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33 year old, been diagnosed with HCM, mild case. Worried about life, help please

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  • 33 year old, been diagnosed with HCM, mild case. Worried about life, help please

    Hi everybody. I understand this forum is not as active these days and I will be asking the same on facebook.

    I am 33, have been in sports my whole life. Matter fact I have been bodybuilding from 2016 till 2018 while having Myocarditis-which later was found to be HCM of 10mm. It is on Apex, so I guess its another type of HCM

    2 nights ago I woke up with heart beating very fast, scared to death. It lasted maybe 1 min and slowed down normal. I had troponin of 50 and of course T wave inversion.


    Doctor said that I am a mild case with very low chance of getting SCD (I think he calculated 1% or something).

    I have some questions

    1)They prescribed me with 120mg of Diltiazem. I feel weak taking it for 2 days now. Also have some strange pain in my left side of the neck but not chest. Is this normal? Will I feel weak like this all the time? I have a family and work. Is this a good medication? Are there any risks? I really dont like these meds.


    2) I am scared to go to sleep. Is there any kind of monitoring machine that I can sleep with, that in case there is a danger of rapid heart beat or Afib, at least it can wake up my wife and she can take care of me? I am scared to go sleep, being afraid I will not wake up or this event will happen again.


    3)Doctor said that they will observe if I have further rapid heart beats they will give me a monitor to monitor my heart. Is this a good plan?


    4)Only after having monitor they might give me ICD. I am scared it might be too late. I live in New Zealand and I am not sure how different everything is in USA. ICD will be free here only if I have more episides. I really dont want to live through them. I want to pay and install my own



    5) I heard that there is now S ICD which does not have to go inside the heart. That would be great! But how much do they cost?

    6)If I have to travel to Cleavland clinic or Mayo, how much would it cost for a NZ Citizen to get a treatment?


    I really dont want to wait for further episodes. I am hoping to see a Cardiologist soon, paid one. I want to know everything. I have a daughter and my life is for her.


    Thank you so much

    Sorry for my clustered writing all over the place

  • #2
    Dear Roman.....If you have gone on the HCMA Facebook page you may have heard this already. I recommend that you make an appointment to talk to Lisa, the founder of the HCMA. She can help you sort through all your questions and make a plan. There is a world known expert in Sydney Australia, Dr. Sesmarian. That may be more accessible for a second opinion than coming all the way to the US. Please, don’t let your fears get the best of you.... the majority of HCM patients can live a long healthy life with proper management....You just need more information and knowledge about your condition. Please call the HCMA for a phone consult.
    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
      Wow. Thank you so much Jill. I will be making an appointment with that doctor. God bless you. Because I have no way to treat this but my Dialtezem at the moment, I have no protection. No ICD, no Defib at home, no monitor to wake me up at night. I am just scared I will go into VT or Afib in sleep and my daughter will not have a father. My family not with me at the moment so nobody can check up on me.

      Thank you so much. You have no idea how much I appreciate your reply

      Comment


      • #4
        Roman....Not ALL HCM patients have an increased risk of Vtach that requires an ICD. Also, not all rapid heart beats are Vtach or Afib. Afib is not managed with an ICD...it has a different treatment protocol than Vtach. HCM manifests differently in each person....treatment is based on 1) Your symptoms 2) echocardiogram 3)arrhythmia monitoring results 4) possibly a cardiac MRI to check for scarring 5) Any family history of sudden cardiac death.
        There are two parts to a treatment plan 1) is determining if an ICD is necessary 2) Medications to reduce symptoms and arrhythmias and maximize heart function..
        A doctor who is an Expert in HCM can make educated determinations in both areas AND answer all your questions. Fear and anxiety can make everything feel worse....you need help working on ways to decrease your anxiety as an overall part of your plan of care. You can seek help for that even before you see a doctor about the HCM
        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

        Comment


        • #5
          Thank you so much Jill
          Just one last question. I have seen Apple Watch 4 being mentioned somewhere here. Do you think its a good thing to have while sleeping? If not, are you aware of any monitoring device which can be used to sleep with. If anything goes wrong in sleep it can ring alarm and notify my family? I think if I sleep with some device like this i can enjoy quality sleep and reduce my anxiety.

          Thank you

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          • #6
            I have heard that the Apple Watch 4 can detect Afib ....but I really know nothing about it. Probably an internet search would be your best bet.
            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

            Comment


            • #7
              Roman,
              Jill has already given a lot of good advice, and I don't have much to add. Really just two comments:

              1. Others may have different opinions, but if I were you I'd save my money on the Apple watch. It's just not a clinical-grade device, no matter how much they boast about it. The only thing they claim it does is to detect possible afib; if it's like other such devices on the market, it may generate a lot of false positives. Afib itself needs to be managed, but it's not generally something you need to be rushed to the hospital for.

              2. You've had HCM for some time, believe me. It's not likely to kill you in the next little while before you can get to a specialist.

              I know it's hard to cope with this all of a sudden, and there's a lot of information that you never wanted to know. But do try to arrange to talk with the HCMA office (you can do it via Skype), and yes, an appointment with Dr. Semsarian is a great idea!

              Gordon
              Myectomy on Feb. 5, 2007.

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