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Progression of apical HCM and testing

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  • Progression of apical HCM and testing

    Hi All -

    It has been awhile since I have posted on the boards...WOW! What a different look! Great job!

    A couple of questions for today -

    Does anyone have any info or personal experiences on progression of apical HCM?

    Also, how often should monitoring/tests be done?

    Thanks!

  • #2
    Re: Progression of apical HCM and testing

    What do you want to know.
    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: Progression of apical HCM and testing

      Well, this is time for the popular refrain..."Everyone is different."

      Your septum doesn't usually thicken much, if it all, once you hit adulthood. However, exceptions happen so echoes are usually done every one to two years.

      Other tests depend on how you feel, what your doctor wants to do, and so on. I see my cardiologist every 6-12 months for a checkup and ECG and an echo every 2 years assuming I don't have any problems.

      If you are having symptoms, all bets are off.

      HCM can cycle up and down in terms of how you feel. You may be great for years and then have a hard six months and have to change meds and spend a lot of time re-adjusting to stuff and then you may feel fine again.

      But, again, everyone is different and your treatment plan has to come from you and your doctor. The only "rule" would be don't go more than 2 years without an echo (this is assuming you have HCM. Screening guidelines are different).

      take care,
      S

      Comment


      • #4
        Re: Progression of apical HCM and testing

        Hi, Tomsgal!

        I was diagnosed in my early 30's with apical HCM. My measurement went from 1.4 to about 1.8 in one year and this year we are skipping the echo since I'm not too symptomatic. I have a feeling I'm thicker, but who knows. We can continue to thicken and, at least in my case, the HCM limits my lifestyle but not much.

        Statistically speaking (per my doc), apical HCM patients have the life span that most closely matches the "normal" population. That's encouraging I think.

        One of the general themes that you have already read on this thread and you will continue to see throughout this board/site is that we are all different and HCM is unpredictable. The best thing we can do is to link up with a specialist, eat right and exercise (cautiously), and continue to LIVE our life. Unfortunately, there is no defined route of progression for any of us so we just have to try to enjoy the ride!

        Like I tell all others with apical HCM, please email me so I can add you to our growing list of apical HCM patients. We have a mailing list so we can keep tabs on one another and hopefully learn from overall information from the group.

        Good luck! And keep us posted!
        Tom Mc.
        Apical HCM

        Comment


        • #5
          Re: Progression of apical HCM and testing

          I have been diagnosed with Apical HCM 14 years ago. My symptoms have been controlled with beta blockers, but I developed a fairly high mid-ventricular gradient, which can be unpredictable. This led me to consider an apical myectomy. The Mayo Clinic have done about 60 Apical Myectomies, with very good results. Does anyone have any first hand knowledge about this procedure?
          Lazam

          Comment


          • #6
            Re: Progression of apical HCM and testing

            I have first hand knowledge only in that I had a myectomy at Mayo and I had mid cavity obstruction. They told me that it might be necessary to approach my obstruction from the apex in addition to approaching through the aorta, the traditional way. Dr. Dearani told me how they would make an incision through the apex, and take away the muscle that was causing a problem down in the center of my ventricular cavity. He said a possible complication down the line was arrythmia originating at the scarring at the place where the incision was made, but that because I would always be on medication, and because I have an ICD, he wasn't too concerned about this possibility.

            As it turned out, he was able to get at all of my obstruction from the aorta and he was not compelled to make a second incision through the apex. So, I don't have a report on how it worked. I can tell you though that I feel alot better after my myectomy than I did before,so if I was feeling poorly, and this option was offered to me, I would try it.
            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


            • #7
              Re: Progression of apical HCM and testing

              Originally posted by Tommy Mac View Post
              Hi, Tomsgal!

              I was diagnosed in my early 30's with apical HCM. My measurement went from 1.4 to about 1.8 in one year and this year we are skipping the echo since I'm not too symptomatic. I have a feeling I'm thicker, but who knows. We can continue to thicken and, at least in my case, the HCM limits my lifestyle but not much.

              Statistically speaking (per my doc), apical HCM patients have the life span that most closely matches the "normal" population. That's encouraging I think.

