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21 years old, diagnosed with HoCM

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liu di Diagnosed with HoCM in 2018. Find out more about liu di
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  • 21 years old, diagnosed with HoCM

    Hello, I am from NanJing, China. I was diagnosed with hocm one month ago. My IVS thickness is 33mm and a NSVT was recorded during my sleep, I m anxious about a SCD may happen. Before I was diagnosed, I had no symptom and felt like a normal person, I even have angina recently with medication, Is my disease getting worse?
    Last edited by liu di; 03-06-2018, 03:43 AM. Reason: 1

  • #2
    Liu.
    Hello, I know it must be very difficult to accept a diagnosis of HCM at such a young age. Angina is a very common side effect of HCM because the micro circulation through very thick heart muscle can be compromised for many reasons...leading to pain. So don't let that frighten you. Right now the most important thing is for you to find a Cardiologist that works with a large number of HCM patients. Your septal thickness and NSVT may indicate the need for an ICD. Also, if your chest pain symptoms are increasing you may need a change in medications.
    I do not have any familiarity with the health care system in China however, you may want to call the HCMA office and see if they have recommendations for doctors or medical centers near you that are known for up to date care for HCM.
    If you are in a financial position to take advantage of our HCM Centers of Excellence here in the USA......there is a list of the COEs by state on the home page of this site.
    With self advocacy and good medical management you can lead a relatively normal life.....So read up on HCM and look for an MD that knows HCM well.
    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
      And you can contact the HCMA office with Skype. No need to use costly telephones!
      Myectomy on Feb. 5, 2007.

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