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My War Against HCM


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fkelly5 Find out more about fkelly5
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  • My War Against HCM

    I have posted my story a few years ago and wanted to share my progress with you all. First I have to say that currently I feel better today then I have in the past 6 years when I first officially discovered I had HCM.
    Summary of my situation, A Dr visit for a full physical after returning from an expat assignment in Brazil. While in Brazil I had trouble breathing when exerting myself with physical activity. I had difficulty sleeping and needed several pillows to prop my head up enough to fall asleep. I thought it was the tropical heat.
    I lived in Oak Park, Il and my Dr was Steven Lieberman (excellent doc, who talks to you like you are just an old friend). Moved to Charlotte NC and now have a great Dr in Dr Kelley (Sanger Medical/Heart Center).

    6 years ago I started on 100 mg of atentol. The first week was **** and the meds knocked me for a loop. For about a yr on these meds, I was always tired and lost my taste for beer (a good thing????) When I finally switched to Dr Lieberman, he changed me over to 200mg Toprol XL 1 tab 2 times per day. No more tired, taste for beer still gone (still a good thing,,right????) and generally feeling better.

    Fast forward to 2003 and move to Charlotte. Dr Kelley continued me on the same meds but in my tests it was discovered that I was having irreg heart beats and I underwent a EP study for a psosible defib. Good news was I didn't need it.

    So I don't have to see the good doc again for 1 year and have gone on a body and mind improvement program. Before I spell out some of the things that I am doing, I would like to say,,,,"Don't follow everything I do without checking with your own Dr". What works for me has been approved by my doc and it may not be right for you. Ok take a look..

    Daily Living.
    1. I eat 3-6 times per day and drink a ton of water to stay hydrated.
    2. I stay away from grapefruit juice (doesn't mix well with the meds) and eat balanced meals.
    3. Eat breakfast,,,,,,prepack my lunch and eat dinner before 7 pm.
    4. I generally eat lighter on those days I don't walk and on the days that I do workout with a walk I sneak in a piece of cake, candy bar or whatever.

    I am addicted to the Mens Health website forums (weight control and fitness) for all the tips, suggestions and just great advice you get from everyone about eating right and working out). www.menshealth.com

    Fitness and Exercise
    1. I struggled with this for awhile because I wasn't getting a good feel for what I could and could not do, until I got with Doc Kelly. Until I met him, I was really being a baby about fitness and because of my attitude I slowly gained weight until I was 40 lbs over weight. For me I have a max heart rate of 120 (that is 70%) of the chart prescribed rate for a person my age. Prior to the Doc advice I was afraid to go over 100-105 max hr.

    2. I never ever exert myself without my trusty Polar heart rate monitor. I have the M32 and I use it for monitoring my hr, ensuring that I don't go over my 120 limit and to see how many calories I burn per workout. It costs approx $150. There are less expensive monitors but I liked this one because of the soft chest strap.

    3. I walk on a treadmill (walking outside is great also) but I like to monitor my progress and have the controls (that a treadmill offers) to keep me within my heart rates. Today I set an all time record going 3 miles under 55 minutes at a speed of 3.4 miles per hour. Generally I make sure I walk ar least 3 times per week, but stive for 5 times.

    Back in April I decided to lose weight and get into some kinda shape and not blame my HCM for being heavy and out of breath all the time. From April to Aug I concentrated on getting my diet right and started the things I have outlined above. On Aug 1 I started the walking program and at first did it 7 days per week. I have since cut back to 3-5x's per week and I have lost 40 lbs, can walk up stairs without getting out of breath and generally feel great.

    HCM my first few years had really scared the heck out of me, but once I realized that I could control SOME of the issues, my life has gotten back to normal. In looking back the only thing I can't do is lift weights. Everything else I do, eatting right, walking and losing my taste for liquor (still a good thing, right????) is what I should have been doing a long time ago.

    Please know that having HCM is not the end of your life, matter of fact it could be the beginning of getting your health back in line to better enjoy life.

    Good Luck to everyone and it's good to read other people's dealing with HCM.

  • #2
    Re: My War Against HCM

    I think that your story sounds great, and I am glad that you are feeling well and have devised a program that works well for your. My one comment is that your doctor apparently performed an E.P. or Electrophysiology study on you to determine if you were at high risk of sudden death, i.e. to see if he could induce V.T. during the study. If you were inducible, he would have recommended an ICD. Since you were not, he said you were clear.

    More recent studies and doctors with expertise in HCM do not advocate the use of an EP study to determine whether a patient is at risk of sudden death. Instead, the risk factors, listed below, are evaluated. The reasoning is that a negative EP study doesn't really mean anything for those with HCM. You could still be at high risk. The factors which need to be looked at are as follows:

    1. Septal measurement of >3 cm
    2. history of ventricular tachycardia
    3. history of fainting
    4. history of blood pressure failing to rise during stress test
    5. Family history of people dying of sudden cardiac death before age 50

    I would recommend that you speak with Lisa, and find out a doctor near you for a second opinion. The HCMA office's number is listed on this page. After all, now that you are in such good shape, you want to make sure you stay around for awhile!
    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.


    • #3
      Re: My War Against HCM

      Thanks for your feedback. My EP study was done in April 04 and although I forget about number 1, (septal measurement), I have none of the other 4 factors.

      I think both of my doctors did a good job in eliminating concerns regarding both the risk factors and the chance of sudden death.

      My thoughts may be misguided but my mantra is, do not suddenly exert myself (i.e. mad dash down the street) or put undue strain or pressure on my chest (i.e push ups, or weight lifting). I feel like as long as I warm up properly and gradually approach activities I will be OK.


      • #4
        Re: My War Against HCM

        I don't see any problem with anything that you say. I think that your practices are great. I try to live my life the same way.

        I just wanted to be sure that your doc wasn't relying on a negative EP study as the sole criteria for evaluating whether or not you need an ICD.

        My old doc wanted to do one also, but I refused, and instead sought other opinions. I only had two and a half risk factors, but all 4 doctors (I wound up getting 3 second opinions) decided I needed an ICD regardless of the EP study (which I never did have, but I did get the ICD and a new doc!).

        Sounds like you are on the right track.

        Take care,

        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.


        • #5
          Re: My War Against HCM

          Again a great post!
          This was also discussed at the meeting I attended this weekend. Taking CONTROL over your health care - which includes MANY things. It means getting educated, finding THE RIGHT DOCTOR FOR YOU, getting your mind and body in sync with each other, allowing yourself to be scared...but then getting on with LIVING... to name a few.

          BRAVO on getting on with LIVING and feeling well!

          LIVE,LAUGH and LOVE (Lx3)

          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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