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  • #46
    Re: Using weights

    We're glad you keep coming back! I don't know about others and their first impressions of HCM, but our doctor scared us more than this site regarding activity and HCM. They advised my husband not to ever get his heart rate over 110, not to do more than walk, if he felt the least bit short of breath to stop what he was doing and rest, and the list goes on. One of the first things they told us was about athletes dying with HCM never having known they had it. This site has given me a much more balanced view of HCM. I'm hoping that most people can get a balanced view as well. You're right, we don't want to scare anyone into becoming a couch potato. On the other hand, we want them to know that a pickup game of hoops might not be in their best interest.

    Reenie
    Reenie

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

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    • #47
      Re: Using weights

      Agreed!!!!

      Comment


      • #48
        Re: Using weights

        Originally posted by Reenie View Post
        We're glad you keep coming back! I don't know about others and their first impressions of HCM, but our doctor scared us more than this site regarding activity and HCM. They advised my husband not to ever get his heart rate over 110, not to do more than walk, if he felt the least bit short of breath to stop what he was doing and rest, and the list goes on. One of the first things they told us was about athletes dying with HCM never having known they had it. This site has given me a much more balanced view of HCM. I'm hoping that most people can get a balanced view as well. You're right, we don't want to scare anyone into becoming a couch potato. On the other hand, we want them to know that a pickup game of hoops might not be in their best interest.

        Reenie
        A pickup game of "jogging up 2 flights of stairs" gave me my first shock. I like to think I can shock myself at will now. When I get angry and yell I get shocked. When I rush up the stairs I get shocked. When I run to the car in the rain I get shocked. (That is very frustrating when I don't have an umbrella and I need to get to the car fast.) And finally when I am sitting and doing nothing I almost got shocked. So I know my limits. It seems like any situation where I need a sudden burst of energy would be the perfect time that I get shocked. Im starting to get used to all this electricity going through my body. Its kind of like when boxers punch a bag so much there nuckles get bigger and there pain thresh hold goes up.

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        • #49
          Re: Using weights

          Craqbin - It seems to me that you need to have your settings adjusted. You should not be getting shocked when going about ordinary daily activities. They should either move your settings up, or you could go on a beta blocker or other drug that would lower your heartrate. My own ICD is programmed not to shock me unless my HR gets over 200. My beta blockers keep my HR below 100 anyway, no matter how hard I exercise.
          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


          • #50
            Re: Using weights

            Originally posted by Cynaburst View Post
            Craqbin - It seems to me that you need to have your settings adjusted. You should not be getting shocked when going about ordinary daily activities. They should either move your settings up, or you could go on a beta blocker or other drug that would lower your heartrate. My own ICD is programmed not to shock me unless my HR gets over 200. My beta blockers keep my HR below 100 anyway, no matter how hard I exercise.
            The sad thing is was they were all necassary. I get V-tachs very easy. Sometimes I think my time has come and I cheated death do to good old technology. I can feel it too when my V-tach starts all the bloodflow stops and you feel like you just fall down. Then shock and blood starts to flow and you feel better. Mine is set for 180 because they said I could have a v-tach in the 180-190 range and that could lead to death. If thats nots true I don't know why they don't move it up. My brothers is set to 200 I think. I might ask for a second opinion. I am on rythmol and I think that is a beta blocker. I know it lowers my heart rate but I don't know how much. I see my cardiologist in a few days I will ask.

            I just saw a good aerobic heart rate thing and for my resting rate 87-88 bpm a good target range would be 150-190. So they have mine set at 180. Maybe 10 extra bpm would help but they have my vtachs clocked in at the 267bpm range so I don't know if adding 10 bpm would actually help me.

            UGGH I want mine set at 200 so bad though. heh. Does anyone know if a vtach in the 180 -200 range could happen and if so could it kill you. I don't like to be B.S. too.
            Last edited by craqbin; 10-13-2006, 05:17 PM.

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            • #51
              Re: Using weights

              Who is following you? Have you been seen by an HCM center? I have to agree with Cynthia in wondering if your settings are correct because you should be able to pace yourself out of V-tach rather than having to get shocked out?? What kind of device do you have? I am wondering if a 2nd opinion from an EP may yeild some differences in opinion?

