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Quote: You're just "out of shape"

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  • Quote: You're just "out of shape"

    Hi, all,

    Did you have shortness of breath with exertion before you were diagnosed with HCM? If so, when you told your health care provider were you told you were simply out of shape and needed to exercise more? What did you do about it?

    It happened to me. I believed my health care providers and it was almost 20 years with continually-worsening symptoms before I was diagnosed. I've seen some references here which imply others of you were also initially told you were simply not in good physical condition. Then I read Lisa's post about Charles--it seems his only symptom was shortness of breath. I guess I'm wondering if there's a need for health care providers to take the symptom of shortness of breath more seriously in people who seem to be otherwise healthy. . . .

    What happened to you? What do you think?

    Pat

  • #2
    Re: Quote: You're just "out of shape"

    I think you are right - - However we need to get to the doctors to pay more attention...with everything they have to do in a medical visit it is hard to add more to the list of things to do in 10 minutes or less....
    We need to re-evaluate our entire medical system and get the attention OFF of the paperwork and back to the patient!
    Sorry ... I am venting!
    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: Quote: You're just "out of shape"

      Pat,

      I still get told i'm just 'out of shape' even after being diagnosed with HCM. I just can't seem to be able to get the concept of HCM through anybody's head, friend or family. One friend in particular wants me to go back to lifting weights with him and says i'm just using this 'heart thing' of mine as an excuse not to do it. It's really annoying to be taunted by another forty year old like i was back on the playground again in gradeschool. LOL.

      Yes, i used to lift weights all the time. And yes, i did have HCM at the time and didn't know it, and obviously i'm still alive today. What i can't get through his thick head is that all those years i was lifting weights, i was very lucky not to have had a problem.

      It seems like everyone's a darn specialist, and everyone knows what's better for us than we do ourselves. I'm so frustrated i'm just going to give up even trying to explain HCM to anybody.

      Oops! Guess it was my turn to vent

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

      Comment


      • #4
        Re: Quote: You're just "out of shape"

        Jim, maybe you can suggest to your friend that you do aerobic while he does isometric exercises. Exercise together, but you use a bike or treadmill while he lifts weights. Seems a shame to miss an opportunity for friendship activity if you are in a place that offers different exercise equipments. We've heard that "out of shape" line more than enough times too. That just doesn't hold water when a person seems to be in shape one day and out of shape the next day. Activity tolerances vary so much from day to day with HCM. Many people do become "deconditioned", but it seems to have become the easy explanation for all. Linda

        Comment


        • #5
          Re: Quote: You're just "out of shape"

          I think we all look for the easy answers in life... and it is easy to say that a person is "out of shape"... It is hard to admit that there is a greater problem... even more so when it is someone you care about..OR in the event you have nothing much to offer to make someone feel better. This may explain why friends and medical providers find it a comfortable responce...and in all honesty it is likely partly true...however it is only a piece of a very large puzzle.

          Best to all,
          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
            Re: Quote: You're just "out of shape"

            Yes, I was told many times that it was somethingelse. I was diagnosed as anxiety attacks with the possibility of asthma.

            I do remember in ROTC I would bust my hind-end to keep up with the other cadets. Running I just could not do. At the time my instructor thought I was not training hard enough but I ran every day and was on five teams. The last thing anyone could call me was out of shape. Unfortunately, I could not keep up, after the end of the run everyone else got to go in but I had to do push-ups for my keeping the team behind. (Since, I was fourth in command of my unit I should not be last.) Needless to say I had great upper body strength but it very well could have killed me too. Many years after the fact I talked to my instructor about the reasons. He was quite shocked and said he would have felt responsible if something had happened to me. It would be nice if strenous activities like ROTC in high school would have physicals like the athletic programs. But I am sure it will take a cadet dying on the field to get them in gear to do something for the students safety.

            Just my venting as well!

            mary S.

            Comment


            • #7
              Re: Quote: You're just "out of shape"

              Thanks for your comments so far. You have made some points which I find enlightening. I have found a few friends quite willing to learn about HCM and understanding that although I may look like I'm not in shape, it's not a valid explanation. Like you, Jim, I have simply given up making explanations to most.

              In looking back, though, I've been most disappointed by the brush-offs I got from several health care providers. Last year Dr. Shah even challenged my acceptance of the brush-offs, "How could you believe you were out-of-shape when you'd been hiking the Grand Canyon?"

