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  • #31
    Re: Using weights

    Originally posted by Linda View Post
    Please keep us up to date with how you and your family are doing. Has your little one been screened for HCM? Best wishes - Linda
    Every check up I ask my doctor to check his heart and tell me if theres anything wrong but he tells me everything sounds ok. I will insist on a echocardiogram soon or I will sue him heheheh. If my son ever dies I will sue him more.

    Just kidding.

    I guess so far so good. I will have him checked before he is in grade school. When I was small I had no problem playing hockey and baseball untill I was in 5th grade. Well actually my last year of hockey in 4th grade I think I had ventricular tachycardia but it looped out before anything happened. Thats what usually happened but now at the age of 27 it likes to stay in the loop forever. So Im not too worried but I want him checked by 3rd grade. Or I will sue if something happens. No joke there.

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    • #32
      Re: Using weights

      I'm glad you are keeping on it with your son. He's a big reason to call the HCMA office and get all the info you can possibly get to be prepared to talk with your doctor and know when to insist on an echo for your son, especially with the history of your HCM events. "Suing" after the fact is a bit late. Take care,

      Linda

      Comment


      • #33
        Re: Using weights

        Originally posted by Linda View Post
        For your next challenge, will you call the HCMA office (973-983-7429)?
        Is that a toll free call? If its not is there a toll free number for that. Im low on cash.

        oh and suing after the fact is late. But my pockets would be filled with the doctors cash.
        Last edited by craqbin; 10-08-2006, 06:09 PM.

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        • #34
          Re: Using weights

          Start with an email at - [email protected] - You can find this email address on the home page under "contact us". Kelly can help you from there, maybe set up a return call appt. Good luck - let us know. Linda

          Comment


          • #35
            Re: Using weights

            Originally posted by adpsmp View Post
            You may not care - but others in your life just might. Remember, the HCM might not kill you, but it just might cripple you - wouldn't that suck?!

            Just a thought - Andy P
            Wouldn't allowing HCM to take away the activities you enjoy doing be considered crippling in a sense? You can't let HCM scare you to death either. THAT, my friend, would really suck!

            Nick

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            • #36
              Re: Using weights

              To ME, "crippling" would be the feeling I would have after suddenly losing my husband or one of my children, someone I dearly loved, who I wouldn't have lost if he/she/we had taken reasonable preventative measures or precautions. THAT would really suck.

              Also, to ME, "crippling" would be losing my bodily functions and my independence due to, say, a stroke. Perhaps a stroke that could have been prevented if I had been more responsible. Mhmm. Let's see, being completely paralyzed on my dominant side of my body and therefore, not being able to walk anymore, not being able to speak anymore (not even to tell my family 'thank-you,' or 'I love you,' or to pray aloud), not being able to read or write or functionally communicate anymore, and living that way for a few years, burdening others to take care of me and my most basic human functions,....Yeh, THAT would qualify as something that "SUCKS" in my book. (And I bet I would long for another chance to go back and be more responsible or take the necessary precautions.)

              Thanks for your post, Andy. Great food for thought.
              Theresa
              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

              Comment


              • #37
                Re: Using weights

                Originally posted by THW View Post
                To ME, "crippling" would be the feeling I would have after suddenly losing my husband or one of my children, someone I dearly loved, who I wouldn't have lost if he/she/we had taken reasonable preventative measures or precautions. THAT would really suck.

                Also, to ME, "crippling" would be losing my bodily functions and my independence due to, say, a stroke. Perhaps a stroke that could have been prevented if I had been more responsible. Mhmm. Let's see, being completely paralyzed on my dominant side of my body and therefore, not being able to walk anymore, not being able to speak anymore (not even to tell my family 'thank-you,' or 'I love you,' or to pray aloud), not being able to read or write or functionally communicate anymore, and living that way for a few years, burdening others to take care of me and my most basic human functions,....Yeh, THAT would qualify as something that "SUCKS" in my book. (And I bet I would long for another chance to go back and be more responsible or take the necessary precautions.)

                Thanks for your post, Andy. Great food for thought.
                Theresa
                Sure it is a responsible thing to heed warnings and do the "right thing." But after a while life is about taking risks and sometimes those risks are stupid and they can kill you. Sometimes they won't. To live is gain and to die is gain.

                I see your points and sometimes I feel like taking it easy and letting days go by without a care for adventure and without any risks. Other days I say lets push my luck some more and see what happens. Most of the days I sit take it easy and realize boy I am getting fat and out of shape. Is this healthy. Should I just let myself go. Then on the other hand I could change my diet and not enjoy some food that I like. Eat vegatables and live like a vegetable. Or I can do a little of both. Any ways enough babling. I live for the moment and when something tells me to get off my behind and do something I listen.

