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michael obrien Find out more about michael obrien
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  • medications and deconditioning

    hello everyone,I have spent some time reading over the old posts.I read a in a few spots where (correct me if mistaken)medications and deconditioning(Im not sure what that means)can decrease your heart muscles thickness or septum thickness.I am trying to do everything I can to get better,losing weight,walking etc.I take toprol200mg and verapamil120mg and altace5mg.I have lost close to 50 pds but still have about 20-25 to go.Im hoping that with less weight to move around ,the less I weigh the easier it will be on my heart.any feedback would be appreciated.thanks mikeob I still am afraid to push myself to much . A few weeks ago I was having hundreds of extra beats the dr. said they were ventricular. I took it easy and they went away after about 2 days.now i have 3-5 per day which I can handle I m not sure what brought it on I did have a heavy dinner the night before we had went out to eat and I decided I could eat what I wanted,but again Im not sure what brought that on I just dont want to do anything to bring it back does anyone ever have bouts like that . thanks again sorry to ramble
    One day at a time.

  • #2
    Re: medications and deconditioning

    Mike,
    Let me be clear and up front - nothing will regress your hypertophy. "deconditioning" is used in cases of "athletes heart" NOT HCM. Medications will help your heart relax- NOT thin the walls. Altace is not a drug that is commonly used in HCM and can be detrimental. An HCM specialist will assist you in disease management.

    Keep up the weight loss it will help - good luck!

    best wishes,
    Lisa
    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)

    Comment


    • #3
      Re: medications and deconditioning

      thank you lisa for responding I guess Im still whistling in the dark I would appreciate any recommendations you could give me for an hcm specialist.I have a lot to learn.and Im still a somewhat lost.I only know that I want to stay above ground I realize most take that as a forgone conclusion,but I have never appreciated life like I do now. thanks mike ob
      One day at a time.

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      • #4
        Re: medications and deconditioning

        Michael,

        Congrats on the weight loss... that is great! I'm finally starting to shed some extra pounds myself. Although it is true that nothing you can do will ultimately reduce your septal thickness, i do feel that having less weight to carry around will ease the burden on your heart quite a bit and will help with symptom management. Also, temporary increases in symptoms are quite common after a large meal as the heart works harder during digestion. A lot of us HCM'ers strive to eat many smaller meals throughout the day, rather than two or three large ones. Of course it's hard to resist sometimes, isn't it?

        Take care,

        Jim
        "Some days you're the dog... some days you're the hydrant."

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        • #5
          Re: medications and deconditioning

          Michael---When I was more symptomatic, a large meal could really mess me up. Several times after restaurant dinners I had to hold on to my husband and walk very slowly to keep myself from falling on my face from arrhythmias. My physician daughter says that blood is needed for three functions, brain, digestion, and muscle activity. If you are limited in getting the blood around in your body and one of the functions is calling for lots of blood, the others suffer. Peraonally, I felt it was more mechanical (and this may be a function of weight); that my full stomach was actually crowding my heart and causing the arrhythmias.

          What ever the cause, I sure learned to limit my restaurant food consumption. Since then I have lost weight (only about 10 pounds) and I feel better. That may not be the only factor, but I'm sure it helped.

          Best wishes in finding the best specialty care and feeling better soon.

          Sue

          Comment


          • #6
            Re: medications and deconditioning

            thanks for your reply.Its ironic ,but the worse I feel w/ symtoms the less I eat then when I begin to feel a little better I gradually eat more which is ok unless I over do it. I been trying to eat less. before I found out about this I was eating like I was expecting famine.its scary. Im so glad to have found this site .I find myself thinking about it, of and on throughout the day. It definetely helps when I feel symptoms and get anxious knowing others are out their. I was wondering do the symptoms intime go away or get less and less frequent with the meds or do our bodies compensate in some way because I have noticed in reading that some people refer to a time when they were more symptomatic.I hope everyone is having a good day mike ob
            One day at a time.

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            • #7
              Re: medications and deconditioning

              Hi Mike ,

              Congatulations up front as your new little one could be born anytime soon. Didn't you know being a new father again revisited is like riding a bike? You'll be old hat at it soon enough any day.Technology has not advanced the diaper change yet but I hear bottles are a lot easier and no sterilizing , so you can handle that.

              As far as symptoms improving , some people report feeling better and reaching a stabilized point especially with the different medications and the right mix. Some do not. Some are successfull at altering their lifestyles and feel better.Some it doesn't make a difference.

              Sometimes a combination of things work for the long haul and sometimes changes are needed again. Some people have interventions as in septal myectomies or septal alcohol ablations and these make a difference and reduce symptoms .Sometimes even after an intervention , some get worse.

              It is very true that what brings us together as people with HCM does not also mandate that we are the same in symptom, disease process and progression or in treatment modalities . What works for one may have a totally different response in another. From day to day there is variation as you have found in the eating. Many variables contribute to that flux .

              Hope this has helped.
              Pam
              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

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              • #8
                Re: medications and deconditioning

                Pam thanks for responding.I guess a part of me is still battling with accepting my condition.I dont like not knowing when I will feel ok or not and it comes without warning. I want to live and enjoy my family. I still feel somewhat ignorant concerning hcm,and that probably adds to my distress.I dont even understand why this came on at this stage of my life and not before or after what triggers it?why cant the heart muscle correct itself? Thats a whole lot of whys.I need to focus on my blessings and be grateful for what I can do.thats what is amazing about some of the people that post, like burton he always sounds so positive and upbeat,and yet he has many health problems.I will keep trying.. have a good night everyone, mikeob
                One day at a time.

                Comment


                • #9
                  Re: medications and deconditioning

                  Mike - you are doing fine- give yourself time to adjust. Let yourself ask all the questions you can think of- - even if you think is sounds silly - ASK we will respond with the best information we can find.

                  Hang in there!

                  Lisa
                  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)

                  Comment

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