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Can HCM Progress from Non Obstructed to Obstructed?

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DRC1218 Find out more about DRC1218
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  • Can HCM Progress from Non Obstructed to Obstructed?

    I was diagnosed when I was around 24 (I am now 39). I have desperately tried to ignore this disease, with the exception of the obvious days of feeling bad and knowing it's heart related. This summer I started getting chest tightness so went to my local cardiologist who ordered a stress test. I ended up having a four beat run of NSVT prior to starting the test. Everything escalated from there. I discovered that my minor HCM is actually Severe (always told my measurement was 1.4 and Cleveland has me at between 2.3 and 2.5) and also discovering I have moderate scarring. The one thing that makes me feel good is that I do not have obstruction. I am hoping that means I will NEVER have obstruction....Is that true or can the disease progress? I do have minor regurgitation in the mitral valve, which I also forgot to ask about....Is that something I have to worry about progressing? Also, my notes from angiogram state I have myocardial bridging but that was never discussed. I haven't read much about the myocardial bridging but did read some on the internet that that could cause chest pressure. I have been severely fatigued for many months and have thought all along it was caused by fluctuating hormones, but now I'm wondering if it could possibly be my heart disease is just progressing and that has me scared. Also, now that everything is brought to my attention I'm realizing my ankles and abdomen are swelling every evening (not bad but definitely there).

  • #2
    Welcome, DRC1218! When you have a chance, please go to the "Hello! My name is . . ." forum and introduce yourself.

    Unfortunately, there are no guarantees with HCM. Unobstructed today doesn't mean unobstructed in the future.

    Also unfortunately, there's not really such a thing as "minor" HCM. A doc may use a word like that to mean that they don't think you should expect serious problems in the near future, but that doesn't mean that you won't start having them.

    I realize that this sounds grim. Take a deep breath: the fact that you're here on this board means that you can get a lot of support, and we can help point you to a lot of information. When you refer to Cleveland, I'm guessing that means you've been to one of the HCM specialists at the Cleveland Clinic? If so, you're in great hands!

    That said, it seems like there's a lot going on and you can use some help figuring out all this information. Why don't you call the HCMA office and make an appointment to talk with Lisa Salberg about what you know about HCM in general (and your problems in particular). And about your treatment. She does this all the time - it's not a weird thing. I know that I felt much better (and much more informed) after I had that talk with her; I'm sure you will too!

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Hi! I second Gordon's recommendation to give Lisa Salberg a call. She was so helpful to me in getting out of denial about my symptoms and helping me clarify the reasons I needed to have surgery to remove my obstruction. We made a list of things I needed to address with my doctor and my family. I felt much better after talking to her.
      Maybe your symptoms are all related to hormones and maybe they are not, but you need answers. I spent eighteen months telling myself that all my symptoms were caused by excess weight and panic attacks. I was diagnosed in 2011 because my PCP heard a murmur during a routine exam. I didn't have any symptoms at the time so I didn't really take it seriously or think it would get worse. Then when I started having symptoms my denial took over. It's better that I understand the reality of my HCM, but coming to terms with it has not been easy emotionally. I'm sure you are having some of the same feelings I am having. Feel free to contact me.

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      • #4
        Besides talking to Lisa..... Which is a very helpful starting point... You have some very specific clinical and medical issues that your HCM cardiologist at Cleveland needs to know about and may recommend additional testing for AND can explain to you the physiology and pathology going on in your very specific case. Make a list of all your questions....start with Lisa and she can coach with a specific list for your HCM cardiologist. ..... You can't control the disease but you can control your fear about the disease and it's progression by getting accurate information. Truth be known, most HCM is very manageable in the hands of specialized HCM cardiologists and surgeons consulting with local cardiologists when needed......But it is an ongoing changing condition that can be different for each individual.
        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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        • #5
          Thank you so much for all of the replies. I agree with all of you, Lisa is amazing and very helpful. I have reached out to her and she has been extremely helpful, patient and full of information. I don't want to take advantage and call with too many questions (I had called her before going to CC and after). I had reached out after my CC appointment for some information regarding her thoughts on getting an ICD implanted locally. I actually went to CC for the first time just last month. The questions I was asking above are regarding things I read about in my report but were never discussed i.e. myocardial bridge and minor regurgitation in the mitral valve. I think I was so shocked to find out about the scarring and size of my heart which was so much more than I was aware of, that the discussions were all revolved around those issues and the doctor never even had a chance to discuss or mention the myocardial bridging/mitral valve regurgitation. I'm sure that means they are not concerning enough to be mentioned. Again, thank you very much for the responses!!

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          • #6
            If they use words like "minor" to describe mitral regurgitation, then they mean it. I have minor regurgitation too; when it has come up in conversation they always tell me that what I have is nothing to worry about, and that for most people, if they have enough mitral regurgitation to really matter, they'll be very symptomatic.

            I can understand why the myocardial bridging would be upsetting. Why not call your Cleveland doc to ask about it?

            Gordon
            Myectomy on Feb. 5, 2007.

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            • #7
              Hi, I am probably chiming in late on this, but if you haven't called CC yet, definitely do! My husband is a patient of Dr. Lever and we have always found him and his staff very responsive and helpful when we have called with questions or to get information. Don't be afraid to reach out and get the answers you need!

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