                Comment


                • #38
                  Re: Using weights

                  Once again, I refer to my previous post that athletics are not as well tolerated here as is child birth or sex. There is actually a thread going right now about the need for an HCM mother to become pregnant. There is absolutely no one who is going to say anything negative about this (nor should they). I canít speak out of personal knowledge, but I imagine that childbirth is extremely taxing on the human body. I would even venture to guess that it is more so than say; a light 2 mile jog to clear ones head, forget about the days stress, and keep extra weight off ones body that makes it more difficult for the heart. Did anyone forget that children of an HCM parent have a 50 / 50 chance of getting the disease too? I agree whole heartedly that it is a womanís right to choose whatever she wants. But if we are talking about risks associated with having an affect on others, is this not the biggest one of all? Letís not point fingers and say this is good and that is bad. Whatís good for the goose is not always good for the gander. I would hope to see a little more support for those of us who have the OK to exercise and do so in a moderate responsible fashion.

                  Nick

                  Comment


                  • #39
                    Re: Using weights

                    Moderate responsible exercising isn't the question here. Competitive sports or what some would consider extreme exercising is what's at hand. Lifting 35 lb dumbbells isn't what anyone would call light lifting to keep your arms toned. A walk around the block is one thing. A full-out run to see if you can beat your time from yesterday is another thing. There are way too many variables here to count. Yes, child birth can be a dangerous thing. But it can also be dangerous if you don't have HCM. But we aren't comparing apples to apples with this analogy.

                    Reenie
                    Reenie

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

                    Comment


                    • #40
                      Re: Using weights

                      As Iím sure Iím already on the HCMAís most wanted list for being a rouge, Iíll simply say that IN MY CASE walking does not constitute exercise. Now Iíll probably be public enemy #1ÖbutÖ

                      I think we ARE comparing apples to apples when it comes to the tolerance of which RISK is acceptable and which is not. Like I said before, I believe a light 2 mile jog is far less of a RISK than deciding to have a child. Iím certain that childbirth puts the human body through far more strain than an easy jog! And while Iím talking about RISK; did everyone forget that itís a coin toss on whether or not you pass the HCM gene along? Talk about a risk that could affect someone else!

                      I agree that playing full court basketball, running wind sprints, and running a marathon probably arenít the smartest things to do for someone with HCM, but do you honestly think that doing moderate exercise such as half court basketball, jogging, mountain biking, or anything else one may enjoy doing that keeps you fit, free of stress, and sane in knowing that we can actually LIVE our lives with HCM is so wrong? Iíve been cleared by two cardiologists who I trust very much to do these things. Also, after initially speaking with our own Lisa, she agreed that there probably wasnít a whole lot wrong with what I was doing. Itís not as if Iím suggesting that just anyone go out and cavalierly join a soccer team without consulting with a knowledgeable HCM Dr. I just want to be able to freely talk about it and ask questions without being told about how irrespnsible I'm being.

                      Nick

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                      • #41
                        Re: Using weights

                        Nice post, Nick.

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

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                        • #42
                          Re: Using weights

                          I never said you are being unreasonable with your exercise regimen. If you have no problems and are exercising at a light jog, that might be all right for you. My problem is when people talk about power lifting, running (not jogging), playing basketball or soccer, etc. First of all, if they do it and it doesn't bother them, then I just pray that it continues to not be a problem and they aren't doing long term damage to themselves. However, when they condone activities for the general HCM population, which a lot of people do, then I have a problem. In general, HCM'ers should refrain from these activities. And when you're on a public board like this one, we need to be careful to let everyone have their say, but also to make sure that guidelines from the experts are available to those who are reading. There are a lot of people who read here who don't post and there are a lot of new people who could read posts that say so-n-so was okayed by his/her doctor to do such-n-such activity and think it's normal for this activity to be okayed for HCM'ers when the experts would suggest strongly that nobody with HCM do that activity. That's all I'm saying.

                          On to the subject of possibly passing the gene on to your kids, that's a whole completely different story. Many with HCM choose to have kids. Many had kids before they knew they had HCM. That's a whole different ball game and it's not relevant to this discussion. Yes, childbirth isn't an easy task. I've had three kids, two with light medication and one with none. I'll have to say that although I don't have HCM, I did have a significant arrhythmia problem at the time that required me to be on cardiac meds throughout these pregnancies and to have IV antibiotics for their births. I can't attest to gradients or chf or those complications of HCM, but for me, my arrhythmias didn't increase during the pregnancies or during labor and delivery.

