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New diagnosis difficult to accept/adapt

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neverhart Diagnosed with HOCM: 2006. Septal Myectomy: 2/2008 Find out more about neverhart
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  • kiddster
    replied
    Re: New diagnosis difficult to accept/adapt

    Originally posted by Benjamin View Post
    Hello Kidster,

    This is Benjamin here. I hope you had a good turkey day. We were able to relax a little bit which was good. I ended up signing up a anytime fitness here for my workouts. All I really need now is the bare minimum. It has everything that I need (cardio pieces, free weights, and machines.) I was told that I could exercise, but no competitive sports, I would have to reduce my level of it, and to shy away from things like the bench press. I have been doing push-ups however. I am still trying to figure out what will be the best workout plan for me. I am currently keeping a journal of my eating and my exercise regimen, so I can track my improvement. I have to go back to MN in about six months to get all the testing done again, so my goal is to be back in prime shape. I know that this may take longer, especially with reducing the intensity of workouts. I will keep you informed. Take care and God bless
    Hey there Ben,

    Great to know that you're still going to the gym. I am too but however, I'm currently limiting myself only to cardio and light weights. And sometimes when I'm at the free weight area, I just get a little bit streessed out looking at other people more skinnier than me but carrying more weights... Huh...

    Another thing I'm enjoying right now is an hour of swimming. It's totally relaxing. You should try it.

    Hope that you can get to your prime shape. Anyway, let us know if you've found the right kind of regime for yourself...

    Leave a comment:


  • Lisa Salberg
    replied
    Re: New diagnosis difficult to accept/adapt

    You guys are too funny - - Heartbreakers huh...
    Lets see you all in May at the Meeting and see what we can put together!

    Take care,
    Lisa

    Leave a comment:


  • Benjamin
    replied
    Re: Some thanks and some history...

    Originally posted by mbcube View Post
    Maybe if we get enough of us together we can form some kind of team - Even get jersey's or tee's made up (medtronic's sponor?). We can meet at the next HCMA National meeting. The obvious name could be Heartbreakers, but I'm sure there's other good names out there!

    MBcube,

    That sounds like a great idea to put together some type of team. Count me in!!! Let me know what assistance you may need to make it happen. Take care and God bless.

    Leave a comment:


  • Benjamin
    replied
    Re: New diagnosis difficult to accept/adapt

    Originally posted by kiddster View Post
    I'm from a place where HCM is totally new and not considered as something that can cause fatality unless you're pushing a car to the top of a hill or such.

    But then, once you get HCM, you yourself know that you can't push your body over the limit or things might go bad for you. However, as HCM is not of a main concern here, people wonder how come you are not exercising to your so-called potential limits. It's tough explaining to them. Even when I met with a workout trainer from a famous gym here, they can't figure out the seriousness of this thing we call HCM. It's really frustrating!

    So, Ben, if you and your trainer have a workout that could be useful to us all in maintaining not only our body shape but our health as well, please do share... It would very much be appreciated.

    Thank you...
    Hello Kidster,

    This is Benjamin here. I hope you had a good turkey day. We were able to relax a little bit which was good. I ended up signing up a anytime fitness here for my workouts. All I really need now is the bare minimum. It has everything that I need (cardio pieces, free weights, and machines.) I was told that I could exercise, but no competitive sports, I would have to reduce my level of it, and to shy away from things like the bench press. I have been doing push-ups however. I am still trying to figure out what will be the best workout plan for me. I am currently keeping a journal of my eating and my exercise regimen, so I can track my improvement. I have to go back to MN in about six months to get all the testing done again, so my goal is to be back in prime shape. I know that this may take longer, especially with reducing the intensity of workouts. I will keep you informed. Take care and God bless

    Leave a comment:


  • Pam Alexson
    replied
    Re: New diagnosis difficult to accept/adapt

    Welcome to the site B Kelly.

    Pam

    Leave a comment:


  • BKELLY
    replied
    Re: New diagnosis difficult to accept/adapt

    Thanks for the responses. It's great to see support for this. Not being the only one in my situation helps.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: New diagnosis difficult to accept/adapt

    We all must live our lives... however we need to be here to LIVE our lives... Please call me I think it would be helpful to discuss a few things.
    Lisa

    Leave a comment:


  • adpsmp
    replied
    Re: New diagnosis difficult to accept/adapt

    BKelly - welcome to the club - the club you never wanted to join. Yep, it sucks.

    I'm amazed that your doctors haven't given you better guidance on what is/are appropriate activities for your situation. I agree with the above post, call the office and talk with Lisa. I was pretty much convinced I was going to drop dead - Lisa convinced me otherwise and connected me to the experts at CCF.

