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My 1st trip to the Cleveland Clinic

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will519 Find out more about will519
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  • My 1st trip to the Cleveland Clinic

    Hello,

    I am scheduled to go to the Cleveland Clinic on April 11th to see Dr. Lever. I was told that I will be receiving a packet from them any day now and also was told that he wants me to do some tests prior to seeing him. I was told that I have moderate HCM by my cardiologist on Jan 31st. Since then, every once and a while I get chest discomfort, the Toprol makes me tired and I just start Cardio-Rehab on Feb 28th. Some of you already came some advice to the call the HCMA center because I was looking for questions that I should be asking at my appointment. My wife tells me that I am in denial about this. Thanks again for listening.

  • #2
    Re: My 1st trip to the Cleveland Clinic

    I find it a bit odd you are already doing cardiac rehab before going to Cleveland Clinic????? So many of us got bad advice from the doctors who diagnosed our condition before we started going to the COE I am not sure I would have survived therapy before getting treated at a COE. I am far from the expert here but would think proceeding with caution on the therapy until you saw Dr. Lever would be a good idea.
    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


    • #3
      Re: My 1st trip to the Cleveland Clinic

      Since cardiac rehab is a monitored program (heart monitors, BP monitoring and 02 sats if needed), if there is a problem it will be identified and stopped. Since Will519 has recently run marathons, he is not deconditioned and I don't expect there to be a problem. Cardiac Rehab usually is ordered to assist a deconditioned person (post myectomy or MI) to become reconditioned. He is not the typical Cardiac Rehab patient. I think the purpose is to see how he responds to some more modified exercise program in terms of BP response, arrythmia's etc. which will provide more data to be able to put a good picture of his response/tolerance to exercise. Just my 2 cents worth.

      And our marathon runner will also be a role model for the other patients, and for the women's sake, I hope he wears his running shorts !! That would have made my day!!
      LindaSo
      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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      • #4
        Re: My 1st trip to the Cleveland Clinic

        Yes, Linda So! When I did cardiac rehab after my myectomy, I was by far the youngest person in the room. It was definitely not a very attractive bunch.
        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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        • #5
          Re: My 1st trip to the Cleveland Clinic

          Funny story. My first day of Cardiac Rehab. They have you meet downstairs at the facility I go to then you go up as a group. As we walked up the nurse who was escorting us kept looking at me strangely. Finally when we got upstairs she comes over to me and says "You know this is cardiac rehab right?" Without saying a word I pulled down my tshirt revealing my scar and said yes I know why I am here LOL. Being the youngest one there though isnt always a good thing. They are tougher on you for sure!!!
          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


          • #6
            Re: My 1st trip to the Cleveland Clinic

            And if you are a woman, those old guys scope you out. GIVE ME A BREAK !! BUT, it's good for the ego.
            Onward and Upward !

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

            Comment


            • #7
              Re: My 1st trip to the Cleveland Clinic

              Will519,

              Good luck on your upcoming visit to the Cleveland Clinic. I saw Dr. Lever before the new heart center was built and they were extremely well organized even then and sent me a complete schedule of my various testing in advance. I can only assume that it is even better now, so rest assured you will be in good hands.

              Jim
              "Some days you're the dog... some days you're the hydrant."

              Comment


              • #8
                Re: My 1st trip to the Cleveland Clinic

                Originally posted by Cynaburst View Post
                I was by far the youngest person in the room. It was definitely not a very attractive bunch.
                LOL...

                I kept noticing people looking at my legs and finally someone came up to me and asked where they took the vein from?

                I replied that my veins are all very much intact, thank you.

                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Re: My 1st trip to the Cleveland Clinic

                  Hello again,

                  Thank you for the information and insight and especially the comedy relief. I did noticed yesterday that at 51 years, I was by far the youngest and watching people workout on the machines in dress pants and a tie one was kind of weird. I will shock them today with my running clothes on, have not worn them since Jan 29th. Thanks again for putting a smile on my face this afternoon. Tom, thank you for your concern, I will definately stay in tune with my body when working out.

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                  • #10
                    Re: My 1st trip to the Cleveland Clinic

                    Jim, one day I was on the treadmill and a rehab newbie was on the treadmill next to me. We introduced ourselves to each other and the conversation went like this:
                    Her: How many?
                    Me: How many what?
                    Her: Stents
                    Me: What?
                    Her: How many stents did you get?
                    Me: None, my coronary arteries are wide open
                    Onward and Upward !

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

                    Comment


                    • #11
                      Re: My 1st trip to the Cleveland Clinic

                      Hi Will,

                      When you get your packet from Cleveland you will be impressed at how organized they are. When I went up there, I didn't have a huge number of questions, because I had already done a ton of research. IF you do think of things to ask, just jot them down and take the list with you -- it IS hard to remember what to ask about when you are up there. I hope everything works out for you -- you are in the best hands up in Cleveland. This is not a fun condition and, as mine did, can get more and more limiting pretty quickly. Let us know if you have any questions along the way -- I am not suggesting you ignore your doctors, but unlike at many local cardiologist's offices, there are people here with lots and lots of experience with this condition here. Best wishes!
                      Diagnosed with HOCM June 2011
                      Myectomy at CCF February 16, 2012
                      He heals the broken in heart and binds up their wounds. Psalm 147:3

                      Comment


                      • #12
                        Re: My 1st trip to the Cleveland Clinic

                        Just to add to Christy's point -- they actually like it if you come in with a list of prepared questions. They'd rather answer your questions than have them hanging out there in the back of your mind.

                        Gordon
                        Myectomy on Feb. 5, 2007.

                        Comment


                        • #13
                          Re: My 1st trip to the Cleveland Clinic

                          Hello,

                          Thanks again for the information. I just got my packet in the mail yesterday and wow, they have me down for a bunch test on April 11th then I have to go back early on April 12th for an MRI and Holter. I see that they are very organized, Register at 830am, EKK at 9am, Echocardiogram at 915am and so on. Very military like.

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