              Just my 2 cents (hey what ever happen to the Cents symbol on the keyboard?? I remember it use to be there in typing class - did Bill Gates steal our cents??)
              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


              • #52
                Re: Using weights

                Originally posted by Lisa Salberg View Post
                Who is following you? Have you been seen by an HCM center? I have to agree with Cynthia in wondering if your settings are correct because you should be able to pace yourself out of V-tach rather than having to get shocked out?? What kind of device do you have? I am wondering if a 2nd opinion from an EP may yeild some differences in opinion?

                Just my 2 cents (hey what ever happen to the Cents symbol on the keyboard?? I remember it use to be there in typing class - did Bill Gates steal our cents??)
                No I haven't been seen by a HCM center. I go to Eastside Cardiovascular clinic in Roseville Mi. I would like to go to a HCM center but my insurance is medicaid so I don't know if they would take it. Well molina medicaid.

                I have a Guidant AICD Model T127. First Lead is Model 0180 and the other Lead is model 4472.

                I don't know if you know Dr. Luis A Pires but he installed it into me. Probably not the correct terminology. I like him and hes pretty good. No problems so far.

                Oh it does try to pace me out of it first but it never does.

                Hahahah I take my cents back in some other ways. Very funny LOL

                This is my doctor does he work with HCM Clinics here is his stats?
                http://www.stjohn.org/physiciansdire...lic=4301063639

                Thanks for the suggestions
                Last edited by craqbin; 10-13-2006, 10:46 PM.

                Comment


                • #53
                  Re: Using weights

                  Hi everyone,I finally have figured out how to login.I love to hear that people with so many health obstacles can overcome,and enjoy their lifes.I was also born with spina bifida,and slight curvature of the spine.I have always had back and sciatic nerve pain since I can remember.I was not crippled with the spina bifida so Imust consider myself lucky.Since I WAS DX with hcm and the past few years leading up to it.have been worse.I would love to lift heavy things when I was younger I could bench press 225lbs for sets of 12.I remember running miles,and swimming laps on a regular basis.I even boxed in the pal,though I wasnt to good(I would get hit to much)I was still in great shape.I miss doing all these things and the truth be known if I could still do them I would.I just cant.yes I can walk for 4-5 miles thank God.and swim a slow 10 -15 laps at the pool but that is the best I can manage.lifting heavy stuff scares me the most.about six mos ago I lifted a couch up a flight of stairs,that was something In The past I could do with ease.butwhen Iput it down I felt my heart in my throat and had to lay down without moving for the rest of the day.It might be we have variations of hcm.I was told I was not obstructed,but that I have concentric hypertrophy.my septum was 2.7cm and the left ventricular wall is the same.I GET short of breath when I take on to much.I pray that some miracle will happen and I will be able to run again like before or lift heavy weights.but for now Im just have to be grateful for what I can do and try and stay out of the self pity trap.good hearing you guys again take care and be well mike
                  One day at a time.

                  Comment


                  • #54
                    Re: Using weights

                    Originally posted by michael obrien View Post
                    I pray that some miracle will happen and I will be able to run again like before or lift heavy weights.but for now Im just have to be grateful for what I can do and try and stay out of the self pity trap.good hearing you guys again take care and be well mike
                    yeah I agree. I was in a little self pitty but the more I think it over the more I think I deserve my disease heh. Well nobodies perfect

                    Comment


                    • #55
                      Re: Using weights

                      Hi everyone,hi craigbin.I was thinking about what you said about deserving your disease,and my first reaction was us having hcm wasnt a result of life style choices.This thought usually quiets my mind when Im caught up in the why me's.Then I thought of a friend of mine he is one of the nicestguys u could want to meet.He always had a problem with hi weight,and at 31 years of age was dx with dialated cardiomyopathy.he is on full disablity has trouble getting around and takes more meds than me.he also has a wife and three kids.He takes full responsiblity for having his condition.he has told me no one forced him to eat all that lasagna etc.But think about it so many people make bad lifestyle choices in teens and twenty somethings and many of them seem to get away with it,until much later on.
                      In his case his disposition to obesity was a major strike against him.I guess it doesnt make a difference in the hows and whys,It comes down to how we individually cope with our circumstances.some people cant accept the hand they have been dealt.Others revel in adversity.I tend to be some what willy nilly depending on how I feel.If Im really bad its please God help me all day.If I feel ok I try and get lost in what Im am doing for that day.But Im always aware of the hcm.wheter its pvc's or chest/back pain shortness of breath.or just constantly reminding myself not to push myself to much.I can push myself mentally further than my body can keep up with.Hcm isalways their.Im lost in what I wanted to say ,but just to let you know I DONT THINK ANYONE DESERVES TO BE SICK.Even people suffering with aids who led high risk lifestyles to people who suffer genetic maladys .sickness is not a punishment for moral ineptitude.(some may differ with me on this).We all must face the uncertainty of each new day and try and be grateful even in the face of our limitations.what a difficult task.Im pulling for you-welcome aboard.
                      One day at a time.