              Lisa, you're right that health care providers are now overloaded by loads of things which are of minimal or no benefit to patients. I agree that the system needs to be changed. . . . In the meantime--and considering your story which is downright frightening, Mary--maybe it's another piece of the public education component which needs to be strengthened. If people recognize symptoms for what they may be, they're more likely to be assertive in requesting diagnostic procedures.

              Pat

              Comment


              • #8
                Re: Quote: You're just "out of shape"

                Pat - When I was in school, I always hated P.E. Especially running. I was always more winded than others. My P.E. teachers just thought I was out of shape and basically just gave up on me. It is sort of nice to find out now that there was a good reason for it. I half wish I could go find all of those teachers now and tell them that I have a heart condition that I didn't know about then, but discovered 15 years later.
                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


                • #9
                  Re: Quote: You're just "out of shape"

                  PE nightmare - A very true story and one I have not share before.
                  I was a freshman in high school - I knew I had HCM and at that time I was told I could participate in gym class to my own limits. I ended up with the football coach and overall killer jock as my PE teacher, a man who had a very long history of not having anytime for those who did not particiapate in as many sports as possible... and who seemed to really dislike girls in general.
                  At the start of the school year I explained I had a heart condition and would do my best but I may need to stop or sit out from things from time to time. He smiled and did not seem to have a problem.
                  3 weeks into the school year we were doing warm ups -- I did the jumping jacks, I did the sit ups...I could not do more than 1 push up...why - I had nasty chest pains - I was laying on the floor in pain face down waiting for the pain to pass. THEN I feel a FOOT under my rib cage! He attempted to kick me up off the floor while making fun of me for being a "wimp". I was shocked and angry -even with the chest pain I got to my feet and walked away from him and headed for the seats at the side of the gym..he yelled at me that he was not going to "let" me sit out and to get back there or he was going to give me a "0" for the day. By this point the chest pain had faded but I was still in pain...he had bruised my ribs! I turned to tell him that I was not going to participate that day when to my surprise EVERY girl in my class was following me to the chairs...and a few of those "jersey girls" were giving him ****.
                  WELL that started a string of events that lead to me being sent to the office, all my friends taking "0's" for the day, my mother almost loosing her mind, my dad visiting the principal, guidance office and the gym teacher...
                  So was a 14 year old girl (a size 2 at the time), weighing about 95 at 5 foot 2 inches "out of shape" or did someone not understand the signs of heart disease!
                  I have never forgotten this event and I make sure that the teacher will not forget... I have been back to the school many times and provided the PE dept. with information on HCM. Oh and as for this teacher -he is still there - in my senior year book I wrote a note to him "Wild Bill...I will never forget" I meant this as a reminder to him that I will be watching him and his actions. He has tenure which protects him to some level...however he has run into some trouble with a hazing issue and some other girls have had hard times with him. He is set to retire soon - God willing it will be soon - my event happened over 20 years ago...I still remember the details like it was yesterday.

                  Well if that is not venting I do not know what is
                  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


                  • #10
                    Re: Quote: You're just "out of shape"

                    A similar story to all of yours. In high school I was pretty good (puffed chest) in track and field, but only for the short distances, 100/200 metre sprint/hurdles, long and triple jump, But when it came to cross country running, I was terrible. My coach's couldn't understand it and neither could I, they would say how can you do the other well and stink at cross country. I could go about a mile hit a wall and have to practically walk the rest of the coarse.
                    Now I know why.
                    Talking about doctors not really realizing. My HCM doc says only moderate exercise, so I cycle moderately.
                    My GP who is a fitness nut and knows I have HCM constantly challenges me to ride harder. I say ya great and then go about it as instructed by my HCM doc.
                    It's a matter of knowing your limits and working to the best with what you have.
                    Sometimes it takes many years to learn.
                    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                    So if you are capable of thought then you are capable of great things
                    Good luck and stay well.
                    Glen

                    Comment


                    • #11
                      Re: Quote: You're just "out of shape"

                      I have received this message for 10 years. You are over weight and out of shape. Just get into a routine. I have never been able to tolerate excercise. Now I know why. I do feel better knowing it wasn't just me, but now what can I do and not jepordize my health?
                      cbrown

                      Comment


                      • #12
                        Re: Quote: You're just "out of shape"

                        Originally posted by cbrown
                        I have received this message for 10 years. You are over weight and out of shape. Just get into a routine. I have never been able to tolerate excercise. Now I know why. I do feel better knowing it wasn't just me, but now what can I do and not jepordize my health?
                        My suggestion is for you to see an HCM specialist and they will work with you to set up a routine that both of you can live with. (no pun intended)

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Re: Quote: You're just "out of shape"

