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  • Hello from sunny SoCal.

    My name is Richard. I was diagnosed with HCM around 1987 at age 40. I've always been very active in baseball, surfing, and keeping up with my son. I began having real problems in 1997, finding that I was having some chest pain and shortness of breath when I was out for my evening jog.

    In the summer of 1999 I was to the poiint where I was having problemgoing up stairs or walking for a block or so. My cardiologist told me that the beta blockers weren't doing the job any longer and we'd have to do something structural and make some changes. He told me about the open heart option and then mentioned that there was a new procedure being tested in Houston. He made arrangements for me to go in October.

    By the time I got to the Baylor Heart Institute in Houston I couldn't walk 50 yards without angina and shortness of breath. I met with Dr. Robert Spenser and he made an evaluation of my condition, including the always exciting "stress ecocardiogram". The next day I came in and he said that I was a good candidate for an alcohol ablation. He explained the procedure and told me that the would be giving me a heart attack on the operating table. I didn't really understand what that meant. I agreed and went into surgery on October 30, 1999. I was the 131st person to have the procedure.

    I woke up in ICU with the nurse hooking up an IV and I had tremendous ch"No, you just had one". When I woke up later my first impression was that I could "breathe" differently. I didn't realize that I had been breathing differntly when I was having all of the chest pain and short breaths just became normal. Now I was taking deep breaths without any pain.

    The next day they put in a pacemaker, and the following day I waled out of the hosipital, went across the street to Rice University and walked around the track. No pain, no shortness of breath.

    I'm 58 next month and I just finished a 30 minute run this evening after work. I haven't had any symtoms, at all, since my procedure. My pacemaker has been set on standby since spring of 2000.

    This changed my life. And I made huge life changes because of it. I'll tell you about that if you're interested, but I'll say that I am a big fan of Dr. Spenser and this procedure.

    Richard Cornelius
    San Diego

  • #2
    Whoah Richard thanks so much for posting your story. Harry is on the verge of deciding between a myectomy and alcohol ablation. Its great to hear such a positive story. We are leaning towards the myectomy even though the recovery is much harder. Please keep us updated on your progress. One of Harry's biggest concerns is his capacity for exercise after either procedure, he has been bodybuilding for 24 years (apparently one of the worst things to do for HOCM).

    Was there much pain involved in the ablation treatment? (Harry is a sook lol)

    All the best - onwards and upwards for you

    Leanne and Harry

    Comment


    • #3
      It is always nice to hear that people are helped by various treatments. It is a very careful choice that must be made for each person.

      A careful exam of ones anatomy by someone well trained in HCM is always a good idea before choosing a treatment option.

      There is a bit of debate over the activity of running/jogging with HCM, many experts believe it is not best for your heart and suggest walking instead.

      I wish you continued good health!

      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
        My doctor cleared me, three years ago, for any activity. I run and walk, and usually swim 2-3,000 yards twice a week. I feel great and I'm forever thankful for Dr. Spenser.

        Comment


        • #5
          The issue over exercise and heart disease is very confusing and I have to wonder if the "experts" really know. I've said many times Harry was told to give up weights due to having HOCM but he continued, call it gut instinct and now they tell him to keep doing what he's doing because its been working (his sister died from HOCm at 41, Harry is 54). Harry lifts 200 lbs + and according to what I've been reading this should have killed him by now. I don't want to sound like a know all and I know everybody is different but I vhave to wonder if people have been scared out of doing physical activity and this is to their detriment.

          I don't have HOCM but come from a family with mucho heart probs. Many years ago, when I began weight lifting I read that its very bad for people with high blood pressure. I was put on bp medication in my late 20's. Approximately 2 years after I began weight lifting my blood pressure dropped. I am now 44 years old and not on any medication (the only one in my family who isn't) and my average reading is 120/70......I wish someone could exlain to me ....why is it so?

          Comment


          • #6
            I am not supporting the, Maybe the experts don't know statement, I am just choosing to comment.

            There certainly is enough data out there and enough sudden death incidents to back up the experts reccomendations as to why it is believed that burst exercise and heavy weight lifting could result in ones sudden demise. I think it comes down to personal choice. Some will chance it and others will ere on the side of caution.

            Always remember that with HCM there is dispersed myocardial dissarray. An activity that one chooses that stresses the heart and forces the rate above " safe " levels could result in a potential fatal arrythmia.

            It is always ones choice to decide how they would like to consider the guidelines and or the risks and live or possibly die by them as they consider the, " could result " advise. All it takes is one fatal arrythmia pattern to kill an individual.

