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Lisa R. Find out more about Lisa R.
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  • suggestions of questions to ask new doctor

    Hey guys,
    Sarah suggested I post a note, thank you, to I ask if anyone has suggestions of questions that I should ask a new doctor that I will be going to see February 7. I have been seeing a cardiologist since 95 for my HCM, which I believe is also HOCM, I will leave it up to this new doctor to tell me that though, his position is that of
    Assistant Professor, Medicine
    Division of Cardiology
    Director, Hypertrophic Cardiomyopathy Clinic
    Consultant, Cardiovascular Diseases
    I have a list of questions going but any questions you feel are important to know about this are appreciated. I am getting ready to leave the house now to go to my Internal Medicine dr. to get the results of an echo I had done in Novemeber when hospitalized ( chicken pox and pneumonia.)
    Now from being here on this site and others researching this finally, maybe I will understand some things on the echo.
    Lisa R.

  • #2
    Hi, Lisa. I think I would ask for measurements, whether or not there is obstruction, and if he feels your current course of therapy is appropriate or if you need to change anything. If I think of anything else, I'll post later.

    Reenie
    Reenie

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

    Comment


    • #3
      You want to know the basics -
      1 what are your measurements
      2 how many (if any) risk factors do you have for sudden death
      3 what medications he/she thinks will work best and what alternatives you have should that not work for you.
      That should get you started off well.
      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


      • #4
        I got my last echo

        so here is what the report states
        aortic valve is minimally thickened with three cusps that open adequately
        mitral valve minimally thickened and openswill without evidence for porlapse. Systollic anterior motion of the mitral valve present. left ventricular chamber normal in size is normal with mild to moderate concentric hypertrophy adn overall normal systolic function. Right vent. size and systolic function normal, left atrium is enlarged at over 4.5cm, right atrium normal in size. there is a small pericardial effusion present.
        mirtral inflow velocities appear normal with at least moderate eccentric mirtal regurgitation that can be tracked back to the superior wall of atrium. very mild tricuspid insuffeciency present. Subaortic outflow velocities have turbulance by color flow, peak gradient is estimated at 100mm of mercury at rest.
        what this really means, to tell you the truth, i guess I will have to research. I am not too sure
        oh there is also something about an earlier report mentioning a possible ventricular septal defect, not seen in current study?
        Thanks for the suggested questions guys
        Lisa R.

        Comment


        • #5
          re

          thanks Reenie and Lisa,
          I am right now on 25 mg of lopressor 2x's daily, if I have an issue, as I put it, I nibble on some more, about 25mg more and I am good to go in a few minutes, the last dr said if it works keep doing it, maybe that is not the best but like i have said I think I tell her what works for me. Look forward to seeing what the new dr. says about all of this, I have a first cousin on my father's side who was having issues with passing out, they did some tests on him, with holter monitor didn't know what was going on from what I was told, he had I believe a diffibulator put in, I emailed him asking for his records to take to my doctor visit, all immediate family, one sister and two brothers were all tested 6 years ago and nothing was found in their echoes, I am thought to be the only one, my 6 yr old son also tested this past year, came back cleared. I have requested a copy of his echo to take with me as well
          Lisa R.

          Comment


          • #6
            In short... sounds like..thick walls but not mass hypertophy - obstruction that sounds rather significant and a messed up mitral valve...with a touch of a dilated left atrium...
            Your run of the mill HCM
            I would suspect that the obstruction issue will top the discussions as well as the family history issues.
            I would think toward myectomy and an ICD - that is likley where the conversation will head... DONT PANIC... WE are ALL here to get you through the entire process

            Why not ablation - the Mitral valve issues will likely stand in the way of a successful outcome.

            Hope this helps.
            Lisa
            I am here in the office if you want to chat
            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
              Mayo Clinic

              Dear Reenie and Sarah,
              Thank You for your input. I'm really enjoying this site.

              Thanks,

              Margie

              Comment


              • #8
                Dear Margie,

                You're welcome. I am so glad you are enjoying the site. I have found it an immeasurable source of information and support. I hope you do too.

                Reenie
                Reenie

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

                Comment


                • #9
                  My story

                  Hi,
                  Here's my story---I was diagnosed with hcm in 1992 after the birth of
                  my first child. I kept getting dizzy, sob and almost passing out when
                  I would go up the stairs or use my treadmill. My dr. ordered a stress
                  test and echo. My hcm was mild at this time. When I had my stress
                  test I passed out due to my blood pressure drop during exercise. I
                  was started on a beta blocker at this time and seem to do ok. In 1994
                  I became pregnant with my second child and my pregnancy went well.
                  At 37wks my labor was induced(no epidural-this was the docs decision
                  not mine) they were concerned with my blood pressure issue. They also
                  put in a swan-ganz catheter as a precaution to measure pressures. I
                  delivered a healthy baby girl weighing 8lbs 3oz and 21 1/2 inches long.
                  I went to the ccu for observation and we both went home 2 days later.
                  I still had occasional dizzy spells,chest pain(since my early teens), and
                  some shortness of breath and was placed on beta bl.
                  Then in May of 1999 my brother(37yrs) died suddenly as my father
                  and grandfather had too. I also have a nephew with hcm. In
                  (July 1999) I had my icd implanted,because of family hx.,abnormal
                  blood pressure response and previous syncope. After this I had
                  been doing well until the early summer of 2001. In the summer I
                  had several presyncopal episodes while biking ,which were relieved
                  when I'd drop and squat it would pass. My symptoms continued to
                  be more frequent. I started to have more shortness of breath(with
                  very little activity) dizziness and more frequent and severe chest pain.
                  My doc ordered an echo and a stress echo which showed severe sam
                  and lvot obstruction gradient of 170-180 mmhg. At that time I was put
                  on high dose beta bl. and calcium ch. bl. which offered minimal relief.
                  By this time I had developed hypertension,asthma,gained 18-25lbs,
                  couldn't eat much without having sob and chest pain. I went to see
                  a hcm specialist in St. Louis, Missouri. This doc felt it was mild and
                  told me to see him in 1 year. I had my myectomy surgery within
                  3-4 months of seeing him. After my surgery I felt better immediately.
                  I could take a walk, go up steps, carry groceries and laundry without
                  c.p. or sob. As I continued to get better I could bike, hike and go
                  roller skating(fast) with my kids. The surgery has improved the
                  quality of my life. I didn't realize how bad I was until after my
                  surgery. I'm at home now recuperating from an icd/lead replacement
                  done on 1-13-03. I only have a little tenderness from the surgery.
                  I'm in the process of getting approval to be seen at Mayo.
                  I'm only having some minor problems at this time. My doc-primary
                  and cardiologist have faxed in a letter of request to cover the visit.
                  I feel blessed to have supportive family and friends.
                  Lisa S. Thank you for your help and information over the past year.
                  This site is a blessing to all of us.
                  GOD BLESS,

                  Margie

                  Comment

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