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  • what is with these tests?

    question: Since i returned to new cardiologist (post alcohol ablation) they are wanting to do 24-hour holter monitoring of heart as well as persantine thallium test ( i tried to do thalliium treadmill test but couldn't go very long on treadmill....due to weakness and leg cramps) Hard to tell what symptoms are due to End stage renal disease and which are from HCM. Prior to this cardiologist none of these tests were done on heart. What will these tests show? Do they show if HCM is better? Do they tell anything about the gradient or obstruction or if there is recurrence of hypertrophy. I never had all these tests before, and was wondering if this is a common thing as a 'heart patient'? And will it be necessary to continue them life long? It is still a bit confusing. When i go to Boston to HCM specialists I understand what they are doing and they are great to explain all. But now back on the west coast i have no HCM specialist, just regular cardiologist, and they don't know much at all about alcohol ablation or follow up for this. Since alcohol ablation is fairly new and 'experimental' do docs just not really know how to 'follow up'? I am wondering and feel a bit nervous if all is being watched well. Wondering if I am better off going to Boston once a year or once every 6 months for a check up? Any info about these tests and also what are STANDARD tests for HCM follow up and alcohol ablation follow up. THanks so much....and HAPPY HEART-FUL NEW YEAR TO ALL!!!!

  • #2
    The Holter monitor (24 hours) is standard and is used to see if you have any unusual heart rhythms during the time it's recording. Most "heart patients" have to do this. The other test, I'm not familiar with it. I think it's to see how your heart works, also how much oxygen gets through to the heart muscle. The test that would look for recurrence of hypertrophy would be an echo. The treadmill test would've also told them if your blood pressure reacts correctly to the stress. I would guess that part of what they're looking for is risk factors for sudden death. Do you have an ICD? If not, maybe they're trying to determine if you need one or not.

    Reenie
    Reenie

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

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    • #3
      Dear Isabelle,
      Let me start by wishing you the Joy of the Season. Then I’d like to make a few comments, - for whatever they are worth.

      First, the stress test – It is designed to measure your heart’s operation first relaxed, then again under stress (the Persantine is the stressor – not walking or biking.) (The Thallium is a radio active tracer which can then be viewed when you first get the shot, then later to see if, or where, the blood is pooling.) I believe this is a fairly common heart test – and I have had a number over the past ten to twenty years. Actually, when I had the Persantine tests, they were a snap – but now they have been using a new stressor on me that has been knocking me for a loop. (The last one, just prior Thanksgiving got me to at least an eight on the one to ten scale. Be thankful you are getting the Persantine.)

      Next, Kidneys – This test was done while my creatinin was over six, and they were talking dialysis. (After getting out it was 4.4, and off diuretics it went as low as 2.5, but with a mild diuretic dose, it is now running at three.) (I never realized how closely associated diuretics and kidney function is, and I am now dancing along between kidney failure and CHF. I will get a shunt put in my arm for dialysis on January 12th for ‘when’.)

      Finally, in the aftermath of a procedure like an alcohol ablation, it might not be a bad idea to check with Boston before undergoing the test, and go ahead only if they approve it – AND you get all your questions answered, either by Boston or your local cardiologist.

      For the last comment under ‘finally,’ it would probably be a good idea for an annual check-up in Boston – at least until they tell you your good to go it on your own. Getting your local cardiologist to consult with Boston as needed, would also be in your favor.

      Hope Santa didn’t bring you too many things that will require you to take back to the stores for exchange. Remember all the work that poor elf has to do on Christmas Eve. A touch off here and there can be easily excused – it’s the love that really counts after all.
      Burt

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      • #4
        I would suggest you have them contact Dr. Maron and discuss your case. This will help them better understand your HCM.

        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)

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        • #5
          thank you, lisa

          dear lisa....always an excellent idea. I am reminded of how TERRIBLE i felt last year and didn't know why....and that due to your love, support and help, I am not only alive, but doing so much better. You literally saved my life getting me to Boston. I am soooo grateful. Wishing you and your family the most blessed of holidays with great love, isabelle
          (kelly) Maybe I will get to go to boston and see the wondeful folks for a check up in the spring....but for now, think your idea is right on....as always!!!Thank you!

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          • #6
            Glad to help!

            Happy New Year!

            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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