, although I read on with jealousy.

        That feeling of passing out sticks with me off and on throughout the day. Its probably my worst symptom right now.
        I have to admit you were right, I did want him to fix everything in that one visit, make a bigger deal than he did. Now I am left wondering if I didn't explain things clearly enough for him to understand just how rough these past few months have been.
        Changing Dr's is not something I want to be going through right now...if its not one thing its another.

        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


        • #5
          Re: My appointment

          Pam Hi , Boy your story could have been mine a few years ago when I was seeing " a cardiologist " for 18 years who was acting as a GP and then when he told me " there is nothing wrong with your heart " and decided he only wanted to be a cardiologist so of course because "there was nothing wrong with my heart", I did not have to see him any more and could see this new doc in town who he was turning his non cardiac patients over to. Well the new doc decided after listening to my heart and taking his own Hx , I should have an Echo. It was done I was held back and guess what he said? You will need to see a cardiologist ASAP and you need to be on a beta blocker. My response, " I have been seeing a cardiologist for 18 years and taking a beta blocker for about 3 years." I asked him how this tied in with my echo, he said your heart is enlarged and you have a very very loud murmur. As it turned out my heart was only slightly enlarged my septum pre surgery was only 18 cm's and I had a very large gradient . So like Lisa says big or small things vary from individual to individual with HCM. Hey Burton I know you are always giving very good advise and now with that scooter of yours could you take some of that advise and go to a specialist and get yourself checked appropriately sounds like it is time. Take care . 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


          • #6
            Re: My appointment

            Hi Pam,
            A specialist, a specialist. Aye, thereís the rub.

            Where do you find one you can afford and who is fully conversant with HCM in this town? Iím trying to find one, and have expert help in the search, but - - -

            Thanks for your concern, dear heart. Iíll get over this hurdle sooner or later and move on to the next set of problems awaiting me. But right now I just want some shuteye.
            Burt

            Comment


            • #7
              Re: My appointment

              3.0 - more people will have septal measurements of 3.0 or LESS however those who have measurements higher than 3.0 have a higher rist of SD. The law of averages kicks in a bit here - people with measurements of less that 3.0 out number the higher than 3.0's by a large margin.

              Does that make sense?

              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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