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my update


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  • my update

    hi all,

    i haven't browsed or posted here in a while. hope everyone's doing well. i've had a lot going on in my life (all good stuff) so have been somewhat busy. in the middle of a very hectic june i did have time for an appointment with dr. pravin shah at the hoag hospital in newport beach. luckily the insurance stuff all worked out quite well and it didn't cost me an arm and a leg. anyway: i really liked dr. shah and am very glad that i went to see him. not because he told me anything remarkably new or because he managed to magically fix my heart but because it was very comforting to finally speak with someone who is a relative authority in the field.

    he reviewed my past echoes and, while he seemed generally well-disposed towards the quality of those echoes, wants me to get a stress-echo done under his supervision, so we can get a clear idea of my heart's response to different levels/types of exercise. at that point i hope to also finally find out what my maximal thickness really is: i've been told all kinds of varying numbers around the 30 mm mark. my stress echo is later this week.

    he also confirmed something we've disussed on these boards: the question of why i, who have a maximal thickness >30 mm, have no obstruction while others with less hypertrophy do. in my case i am fortunate in that my thickening is situated more in the middle--as a result there is no obstruction as yet. he did say though that it is not out of the question for this state of affairs to change but he saw no reason why it should.

    a couple of interesting things:

    *he was sceptical about whether i, as a generally asymptomatic case, needed to be on beta-blockers at all. he said that as far as he knows the research shows no proof of betablockers helping asymptomatic patients.

    *i also got the sense that he would not have recommended an icd if i had come to him first. he said that there is only one school of thought in the hcm world that believes that a >30 mm hypetrophy is by itself enough of a risk factor to get an icd. (the new ep at my regular doctor's seemed to have the same opinion.)

    *also he asked me to go off the toprol for 3-4 days before the stress echo--he said that for someone with my level of symptoms it wouldn't be a problem--this is my first day off (granted i only take 50mg a day) and it feels no different than any other day on the meds (i've been on it for 6 months).

    he was very encouraging about the long-term prospects, even for someone with my measurements. this is, i think, why seeing a specialist is so important even for people who think they are doing well and don't have major problems (yet). reading the research online and so on only gives you a very impersonal, generalized view of the condition as a whole. seeing a specialist gives you the information on your specific condition. one of my biggest concerns, for example, has been that hcm for me will invariably lead to chf; another is that people with hypertrophy >30mm invariably have a lower lifespan due to this reason. i felt better on both these fronts after talking with dr. shah (if unable to talk him into giving me an iron clad guarantee ).

    anyway--this has been a long post. i look forward to your responses.


  • #2
    Re: my update

    Mongo, Thanks for sharing so much of your info. I'm glad your doctor was able to give you that reassurance. Looking only at numbers just can't give the true picture. As he told you, no guarantees, but an individual evaluation can pick up all the positives factors in addition to the negatives. Your local cardiologist should be pleased with his evaluation of your care also. Linda


    • #3
      Re: my update

      That's all good, but it is my understanding that you need to wean off beta-blockers and NOT go cold turkey when stopping them or you can have withdrawal and/or rebound effects.

      Let us know how everything goes. Seeing somone who knows what you are talking about is such a relief, isn't it?



      • #4
        Re: my update

        Mongo (Still love that name!)
        I agree Dr. Shah is a very kind and knowledgeable man.

        RE the thickness vs. gradient - there are many factors that cause obstruction, not all are well understood at this time. It is really strange how some people have no gradient but someone with a much smaller measurement has a large gradient???????????

        Let us know how you do on the stress test.

        Be well,
        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)


        • #5
          Re: my update


          In regard to stopping the Toprol-XL cold turkey before the stress test, 50mg is a pretty low dose, and it was at 50mg that my specialist told me i could jump off of it entirely with no adverse effects. I think if Dr. Shah feels it is okay he shouldn't have any problems

          Mongo, good luck with the tests, let us know how it works out!

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


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