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Some reflections

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Theresia Find out more about Theresia
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  • Some reflections

    Hello!

    Many things have developed in a great way recently. In September 2010 my bnp-levels was at 3500 and now they had dropped to 2800. This is the first times the levels have dropped, except after I was pregnant. And I've felt better the last couple of months.

    My doctor (I have a new one again since I've moved and he's great I think) encouraged me to try to activate my body more, taking walks etc. And he also removed an ace-inhibitor since I feel dizzy. Now I've tried to take a small walk every day and I also got an exercise bike witch I use for about 3-4 minutes per day right now.

    I really feel my strength has increased rapidly. The first week when I had started to take walks I was extremely tired, slept a lot and didn't do any chores at home. But after that I've managed to do more and more. It's like I have a new life.

    I've been extremely dizzy over the last years and you really get weak and tired when you're dizzy. But this improved a bit a year ago when i diminished the beta blockers. I guess my condition just have dropped since I've been so dizzy and tired and couldn't do anything. But now I think I can take some of it back. During 2011 I've had a kind of chair with wheels that I've been able to use in the kitchen. I find it hard standing up but since I got the chair I've been able to work more in the kitchen, making food... but I've noticed I don't use it as much now since I started with my walks.

    Today I took a bit longer walk than usual. I think I was out walking (in an easy mode) for about 20 minutes. In the end I felt very strong in my body and legs but cramp and ache over my chest. It was like I could feel that my muscles were well oxygenated but my heart or something around there was aching. Well, I was thinking about this.. wondering what is what and if it might get easier with the pain as I get better conditioned.

    Happy to get any input on my exercise journey
    Living in Sweden with husband and daughter.
    Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
    Had my little daughter a couple of months later - 2008.
    Got an ICD - early 2009.
    Have heart failure. Not able to work.
    Thinking about the new operation not yet available here, apical myectomy.

  • #2
    Re: Some reflections

    Hi Theresia,
    I'm glad you're feeling a bit better. One important thing is to increase your exercise slowly. If your 20 minute walk may have been too much, try walking for, say, 10 minutes, and don't increase the amount until you have been able to do that for many days repeatedly without discomfort.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: Some reflections

      I guess you're absolutely right. By nature, I'm quite impatient, so I'll have to keep track on myself.

      But... (my impatient mind is thinking) ... why should I take it so slowly, to eliminate discomfort or because it would be dangerous otherwise? Of course it's not nice with chest pain but I would like to understand those things better.
      Living in Sweden with husband and daughter.
      Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
      Had my little daughter a couple of months later - 2008.
      Got an ICD - early 2009.
      Have heart failure. Not able to work.
      Thinking about the new operation not yet available here, apical myectomy.

      Comment


      • #4
        Re: Some reflections

        Believe me, I'm the same way. It's easy to think "If I can do X, why can't I do twice as much?"

        I think there are a number of answers, but the one that seems most useful is that at any given time you have some limits that you don't want to exceed. If you had no heart problems but were just out of shape, I'd still suggest building up your amount of exercise slowly, so that you don't overdo it and injure yourself -- something I've done many times! Better to find those limits and (very gently) see if you can extend them, than to exceed your limits and hurt yourself. With heart failure, I think that "hurting yourself" doesn't just mean straining muscles; you may actually make things worse.

        So it's great that you're able to exercise -- just try to do what doesn't come so naturally, and take it slowly!

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: Some reflections

          Gordon's quite right. Slow & steady helps you condition better. Only increase as you can safely. Glad your improving and that you like your doctor!
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: Some reflections

            Thanks for your input. I constantly have to remind myself of the importance of good quality rest and good quality exercise (in the right amount). It's so easy for me to not really do anything physical but still not rest. The stress hormones make it so hard to rest but I know I need it badly, to handle the stress and the exercise better. I've realized that I've forgot about those things now when I've been able to activate myself more. It takes so much discipline for me to rest and fight the stress. I constantly loose that discipline and always have to find it again.

            Today all of my body has told me to rest from exercise so I've taken it as easy as I could manage. So today I understood a little bit better that I need to take it slow. :-/
            Living in Sweden with husband and daughter.
            Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
            Had my little daughter a couple of months later - 2008.
            Got an ICD - early 2009.
            Have heart failure. Not able to work.
            Thinking about the new operation not yet available here, apical myectomy.

            Comment


            • #7
              Re: Some reflections

              Hello Theresia,
              I'm glad you listened to your body and took the advice of Gordon and Marc, they are right on track with taking it slow and easy. Up until a month ago, I was on the wrong meds and I literally wasn't up to doing anything outside of going to work (in an office environment). Recently, after a trip to the Cleveland Clinic, my diagnosis became clearer and my medications were changed with positive affects -- for example the ACE inhibitor was dropped and the beta blocker was changed. My energy level slowly increased and I've been able to do more recreational activities and chores around and outside the house --- even in this 95 degree heat! I bet Sweden is nice this time of year! Blessings to you and your family.
              A/V Heart Block 2009
              Permanent Pacer 2009
              Dx non-obs HCM CCF 2011
              CRT-D 2011
              Listed for H/T UAB 2011
              Dx Cardiac Sarcoidosis 2012
              Heart Transplant UAB 2012

              Comment


              • #8
                Re: Some reflections

                Glad to hear about your improvement Steve!

                I have the best physiotherapist who's helping me with some trocanterit (don't know what it's called in english, it's some inflammation in the hip anyway) and she helped me get in contact with a physiotherapist at the heart rehab team at the hospital. I was there talking with her and trying to make a plan for my exercise. I noticed quite at once that she's very ambitious. She thought I could come twice a week and do some work out at the gym. I tried it yesterday. I was 5 minutes on a bike. Did 8 different machines. 5 minutes on the walking machine. Everything was quite slow and easy. In the beginning I felt some cramp in my chest, it passed. In the end I felt very dizzy and had trouble to focus my eyes. But after I felt quite good, tired but "normal". Today I'm extremely tired. Don't like that of course. I also have a lot of pain in my right hip. I'm still glad about feeling something in my muscles. But I think it would be better do to something every day and only add to it when I can add it everyday without having to rest completely the next day. I think the exercise yesterday wasn't only bad, but I don't want life to be like this - do it all one day and nothing next day. And that is also what everyone says you shouldn't do, including this physiotherapist at the heart rehab. I'll just talk to her next time (monday) and hear what she say's.

                blah... I was really happy about my improvements some weeks ago, but now I just feel bad that it's going so slowly.
                Living in Sweden with husband and daughter.
                Diagnosed with HCM after severe shortness of breath while pregnant - 2008, 24 years old.
                Had my little daughter a couple of months later - 2008.
                Got an ICD - early 2009.
                Have heart failure. Not able to work.
                Thinking about the new operation not yet available here, apical myectomy.

                Comment

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