            Now saying that, we will always meet doctors who will say continue as you are doing . Many of us have already gone that route . To assume that an HCM individual did not live a very active and physical life as a result of their HCM is a very big assumption. I believe it is the other way for a great deal of us. We were very active and very physical and we failed as our hearts failed. We were , many of us told to push harder and work harder, get more fit like we had always been in the past. One problem ; a non - diagnosed failing heart was now standing in the way and stamina and endurance were no longer a part of the picture. It was some of these same doctors that pushed us down the path of mis- diagnosis and improper care and management of a then not seen " heart " problem. Mis- management and mis- direction for some has certainly led to the more complicated course of the disease and yes to sudden death of many individuals , whose doctors did not see the HCM or its severity in the first place .


            Just wanted to broarden this topic out more, and allow a look at the bigger picture, food for thought.

            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

            Comment


            • #7
              Thanks for that perspective Pam........I see your point, its almost a luck of the draw thing....I know I am doing the right thing for myself, just hope Harry is too. I guess his prognosis will remain unpredictable and we can only continue to keep up what we're doing as it does seem to be helping.

              Leanne

              Comment


              • #8
                ablation, HOCM and exercise

                I too had great success with alcohol ablation, I was patient #206 of Dr. William Spencer's and am now 5 years post procedure. I am now 49 years old and vigorously exercise 3-4 days/week for at least an hour. I schedule my work around my favorite aerobics classes and although I'm certainly no star at the gym, you couldn't pick me out of the group as having any kind of heart condition. Prior to my ablation, I couldn't get up the 12 stairs in my home without stopping at least once. I should add that always wear a heart monitor and don't let my heart rate get above 125.

                From all I've read, sudden death tends to run in families, which strongly suggests a genetic link. I've read the other warning signs and reasons to implant an ICD and yet, my MD at the University of WA (Dr. Catherine Otto) states there are no clear answers out there for sudden death predictors and HOCM. She is a world renowned cardiologist.

                That said, we ALL know the reasons to exercise. They are numerous and lack of exercise is a main contributor to all kinds of life threatening conditions and diseases. You name it, stroke, heart attack, cancers, diabetes, high blood pressure, etc., a sedentary lifestyle has been shown to contribute to all of these conditions in a huge way.

                I'm adopted and I was encouraged to open my adoption file to see the pattern of HOCM in my family history. I did find early/sudden death, but I also found major obesity issues. After opening my file in 1999, my half brother died suddenly at age 39. No autopsy was done, but he weighed over 440 lbs. My maternal uncle had also died at 39, and also was 400+ pounds. My birth mother is 260 lbs. (with two hip and two knee replacements,) you get the picture. Type two diabetes, sleep apnea, joint replacement, stroke, etc. are all on my mother's side and go hand in hand with chronic obesity. I believe now that if I would not have been adopted, I would have died before 40 and weighed at least 100 lbs. more than I do now (I'm 5 ft. 8 inches and weigh around 153, so I'm not thin by any means!) But with a pre-ablation gradient of over 100 and if I had carried 100 extra pounds, who knows how long I would have survived...?

                Most of America makes excuses not to exercise for some reason or another. And, as a nation, we are paying the price in more ways than we can count. To me, it only makes since to lead as active of a lifestyle as possible. The payoff: a stronger heart, stronger bones, less likelihood of most diseases known to man, to say nothing about stress management. Obviously, if you are suffering from CHF, and/or your MD recommends you don't exercise, then exercise is not an option. But, for many people, HCM/HOCM can also be a crutch to avoid the gym and avoid breaking a sweat. For me, an active lifestyle, I believe, has literally saved my life.
                Laurie

                Comment


                • #9
                  Laurie

                  Harry believes that if he hadn't kept up his gym work, he would be dead by now. What a bodybuilder friend of mine told me is that bodybuilding is so good for the heart because it increases vein size. Makes sense to me. I think there are definitely two schools of thought on the matter.

                  Thanks for your post (very encouraging). Keep up the great work with your aerobics.

                  Leanne

                  Comment


                  • #10
                    Laurie,

                    UW Med Center is where I was diagnosed with my HOCM. Say hi to Dr. April Stempien Otero next time you visit.

                    Cheers,

                    Paul
                    Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                    Comment


                    • #11
                      "But, for many people, HCM/HOCM can also be a crutch to avoid the gym and avoid breaking a sweat." Quote from Laurie

                      Laurie, I find this statement untrue and frankly a bit insensitive. I have spoken to thousands of people with HCM over the past 10 years, likely close to the 5000 mark at this point. Your statement is simply your opinion and not based on what people with HCM really feel and how they really live. While some people may be a bit afraid of pushing it too far ALL people I have spoken with try to live the most active life they can, and most are doing so without major limitation.

