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When to push through and when not.....

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JillC RN for over 40 years, MS degree in Respiratory Nursing, Worked surgical open-heart ICU for 18 years in Chicago.. After years of symptoms finally diagnosed with HOCM in 2006. I retired from nursing 2012 due to HCM and had septal myectomy at Local hospital 2013, Redo myectomy Mayo Clinic 2014. Now doing well. Find out more about JillC
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  • When to push through and when not.....

    This seems like such a simple question but was one of my biggest struggles before surgery and now in the recovery phase I am facing it again.
    The goals seem simple, work up to a 30 mins walk 5 days a week. As per usual with HCM, I will have one day where 30 mins, flat land, mod pace, heart rate around 100 is a piece of cake. Then another day, my thighs start aching the minute I leave the house and I feel too awful to go past 10 mins. The cardiac exercise physiologist at my local cardiology office is a pretty big fan of setting small goals and pushing through ....The only benefit to exercise being in its consistency. He has suggested I go to every other day...since I'm having a rough time...but sometimes every other day is too much.
    My question....am I just a wuss because I don't push through? Or can I still benefit from just doing my walks when ever I feel up to it?
    I used to enjoy walking a lot.... Now with # of minutes and days being "prescribed" I'm beginning to dread it rather than love it.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

  • #2
    Re: When to push through and when not.....

    I have very bad reactions to most medications but found that beta blockers caused the same problem for me -- it was so bad that I could not even walk in my apartment. Keep in mind that I have RSD in one leg which does not help and adds to the problem. Speak to your doctor about trying different beta blockers or stopping them entirely and just go with verapamil.

    Comment


    • #3
      Re: When to push through and when not.....

      Hi Jill,
      It's not such a simple question at all. The question (not that I expect you can answer it) is why you feel poorly on a particular day.

      Put differently, there's a tradition of working through injuries in athletic training. For certain injuries, that's fine - for others, it leads to trauma. It's a different question for muscle strain than for a fracture.

      Unfortunately, we can't say much about why we feel lousy on Wednesday but not Thursday. My own inclination is to suggest pushing yourself a bit (most of us need to be forced off the couch sometimes) but if you're truly feeling bad, you should listen to that.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: When to push through and when not.....

        Hi Jill,
        It's not such a simple question at all. The question (not that I expect you can answer it) is why you feel poorly on a particular day.

        Put differently, there's a tradition of working through injuries in athletic training. For certain injuries, that's fine - for others, it leads to trauma. It's a different question for muscle strain than for a fracture.

        Unfortunately, we can't say much about why we feel lousy on Wednesday but not Thursday. My own inclination is to suggest pushing yourself a bit (most of us need to be forced off the couch sometimes) but if you're truly feeling bad, you should listen to that.

        Gordon
        Myectomy on Feb. 5, 2007.

        Comment


        • #5
          Re: When to push through and when not.....

          Yes Frosty ... Beta Blockers and I do not do well. I was couch bound with fatigue when I was on them after my first myectomy. I have been off them since March of this year and was very glad when the team at Mayo honored my request not to restart them after surgery.
          Gordon, I remember when going for a brisk walk energized me for the rest of the day....
          But since my HCM became more symptomatic in 2012 increasingly brisk walks no longer energize me they just wear me out. I'm hoping that with this second myectomy I can return to enjoying walking. It's been almost 6 weeks but maybe Im still just expecting too much too soon.
          After years of symptoms:
          Officially Diagnosed HOCM 2006
          Myectomy 3/11/13 at non-COE
          Extended Myectomy 7/23/14
          At Mayo with Dr. Joseph Dearani

          Comment


          • #6
            Re: When to push through and when not.....

            Originally posted by JillC View Post
            . It's been almost 6 weeks but maybe Im still just expecting too much too soon.
            Yeah, up to about week 10- 12, when I pushed too much, I got myself into trouble (and got a lot of fingers wagging at me) and would end up with bed rest and reaching for acetaminophen/ tramodol.
            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

            Comment


            • #7
              Re: When to push through and when not.....

              Originally posted by JillC View Post
              . It's been almost 6 weeks but maybe Im still just expecting too much too soon.
              Yeah, up to about week 10- 12, when I pushed too much, I got myself into trouble (and got a lot of fingers wagging at me) and would end up with bed rest and reaching for acetaminophen/ tramodol.
              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

              Comment


              • #8
                Re: When to push through and when not.....

