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  • #16
    Re: Cleveland Clinic tomorrow

    Off to bed...this was a long day!

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    • #17
      Re: Cleveland Clinic tomorrow

      Just think of how great you'll feel once the surgery fixes the obstruction. Rest well.
      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

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      • #18
        Re: Cleveland Clinic tomorrow

        Hi Kathy, the initial prospect of surgery is a little intimidating, but if they recommend, it must be better than the alternatives. Embrace it and don't look back.

        Joel


        Sent from my iPad using Tapatalk
        Joel

        Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
        2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
        June 2014 DX HOCM at Johns Hopkins
        October 2014 Myectomy and Cryomaze at Mayo Clinic

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        • #19
          Re: Cleveland Clinic tomorrow

          The COEs do not recommend surgery lightly.....when they do it is because they feel it is the best choice to get you the highest level of functioning. My cardiologist at Mayo said If I wanted to, I could try another month on an increased dose of Disopyramide.... But ultimately he did not feel that would give me lengthy relief if any. So I went ahead with the scheduled surgery and VERY glad I did.
          Are you going home now? Or is surgery already scheduled?
          Hope you slept well and best of luck you are in good hands.
          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

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          • #20
            Re: Cleveland Clinic tomorrow

            Yeah, there's no shortage of business at CCF; if they are recommending surgery, they really believe that you will benefit.

            Coincidentally, I just had a routine follow up with my Cardiologist yesterday and he was quite impressed with my condition and lack of symptoms. He admitted that while he has seen patients go for for surgery at Jacksonville, Emory and others, that he has seen the best results from Mayo and Cleveland. He mentioned that they do maybe 6 myectomies a year at St Vincent's in Jacksonville, and when I told him that Smedira at CCF personally does over 200, he was astonished. He also said that my clinical results were "out of the park".
            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

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            • #21
              Re: Cleveland Clinic tomorrow

              I agree with Darlene. I had a local cardiologist tell me everything was fine after multiple tests and a cath. He told me to ignore the chest pain and continue to do the activity. He said that just like people who suffer from migraines learn to deal with it and go to work, I should do the same and ignore my chest pain. He's not that good of a cardiologist and I suspect he would not have made a good Neurologist.
              The echo's that are performed at a COE to rule out HCM are far superior than an echo at your local center.
              Dx with HCM November 2009
              Myectomy and Mitral Valve Repair @Tuft's March 2010

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              • #22
                Re: Cleveland Clinic tomorrow

                Hey Angus...I just had my check up on Tuesday ..... My cards doc spent 30 mins showing me all my before and after Echos...from the first local myectomy and the second myectomy from Mayo. OMG! The first set didn't look any different before and after...the second set, after Mayo, looked like a road scraper went through and removed all the bumps!
                You won't believe this but I actually went to the gym yesterday! 20 mins on the treadmill and 1 hr senior fitness class....I don't know about slinging cases of Gatorade, but for a 65 year old second timer.... I am doing really well...seems I really turned a corner about post op week 9-10.
                Hope all our stories give you encouragement.....All of you headed for surgery.... Kathy, Justin, Joel We are with you!
                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

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                • #23
                  Re: Cleveland Clinic tomorrow

                  Thanks for all the encouraging comments. I was not happy to hear surgery, but I am so tired of not being able to do anything without gasping for air. I want to enjoy spending time with my grandchildren. I get so exhausted that I don't get to spend the quality time with them that I would like. This last summer I did not take them to the park, not even once and we always spent a lot of time at the park. I just couldn't do it this year. My house needs a good cleaning. I do the basics when I feel good, but I haven't done a good deep spring cleaning for a couple of years, and I can tell. I have a lot of project that have been put on hold for the last few years because I can't breathe or I am so exhausted, not to mention the nagging chest pain. I want to be able to enjoy life again. Like the song goes " I'm much too young to feel this d**n old."

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                  • #24
                    Re: Cleveland Clinic tomorrow

                    Can anyone help me with questions I have about getting the septal ablation as my cardiologist told me to start researching the surgery.

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                    • #25
                      Re: Cleveland Clinic tomorrow

                      If you have questions about ASA (alcohol septal ablation) you can either PM or email me and I will answer to them best of my knowledge and ability. I had this procedure done 4 years ago.

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                      • #26
                        Re: Cleveland Clinic tomorrow

                        Andy - You came to the right place for information on HCM - Welcome! Frosty is a great resource for first-hand information on ASA. I'd suggest you get evaluated at a COE (center of excellence) to see what other options you have available. At a COE, they see only HCM patients and are aware of the latest advances in the treatment of HCM. Most cardiologist have a really basic understanding of HCM and in reality - they see very few patients with it in their careers. They may promote other medications first. Surgery is usually done as a last resort to alleviate symptoms.
                        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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                        • #27
                          Re: Cleveland Clinic tomorrow

                          I would appreciate it if you could point me in the right direction.
                          I'm just north of Tampa fl and I think the mayo clinic is my only option but still run into the problem of no insurance no medicad.
                          I'm in the stages of syncope,icd and b blockers are working fine together.

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                          • #28
                            Re: Cleveland Clinic tomorrow

                            Hi Andy,
                            And welcome.

                            I'm not sure why you say Mayo is the only option.

                            The best thing to do (ignoring the insurance issue for the moment) is what Marc suggested: visit one of the centers of excellence and consult with the specialists there. That could be Mayo (the one in Minnesota, not the one in JAX), or Cleveland Clinic, or any of several. They can discuss with you the risks and benefits of different procedures, if one is really indicated.

                            Suggestion: why don't you call the HCMA office tomorrow and arrange to talk with Lisa Salberg? This is a lot of what she does - helps people understand what questions they should be asking, what the doctors have said, and what doctors and centers they might do well to consult. I really benefited from that conversation with her, almost 8 years ago, and I'll bet you will too. Since she's a former HR person, she also knows a lot about these centers and issues of no insurance.

                            Gordon
                            Myectomy on Feb. 5, 2007.

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