                          That kinda happened t me... i started getting the chest pains in 8th grade and they have been getting worse until this summer ( i was diagnosed just 2 days ago. still kind of a shocker to me. dont really know whats going on.) but anyway my P.E. teacher would tell me i was just out of shape and needed to run at home because i couldnt finish the last lap of the mile. now i cant even go a minute without stopping. drove me nuts and now that they have told me whats wrong im just frustrated. anyway so yeah i know what you mean...
                          ~janelle*
                          \"The heart swells at the magnificance\"

                          1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                          Comment


                          • #14
                            Re: Quote: You're just "out of shape"

                            I have a story too. Before I started school, that's 50 years ago now, our family doctor said I had a pronounced heart murmur, but he told my mother 'Ignore it. If you favor him for it, he will never grow out of it.'


                            I was raised on a farm and I did a lot of hard physical chores every day, but for the world I could never keep up with kids that did not get half the exercise that I did. I always straggled in last in PE and there I was, a strapping farmboy who lifted 50 pound bales of hay, shoveled manure, and moved 100 pound sacks of feed, in the back row with the boys who had arms like little twigs and pale sunken chests. I never could get beyond the tenth pushup or the 15th sit-up.

                            I have had chest pains all my life. I thought they were the sideaches that all the guys occasionally got after exertion. It never occurred to me that it might be significant that they were grabbing their abdomen while was feeling like I had been stabbed in the chest.

                            I was finally diagnosed with HCM about 2 years ago when I had gained a lot of weight and could no longer walk around the block without pain. My GP sent me to a cardiologist, who I now think of as my best friend. He did an echo, and I was diagnosed. In a sense, it has been a great relief to me to make sense of so many years of trying to keep up and never being able to.
                            Marv

                            Comment


                            • #15
                              Re: Quote: You're just "out of shape"

                              Well, Lisa, my P.E. horror stories are worse than yours, but then again, I am older than you and therefore, my high school experiences in the 50's were something out of the middle ages.

                              We had an old abusive woman as the only gym teacher. I would attempt to run and pass out and faint on the field, only to feel her prodding foot under my rib cage, and her screaming at me that I was a quitter. I also have spina bifidq and a tethered spinal cord. She would see me doing sit-ups and scream at me that I wasn't doing them correctly and push my back forward with her foot, which also caused me to pass out and then be home for a week in one of my endless painful spinal cord crisises. My mother arranged for me to get endless gym excuses on the basis of allergies. This "teacher" would see me at the other end of the hall and scream quitter at me because I was not in her classes. I frequently wound up going to the principal's office to complain about her, and I told my parents that I would stop going to school if I couldn't get out of her classes. If I had not obtained excuses, I would have suffered this abuse 5 days a week for 6 years.

                              Then I went to Syracuse University. At that mediocre place you had to have 4 semesters in Physical ed. with a B to obtain your B.A. ----I tried but couldn't possibly fulfill their standards. I was working for the Dean of Liberal Arts part-time and even he couldn't help me. Of course I was not diagnosed with either condition, not until I was in my 50's. So I had to find a University that did not demand a P. E. requirement to transfer to. I'll never forget all the nasty reactions people gave me when I'd explain that I couldn't do P. E.

                              Fortunately for me, after 2 years at Syracuse, I went to Norway for a year. I was in a small school that had a program for preping gym teachers, and they took me in hand and showed me how to develop my limited capabilities. They were accustomed to working with people who were not particularly talented, and they thought I was a weak American anyway. In Norway, the smartest kids were the gym teachers, unlike here. There was more emphasis on endurance and arctic survival in the training, and all Norwegians were expected to toughen themselves up to live a life surrounded by snow for most of the year. They truly changed my life and I regret that I can't impart their message to others very well. But it did take 10 months for them to get through to me, so I shouldn't be surprized by how backward the USA continues to be in these matters. When I returned from Norway and would jog in the park in NYC, no one knew what I was doing, and everyone thought I must be running away from a mugger----- at least that has changed!

                              I finished my B. A. at Columbia University, with no P. E. required----- I continued to train at the low level I was capable of, and I do so now---- I'm actually in extremely good condition, particularly considering my three disabilities, HCm, tethered spinal cord and diabetes. but still, the first snap judgement people make of me is that I'm a person who really doesn't care about myself enough to diet and exercise---I find this truly maddening! But that is the way our culture is. Thiness is considered more important than strenght and endurance. and everyone feels that if you just do the right thing, all your problems will dissolve---Haha!

                              So here I am venting too------

                              Comment

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