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New feature coming to the HCMA website!!

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Lisa Salberg Find out more about Lisa Salberg
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  • New feature coming to the HCMA website!!

    Recently the question of live chat room has come up again. As many of you know I am very careful about adding features to the website. The HCMA works to maintain high quality information in a format that will provide access to discussion and promote the factual, informative and timely data on HCM. One of our distinctive differences from some other messages boards is our prompt and educated moderation, something we have all benefited from, therefore it is a feature we will carry on to our upcoming new feature of the "HCMA Chat room".

    It will take a few days to set up the chat room and hours of operation, but I did want to tell you all that it is coming soon! I will be speaking to some of our medical advisors to have them participate in "moderated - chats" too! Just one more way of bringing our specialist in contact with those living with HCM!!!

    Look for more information on this topic very soon!!

    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)

  • #2
    Re: New feature coming to the HCMA website!!

    Lisa

    That would be great!!!!!!!!!!

    We really need something like that so we can chat one on one or even talk with another medical person to get idea's answers to important questions, there are times i wish i could find a site that did this.

    Thank You very much

    Shirley
    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


    • #3
      Re: New feature coming to the HCMA website!!

      Great idea Lisa. I think many members will definitely benefit from this instant chat type thing. Especially true when people are feeling anxious and such and are looking for support right away. I am still on the learning curve of such things but am trying to come into the millenium . Thanks again for all your hard work and thinking of the many people who you will be helping.
      Pam
      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


      • #4
        Re: New feature coming to the HCMA website!!

        Well Lisa dearheart, if you’re still open to suggestions I have a few for the chat room.

        First; I think it would be marvelous if we could have an “Ask the Doctor Hour” every day at a set time, but being practical – once a week from something like seven to eight PM Eastern Time would be fabulous. If you could get a number of skilled doctors to take turns moderating it, I think it would be the absolute best. The time would be late enough for you easterners, and early enough for us westerners. If I had my druthers, I personally think Sunday nights would be the best – but that’s only one vote. The rest of the time could be pick-up sessions for whoever is on at the time.

        Second; Since there would be lots of valuable information being passed back and forth During the ‘Ask the Doctor Hour’, wouldn’t it be great to post the whole chat on the HCMA website, so people who missed it could get to read it when they got the chance? After say a month, the chat could be excerpted for new and/or pertinent information and stored in a more permanent category that could be searched when needed.

        Third; To avoid bedlam, those with a question could send, say “Question” when an answer is done, then the doctor could select the person to ask the next question, taking them in turn and avoiding garbled cross talk. At the end of the hour, when we have used the doctors time for the maximum benefit, there could be a discussion on the various questions and answers. The doctor of course could stay on, or leave, as he sees fit

        I hope you don’t mind my sticking in my two cents, but I find it a very exciting idea.
        Burt

        Comment


        • #5
          Re: New feature coming to the HCMA website!!

          that would be wonderful! Burt, great suggestion!!
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

          Comment


          • #6
            Re: New feature coming to the HCMA website!!

            Great job Lisa...Good thinking Burton...


            Tigger1
            " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

            Comment


            • #7
              Re: New feature coming to the HCMA website!!

              Great thinking Burton ...

              You will be pleased to know that Lisa is on top of things (as usual) and has already considered these options (and more) as requirements for any chat software which is implemented here.

              All I can say is that when we are done, we will definately have a world-class website!
              Thanks, Tim
              Forum Administrator

              Comment


              • #8
                Re: New feature coming to the HCMA website!!

                Thanks Tim, for helping Lisa with all your computer expertise. You are right we will be the best. All of the combined efforts will pay off and help a lot of people. Hmmmm I wonder if Oprah needs to check out the humanitarian side of all the HCMA efforts. I'll have to send her another e-mail.
                Thanks to you all.
                Pam
                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


                • #9
                  Re: New feature coming to the HCMA website!!

                  Hi Tim,
                  I kinda thought you’d be elbow deep in this project also. I’m in no way knocking your or Lisa’s abilities on this project – I just wanted to express my hopes for it.

                  By the way – I really like your Avatar – but isn’t your wife a bit young looking? What’s that you say? She’s not your wife, she’s your daughter? Boy, if I had a nickel for every time I heard that one.

                  Hey Jim, if there’s any way I can help, just say the word.
                  Burt

                  Comment


                  • #10
                    Re: New feature coming to the HCMA website!!

                    Update OK we have reviewed more options and spoken to some people who have experience with such chat rooms. Here is the latest. There are several options the one that we would need will cost the HCMA about $600-800 per year.

                    The plan is as follows:

                    2 open/moderated chats per week 2 hours in length.
                    PLUS:
                    1 monthly chat with a "special guest" - AKA doctor or other professional.
                    1 monthly chat with me.

                    based on interest and activity this program will grow

                    Your feedback is welcomed please remember we are attempting to add in this feature with our current staffing and current responsibilities at this point. As funding and programs grow so will our ability to add service.

                    Thanks -
                    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


                    • #11
                      Chat rooms can be great fun!

                      Hi everyone, I love chatting and if you don't mind, I'd also like to add my two cents here. The idea of having doctors participate is a great one, but yet I wonder if they would actually be willing to. I hope so. Will we be able to voice chat as well and open our webcams if we like? Or will it be only done through typing? I've seen lots of you have messengers so, if anyone wants to get in touch with me to talk about heart issues or just life in general, you can find me on yahoo messenger. I'll be looking forward to hearing more about the chat room here too.

                      Débora from Brazil
                      http://uk.geocities.com/deboraginastewart1
                      http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                      View my heart history too.

                      Comment


                      • #12
                        Re: New feature coming to the HCMA website!!

                        Hi Debora. There are a few doctors who visit our site at least weekly, some more often. I'm guessing that these are the doctor's Lisa's going to ask to help us out. I bet that they will do what they can. They're a great group of people.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          I've always wanted that!

                          Hello Reenie, that would be really nice! I've always wanted to be able to ask a doctor on line about my concerns regarding my next surgery. Have you got any idea of how long it will be until the chat room is ready? I can hardly wait! Thank you.

                          Débora
                          http://uk.geocities.com/deboraginastewart1
                          http://uk.f2.pg.photos.yahoo.com/ph/...art1/my_photos
                          View my heart history too.

                          Comment


                          • #14
                            Re: New feature coming to the HCMA website!!

                            I don't know when the chat room will be ready. I do know that they have been looking at different programs and hosts. Hopefully it will be soon.

                            Reenie
                            Reenie

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

                            Comment

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