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Celveland Clinic Website for Patients and Family

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angusjcampbell Retired from Healthcare Telecomm in NY City in 2004. Diagnosed with HCM in 2005, moved to Golden Isles region of SE Georgia in 2006. Now working for a non-profit ministry called International Seafarers Center at the busy seaport in Brunswick . Find out more about angusjcampbell
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  • Celveland Clinic Website for Patients and Family

    So reading through our CCF Thoracic Park vacation package we find the www.thestatus.com website tool offered for patients and families to keep in touch with friends and family. My wife just sent one up for me and it looks pretty cool (I'm going in the week of Jan 6th). It lets her post updates to my status to friends and family on an e-mail list to which they can respond to on a secure link and get updates, news and anecdotes.

    Won't need it for Jimmy; I'll just yell down the hallway "HEY, WASSUP?!!"

    Anyone have any experience with this or any gotchas they know about??

    Thanks all and happy holidays
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

  • #2
    Re: Celveland Clinic Website for Patients and Family

    I used it and my family and friends loved it! I'm somewhat of a private person and didn't really want blasts going out on facebook, so my mom would update on the status and my closest friends and all my family around the country could keep tabs without my parents making all the phone calls and forgetting someone. That way everyone was on the same page and a story wasn't passed from one person to the next and all the details were accurate.
    Missie
    HCM diagnosed 8/1/11
    changed to HOCM 1/23/12
    Septal Myectomy 4/5/12 at CCF
    Gene positive, no one in my immediate family is willing to be tested, including my 21 year old son

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    • #3
      Re: Celveland Clinic Website for Patients and Family

      Most major health centers have similar systems. They're great, and as Missie pointed out you select who gets the news. A lot easier for your family & friends to get info.
      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 . . .

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      • #4
        Re: Celveland Clinic Website for Patients and Family

        Yep we will see you there Angus I sent you a pm
        Myectomy January 8 2014

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        • #5
          Re: Celveland Clinic Website for Patients and Family

          Here is hoping both of you have great outcomes.
          I am getting a new icd that day.
          Great way to start the new year.

          Comment


          • #6
            Re: Celveland Clinic Website for Patients and Family

            Thanks Tim. Good luck to you As well.
            Angus Campbell
            Golden Isles Region, Southeast Georgia, USA

            Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
            Myectomy Jan 9th 2014 at Cleveland Clinic
            Drs Lever and Smedira

            Comment


            • #7
              Re: Celveland Clinic Website for Patients and Family

              Originally posted by angusjcampbell View Post
              So reading through our CCF Thoracic Park vacation package we find the www.thestatus.com website tool offered for patients and families to keep in touch with friends and family. My wife just sent one up for me and it looks pretty cool (I'm going in the week of Jan 6th). It lets her post updates to my status to friends and family on an e-mail list to which they can respond to on a secure link and get updates, news and anecdotes.

              Won't need it for Jimmy; I'll just yell down the hallway "HEY, WASSUP?!!"

              Anyone have any experience with this or any gotchas they know about??

              Thanks all and happy holidays
              Angus: You're posts are so inspiring. Best of luck to you. It sounds like you have a great support system.

              I stayed at the Intercontinental on my last visit and will stay there again before and after the surgery, it is a great hotel.

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