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kathy61 Find out more about kathy61
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  • Cleveland Clinic tomorrow

    I am getting nervous about my trip tomorrow. My Echo's have been all over the place sometimes they show that I have a problem and other times it seems my heart is just fine. (obstruction, no obstruction, LV hypertrophy, no LV hypertrophy, SAM of mitral valve, no SAM) My last one the results came back that my mitral valve was normal which was strange because all of my echos dating back 10 years have said that my mitral valve has been messed up. I just don't know what to think anymore. I am afraid I will get there and everything will be normal and all these symptoms are just in my head. I guess people do have panic attacks that feel like this. Maybe these are all panic attacks???? I really just want answers and to live a somewhat normal life. My cardiologist says I just need to exercise and that I am out of shape... the problem is on most days I cannot get past five minutes of exercise without feeling like my lungs will implode and my heart will just burst out of my chest. Just feeling frustrated, nervous and hopeful at the same time.

  • #2
    Re: Cleveland Clinic tomorrow

    Hi Kathy,
    I think it's pretty common to have this experience - "my car makes a noise except when the mechanic is there." I've worried about this for medical things - both heart and otherwise. Usually it hasn't mattered, because they can actually tell whether there are problems even when you aren't symptomatic. Put differently, this is a great opportunity to see whether you really do have these problems. The specialists at Cleveland Clinic are VERY good at looking for intermittent issues.

    So . . . take a deep breath. Going to get checked is a good thing!

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: Cleveland Clinic tomorrow

      Yes, I know what you mean Kathy, but the two times I have been to CCF, the techs were very thorough and seemed to know what to look for. And when they asked what doctor I was seeing then asked for the suspected diagnosis, they would have that "Ah hah!" look on their face and really roll up their sleeves. I am not a clinician but it seemed to me that they know what to look for; as they just took a lot more time than most of the techs at my home practice. I also found that in the case of the echo, the techs would be very forthcoming about what they saw and explain things, instead of saying "...your doctor will explain it...".

      Good luck, let us know how it goes and say hi to J-Building for me. I'm sure it will be a lot nicer on a nice fall day than it was in January in the middle of a "Polar Vortex!"
      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


      • #4
        Re: Cleveland Clinic tomorrow

        Gordon and Angus are right on....I think everyone on the forum who has gone for their first COE eval has had the same worries....I did when I went to mayo....."What if they don't find anything? What if they just think I'm making these things up? Maybe I really am just out of shape"....All of these things went through my mind.
        HCM is a slippery beast....symptoms one day none the next, echoes changing...That's why seeing the expert in HCM is important.....They KNOW HCM a slippery beast and they KNOW how to catch it! Research has shown that the echocardiogram of an HCM patient can change not just day to day but hour to hour! So it's not that your previous cardiologists were totally crazy...it's the nature of HCM.
        At the COE, if your heart is perhaps not performing at it's worse during an echo, they may choose to give you medication to challenge your heart to show it's stuff......Or if your echo was early in the morning and then later in the day you are having significantly more symptoms, they can elect to repeat the echo.
        They know their stuff.....relax and be sure to express your concerns to the cardiologist at CCF, He/She will reassure you about this also.
        You can look forward with confidence that you will get definitive answers and a plan for going forward. Good Luck!
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

        Comment


        • #5
          Re: Cleveland Clinic tomorrow

          Yeah and don't worry; you can't study for these tests. Just be yourself and they will get to the bottom of things.
          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


          • #6
            Re: Cleveland Clinic tomorrow

            I know exactly where you are coming from, Kathy, because I had the same thoughts last week before my first trip to CC. My symptoms had been very bad for months. A few days before my scheduled trip for testing, and the day of testing, I felt tons better. Still not completely well but lots better than I was feeling. They were still able to see, via echo, what is wrong with my heart. Add to that, my problem is not very common for HCM patients but they still saw it, recognized it and knew immediately what the problem was even though I was feeling mostly OK at the time.

