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Thumbs Up for Dr. Lever & Cleveland Clinic

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Bucky Engineer by Education, Self Professed Expert in Nothing Find out more about Bucky
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  • Thumbs Up for Dr. Lever & Cleveland Clinic

    Well, what a couple of days in Cleveland. After a year and a half of cardiologists saying I was non-obstructed and looking at me as if I were not telling the truth, but with continuing symptoms and worsening symptoms in the last couple of months, I finally decided to get to a place where the experts hang out, Cleveland Clinic. I had first seen Dr. Lever at the HCMA meeting last June in New Jersey……I didn’t get a chance to meet him at that time, but he was heralded as one of the “Experts” in the field.
    So off to Cleveland I went to meet with Dr. Lever and have tests run in brand spanking new Cleveland Clinic Heart Building. Well, the new building is certainly impressive, so I thought “this is a good sign.”

    Over the next 48 hours Dr. Lever proved to be dedicated, funny and absolutely serious about getting to the problem if there was one.

    It turned out some of the more conventional tests didn’t show him exactly what he was looking for. Finally he ordered a backup stress test and “bingo”, not only was I obstructed, but very obstructed. . I was relieved to finally have an answer on why my symptoms had been getting worse and he was so proud of himself for finding the answer that he was going up and down the hall telling his colleagues about it. Maybe my Ultrasound will show up at the next meeting – who knows.

    At any rate I now have to schedule a Myectomy at Cleveland Clinic and while I am nervous about this I am very relieved to have an answer…..Dr. Lever assured me that the operation would make me feel better and based on the way I’ve been feeling lately…….that won’t take too much….so I am trying to keep my expectations simple since I know Myectomy results vary and the "staying power" of Myectomies seems to vary also, ie. how long they are effective. Maybe I’ll be able to dance rock and roll again…….that’s all I ask even though I am an old guy.

    At any rate I would never have found Dr. Lever or any of the info I have on HCM without HCMA and all I can say is thank you Lisa and the rest of the community. I'll keep you all posted on the scheduling.
    Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

  • #2
    Re: Thumbs Up for Dr. Lever & Cleveland Clinic

    I'm so glad you finally have answers, a doctor willing to track down the answers, and a plan in motion!

    Belinda

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    • #3
      Re: Thumbs Up for Dr. Lever & Cleveland Clinic

      AHHHH ANSWERS~!!!!!!!!!!!!!!!!! Good for you!
      There is a reason the HCMA works with the doctors we do!

      Take care!
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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      • #4
        Re: Thumbs Up for Dr. Lever & Cleveland Clinic

        Doug - I am glad that you stuck with it and made it to one of the big guys who finally figured it out. I know that you have been suffering for awhile now, so here's hoping that you are now on the road to feeling ALOT better.

        Best,

        Cynthia
        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: Thumbs Up for Dr. Lever & Cleveland Clinic

          Thanks Lisa, Cynthia and Belinda....yes....I do think you must go to one of the "Experts" and not one of the facilities that would like to be experts, but aren't quite there yet. I continue to be amazed by the number of Cardios who are clueless on HCM...is it because our numbers are really not that big (I find that hard to believe) or because they don't want to take the effort to learn. I guess there are 100's of heart conditions one could get to be an expert in but I've got to think with the kind of participation I see in HCMA we would be one of the large sub groups....

          I was VERY IMPRESSED by Cleveland Clinic (I'll probably be impressed by the bill too, but that's another matter). It is huge, of course, but they are very big on being friendly and helpful. I really didn't have to wait too long for any test and everything was new and up to date - except me..........
          Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

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          • #6
            Re: Thumbs Up for Dr. Lever & Cleveland Clinic

            Doug,
            The reason the local cardio's don't want to deal with us is that we take too much time. Remember, time is money. How frequently have you had a 15 min appt ? I don't think I ever have, and let me assure you, after my 20 minutes are up, he's done and off to his next patient.

            You will be surprised at the bill. I expected it to be much higher than it was. My cost for the surgery was LESS than a friends who had bypass surgery at a local hospital.

            Let us know when things get scheduled for you. I know it is a relief to get some definitive answers.

            Linda
            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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            • #7
              Re: Thumbs Up for Dr. Lever & Cleveland Clinic

              I'm so glad you finally got some answers!

              Leon
              God Squad co-moderator
              Nothing is as gentle as strength and nothing is as strong as gentleness

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              • #8
                Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                Hi Doug,
                Isn't it strange . . . we're all congratulating you because you were told you have a serious problem and need open-heart surgery!

                Seriously, it is good news -- myectomy isn't any fun, but you'll feel much better. And now you don't have to listen to doctors who're either heading off in the wrong direction or blowing you off.

                As you now know, Dr. Lever is a very bright guy and he cares a lot. And the two surgeons there that do myectomies are both great too. You're in excellent hands.

                Gordon
                Myectomy on Feb. 5, 2007.

