If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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Lisa Salberg
Lisa Salberg
Lisa Salberg
HCMA CEO and Founder
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  • #1

    quick stats!

    OK did you know that in the general area of this board there are an estimated 25 times the amount of people visiting this board than actually posting! ( that is 330 reg. users..so that is nearly 8,250 people hear on a regular basis) Ok I know some of them are our wonderful medical advisors who peek in now and than but most are patients!

    Did you know that most people do not post on the board they simply read the board?

    Did you know that almost all new calls into the HCMA mention what a wonderful message board we have?!

    Just thought I would share that!

    Be well,
    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)
    Tags: None
  • #2
    Re: quick stats!

    Way to go!!!

    And hi to all of our doctor friends!
    Reenie

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

    Comment

    • #3
      Re: quick stats!

      Hey all you guys!!

      Pop in and say hi! We don't bite!!

      S

      Comment

      • #4
        Re: quick stats!

        Hey! Reenie. You seem to be up to your same old clever computer tricks. How do you feel? I think it's quite amazing that you are back with us so very soon. You are a computer poster child for ablation.
        Take good care of yourself.

        Sue

        Comment

        • #5
          Just saying Hi

          First the bad news!

          Still waiting for a heart cath to be done to decide on the myectomy/ablation matter. I live in Toronto so what with SARS and all I still think it will take a loooooong time. I hard putting your life on hold. This all started over a year ago.

          Now the good new!

          I have always wanted to be a "Big Sister", so I joined up, and I finally got a "Little Sister". Just an email one until I can be more physically active. I am very happy about that.

          That's my Hi,
          Robbyn

          Comment

          • #6
            Re: quick stats!

            Originally posted by suebrown
            Hey! Reenie. You seem to be up to your same old clever computer tricks. How do you feel? I think it's quite amazing that you are back with us so very soon. You are a computer poster child for ablation.
            Take good care of yourself.

            Sue
            Hi Sue. Actually, I feel pretty good. I even went out to supper tonight and to my kids' school today. I think by next week I'll be on top of the world. Thanks for asking. I tell you, if anyone will get any benefit from the radio frequency ablation, I would say to look into it. The problem is that since I don't have HCM, I'm not sure the RF would be beneficial for others who do. I'm sending you a PM, please check for it.

            Reenie
            Reenie

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

            Comment

            • #7
              Re: quick stats!

              R

              Very glad to hear you are doing so well!!

              Just wanted to say that --not surprisingly--RFA is not used in HCM patients with arrhythmias as a general rule b/c the heart tissue is not reliable. There are a few people doing a fancy Maze procedure for very bad cases, but for the most part, it can't be done effectively with HCM hearts. Maybe some day.

              S

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              • #8
                Re: quick stats!

                Hi Robbyn, I'm still waiting to hear from Dr Wigle about my rescheduled visit.
                Mine is a just check up so I maybe a lot longer than you.
                I was big brother many years ago, it can be very fulfilling, good for you and good luck.
                Nice to see you back Reenie and glad your doing well.
                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

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                • #9
                  Re: quick stats!

                  Reenie:
                  I've been away for a while what happened with you? Are you ok?
                  Tammy

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                  • #10
                    Re: quick stats!

                    Tammy, I'm fine. I don't have HCM, but did have other issues. I had a catheter surgery 2 weeks ago that fixed my problem that allowed me to be drug free.

                    Reenie
                    Reenie

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

                    Comment

                    • #11
                      Re: quick stats!

                      Okay, I have to admit, I am one of the readers!

                      This message board is high quality valuable information. Thanks go out to Lisa and all the contributors as well as our monitors! You are all wonderful!

                      Sharon

                      Comment

                      • #12
                        Re: quick stats!

                        Sarah:

                        Interesting! I'm HCM, not obstructed, and I had a RFA BECAUSE arrhythmia showed up on my monitor while I was hospitalized at NEMC for tests. (ICD implanted at same time.) What do you make of this?

                        Faith[/u]

                        Comment

                        • #13
                          Re: quick stats!

                          Dear Faith,

                          Well, as I seem to say every day, "everyone is different." What kind of arrhythmia did you have and did the RFA eliminate it and how long ago did you have it done? How are you feeling now? Just curious as it isn't done very often.

                          thanks,

                          S

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