              One of the general themes that you have already read on this thread and you will continue to see throughout this board/site is that we are all different and HCM is unpredictable. The best thing we can do is to link up with a specialist, eat right and exercise (cautiously), and continue to LIVE our life. Unfortunately, there is no defined route of progression for any of us so we just have to try to enjoy the ride!

              Like I tell all others with apical HCM, please email me so I can add you to our growing list of apical HCM patients. We have a mailing list so we can keep tabs on one another and hopefully learn from overall information from the group.

              Good luck! And keep us posted!
              Hello Tom,

              My name is Benjamin. Could you add me to your list. I was diagnosed with asymetric apical HCM back in October. Thanks a lot. Let me know what info you need from me.

              Benjamin
              Benjamin
              www.icando.spreadshirt.com

              Comment


              • #8
                Re: Progression of apical HCM and testing

                Can you tell me what your mid-ventricular gradient was before your myectomy, and was there any outflow obstruction. Mine is over 100 with no outflow obstruction, due to its proximity to the apex, and my symptoms are minor.
                Thanks,
                Lazam

                Comment


                • #9
                  Re: Progression of apical HCM and testing

                  My outflow tract obstruction pre surgery was over 100 mmHG. Since surgery it has been between 8 and 25, depending on the echo.

                  I was never told any difference between my LVOT gradient and the mid cavity gradient. I think they were the same. I was severely symptomatic and am now mildly symptomatic, so there is a big difference in how I feel.
                  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
                    Re: Progression of apical HCM and testing

                    Adding to the list of apical HCM'ers, I was diagnosed about 20 months ago and was being treated only with beta blocker (25 mg atenolol). I had bradycardia, usually 35-42 bpm. It seemed to control the symptoms, but I still had occasional palpitations in the form of very hard pounding heartbeats, but not irregular in rhythm. I was very active, swimming 4-6 miles per day, six days per week. I also did some triathlons and had no reason to think this would not continue without incident. I was told this was all okay. About six weeks ago, I went into sudden cardiac arrest twice in two days. I now have an ICD implanted and was put on 60 mg Sotalol twice per day. So far, so good, though I have recently started getting the palpitations like before, sometimes they're uncomfortable. I don't feel quite right, but I can't quite put my finger on it, could be the lack of activity as I haven't been released to do anything but moderate walking. I am hoping it's just my body adjusting to the new meds and ICD.

                    Comment


                    • #11
                      Re: Progression of apical HCM and testing

                      Oh my! I'm really happy you were able to get back into rhythm and now have an ICD. How are you feeling now?
                      Reenie

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

                      Comment


                      • #12
                        Re: Progression of apical HCM and testing

                        It would be interesting to know whether those triathlons/long swims contributed to the enlarged cardiac muscle. I was diagnosed 15 years ago with apical hcm, and used to run marathons before that. Do you know what your gradient is and have you considered apical myectomy. My mid-vent gradient is over 100, and my symptoms are under control with meds, but I am considering an apical myectomy, and my surgeon thinks that post-op I might be able to return to running.
                        Lazam

                        Comment


                        • #13
                          Re: Progression of apical HCM and testing

                          Only the Mayo Clinic is doing apical myectomys and the've only done less than 100. you should have lisa get you in touch with the point person there for that to be evaluated.

                          s

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                          • #14
                            Re: Progression of apical HCM and testing

                            I don't know if the triathlons and long swims contributed or not. I'm still learning about this so I don't know what my gradiant is...didn't know to ask until I started reading this. I am due to have a stress echo in March, so hopefully I'll go more informed and be able to ask the right questions.

                            Comment


                            • #15
                              Re: Progression of apical HCM and testing

                              Continuing this discussion of Apical HCM, I had a Virtuoso DR ICD implanted a month ago, and my symptoms have been greatly reduced. The first interrogation of the ICD is due in about a month, and my EP DR is telling me that it is possible that the pacing function of the ICD may in fact substantially reduce the mid-cavity gradient. The interrogation will show whether this is so, but based on how I feel, I think that it is so. Will advise later. If the gradient is not reduced, the plan is to shut down the pacing function and retain only the Defib function,

                              Comment

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