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How bad is fibrosis?

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Mother of four Find out more about Mother of four
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  • How bad is fibrosis?

    My husbands recent and only MRI shows diffuse fibrosis in over 50% of his heart muscle. This sounds terrible to me, but he has no symptoms and his heart functions fine. He has HCM and has been taking Verampamil for 25 years already. In the last 2 years, the Holter tests have showed non-sustained ventricular tachycardia. Based on this, his cardiologist wants to implant a defibrillator. He struggles with the decision, understandably.
    Can you tell me, what the large amount of fibrosis means? Will his heart fail? Will the fibrosis continue to get worse and take over his whole heart? My husband is only 39 years old.

    signed, a worried wife

  • #2
    Fibrosis is thought to contribute to arrhythmias, as it can make electrical conduction abnormal. So the proposal to implant an ICD is understandable. It's obviously his choice, but if it were me, I'd do it.

    Why don't you call the HCMA office and talk with them about how to interpret this result (especially in terms of prognosis)?

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      I agree with Gordon.... but besides calling the HCMA....It's important to be able to ask your cardiologist these questions.
      Is your husband being seen by an HCM specialist or at an HCM Center of Excellence? The HCMA office can help you with evaluating the care he is getting and preparing a list of questions to discuss with the cardiologist.
      Add on : I just noticed from your information that you live in Paraguay...So the system we have here in America for HCM Centers of Excellence would not apply.. Often times University Hospitals are a good resource for Cardiologists that understand HCM
      Last edited by JillC; 08-10-2018, 01:21 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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      • #4
        Yes, we live in Paraguay. There are no HCM specialists as far as we know. Nor do we have a university hospital. That’s why I have been looking for resources on the internet.
        We will be able to talk to a cardiologist next week, hopefully. My question really is, does fibrosis progress to heart failure? His fibrosis is due to genetics, the doctors think. He has never had a heart infection or heart attack. The HCM was diagnosed many years ago, when he was a teen.

        Thanks for the responses!

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        • #5
          Fibrosis is a very common part of HCM....the degree and extent of fibrosis is different with each case. Fibrosis does often progress over time but it can progress for 20 years and then stop progressing all together and stay at the level it is.
          "Heart failure" is a diagnosis that means the heart is unable to meet all the demands of the body....Heart failure does not necessarily mean the heart is " doomed" ....heart failure can be mild. Moderate or severe and people can live for a very long time with mild heart failure with proper medical care. The level of heart failure a person is in is generally classified by their symptoms....google New York Heart Failure classification or AHA heart failure classification. An ICD won't prevent heart failure. An ICD offers protection in case the heart goes into a fatal arrhythmia.
          One of the biggest dangers in someone with a lot of fibrosis is if it causes scarring ..... It is the scarring which can be detected on MRI. Scarring makes normal electrical conduction in the heart muscle more difficult and increases the risk of sudden cardiac arrest. The greater the amount of scarring the greater the risk.
          In General, the risk factors an HCM cardiologist would consider in suggesting an ICD are: Family history of sudden unexplained death due to cardiac arrest, Thickness of any part of the ventricle wall over 3cm, Percentage of scarring on MRI, and evidence of non-sustained runs of ventricular tachycardia ( NSVT) on a prolonged ekg .....or holter monitor over 7-30 days and a drop in blood pressure during exercise testing. Each of these risk factors by themselves can be a cause for concern as well as any combination of them. Does your husband have any other risk factors on this list? Has he had a holter monitor test? Possibly he just needs more information to be comfortable with what the cardiologist is suggesting.
          If you call the HCMA for information....maybe you can convince your husband to be in on that call.
          Blessings,
          Jill C
          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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          • #6
            Additional Info..... I do not know how health care services work in Paraguay or in South American countries. However, I did find an article about a group of Cardiologists in Buenos Aires that are hoping to be an HCM Center of Excellence and are gathering much experience and expertise in the area of HCM: ICBA. Institute Cardiovascular de Buenos Aires.
            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
              Thank you! This is very useful information to us! I appreciate you taking the time to answer in detail.
              My husband has non-sustained ventricular tachycardia as per Holter tests. He has no history of sudden death in his family, but does have a cousin with HCM (already fitted with a defibrillator). The thickness of his hypertrophy is relatively mild around 2 cm. Only the scarring on the MRI seemed quite concerning to the cardiologist. We might be able to see him in the coming week. We live 450 km from any mayor hospital. But I will follow up on the institute in Buenos Aires!

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