                      It is also well advised by doctors who specialize in HCM that there should be limits as it is not good to over work the heart and fluid loss can alter one hymodynamic state to a dangerous level.

                      Activity is important. Seditary lifestyles lead to many other problems and that can actually make HCM symptoms worse. But how much exercise and what type of exercise are important individual choices.

                      NOBODY with HCM should be pressured to participate in athletics to prove that their HCM is not a "crutch".

                      Best wishes,
                      Lisa Salberg
                      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


                      • #12
                        I’ve been quite interested in this topic for some time now. I will preface this by saying I've only been recently diagnosed and am not an expert nor claim to be. I've read previous posts about this subject and realize that this is a very touchy one.

                        I do know, however, that up until pretty much the day I was diagnosed, I was riding my bike and playing basketball nearly everyday. I felt great! After being diagnosed I was told to quit everything. I felt horrible! I attribute this mostly to being put on meds and the initial, overwhelming idea, of my life being over, but definitely believe, IN MY CASE, lack of exercise played a role as well.

                        I just recently have been released to ease back into exercising by two different doctors (a competent cardio with a lot of HCM experience at Mayo, and a very reputable EP). Although I am not playing basketball anymore, (just too risky right now) I have started riding my bike again and am trying to keep my 20ft jumper from getting too rusty. I haven’t felt this great in months.

                        I’m not saying that everyone should go out and ride 10 miles a day and that is the cure all. My symptoms don’t seem to be as bad as a lot of those here and I am still in good shape. FOR ME, I've found that a positive outlook, and keeping my body and mind in harmony is the best thing I can do. Although we should definitely follow what our doctors advise, I think there also needs to be something said for those of us that have found peace in the feeling of the ball flying off our fingertips or feeling the wind on our faces during a bike ride or jog to clear our minds as therapeutic. IN MY OPPINION, these things are equally therapeutic for those of us who enjoy them and have been cleared to do so. I honestly feel a little bit offended by the underlying assumption by some that those of us who choose to exercise a bit more vigorously, are living our lives recklessly. I would never do anything to my body I felt was a detriment or went against what my doctor said I am capable of doing. I am probably more in tune with my body than most, and have none of the 5 risk factors associated with ICD implantation.

                        I do reiterate that these are my personal opinions about my personal situation, and in no way encourage anyone with HCM to begin an exercise routine with out the consent of a knowledgeable Dr. I would most definitely agree with Lisa in saying “NOBODY with HCM should be pressured to participate in athletics to prove that their HCM is not a "crutch".”

                        Thanks much for letting me get my perspective on the issue out there. This is, as I understand, a place for all HCM’ers to express there thoughts and gather information. Thanks to all who contribute.

                        Peace,
                        Nick

                        Comment


                        • #13
                          exercise and HOCM

                          My remarks regarding exercise are simply my opinion, based on my own experiences. I should have said " we all can find excuses to avoid the gym and should not use HCM/HOCM as a crutch to avoid an active lifestyle, unless it is contraindicated by our MD."
                          For me, HOCM was a huge wake-up call. I changed my entire lifestyle after my diagnosis. After opening my adoption file, it became crystal clear to me that those changes had most likely saved my life.
                          Laurie

                          Comment


                          • #14
                            Laurie,
                            Point taken and thank you for your responce. It is important to talk about these issues and get a clear picture of what people are doing on a dailiy basis. We have much to learn about the heart with HCM and what happens to it in different situations. WE KNOW that exercise is good, but for some it is hard and we need to be sensitive to that. Nick brought up a critical point - ATTITUDE!!! - a positive attitude and a positive outlook is very important. Sure we can all have times we feel a little down about having HCM, heck it is not something we asked for now is it! But we can not allow ourselves to live our lives in fear or in self pity - life is simply too short with or without HCM!

                            As always I wish you all well - have a great weekend!
                            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


                            • #15
                              tough

                              I don't think people who exercise "vigorously" are thought to be reckless by the board. I think that there is just a lot of concern which can be taken the wrong way or perhaps not be expressed well.

                              This is topic is a long-running "hot button" in the HCM community at large for many reasons. The bottom line is that

                              1. we are all entitled to our opinions
                              2. medical and exercise decisions are between doctor and patient
                              3. there may be people who use HCM as an excuse not to do stuff, but they are not the majority by far and it isn't fair to generalize.
                              4. people ignore their doctor's advice all the time. they have to live (or not) with the consequences.
                              5. Much research has shown that humans are walking self-fulfilling prophecies. If you think X is going to happen, it probably will. This cuts both ways. If you think exercise saves you, it may. If it will kill you, it may.
                              6. Read "Anatomy of an Illness" by Norman Cousins.

                              and take care of yourself. whatever that means to you.

                              Comment

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