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farhadjvd im sound engineer and music composer Find out more about farhadjvd
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  • burnout stage???

    Hi i was diagnosed 8 years ago and it was stable gradient (22) and lvef 55% but This years dr told me lvef is reduced to 48.6%and after cmr they told it is burn out stage and i have 30% fibrosis.they cut my verapamil and increased metoprolol. Now i have a angina and pressure in abdomen. Iwant to know does it grow ?and can i expect to increase lvef?also can i reduce my symptoms like angina ?
    Last edited by farhadjvd; 09-09-2018, 02:35 AM.

  • #2
    Farhadjvd, I can feel your distress over this situation....I will provide you with my perspective on what is going on, however I encourage you to call the HCMA office and have a conversation with Lisa who is familiar with some international HCM experts that might be able to help you. HCM is not a common diagnosis to most Cardiologists....So their statements of prognosis are based on reading articles about HCM and not actual experience. This is why, being evaluated by an HCM expert can be EXTREMELY helpful if at all possible. I am not familiar with Iran's health care system or your personal resources to travel to another country for evaluation.
    Please do not accept the prognosis of " Burn out stage" . One slightly low measurement of LVEF cannot be an ultimate predictor. The truth is HCM patient's ejection fraction ( EF) can vary even from 1 hr to the next. Last year I was 55% this year I was 64%. So trends are more important than a single value.
    As far as scarring on MRI the percentage of 30% can predict an increased risk of sudden cardiac arrest and may indicate a need for an ICD especially if there are other risk factors in your family. Your angina should be manageable by medication. If you are having significant chest pain after a medication change.....you should discuss this with your doctor.
    Some people find it difficult to communicate with their doctor, some doctors do not feel at ease working with HCM and become defensive with their patients. You will need to become your own best friend....learn about HCM so you can ask the right questions and get the best care.
    If I were in your position I would be asking my doctor 1)Can my medications be adjusted to address my chest pain? 2) With 30% scarring on MRI am I a candidate for an ICD? 3) Is there an HCM expert I might see that could give me a second opinion?
    Probably question #3 should be #1!!!

    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Jill has given pretty sound advice. The one thing I'll add is that some of the leading centers for treating HCM (in particular, I'm thinking of Cleveland Clinic) are willing to provide a second opinion based on looking at your test results. You might consider that, but calling the HCMA is a great place to start.

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        im in iran and there is two heart center and just 1 hcm specialist (my dr) he told me the ef never increase again. and my next time for visit is 3 month later. in cardiac mri results they said its a burnout stage. unfortunatlyicant travel to america for visa and etc .i just want to know is it getting worse?tnx for your answers

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        • #5
          We understand that travel is difficult! What I was suggesting was the possibility of consulting with Cleveland Clinic remotely - they will do this, just based on looking at your MRI and other medical records. I don't know how much it costs - I think it's a few hundred US dollars.

          Gordon
          Myectomy on Feb. 5, 2007.

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