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Scared of whats to come..

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AustinB Diagnosed with HCM at the age of 10, Am now Currently 19. Mom Diagnosed with HCM when she was a kid, also had a hole in her heart. Trying to have a strong heart with a diseased heart. Find out more about AustinB
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  • Scared of whats to come..

    Hi Everyone,

    I recently registered but ive been looking at this website for awhile now because i feel like it helps me grasp my HCM, So ive had HCM pretty much my entire life (im 19 now) I was diagnosed with it when i was about 10 my mother also has it she was also born with a hole in her heart, (Shes now 36 and has not had any problems with her HCM she has Non Obstructed) My mother has had a stroke though that the doctors did say wasnt from her heart problems tho. Ive been doing fine most of my life but just recently ive been scared of whats to come with my HCM, it all started back in December of 2017, it was on Christmas day i had real bad chest and arm pains and went into real bad panic mode and had 911 called out, they ran a EKG right in my home and told me my heart rate was normal my heart functions normal they told me it was all anxiety and a major panic attack (I have a really hard time believing that) Since that day ive been to the ER in and out about 18 times within the past year due to the fact that im scared of my heart racing or even beating too hard, it makes me think im going to die for SCD (I tend to look up alot about HCM and SCD thats how i came across this site) Ive read that SCD is pretty rare even in people with heart disease and ive been told by my Cardiologist that my heart is fine it has been at minimal thickening ever since i was young (i have Non Obstructed HCM By the way) But it just doesnt seem to click with me because i get these chest pains and automatically assume that since i have HCM it has to be from that (Worst case scenario), Ive currently looked at my last echo and my Gradient is 9 mmHg i dont know if thats good or bad i havent asked my cardiologist because i feel like ive troubled him enough in the past months, Ive had a 30 day holter monitor that has shown that i have Occasional PVCs within Normal Sinus Rhythm my Doctor and Cardiologist says this is normal everyone has them even without heart disease but i seemb to just think that this HCM is gonna kill me off, ive read how studies show nowadays HCM patients can live into their late 80s or 90s and even live normal lives without complications, Im just scared and looking for help or reassurance from other peoples experiances on this website and all feedback is appreciated, Ive seen my mom who has had a hole in her heart and HCM still have no complications with her heart and i wonder if mine will be the same since its genetic but i hear all HCM experiances are different, I guess for my final statement i just wanna say i was fine up till this following year and now i think HCM is going to cause me SCD or a Heart attack (And im only 19!!) like ive been contemplating on taking cautious measures and just going ahead and getting a ICD but i dont know what i should do. Any advice? I just dont wanna feel like im living a death sentence and that theres only worse things to come with my HCM. My cardiologist wanted to take me off my Atenolol due to the fact that he thought i didnt need it but now i currently take 100mg Atenolol due to the fact that i want my heart to be relaxed from racing my cardiologist is fine with this decision he claims its reassurance that my heart will be ok with they medicine. (I have had several EKGs that say my heart function is normal). (My Peak Gradient is 9 and my Mean Gradient is 5), (lVS is 1.5cm and LVIDD is 3.9cm and LVPWd is 1.3cm those are marked as abnormal,) (I also have an Ejection fraction of 66% and i have Mild hypertrophy only on my left ventricle.) Ive also read that your heart stops growing at a certain age whenever you stop growing so does that mean my HCM stops growing with it and stays the same? Thank you to all that respond in advance!!
    —————————————————————————————————————————————————— ————
    I guess one of my main concerns is needing to know im not living a death sentence and that i can actually enjoy my life, i worry constantly about SCD with HCM.
    Last edited by AustinB; 08-03-2018, 08:55 AM.

  • #2
    Dear Austin,
    In general excessive worrying about anything is do to fear. Fear of death....is pretty universal.... not just with HCM. So here are my suggestions:
    1) If you want to know that you are getting the most up to date evaluation and treatment recommendations....see if your insurance will allow you to go to an HCM Center of Excellence(COE) if you are not already going to one. If you need information on hooking up with a COE call the HCMA office for some help.
    2) That being said, based on the limited information you have sent, your cardiologist sounds like he is managing your case according to protocol. And that you have mild non-obstructive HCM. An ICD might be indicated if you had a thicker heart wall, a family history of SCD, sustained or non-sustained v tach ( not just PVCs) or significant scarring on Cardiac MRI. I don't see any mention of those.
    3) Fear and worry can cloud your judgement, AND cause anxiety and increased arrhythmias and chest pain. Chest pain can be a very " Normal " and frequent occurance with HCM WITHOUT indicating a heart attack or impending SCD. Chest pain occurs in HCM because the thick heart muscle demands more oxygen than normal heart muscle. That can cause chest pain and arrhythmias.
    4) Keep a record of what you were doing before your heart started racing, how long it lasts, what helped stop the racing and the degree 1-10 /10 of intensity of the chest pain. This will give you something constructive to do, instead of worrying and will provide important data for your cardiologist.
    5) With or without HCM you need to develop some skills to reduce fear, panic and worry....You might want to visit a professional or take some stress reduction classes.
    6) Knowledge about HCM is good, but googling can make you crazy. Call the HCMA and get a phone appt for accurate information....or join the HCMA Facebook group.
    Yes, you can live a long and healthy life.....especially if you get control of your anxiety over your condition.
    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
      Hi Austin,
      Beyond Jill's suggestions, I'd suggest that you call the HCMA office and schedule a conversation with them about this. This is one of the important things the HCMA does, so don't think it's unusual. Just call them.

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Thank yall for the feedback, and ive made sure to look into the facebook age and joined and will be giving the offices a call Monday, I would like to point out i forgot to mention in my post, I have no signs of Vtach i just have the PVCs in fact, I can have a slow rate and get PVCs in my resting heart rate, i have a normal resting heart rate, and i havent noticed chest pains with my heart beating fast usually the pains are just random and ive been checked out so much and so many EKGs my cardiologist tells me my chest pains are not from my heart, He claims they are muscle tension maybe from my anxiety, He said i shouldnt really be worried unless i start passing out then he said my HCM may become a bigger problem with passing out, but he says my HCM isnt causing my chest pain. But its probably just my anxiety but everytime i get some chest pain or tightness i automatically assume its my HCM causing me to have a heart attack. I definatly need to call and learn more about my condition!

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