    Don't the doctors get paid big bucks to give you definitive advice? That is my expectation. I ran a marathon 2 years before being diagnosed - now, nothing. I gave up all of that activity for my wife and kids. And . . . I'm still trying to find the right balance.

    You have to make the best decisions for you and your family. Hope it goes well.

    Andy P

    Leave a comment:


  • Linda
    replied
    Re: New diagnosis difficult to accept/adapt

    BKelly - Welcome. If you haven't yet called the HCMA office and had a one on one chat - specific to you and your situation, I would urge you to do so. You are still very new to this whole HCM and all it means, not just to you, but family and friends also. There is so much to learn, so much to get used to. Meanwhile, your docs are learning a lot about you too, what your treatment and limitations should be. It's important to know you are safe and will be there for your wife and little ones.

    I'm glad you have such great support with your friends, I'm sure they will continue to stand beside you for the long haul, even if your directions alter a bit. Best wishes - Linda

    Leave a comment:


  • Cynaburst
    replied
    Re: New diagnosis difficult to accept/adapt

    Some people have had complications from their ICD. On the other hand, some people have had their lives saved from their ICD. It comes down to what you can personally live with in the way of risk.

    You don't say anything about your family history. My own family history includes 2 sudden deaths. I remember when my uncle died. I was a little girl who had to be with my cousins when they were told that they were left without a dad. My grandfather died before I was born. You can imagine that both of these events weighed on me when I decided to get my device, as I was also a borderline case, at least for awhile. AFter further testing, I was found to have v tach on holter, so I decided I would feel better with the device. Now, although I know there are risks, I feel much more safe with device than without it. I don't want my son to grow up without a mom.

    Leave a comment:


  • BKELLY
    replied
    Re: New diagnosis difficult to accept/adapt

    Every doctor has said to limit my exercise, but no one has given me any guidance on heart rate. My cardiologist and the specialist both said it's up to me to get the ICD. My septum is 2.4, I've never fainted and my holter was normal. I guess I'm borderline for an ICD. Has anyone had any complications from their ICD?

    Leave a comment:


  • Cynaburst
    replied
    Re: New diagnosis difficult to accept/adapt

    It is hard for me to believe that you consulted a specialist who did not advise that you stop participating in Ironman contests. Most HCM patients are told not to raise their HR over 120.

    Did the specialist do some testing to see if an ICD is recommended? Have you done a stress test? Worn a holter? What is your family history and have you fainted before? All of these are factors that need to be considered in deciding whether you are at high risk of sudden death.

    If you are not inclined to quit the competitive sports, an ICD might be the way to go so that you would have some protection for your family.

    Just some thoughts...

    Leave a comment:


  • BKELLY
    replied
    Re: New diagnosis difficult to accept/adapt

    This post is actually scaring me. I'm new to the sight (and the disease for that matter). I was diagnosed in the spring with HCM after some fluttering. I wish I would have never went to the ER. Like a lot of others, my life is centered around activity, It's Who I Am. I was training for an Ironman when I found out and had to stop training intensively, but I continue to ride my road bike and my mountain bike. My heart rate still gets above 170 on the mountain bike when I have to climb a hill. Should I be concerned?
    I don't fell like I'm getting any straight answers from my physicians. I went to Minneapolis to see an HCM specialist and he really just confirmed the diagnosis. An ICD is an option, but they keep telling me it's up to me. Do I need one? Are the risks of having one implanted worth it? I trust all the doctors I've seen and I think they have my best interest in mind. I just think they are in a position in today's society that they have to cover their butts so much that they have to limit their advice.
    I still plan on completeing an Ironman, yet at a different pace than I once dreamed about. I can't imagine giving this part of my life up. The people that I've met through training have become my best friends (and they're positive people to be around emotionally and spiritually). It's 65 degrees out today in Omaha. What would I do if I didn't go ride?
    BUT, I have a wife and three children.
    Last edited by BKELLY; 11-19-2007, 04:19 PM.

    Leave a comment:


  • Norman
    replied
    Re: New diagnosis difficult to accept/adapt

    Hi Nathan:

    I enjoyed playing competitives sports (soccer and hockey) until HCM started to affect my health. I had my myectomy on May 16, 2007 and since then my life has changed. I now curl and golf with no symptoms to date. Some of my golf buddies ask if I have two hearts.

    Nathan, life is too short and with your skill and desire there are other avenues that you could assist others to reach their potential and that is by coaching. Nathan, what I learned during my recovery is that we should take one day at a time and enjoy that day and the friends and family around us.

    Norman

    Leave a comment:


  • Cynaburst
    replied
    Re: New diagnosis difficult to accept/adapt

    The annual meeting is in Morristown, New Jersey every year which is about 45 minutes outside of New York City and an easy drive from the Newark airport.

    Leave a comment:

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