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Up and down


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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • Up and down

    Good morning everyone. Today I was reminded again of the unique properties of this crazy disease we share.

    As I try to do at least 5 mornings a week, I was up by 5:30 for a brisk walk of 1.5 miles. This is my only real form of regular exercise except for cutting the grass with a walk behind mower. I would count golf, but with the hills here in PA I ride a cart, so golf is not “real” exercise for me.

    Anyway. Most mornings I feel “light” to “medium” when I go walking. That means that it does not feel like a lot of work to get going and to walk. I am breathing heavily, but not breathless in the HCM way we all “know and love.” Then there are those mornings when I quit after 10 minutes. I feel “heavy”, my heart hurts and I get winded almost from the get go.

    This morning I was moving towards the heavy feeling. My legs felt like lead. It was work to get going. So I cut my normal routine and only walked for about 15 minutes. The crazy thing is there is no rhyme nor reason to why I feel heavy, or light, it just is. Monday evening when I cut the grass, I had some chest pain. Yesterday I got very lightheaded several times going up and down stairs at work. So I imagine whatever symptoms I am feeling these days are part of that HCM cycle that comes and goes. Next week, or tomorrow for that matter, I might not even notice my heart as I engage in whatever activities.

    It is that up and down nature of HCM that most people cannot relate to, and I find frustrating. Thanks for listening.


    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

  • #2
    Re: Up and down


    Wow, does that sound familiar! Saturday I walked a lot - slowly, but walking and felt pretty good all day. Sunday I walked less and could scarcely make each step. I also could see no reason for the difference. I find myself analyzing everything I do to see if I can explain these differences, but cannot. For me the issue seems to be that if I can make it to the front gate of the campus (about a block) without chest pain or panting, I can probably make it the rest of the day as long as I don't push it. If I can't make it halfway there without that sharp pain in the back, I might as well give up the day as a lost cause. In between is also in between for the rest of the day as well.

    So, what's the answer? Patience seems the only solution for me.



    • #3
      Re: Up and down

      I Think what you both describe is indeed part of the ongoing scenario of HCM. What I have learned is that there are days that we feel this "normal people syndrome" and of course we go with it and take the advantage while we have it . But alas there is the pay back. As in referring to a diseased heart we are perhaps spent in our energy we need to regroup and often this takes a few days, we may have had contributing factors of increased heat, humidity or we may have been carrying a tad too much fluid in our bodies, or we are tired to begin with. I 'm not sure after all I 've noted that there is not any one thing that can be directly pinpointed as the route cause ; as frutrating as that is. Rhoda I have been telling my docs for several years about that pain in my back that occurs. They just shrug and say hmmm. Before I had diuretics it was very intense with very little activity provacation and before the myectomy as well. If a doc were to listen to my lungs or even I listen to them there was never any tell tale finding as a wheeze or a rhonchi or symptom of fluid. After the surgery i still get that pain and notice that it is when i have been pushing myself . Recently I had a discussion with my PCP about this and my inability to gather any activity tolerance without symptoms that lead me to the couch or for a rest. The warm weather is particulaly challenging. These distresses often seem delayed and as you both report often come the next day when we try again for the same activity or similar. We are so greedy to be "normal and like everyone else" . This is a grief provoking phenomena for me and leads me to confront and to compare the "differences in my life" as to the way life once was. More recently that has been my struggle ; acceptance of myself and my life . I am very stubborn and refuse to go with the flow. I think many more of us struggle with this daily but don't always bring it up . As I was recently reviewing the disease process of CHF , it was a good review for me to relook at what happens to the heart in those with HCM and failure. We don't always express the same symptomatology as those with the classic CHF we show more of a systemic picture as fliud dispersed about our bodies hiding ; like in the taught abdomen,legs , arms, neck, etc. When the heart has a demand or activity called on to perform these entities come into play . Some of us whose hearts are very stiff work very hard to meet those demands, beating ever so forcefull but not being able to meet the cardiac output demand. Being Beta blocked also blockades the hearts ability to rise to the occasion. So we experience a low cardiac output failure. I think amongst HCMers this is more common then not. For instance , how many of us were "pushing ourselves and our hearts" to do what our former docs told us to do because they said there was nothing wrong with our hearts and we needed to work ourselves harder?. It can be concluded that an overworked diseased heart attempts to remodel itself to save itself and in the end the remodelling has really worsened the heart condition. I believe that is why some of us progress to Heart Failure before we are diagnosed. The limitations we often discuss are just those limitations. We must by all means continue to try and do those things that we wish or want but realize that that wall peolpe talk about hitting is very much in some of our HCM lives daily and on various level of degree. Unfortunately it slaps us harshly with the reality that we are different and live our lives according to how we feel . That is what our survival revolves around in regards to our HCM. I think for me the hardest thing will always be trying to accept that I can not be the way I want or live the way I want and that this disease governs my life and restricts me more then I would ever wish anyone to have to experience. Another long one by Pam hope some how it helps to share this.
      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


      • #4
        Re: Up and down


        I get so agrivated at myself sometimes even having surgeryif i walk 3 blocks i suffer for it and cutting grass forget it, my legs and body hurt so bad and i swell really bad, i retain fluid so that is probably what it is but i go to a pulminary doctor and hopefully tomorrow he will tell me something but i have a feeling this is going to take a while to figure out, i think some has to do with the fact i have CHF (moderate) but i don't think that's all of it, but what you describe it sounds like HCM to me, good luck

        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


        • #5
          Re: Up and down

          The unofficial - yet rather accepted term for what you are explaining is "good day bad day syndrome". I hope someday we find the WHYS behind this, but for now just know that it is simply part of HCM.
          Be well,
          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)


          • #6
            Re: Up and down


            You are so right. Good day - bad day, up and down, heavy - light, whatever we call it, someday we might know the why of it all. Meanwhile it's living with the reality from one day to the next and taking advantage of whatever you have been blessed with for that day.

            It's just so cool to have a place to let it out and know that people can relate.

            God Squad co-moderator
            Nothing is as gentle as strength and nothing is as strong as gentleness


            • #7
              Re: Up and down

              "Good Day - Bad Day"! Maybe we're Luckier than Most - after all, when we have a 'GOOD DAY", we appreciate the **** out of the Day & probably over do it, because we can, that day!


              • #8
                Re: Up and down

                Pretty much sums up the way I feel. Being relatively new to the HCM world, I am still trying to deal with the ups and downs (mostly downs) of the disease.

                One thing that is nice is that we have a great virtual community here, and its nice going through this journey with such a cool and supportive bunch of folks.


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