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  • harryandleanne
    replied
    Awwww No way Rhoda

    Maybe Harry just does what he does coz he's a bit crazy, he's not here watching me now, so I can say that lol. He's been through many phases where he's felt like giving up, he totally ruptured his bicep about a year ago and was going to give up.once his arm wasn't black and blue, he just kept going ......that's not to say anyone else is weak or gives up easily either (I couldn't push myself the way he does).

    I just hope when it comes to him having his surgery, whichever one it is (either myectomy or ablation + pacemaker) his fitness will "pay off"

    Leanne

    Leave a comment:


  • Laoshur
    replied
    My 2 bits:

    About 4 years before I was diagnosed I got disgusted with my lack of exercise and my increasing weight. I had been in good shape most of my life, but a very busy life coupled with chest and arm pain when I exercised had slowed me way down.

    So I joined a gym. I went faithfully 3-4 times per week and got into much better shape. But I noticed that I felt worse than before. Also, for the first time ever I went from very low blood pressure to high blood pressure. When the doctor found the elevated pressure for the first time, he told me that I had to start exercising. I did not have the courage to tell him that I had joined a gym 3 months before and was using it faithfully. I could not believe it either, so I worked harder. My blood pressure continued to climb the more I exercised, in spite of taking both ACE inhibitors (now I realize they were the wrong solution) and diuretics. Then, I started noticing that the heart monitors on the treadmills seemed to be broken when I used them, but be OK when my daughter, who joined with me, used them. My heart rate would increase, then drop dramatically, and then suddenly soar to what seemed impossibly high levels. Finally, one day I laid down on a crunch bench to pretend to continue my workout, but actually to rest because I was feeling so bad. I heard my heart stop and came to a little later covered in cold sweat.

    Although it took about 1 1/2 years before I got an HCM diagnosis, it was that event and others like it that eventually led to my diagnosis.

    So what has happened since then? Have I given up? Well, no ... but in a sense ... yes. I try to work out and find I pay with chf symptoms for 3 days. I walked home (maybe 1 1/2 miles) from a restaurant last night and had to stop twice because the back and chest and arm pain were too great and my hands had swollen so badly that I could not bend my fingers. But, I carry a laptop, a projector, a boombox, and papers from my apartment, across the street and up a flight of stairs to many classes each week. When I came here, I carried these to the 4th or 5th floors, but we have told them that I cannot do that anymore as I used to have chest pain and feel faint through several of these classes each week. But I still teach an Ecology class for Master's students that is 3 1/2 hours long and I lecture for nearly 3 of those hours. (I found when I lectured for the whole time that I had chest pain, so now I make them make reports on current literature for the last 3/4 hour.)

    So, I do hope that if I get to meet some of you sometime, you won't reinforce my feeling that I am disgusting because I am still overweight and out of shape!

    Rhoda

    Leave a comment:


  • Sarah
    replied
    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.

    Leave a comment:


  • Lisa Salberg
    replied
    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

    Leave a comment:


  • Lfilzen
    replied
    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.

    Leave a comment:


  • nzelich
    replied
    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

    Leave a comment:


  • Lisa Salberg
    replied
    "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

    Leave a comment:


  • progers
    replied
    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

    Leave a comment:


  • harryandleanne
    replied
    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

    Leave a comment:


  • Lfilzen
    replied
    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.

    Leave a comment:


  • harryandleanne
    replied
    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

    Leave a comment:


  • Pam Alexson
    replied
    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

    Leave a comment:


  • harryandleanne
    replied
    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?

    Leave a comment:


  • Hotcurl
    replied
    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.

    Leave a comment:


  • Lisa Salberg
    replied
    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

    Leave a comment:

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