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Relief of symptoms

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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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  • Relief of symptoms

    Hi friends. I have a question. I don’t think I asked it here and I won’t see the Dr. for another month so here goes. In January I received a PCD. About 3 weeks ago I began a cardiac-rehab program. Two things stand out BIG TIME!

    The first thing I notice is that I do not experience the chest pain I have had for the last 12 years. I have exercised more in these last three weeks than I have in 12 years and I don’t hurt! Admittedly this is inside and away from the elements, but the reduction is pain is about 97% compared to before. Secondly, my SOB symptoms are greatly reduced (I’d say about 75%). I find I can talk better now while exercising than I could in the mid-eighties before I even knew I had HCM.

    They tell me I am pacing almost full time when I exercise and they expect that is due to the beta-blockers I’m on. The device recognizes that my heart needs to pick up some speed and evidently does it for me. Would this make the difference?

    Has anyone else experienced a relief from symptoms after getting a pacer? I am quite pleased with this unexpected quality of life increase!

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

  • #2
    Leon, I haven't a clue - although I'm sure you'll get lots of answers. I'm just here to say that I'm glad you're feeling so much better.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Leon,
      Some patients with obstruction benefit from DDD Pacing and find the symptoms are far less... there is good news and not such great news...it appears that the improvement may not last "forever" some people report symptoms returning in a year or so...others last longer. I am not saying this to bring you down ...just to let you know that if the symptoms return not to panic and think your getting worse, it is likely to return to what it was before. Also there is some new data the DDD pacing long term may not be good for the heart, a new study came out on that I am still getting data on that and will post it soon.
      Enjoy it now !!
      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


      • #4
        DDD Pacibng

        Lisa. What is DDD pacing and how does it differ from other types of pacing?
        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

        Comment


        • #5
          Ah yes that would be a good thing to explain (opps sorry) DDD is Dual Chambered pacing there is a lead in the upper (atria) and lower (ventricle). they are timed to beat the heart to beat in a fashion that is a little unusual. In traditional paceing there is a lead that tells the heart to beat...here it tells the top when to beat and then the bottom when to beat.
          That is the very tired lisa explanation of DDD pacing...
          FOrgive me I caught up on all posts and emails today my fingers, and eyes are shot!
          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


          • #6
            Leon, Originally pacemakers had only one lead into the ventricle. It has since been learned that a lead to pace the right atrium and one to pace the right ventricle gives better cardiac output or blood flow because it more closely mimics the heart's normal beat. If the atrium don't contract, you don't have good filling of the ventricles and will have less blood flow out of the ventricles, (right ventricle to the lungs, left to the body). So virtually all pacemakers these days are dual chambered unless being used as an emergency backup till the dual chambered one can be permanently inserted. Some ICD's still use only the ventricular lead as those patients are not expected to need pacing except as an emergency backup after a shock. You don't say what your mode of pacing is, but if it is DDD in the manner that has been used to relieve obstruction in HCM, the timing will be set to make sure the right ventricle is paced rather than to allow the heart to beat itself. So the lead will sense the beginning of your natural heartbeat and then kick in just milliseconds early to make sure the ventricle is paced, causing the right side to contract before the left side. Normally both sides will contract at the same time, and most people's pacemakers (cardiac problems other than HCM) are programmed to pace only if the heart doesn't have it's own beat within a certain time-frame. In your case, if your heart was beating very slowly, for whatever reason(maybe a high dose of beta blocker), and you are being paced just to increase your rate to a higher and more normal rate, just the increase in rate will give greater blood flow and you should feel better from that. Ask your doctor how and why you are being paced. It could be either of the two or even a combination of both. Pacemakers can be programed in many different ways to remedy many different problems, and I wouldn't want to assume you are DDD paced just because you have HCM. Whatever the reason, I'm delighted that you are feeling so much better. Keep us posted, Linda

            Comment


            • #7
              Pacing

              Thanks Lisa and Linda for your informative answers. Actually my pacing is supposed to only kick in when needed and not be working all the time. When I exercise it seems to kick in, most likely due to the beta-blockers holding things back. I was told that should my heart rate fall to low would pace or that pacing would be the first line of defense with V-tach/V-fib. Other then that I have no idea how often I pace, but it is not supposed to be set for regular all the time.

              I will go in in one month and believe me I will ask them all these questions too. Meanwhile you guys are a great source of helpful information.

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

              Comment


              • #8
                Leon, I thought that might be your situation, and just the increased rate will make a tremendous improvement in cardiac output and improve how you feel. The more you learn, the more questions you can ask and ultimately learn even more. I sometimes feel like I ramble on with too much info, but you have to know the basics before you can comprehend the more complicated. Your doctor will probably be excited to have another of his patients interested enough to learn and he will take the time to explain it all to you if he thinks you want to know,(at least we hope so). Linda

                Comment


                • #9
                  Hi Linda,

                  I wanted to ask a follow up question to the pacing discussion. I got an ICD 10 days ago or so, and I am being paced like Leon, when my heartrate falls below 60. I believe we also have the same device. Is this DDD pacing, or is it called something else? Is it harmful in the long run also, or is that something different?
                  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.

                  Comment


                  • #10
                    Cynaburst, if you are being paced only when your rate is below 60, it should not be the DDD pacing so often referred to with HCM. (Ask your doctor just to be sure you have the correct info.) This would be what is often referred to as "demand pacing". The backup pacing which you seem to be describing lets the heart do it's own thing as long as it does it often enough. It's there to help out if needed. As for the study that Lisa is referring to, there is some question as to whether the pacing of the ventricles one at a time rather than together, as the heart would do on it's own, may lead to weakening of the heart muscle over time. There are some studies going on, and when we have good, reliable info, we will post it. In the meantime, as we say so often, research is just that, research and must be entered into cautiously. The risks just aren't always obvious early on. The backup pacing is not continuous so doesn't necessarily pose the same risk. Besides that, if you need the backup pacing, you don't have a choice and can't change it anyway, and in such a case, is truly of benefit. Hope this helps. Linda

                    Comment


                    • #11
                      Thanks so much Linda for clarifying. That was exactly what I was trying to figure out.
                      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.

                      Comment

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