                      Comment


                      • #56
                        Re: Using weights

                        Well said Mike!
                        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


                        • #57
                          Re: Using weights

                          Mike, you are right there is not one of us that deserves to be sick. With HCM most of us had no choice. It is genetic. Even though I was passed this gene from my Dad he will always remain my dearest Dad and I hold him no ill will. I don't think God makes us sick but he sure gives us the strength to handle it. Some just cannot handle chronic illness as well as others, no matter what the illness not just HCM i.e diabetes, MS, Lupus, etc. . I am sure everyone has a little Why Me time, but why not me is another angle. I hope this makes sense.
                          Midge

                          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                          ICD&Pacemaker 1996
                          Heart transplant March 19, 2004 @ Mayo Rochester
                          Mom of Kaye.

                          Comment


                          • #58
                            Re: Using weights

                            Mike - where have you been?? I have missed you!!! Glad to have you back on the board.

                            Craqbin - Re your doctor, no he is not an HCM specialist he is an electrophysiologist - the electricians of the cardiology world. We recommend that you have cardiologist wotking with the EP to help guide your care. We can assist you in getting evaluated at an HCM center regardless of what kind of coverage you have - give the office a call.

                            Best wishes,
                            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


                            • #59
                              Re: Using weights

                              I think of HCM as being both plumbing and electrical. The plumbing is the thickness, obstruction, blood pressure, ejection fraction, stiffness... anything involving how well that blood is moving through your pipes. The electrical is the wiring to the pump, your rhythm, and anything affecting how well the electrical signal is getting to your ticker. They are two separate but equally important issues, and both require the care of an HCM specialist.
                              "Some days you're the dog... some days you're the hydrant."

                              Comment


                              • #60
                                Re: Using weights

                                Originally posted by michael obrien View Post
                                Hi everyone,hi craigbin.I was thinking about what you said about deserving your disease,and my first reaction was us having hcm wasnt a result of life style choices.This thought usually quiets my mind when Im caught up in the why me's.Then I thought of a friend of mine he is one of the nicestguys u could want to meet.He always had a problem with hi weight,and at 31 years of age was dx with dialated cardiomyopathy.he is on full disablity has trouble getting around and takes more meds than me.he also has a wife and three kids.He takes full responsiblity for having his condition.he has told me no one forced him to eat all that lasagna etc.But think about it so many people make bad lifestyle choices in teens and twenty somethings and many of them seem to get away with it,until much later on.
                                In his case his disposition to obesity was a major strike against him.I guess it doesnt make a difference in the hows and whys,It comes down to how we individually cope with our circumstances.some people cant accept the hand they have been dealt.Others revel in adversity.I tend to be some what willy nilly depending on how I feel.If Im really bad its please God help me all day.If I feel ok I try and get lost in what Im am doing for that day.But Im always aware of the hcm.wheter its pvc's or chest/back pain shortness of breath.or just constantly reminding myself not to push myself to much.I can push myself mentally further than my body can keep up with.Hcm isalways their.Im lost in what I wanted to say ,but just to let you know I DONT THINK ANYONE DESERVES TO BE SICK.Even people suffering with aids who led high risk lifestyles to people who suffer genetic maladys .sickness is not a punishment for moral ineptitude.(some may differ with me on this).We all must face the uncertainty of each new day and try and be grateful even in the face of our limitations.what a difficult task.Im pulling for you-welcome aboard.
                                Thanks for the advice. Maybe I don't deserve it like you suggest.

                                Comment

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