                Hey Jill,

                I'm wondering what it is about your "thighs" aching (related to HCM or your surgery?) or is it just one of many discomforts you have when you can't go on? I agree with Angus 6 weeks out of surgery is definitely something that you need to manage so you don't end up setting your recovery back. Remember your brain has no limits in thinking you can do anything and should be doing everything, so your rational side has to take over and reel you back in. And research says "YES" that every little bit of exercise helps! They say if you can't do all 30 minutes at once breaking it up to 3 10 minute walks also works. They say to aim for 10,000 steps a day & it doesn't matter how you get to that as long as you do. I don't do 10,000 steps but the point is smaller increments help to achieve the goal, if we can't do the more intense workouts.

                I know when I go out walking I'm barely warmed up at 10 minutes out. So I start slow, take deep breaths, many times I feel pressure in my chest, my lower back hurts (unrelated to HCM) but I know as I push on & warm up, these discomforts for the most part subside. It also helps to walk with someone. I walk with my husband so it's not as easy to just throw in the towel. He's real good though about if I don't want to go as far as usual (2 miles we do in about 40 mins) we turn around. There is also the fact that if I walk or exercise, I can't do as much housework that same day because I know I'll be worthless the next day. So it is a balancing act having HCM. I've recently started water aerobics which I've found I can do & not get out of breath (forget regular aerobic classes). But again it's all about pacing yourself and very gradual increases. But frankly it's good to take a day or two off now and then from doing anything, it does wonders!
                Mer

                Diagnosed 09/2009 @51 yrs old- HCOM
                Myectomy 2/17/2011
                Son & Daughter no findings as of yet (echos)
                No family history determined yet -- 1 sister, 2 brothers & extended family.

                Comment


                • #9
                  Re: When to push through and when not.....

                  Thanks Mer....
                  I'm still not a regular walker....30 lashes from the exercise physiologist (LOL).....I'm 8 weeks post op and trying to find my stride. I think I was a bit unrealistic in my expectations post op. The surgery has made a world of difference but there is that underlying HCM that rears it's head on an irregular basis....that still throws me off.....I do walk, I park my car far away from the store and walk extra going up and down each aisle....today I'm doing laundry, changing sheets and watering flowers and I'm done for.
                  I just can't force myself on certain days to do anything.
                  We will see in the weeks to come ...... Hopefully as my heart remodels and my two myectomies are far behind me, my body will find its pace.
                  Thanks for the encouragement......P.S. I've posted my muscle ache issue before and nobody else seems to identify with it, but I truly believe it is HCM related. I will start a routine task like emptying the dishwasher, and my arms will ache like I just left the gym.... Or I will start on a walk and my thighs will burn before I've gone 50 ft. It only happens occasionally since my second surgery....but it's like not enough blood or oxygen is getting to the muscles. It's not deconditioning because most days I perform the same tasks with no symptoms......I guess that's the HCM story, different for each of us.
                  After years of symptoms:
                  Officially Diagnosed HOCM 2006
                  Myectomy 3/11/13 at non-COE
                  Extended Myectomy 7/23/14
                  At Mayo with Dr. Joseph Dearani

                  Comment


                  • #10
                    Re: When to push through and when not.....

                    Ah, the fickleness of HCM! This is why so many of our relatives (and some doctors) do not "get" us. I was a gym rat before my surgery and recovery was pretty easy. But I know that many, many folks have problems and other issues at play and this make recovery harder. I'm all for pushing a bit, but know that we all have our limits. I think you may be beating yourself up a bit over this - its not fair to compare you to others, we are all different!
                    So on the days that aren't as good as the days that were, try to acknowledge that "I can't walk the mile today, but I can do XX" So do XX and pat yourself on the back. Tomorrow you might be able to walk that mile and celebrate that achievement. I think the key thing is to keep trying (and in essence, pushing yourself). Its not the level of activity, its the action.
                    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


                    • #11
                      Re: When to push through and when not.....

                      Ah, the fickleness of HCM! This is why so many of our relatives (and some doctors) do not "get" us. I was a gym rat before my surgery and recovery was pretty easy. But I know that many, many folks have problems and other issues at play and this make recovery harder. I'm all for pushing a bit, but know that we all have our limits. I think you may be beating yourself up a bit over this - its not fair to compare you to others, we are all different!
                      So on the days that aren't as good as the days that were, try to acknowledge that "I can't walk the mile today, but I can do XX" So do XX and pat yourself on the back. Tomorrow you might be able to walk that mile and celebrate that achievement. I think the key thing is to keep trying (and in essence, pushing yourself). Its not the level of activity, its the action.
                      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

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