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                • #9
                  Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                  Bucky -- interesting to read about your CCF experience AND mbcube's doc exeperience ("talk to the hand!" or, as donald trump would say, "you're fired!") on this msg board the same day. If there isn't a better "compare and contrast" between docs at specialty and non-specialty centers, then I don't know what is. I hope folks that are relatively new to all of this are paying attention.

                  And you know, frequently when I would read one of your posts or thread you started describing your symptoms, I would say to myself "Dang, it sounds like Doug's obstructed -- but I know he's said that he's not!" Most recently when you posted about how you felt after eating, I was really puzzled; you described almost exactly how I felt after meals prior to my myectomy, symptoms that are often experienced by those who are... obstructed.

                  Congrats on getting the thorough checking out at a real HCM center and some answers that really make sense given your symptoms. And as Gordon said, you hardly want to congratulate someone for scheduling a myectomy, but now that you know you're obstructed, there's a really good chance you'll notice a real difference afterwards. The mantra that the mods and myectomy vets on this board always use continues to apply -- everyone's different, mileage varies, etc. Keeps us in the loop -- I'm sure you will!

                  Here's one wolverine rooting for a buckeye,
                  Rich G
                  Last edited by rgong; 01-14-2009, 11:41 PM.
                  Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

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                  • #10
                    Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                    Well, well, well, just had to join the club didn't you! I bet your doing it just to get another flag on your badge when you go to this year's HCMA Meeting!

                    Really Doug - Glad you finally got the answers you were looking for and needed to get! I can't speak about CCF, but there are plenty here to assist you in preparing for the big M. You'll do fine! Best to annie & harry!
                    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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                    • #11
                      Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                      Thanks to all. Yes it is funny..."hey you get to have them cut your sternum in two, open you up and do funny things to your heart......You are lucky"...We'll in many ways I am, right?...now if I could just magically transport myself to a point in time 2 months after the operation!!!!!!!!!!!!

                      Also, MbCube...great talking to you when i was in Cleveland....since we've been conversing over the last couple of years I knew the frustration you felt with your Docs and, of course, your path up to your Myectomy.

                      Now I just have to figure out how to fit this in....I'll onlly be out of action for what three day. One day for the operation....One day in the Hospital....One day of outpatient healing and then back to work?????????

                      Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??
                      Diagnosed in June 2007, Pacemaker Oct 2007, Myectomy in Feb 2009 at Cleveland Clinic, Two daughters, both checked with Ultrasounds in 2008, all OK so far. Two grandchildren both check with Ultrasounds and all is OK to date. OH YES....Harry, the Doggie, says Hi also. sigpic

                      Comment


                      • #12
                        Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                        Isn't it strange, feeling relieved at horrible news. I know I was. I remember feeling the weight lifting when I was told "yes it's serious and you need a myectomy... soon" ....See I told you so I thought I was dying and I was right!

                        I guess we are as complex physically as we are mentally.

                        This is probably the only place where you'll receive congratulations with the full understanding of all that comes with it.

                        CONGRATULATIONS!!!

                        Comment


                        • #13
                          Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                          Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??[/QUOTE]

                          I think six to eight is realistic. I started back half days at six weeks.
                          I did the half days because it was early summer weather was nice but I needed the money. I was also getting bored relaxing and starting to feel well again I needed some mundane tasks to make me feel well rounded.

                          Comment


                          • #14
                            Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                            When can you return to work ? Depends on what you do. I am in healthcare management and I returned for half days at 8 weeks, to learn that my supervisors had "saved" all their problems for me. That in itself was more than I could handle. Oh brother............. Lay the ground rules BEFORE you have the surgery.

                            Linda
                            Onward and Upward !

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

                            Comment


                            • #15
                              Re: Thumbs Up for Dr. Lever & Cleveland Clinic

                              Originally posted by Bucky View Post
                              I'll onlly be out of action for what three day. One day for the operation....One day in the Hospital....One day of outpatient healing and then back to work?????????
                              Well, hold on there buckeye. You're probably being tongue in cheek , but just in case... most of us are lucky to be out of the hospital within 5 days. I know some have been in 7 - 10 days, even longer if there are complications. Everyone's different.

                              Maybe I should ask folks to comment on their total time spent recovering. I am hearing 6 to 8 weeks....At what point are you able to return to work and sit at a desk??
                              I was online for short periods and posting to this msg board from the hospital, and somewhat regularly once I got home. For longer periods of sitting at a desk, I recall I was able to check work stuff from home at around 4 weeks -- probably earlier if I wanted to (but I didn't -- was enjoying my time off too much). I did go back to work somewhere at the 6-7 week mark, about a week after I got cleared to drive. Even at that point, you're still recovering, and you'll notice improvements even after 8-12 months. But as far as desk work -- you're really limited only by how tired you are in general, how long you can sit up, and mentally what you want to take on. And of course whether you're taking any mind-altering drugs (i.e. narcotic pain killers)

                              But really, take all the time you need. You'll never have an excuse as good as this one to slow down and check out of the rat race for a while. And Linda's right, set the proper expectations with your boss and workplace (not to mention yourself) about your recovery before you leave for surgery.
                              Myectomy and mitral valve repair, April 2007, St. Luke's Hospital (NYC)

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