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Why does this happen?


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Marie_R RF Ablation ... Myectomy Cleveland Clinic ... 3 Pacemaker / Defibrillators ... Verapamil, Metoprolol, Lasix Find out more about Marie_R
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  • Why does this happen?

    Hi Everyone.

    I have HCM, I had a septal myectomy in 2005, I believe (as they say) my heart has done some remodeling. My left atrium is 5.4 cm (and I'm on my 3rd pacemaker/defibrillator)... and I have Grade 3 diastolic dysfunction.

    2 years ago in February 2016, I had a crushing pain in the upper part of my middle back in between my lungs, I went to the ER and they said that my BNP levels were very elevated and that they thought I was having a heart attack. They did a CT scan and they did a heart cath and found no blockage. They said they don't know why heart was doing that and they said that there was nothing they could do for me so I was sent home. I saw my (previous) cardiologist in the hospital and he had no idea why my heart was in distress like that.

    Since that episode 2 years ago, I have had numerous episodes just like that one but I do not go to the ER because there is nothing they can do for me (and I really hate going to the ER).

    **Does anyone know why a partially remodeled HCM heart goes into those distress episodes with high BNP levels?**

    And I honestly appreciate anyone's input... but please do not say that I need to go an HCM COE, I'm aware of that but I'm too disabled to travel, and I cannot afford to do that... and please do not say that I need more medication because I already take a calcium channel blocker, a beta blocker, and a diuretic... I do not want any more medication side effects. As it is, the calcium channel blocker, the beta blocker, and the diuretic are very constipating (I take a laxative every night otherwise I will not go).

    I just want to know why the heart has those major distress episodes with high BNP levels? Is it a part of heart failure? Is it normal for people with HCM heart failure (diastolic dysfunction) to have those?

    Thank you so much for any information.


  • #2
    I Googled my question (I should have done that in the first place before posting this question, sorry) and 3 threads from the 4hcm.org Forums popped up... Here's the conclusion from one of the 4hcm Forum's thread:


    "This link is to article I posted earlier in this thread, it was one of 3 links...here in the conclusion section of the article.....

    Conclusions— Plasma BNP is independently related to the presence and magnitude of heart failure symptoms in patients with HCM. As a clinical marker for heart failure, BNP is limited by considerable overlap in values between categories of heart failure severity as well as confounding variables of left ventricular wall thickness and age.

    ...written by one our HCM experts B. Maron et al."

    ---- So according to what I read (I read all 3 4hcm Forum threads, elevated BNP levels can be normal for HCM people who have heart failure (or diastolic dysfunction).

    Thank you.

    Take good care everyone.


    • #3
      Yes, BNP isn't so meaningful in HCM patients. But that leaves the issue of your chest pain. It seems to me that it's time to see an HCM specialist.

      Myectomy on Feb. 5, 2007.


      • #4
        Hi Marie,
        You have read my previous responses about choices you can make to find a more suited cardiologist to manage your care. So I won't repeat them. I hear you totally about being tired, being low on financial resource and taking medications with side effects. I have been there many times in my own HCM journey. Nobody really wants to take more medication....but surely you would like to be on the correct medications for your condition and in the correct doses. If you have frequent chest pain and have to sit up at night to breathe....you are not being optimally medically managed for your disease. Although beta blockers, calcium channel blockers and lasix are common HCM drugs, the dosages may not be optimal....OR if you are in a stage of HCM heart failure....an entirely different class of drugs is often introduced.
        If you truly want to maximize your ability to feel better and Increase you enjoyment of the rest of your life......See if you can gather the energy to make some phone calls.....If it were me I would 1) Talk to Lisa at HCMA about HCM Cardiologists in Arizona. 2) Find out from your PCP if he can write a formal referral to an HCM cardiologist at Mayo Clinic in Arizona 3) Talk to the financial hardship department at Mayo and see what you can negotiate....If medicaid will pay for your cardiac testing at a facility outside of Mayo ....then maybe you could bring all your information to one of the HCM specialists and get a consult at a reduced fee with small payments.
        It sounds like you have had a lot of testing already you just need the right doc to put it all together.
        Last edited by JillC; 02-27-2018, 10:25 AM.
        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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