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Cleveland Clinic - Amazing

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SteveinMadisonAL BSEE University of Alabama 1985 & MBA Auburn 2002, married with 3 daughters (18,21,23), active, healthy except heart! Find out more about SteveinMadisonAL
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  • Cleveland Clinic - Amazing

    Hello Everyone,

    On Saturday, my wife and I returned from a 2-day visit to the Cleveland Clinic with Dr. Alan Klein (after I asked to be referred there about 2 months ago after reading all the recommendations on 4hcma.org). All I can say is “wow”. The Cleveland Clinic is like a cross between a college campus and airport. The concourses & shuttle buses lead you to labs and doctors’ offices instead of planes! We opted to stay at the Intercontinental Hotel (on site), which made the visit very convenient. Once there, we saw Dr. Klein about halfway through the first day (before all the tests were complete). He made arrangements for us to meet with him again at the end of the day (after the tests were complete) and then we changed the “test plan” for the second day based on the results of the first. Everyone treated me in a friendly and loving manner. Dr. Klein called with my results yesterday. Tests ruled out Amyloidosis (a good thing) & confirmed non-obstructive HCM. He changed my meds and has me coming back in 6 months for a check up.

    I’ve really never experienced such personalized care. I highly recommend CC!

    Steve

    Dx HCM ‘10
    A/V heart block w/ pacer ‘09
    A/V Heart Block 2009
    Permanent Pacer 2009
    Dx non-obs HCM CCF 2011
    CRT-D 2011
    Listed for H/T UAB 2011
    Dx Cardiac Sarcoidosis 2012
    Heart Transplant UAB 2012

  • #2
    Re: Cleveland Clinic - Amazing

    Glad that you had a good experience and that Amyloidosis was ruled out.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: Cleveland Clinic - Amazing

      I was impressed with Cleveland Clinic as well. They printed me off a schedule for the three days I was to be there and for the most part stuck to it very well. The organization was incredible.
      "Some days you're the dog... some days you're the hydrant."

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      • #4
        Re: Cleveland Clinic - Amazing

        Glad you had such good news! My experience there has also been excellent.

        Gordon
        Myectomy on Feb. 5, 2007.

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        • #5
          Re: Cleveland Clinic - Amazing

          Glad to hear it was a good experience. Great "customer" service makes such a huge difference---especially when we are already stressed about our medical conditions. Best wishes.
          ICD 1/20/10
          Myectomy 8/25/10
          @ Johns Hopkins
          Surgeon Duke Cameron

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          • #6
            Re: Cleveland Clinic - Amazing

            I was told i had moderate HOCM and that i was sent home with a halter. I just sent it via UPS pick up by calling the 800 number. They will get it saturday i presume or monday. After that i am sure by tuesday i will hear from popovic and lever.

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            • #7
              Re: Cleveland Clinic - Amazing

              Hey Philip,
              Don't be upset if you don't hear anything on Tuesday. Let's look at this timeframe realistically. OK, so you sent the package at 5 am on Saturday morning, correct? They will get it perhaps on Monday (UPS doesn't deliver on Sunday). It has to go from the mailroom to the correct department and as you know the clinic is HUGE. The recording will be taken out of the machine and then will go into the basket with other tapes. It will then get read and dictated. It is not a STAT. That report will then go to the MD's and you will be notified. All of that isn't going to happen by Tuesday. So, please give it the time that is needed to get you the information that you are waiting for.
              Linda S
              Onward and Upward !

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

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              • #8
                Re: Cleveland Clinic - Amazing

                I sent my Holter monitor back over two weeks ago and haven't heard anything -- and I don't really expect to. Don't worry: they WILL contact you if there's a problem -- I know this from personal experience.

                Gordon
                Myectomy on Feb. 5, 2007.

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                • #9
                  Re: Cleveland Clinic - Amazing

                  I was told that we would discuss after they got it back

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                  • #10
                    Re: Cleveland Clinic - Amazing

                    Friday afternoon

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                    • #11
                      Re: Cleveland Clinic - Amazing

                      Hmmmmm.... sounds like the dark ages. My holter came with a cell phone. It recorded everything, then every hour it would send the data to the cell phone via bluetooth, and the cell phone would then send it to the center. And every 24 hours the center would send the data to the clinic for the docs to take a look at.

                      In fact after wearing it for the first day, I got a call from one of the nurses in the HCM Clinic asking me to describe what I was doing at the times that they saw pvc's or other arrhythmia in the data sent over by the center. We both agreed that whenever I felt the pvc's or anything else, I'd send a text message to her with a description of what I was doing at the time.

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                      • #12
                        Re: Cleveland Clinic - Amazing

                        I did not get anything like that accept a tachey rythmn.

                        Originally posted by terryberg View Post
                        Hmmmmm.... sounds like the dark ages. My holter came with a cell phone. It recorded everything, then every hour it would send the data to the cell phone via bluetooth, and the cell phone would then send it to the center. And every 24 hours the center would send the data to the clinic for the docs to take a look at.

                        In fact after wearing it for the first day, I got a call from one of the nurses in the HCM Clinic asking me to describe what I was doing at the times that they saw pvc's or other arrhythmia in the data sent over by the center. We both agreed that whenever I felt the pvc's or anything else, I'd send a text message to her with a description of what I was doing at the time.

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                        • #13
                          Re: Cleveland Clinic - Amazing

                          Philip, I guess you should have gone to Stanford

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                          • #14
                            Re: Cleveland Clinic - Amazing

                            Terry, please.
                            Onward and Upward !

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

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                            • #15
                              Re: Cleveland Clinic - Amazing

                              Linda, please. It was a joke since philip is partial to CC and I'm partial to Stanford.

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