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mtlieb Find out more about mtlieb
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  • Visit with Specialist

    Hi All,

    I went to Pittsburgh on tuesday to see Dr. Shaver at UPMC Presbyterian, and i just can't say enough nice things about him and his staff. What a great bunch of people! I was extremely impressed.

    The clinic there is quite large, very smooth running, and professional. They called me back for my appointment before i was scheduled (if you can believe that), and for the four hours i was in the clinic, there was not a moment that i wasn't with a doctor or technician being tested or counseled. These folks also work closely with Dr. Lever in Cleveland, and i feel very good about the level of care i will be getting from here on in.

    They did a long and intensive echocardiogram which Dr. Shaver sat in on. My gradient that day was 64 mmHg at rest, and they were able to provoke it to 144 mmHg. Clearly the 200mg of atenolol a day isn't doing the trick. Dr. Shaver wants to try backing me off that a bit and adding a calcium channel blocker to the mix. He feels that i am overly beta-blocked right now, and it may be doing more harm than good.

    Oddly enough, my septum appears to have thickened (1.5 to 1.8cm), which usually doesn't happen with HCM. I would normally just chalk it up to differences in technique, but these guys measured it every which way they could and got the same numbers every time. Short of opening me up and using a tape measure, i don't see how they could have been more accurate.

    They're going to do a stress test next week, which nobody has wanted to do with my gradient such as it is, but Dr. Shaver feels that it's imperative to get me up on a treadmill and see what happens. Oh well... i guess we'll find out won't we?

    Any input on the septum issue?

    Thanks,

    Jim
    "Some days you're the dog... some days you're the hydrant."

  • #2
    Re: Visit with Specialist

    Jim

    I was told that it can happen an indeed it did happen with me, because in November mine was 1.6 and a week before i went into surgery it was 1.9, i knew i had gotten worse i could feel it with how i was feeling and i was on the strongest dose of Diltiazem they could safely give so they did a TEE and said my mitral valve was hitting my aorta and trying to close it, but it was causing a blood flow problem with it and that is why my feet and hands were always freezing he said, that was a relief in it's own just to know i wasn't going crazy, Jim iam so glad you got a good doc and i hope things start to look up for you

    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

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    • #3
      Re: Visit with Specialist

      The measurement is normally different from echo to echo based on the echo tech, hydration and other factors. We see a .2 shift is very normal in measurements. Therefore 1.5 to 1.8 is within the limits we often see here.
      Do not waste much energy on this # as it likely means nothing.

      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)

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      • #4
        Re: Visit with Specialist

        Jim,
        I'm so happy for you that you now have a great doctor and team taking care of you....best of luck!
        \"It is not length of life, but depth of life.\"

        Ralph Waldo Emerson

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        • #5
          Re: Visit with Specialist

          Shirley and Cynthia,

          Thanks for the nice comments!

          I've got a very good feeling about this one. Since Pittsburgh is only about an hour's drive from here, I told Dr. Shaver i'd really just prefer to see him all the time now, rather than trying to coordinate with my local cardio. That way all my records will be in one place, and he's got such a great team working with him, i don't think i'll have problems getting help and advice when i need it. I have a real need lately to try and simplify my life

          Jim
          "Some days you're the dog... some days you're the hydrant."

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          • #6
            Re: Visit with Specialist

            That’s a GREAT idea my friend. The only thing I could add would be to use Books on Tape (or CD) to make that hour’s drive more pleasant. It certainly is worth your time. Some libraries even have the tapes for loan.
            Burt

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            • #7
              Re: Visit with Specialist

              I love books on tape. Recently i found a collection of old radio shows on tape at my mom's house and she loaned them to me. Old radio mysteries, Orson Welles and the like... they're great!
              "Some days you're the dog... some days you're the hydrant."

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              • #8
                Re: Visit with Specialist

                I just had a new echo done Tuesday as well Jim, this time my gradient was 67mm at rest. I will have to wait a few days to get the rest of the results. It did look like to my obstruction was a little worse but its nice to have the new data. Good luck on your stress test.
                \"A Misty Morning Does Not Signify A Cloudy Day\'

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