            They know what they are doing there. Tons of experience and talented technicians. You'll get a chance to explain your symptoms and how they change to your doctors and they'll understand. Really! They did for me. You are on the right path of getting the help that you need. Hang in there. Let us know how it goes when you get back and recoup from the effort. (I slept a lot the next day because I was so tired from the effort.)
            At least 5 years of symptoms.
            07/24/14: Age 45, diagnosed with HCM w/ obstruction.
            09/30/14: Tested at Cleveland Clinic (Ohio).
            January 2015: Approved for surgery.
            03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

            Comment


            • #7
              Re: Cleveland Clinic tomorrow

              P.S. I'd really like to slap those doctors that tell HCM patients "you just need to exercise because you are out of shape." Grrrr. If we could exercise, most of us wouldn't be out of shape! They'll understand at Cleveland Clinic. Really, they will.
              At least 5 years of symptoms.
              07/24/14: Age 45, diagnosed with HCM w/ obstruction.
              09/30/14: Tested at Cleveland Clinic (Ohio).
              January 2015: Approved for surgery.
              03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

              Comment


              • #8
                Re: Cleveland Clinic tomorrow

                Here at CCF. Definitely not panic attacks or in my mind. There is something wrong with my mitral valve. It is hitting the septum and causing obstruction. I will know more after I go back to see Dr Lever once all the tests are done. Waiting for my MRI now.

                Comment


                • #9
                  Re: Cleveland Clinic tomorrow

                  Hi Kathy, we too array CC. Probably at the same time! My husband is undergoing a myectomy tomorrow so I am kinda tied to sticking with him. But I wish you the best. All the staff and docs here are very knowledgable and happy to help. Good luck!

                  And if you see a young woman with brown hair knitting with s blue and orange REI backpack, that's me! Say hi.


                  Sent from my iPhone using Tapatalk
                  Megan, wife to Husband, Justin with HOCM
                  Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
                  Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
                  AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
                  Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
                  Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

                  Comment


                  • #10
                    Re: Cleveland Clinic tomorrow

                    Sorry for typos. Had to finish to move to a new spot.


                    Sent from my iPhone using Tapatalk
                    Megan, wife to Husband, Justin with HOCM
                    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
                    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
                    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
                    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
                    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

                    Comment


                    • #11
                      Re: Cleveland Clinic tomorrow

                      I will look for you. I'm up in J2 now waiting for a halter monitor then back down to see Dr. Lever.

                      Comment


                      • #12
                        Re: Cleveland Clinic tomorrow

                        Megan,
                        Please give Justin our love, tell him his Colorado sister Jill is thinking of him.....2 months post op, I just got back from the health club!! taking walks around the nurses station after myectomy in Cleveland (or Mayo) is a piece of cake after our mile high city. We wish him a peaceful and speedy recovery and we are thinking of you too Megan!
                        Jill C.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #13
                          Re: Cleveland Clinic tomorrow

                          Kathy.....Hope your breathing easier now that you are getting answers!! best of Luck to you. You are with the best in the world!
                          After years of symptoms:
                          Officially Diagnosed HOCM 2006
                          Myectomy 3/11/13 at non-COE
                          Extended Myectomy 7/23/14
                          At Mayo with Dr. Joseph Dearani

                          Comment


                          • #14
                            Re: Cleveland Clinic tomorrow

                            I hope the answers you got, Kathy, helped to make things less scary for you. I know reading about everyone's experiences here helped me a lot but finally getting a doctor to take me seriously and be ready to help was the best feeling. I feel so much better from just having some answers and a plan. I hope you do, too. Rest well. Fill us in when you can.
                            At least 5 years of symptoms.
                            07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                            09/30/14: Tested at Cleveland Clinic (Ohio).
                            January 2015: Approved for surgery.
                            03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                            Comment


                            • #15
                              Re: Cleveland Clinic tomorrow

                              Surgery..:/. was actually just hoping for medication change, but I guess I have significant obstruction with exertion. Dr Lever is the greatest!

                              Comment

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