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Lisa Salberg Find out more about Lisa Salberg
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  • #1

    Anyone want to Chat?

    We are looking at a new feature to this message board - a Chat option. As this is YOUR organization, we thought we would ask you if you would find this a valuable option. So take a quick poll... and it will help guide us.

    Thanks,
    Lisa
    14
    Yes, I would and I would use it.
    92.86%
    13
    Yes, I would but dont think I would use it.
    7.14%
    1
    No, I would not use it.
    0.00%
    0
    No, I think open chat is a bad idea on this board.
    0.00%
    0

    The poll is expired.

    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
    • Stuck
  • #2
    Re: Anyone want to Chat?

    i would have to say yes Lisa, it might help other members with quick anwsers they need
    • Likes 1

    Comment

    • #3
      Re: Anyone want to Chat?

      I think it would be good in addition to what Mark said above me but to also just get to know each other a bit better. We all talk and answer questions regarded to the condition we have but sometimes it would be nice to just talk to someone in the same boat. Maybe about HCM maybe about the weather or whatever else helps pass the time.
      Diagnosed HCM October 2011(obstructed)
      ICD Implanted 10/14/2011
      First trip to Cleveland Clinic 11/16/2011
      Septal Myectomey 12/14/2011
      A better life started 12/15/2011

      Comment

      • #4
        Re: Anyone want to Chat?

        I think this is a great idea. I really like what Tom had to say. There have been many times I wish i had someone to talk to that knows how I feel and not think I'm crazy.
        Tim
        Diagnosed HCM @ 44 Nov.2010
        Daughter diagnosed HOCM Dec. 2010
        ICD Implanted 1-24-11
        Knowledge Saves Lives

        Comment

        • #5
          Re: Anyone want to Chat?

          Yes I think it would be valuable. Not for the information though... more for the camaraderie and being able to 'hookup' with other HCM'ers.
          "Some days you're the dog... some days you're the hydrant."

          Comment

          • #6
            Re: Anyone want to Chat?

            Chat would be a good idea, many of us go through hard times and it would be nice to have support. Perhaps bring on our doctors for Q%A and just all about a shoulder to cry on sometimes. Yesd LISA, please. And my gradient hit 50, so now i am scared.

            Comment

            • #7
              Re: Anyone want to Chat?

              It is unlikely that your gradient "hit 50" its likely been there for a while - it is a transient number and some days it may be lower.. some days higher. Taking your medication, and the proper medications, drinking water and monitoring your physical activity are keys to manage obstruction... rushing to invasive treatments myectomy or ASA.. is not wise.. take your time, try meds, and go slow... options chosen in panic mode... are usually mistakes.

              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)
              • Likes 1

              Comment

              • #8
                Re: Anyone want to Chat?

                Very well said Lisa. Decisions that are made from a "fear base" are often not the best. When we operate out of fear, we are very easy to manipulate.
                Onward and Upward !

                Diagnosed 4/07 HCM with fixed & dynamic obstruction
                Myectomy with resected cordonae tendonae 4/08 CCF
                ICD 10/08

                Comment

                • #9
                  Re: Anyone want to Chat?

                  I'm in on a 'chat' feature to the forum. Would it be on a set time for gaurenteed 'live chat'? There have been times lately where I could of used a shoulder to comisserate with, a person totally familiar with the frustrations I'm going through.This 'waiting list'phase is another mountain that seems almost insurmountable but I dont't have much options.Sorry for sounding miserable, but I am with the quality of my life,and the new challenges with my health that have appeared. Ahh I'll get over it after a little more 'whine'. GO PATS!!!

                  John
                  had HCM since birth
                  'enlarged heart' identified in 96'
                  HOCM dx in 7/08
                  Myectomy 8/09
                  extended Myectomy 5/10
                  'End stage' HCM dx 8/10
                  CRT-D implanted 9/10
                  evaluated for Transplant 11/10
                  Listed for transplant 6/11

                  Comment

                  • #10
                    Re: Anyone want to Chat?

                    Jim.. are you trying to use the HCMA as a dating site?? LOL.. just teasing!

                    BTW.. somehow this thread got double posted... and there are votes on both so i am gonna let it say as is... for a month.. then merge the thread.
                    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

                    • #11
                      Re: Anyone want to Chat?

                      Originally posted by Lisa Salberg View Post
                      Jim.. are you trying to use the HCMA as a dating site?? LOL.. just teasing!
                      Oh good lord... whatever dude.
                      "Some days you're the dog... some days you're the hydrant."

                      Comment

                      • #12
                        Re: Anyone want to Chat?

                        I wish we had it right now because I really need to talk.

                        Comment

                        • #13
                          Re: Anyone want to Chat?

                          Don - Scroll down in the main Forum page to the very last red bar - It all depends if someone is there!
                          Marc
                          Diagnosed @ 48
                          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                          AICD - Valentines Day '08, Spark Plug replaced 11/14
                          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                          Quietly going insane . . .

                          Comment

                          • #14
                            Re: Anyone want to Chat?

                            I think it would be great if we had a chat, I think it would help if somebody had maybe a problem talk to them online instead of waiting
                            Diagnosed 2003
                            Myectomy 2-23-2004
                            Husband: Ken
                            Son: John diagnosed 2004
                            Daughter: Janet (free of HCM)

                            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                            Comment

                            • #15
                              Re: Anyone want to Chat?

                              Yes it would be a great feature. A place to compair symptoms talk about and validate our experiences.

                              Comment

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