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Progression of HCM?

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angusjcampbell Retired from Healthcare Telecomm in NY City in 2004. Diagnosed with HCM in 2005, moved to Golden Isles region of SE Georgia in 2006. Now working for a non-profit ministry called International Seafarers Center at the busy seaport in Brunswick . Find out more about angusjcampbell
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  • Progression of HCM?

    Hi
    I'm sure that conditions and expectations can vary from patient to patient but generally speaking...

    Should I expect my condition to worsen, or does the condition sometimes "stabilize" at a point of severity? My symptoms started about 10 years ago and got gradually more annoying. Atenolol prescribed for BP unwittingly checked the progression of severity and soon I will start Norpace.

    If heard here that Norpace "works like a charm" for most, but have also heard elsewhere that it just "delays" the need for surgery.

    I am pretty active and can do most anything if I warm up gradually. I will remain optimistic and will stay active as much as I can (was told just "no competitive sports" and that's fine with me). But I wonder if I should start to manage certain expectations for practicality's sake.

    Thanks again
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

  • #2
    Angus hi,

    Everyone's case is different, although HCM tends to present as a progressive disease, many appear to remain stable with mild to moderate symptoms most of their years until sometimes a worsening can occur in the elder years. Then there are those who progress at a fairly rapid rate with signs of deterioration and who many times are in their younger years.

    There are many variables and numerable genetic combinations which appears to correlate somewhat to the differences. As the genetic testing is not a common thing we do not know what similarities we share or those that make our specific cases of HCM different. This is one of the reasons it is so very important to be seen on a regular basis by knowledgeable HCM doctors. They can carefully monitor our hearts and offer advise that is best for our individual hearts.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      You mention the possible need for surgery later. Are you obstructed? There usually isn't any need for surgery unless you are either relieving obstruction or implanting a device like an internal defibrillator (ICD.) The ICD may be necessary regardless of obstruction, but the myectomy or septal alcohol ablation is only for patients who have obstruction and need to reduce the septal size so the blood can flow more freely.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        HCM does not "progress" in the way many other disease "progress" there is no set pattern or course. Some people stay stable for many years others become symptomatic rapidly.

        Norpace is a good place to start for someone with your symptoms. In our experience it is a drug that works for a period of time and normally is discontinued when the person is unhappy with the side effects.

        HCM is more of a 'cyclical' condition in many people. You may have a period of time where you have no symptoms and others when the symptoms are more severe.

        I hope this answers some of your questions.

        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

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