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Wondering and very worried about my condition

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danielk I am a 66 y.o. psychologist. My HOCM was diagnosed 18 years ago. In 2013 I had an extended myectomy at Tufts. My surgeon was Dr Rastegar and my cardiologist was Dr Maron. I am still taking medication to control HCM symptoms and high BP. Overall, the surgery led to fewer symptoms and a much immproved quality of life. I'm a faculty member in the UCLA Dept. of Psychiatry and have a private practice in psychotherapy and consultation. Married, four children. Find out more about danielk
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  • Wondering and very worried about my condition

    Hello,
    I am 58 yo and was diagnosed with HOCM about 7 years ago. At the time, my resting gradient was about 100 and with exertion went up to about 190. Septal thickness was 16.

    I switched to a cardiologist at UCLA. She put me on bisoprolol, verapimil, norpace, spironolactone, and diovan-hct. Immediately my resting gradient went way down and stayed between 15 and 25 until last year. But with exertion the gradient stayed around 150. My HR went down to 55 and my BP to about 125/75 on average.

    However, last year and just recently my resting gradient was measured at 105 and with Valsava maneuver the gradient was about 190. So, it looks as though the above meds have stopped being effective. I am back where I started.

    I've never had many subjective symptoms and still don't. My numbers say I am a candidate for surgery or ablation, but I am about a I or II on the NY scale. So, I thought I would ask you if you had any comments on my options. I think that walking aroudn with the above gradient numbers is probably dangerous and definitely very scary for me.

    Part of me feels like just getting the surgery over with at Tufts, Cleveland or the Mayo Institute, although I know it is a big deal. Ablation for some reason I don't trust as much. But the other issue is, would surgery be done with more symptoms and open heart surgery is also a frightening prospect. For me, anyway.

    Sorry, for the long note, just reaching out nervously. Thank y ou
    Daniel
    Daniel A. Kupper

  • #2
    Re: Wondering and very worried about my condition

    Daniel, it does sound like your obstruction is worse or not being controlled any longer. I would send or have your Dr. send your latest echos and reports to any of the above COE. Also call the HCM office as they may have some other options.
    Midge

    Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
    ICD&Pacemaker 1996
    Heart transplant March 19, 2004 @ Mayo Rochester
    Mom of Kaye.

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    • #3
      Re: Wondering and very worried about my condition

      Hi Daniel,
      You're right that a recommendation for surgery typically depends on symptoms. But I'd add two caveats. First, some of us (and I speak from personal experience) are pretty good at not recognizing symptoms. Second, high gradients do damage to the heart, symptoms or no.

      It seems to me that the best course is to see an HCM specialist, both for overall evaluation and to discuss whether myectomy is a good idea. It would also be a good idea because you could discuss your drug therapy with them. For example, diovan is in a class of drugs that is usually not recommended for HCM patients: while they do reduce BP, they can tend to increase our gradients. Talking with an HCM specialist might be helpful in working out such things.

      As for myectomies and ablations, you're right not to be enthusiastic about ablations. They're mainly recommended just for people who are poor candidates for myectomies. The latter -- though more invasive and initially scary-sounding -- have a better record in most ways that you might measure.

      Open-heart surgery IS scary. For everyone. But I and many others on this board have survived it, and I'm much better for it.

      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Re: Wondering and very worried about my condition

        Hi Daniel,

        I think that we have spoken before. As you may recall, I had a myectomy at Mayo Clinic about 4.5 years ago. At the time, my gradient was fairly low at rest, but after exercise went up to anywhere between 60 - 120. Most importantly, though I was feeling terrible despite maximum medication.

        There is some indication that the heart responds negatively to high pressures in the heart over time and there is some support in the literature for earlier intervention in order to try to short circuit the long term damage to the heart.

        On the other hand, surgery will not cure you...it will only treat the symptoms, so if you don't feel that your symptoms are incapacitating, then surgery may not be for you, or may not be for you now. It might still be a possibility down the line.

        I guess the best thing to tell you is that this is a cost-benefit analysis. If you read the latest studies on myectomy...particularly those written by doctors at Mayo Clinic and Tufts NEMC in the last several years, you can find data supporting earlier intervention. On the other hand, there are no guarantees and it is open heart surgery. However, the younger and healthier you are, the better you will do in recovery.

        You are really the only one who can make the decision... the docs at Mayo would certainly tell you the same thing. I have been asked by my doc at Mayo to talk to a couple of people who were on the fence, and the above is basically the analysis.

        Feel free to send me a PM if you want to discuss further or if you want to grab a cup of coffee and discuss in more detail (since you are my neighbor).

        Best,

        Cynthia

        P.S. I also agree with the advice of the others. A visit to a COE where they do many of these surgeries would be a great idea before you torture yourself any further so you can make a decision with all of the relevant info.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          Re: Wondering and very worried about my condition

          This article is 7 years old so that is as long as I have known what an obstruction can do.. I was very symptomatic I had readings on stress in excess of 240mmHG. Medication, diuretics in particular brought it down to 120-180.. Was I safe? Heck NO! I was a walking ticking time bomb. I had my myectomy seven years ago this past October. I am still here walking around alive as a result, not cured just a lot better off for it.

          To feel what your gradient feels like, pump up a blood pressure cuff to your gradient number. Feel the pain... feel the pressure it exerts on your arm? That dear sir is the strength of the pressure being exerted internally against your heart valves, walls, blood vessels, your heart chambers, literally your entire heart anatomy.

          What will your heart try to do? Remodel itself overtime and it does not have the credentials to do this.. in the end worse things can lie ahead if you do not take that obstruction down.

          Please read the article in the link enclosed and get thee to an HCM specialist, COE.

          http://www.lifeclinic.com/fullpage.a...=511384&type=1
          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
          Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 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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          • #6
            Re: Wondering and very worried about my condition

            Daniel,
            I wanted to give you an example of my symptoms to measure your daily life experiences by. The actions of your heart that cause these outward symptoms, point to serious problems and are areas of concern. If they do not shorten your life, they certainly give you a poor quality of life. In 2005, before I was diagnosed, and with a gradient of 80 at rest and provoked at 150 (at diagnosis) I had symptoms of:

            1) almost no exercise tolerance- turning over in bed made me short of breath(I was at around 280 lb), and I could not do the simplest household chores

            2)chest pressure and pain running down my left arm

            3) not sleeping well

            4)when I would do a full body stretch laying down, I would get dizzy- sort of a brown out. didn't completely black out

            5) stairs were a nightmare- huffing and puffing when I got to the top

            6) my pulse would race at 120 for 15 minutes to 30 minutes- while I was sitting still.

            7)in the hot weather I felt worse- or after a moderate to big meal this is when I had most of my chest pain/ pressure at first.

            Now, these would not be too bad each by itself, but together they really do take a toll on your heart and your body. If you can identify with any of these symptoms, then I would say you are symptomatic.

            Just my two cents worth

            JudyA
            Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
            Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

            Comment

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