                          Reenie
                          Reenie

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

                          Comment


                          • #43
                            Re: Using weights

                            Nick,
                            I doubt you're on the "most wanted" list. My experience on the board has been that everyone is encouraged to post if they want, but like Reenie said, folks, especially those who are new to HCM, who surf or visit need to be aware of what is and is NOT advised for most HCMers by the TRUE HCM SPECIALISTS -- those seeing the most patients with HCM, those doing the research, etc. And I too, am not saying you're irresponsible. I was saying that for ME, it would be irresponsible to take the risks -- that it would really stink if I did something against my doctor's orders or against the general HCM guidelines and then something happened. HCMers have to know how they feel, have to know their bodies and symptoms. And in my opinion, even more importantly, should be followed by a true HCM SPECIALIST, in order to be able to make the most informed decisions about the activities they're going to engage in, to know what THEIR risks ARE.

                            And when I chose to become pregnant, I didn't even know of this board, but thought I was being treated by a HCM specialist. And I really didn't know much about HCM, although I THOUGHT I did. I was told I had a "mild" case and that pregnancy was ok for me. I was made aware that there was a 50/50 chance of passing it on, but I had NO idea that my condition would get worse. I had no idea what getting worse would mean. So, I guess I am guilty of not going to an expert to educate myself, but truly, I was ignorant and remained pretty ignorant about this disease until I started seeing a "true" HCM Specialist. And the current thread about April considering a pregnancy that I assume you're talking about, you'll notice that I have posted to that thread and DID recommend adoption as an option over pregnancy. I shared that I didn't think I would choose pregnancy if I had the condition she describes. It's hard to say because it's hard to imagine my life without my son now, nor do I want to try, but knowing what I NOW know about HCM, I don't know if I would have chosen pregnancy. And I still have to add that although my pregnancy MAY have put wear and tear on my HCM heart over the course of 9 months, the actual delivery felt MUCH LESS exerting to ME than the exertion I used to feel when I used to work out with weights and trying to jog.
                            Theresa
                            Last edited by THW; 10-12-2006, 12:36 AM.
                            Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                            Comment


                            • #44
                              Re: Using weights

                              Nick,
                              What would make you believe you are on our 'most wanted' list? That is just silly. If you were in violation of the rules of the board you would be notified, you have not an frankly I was a little insulted by your comment. Your comments are welcomed, encouraged and helpful. The role of this message board is to encourage dialog and converstation with guidance and support.

                              Competitive sports and HCM do not mix, that is clear in the medical liturature and by the fact that every 2 weeks in the USA a young athlete dies of HCM. Fact - HCM and sports do not mix. Now lets change focus - HCM and exercise - this is a very individual topic and the answer is different for different groups of people with HCM for some moderate activity is a positive thing, for others a more seditary life style is called for and there is no group I am aware of where extreme activity is appropriate.

                              Every few months this topic comes up again and it brings with is a level of emotion and frustration. We should all be clear on the fact that this will come up from time to time and some of us will respectfully disagree with the opinions of others, some will look to the medical liturature and all the while others will read trying to see though the emotion and find a path for themselves or their loved one. All input is helpful and should be respected. However I again remind you that words are powerful and you should remember that what is right for you may well be very wrong for someone else and only a patient and their medical care provider really know what is best for that individual person. Proceed with caution as I am sure you would want others to do the same.

                              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


                              • #45
                                Re: Using weights

                                I think you are all correct. There are a lot of people who read this board that are not as well informed as all of us. There are also quite a few of us (Iím sure) that are very well informed who donít post that often either. At the same time we preach the overly cautious approach, I think itís fair to assume that we scare the crap out of others in doing so too. I know I thought my active life was absolutely over when I first joined.

                                I would like to remind all of you that I have been VERY careful every time I post about this to make sure that I advocate for speaking with your doctors about an exercise regimen before beginning one. Iíve also been VERY careful about talking about MY OWN particular case rather than speaking in generalities.

                                As for insulting anyone: please believe that was not my intention. I know it sounded like I was attacking mothers who chose to have children with HCM, but believe me, that was not the case. I too have parents who I love very much. My only intention was to point out that there are risks involved with choosing to do so.

                                As far as being insulted about my saying that Iím on the HCMAís most wanted list: I donít know what to say. I guess you have to know me. I was just trying to open with something lighthearted to try and take the tension out of what I was about to type. (Poorly executed!) I was trying to brace you for my not so popular opinions. I know you strive to be as friendly, open, and giving as possible and you do a great job. I keep coming back.

                                Thanks,

                                Nick

                                Comment

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