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Myectomy scheduled for Cleveland Clinic Dec 9

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  • #1

    Myectomy scheduled for Cleveland Clinic Dec 9

    Hello Everyone,

    My Myectomy is currently scheduled for the Dec 8 depending on this Monday's workup and surgery clearance , etc.
    -- Doctor is Lever, Surgeon is Smedira.

    Thanks so much for prayers and advice from Lisa, Patrick ,Felix, Ronnie,and other well wishers ,

    One Question I keep forgetting to ask the myectomy veterans?
    I know HCMers are familar with all kinds of chest pain.

    Other than the potential afibs, irregular beats, sternum pain, etc,etc...

    How did your heart actually feel while it's septum and aorta are healing?
    Did burn, was it sore? , stabbing pain, etc?

    Thanks so much,

    Edwin
    Tags: None
  • #2
    Re: Myectomy scheduled for Cleveland Clinic Dec 8

    Edwin,

    Never could feel any pain related directly with the heart. The pain from the ribs is what I felt the most. To me , it took my mind off anything involving the heart.

    Don't forget to take good pillows with you, the one's at the hospital are bad.

    Good luck on the 8th and keep us posted. It was good talking to you and call if you need anything else...


    Tigger1
    "Real courage is being scared to death...but...saddling up anyway"
    " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

    Comment

    • #3
      Re: Myectomy scheduled for Cleveland Clinic Dec 8

      Edwin,

      Best of luck to you this upcoming week. I had my myectomy in Cleveland six months ago now... Dr. Lever is my specialist, Dr. Lytle performed the surgery. Aside from the normal sternum pain associated with the surgery, i had no pain whatsoever from the heart itself.

      I have nothing but great things to say about the folks in Cleveland, and know that you will have the same experience as well. Most of the time i feel like i don't even have HCM anymore... although i do get the occasional reminder when i do something stupid, overdo it, lift something i shouldn't, or go long periods of time without enough sleep. (Like right now... studying for final exams!)

      You must realize by now that you are in the best of hands, and that you will be getting top-notch treatment all the way. Don't let the nurses be stingy with the treats... there's a whole refrigerator full of popsicles and ice cream down in the nurse's lounge

      Take care,

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

      Comment

      • #4
        Re: Myectomy scheduled for Cleveland Clinic Dec 8

        Edwin, Best wishes to you! We'll be waiting for progress reports. Linda

        Comment

        • #5
          Re: Myectomy scheduled for Cleveland Clinic Dec 8

          Good luck Edwin, I see those doctors names mentioned many times here for others that have had the surgery, so you are good hands.
          Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
          So if you are capable of thought then you are capable of great things
          Good luck and stay well.
          Glen

          Comment

          • #6
            Re: Myectomy scheduled for Cleveland Clinic Dec 8

            Edwin

            Good Luck, you will be fine, you are in good hands in Cleveland

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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            • #7
              Re: Myectomy scheduled for Cleveland Clinic Dec 8

              Best wishes Edwin . I will keep you in my thoughts and prayers.

              Pam
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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              • #8
                Re: Myectomy scheduled for Cleveland Clinic Dec 8

                Update:

                Monday: Went through my battery of tests: bloodwork, EKG, Echo, 3D echo, even did a stress echo. Went 12 minutes on stress echo :P

                Cleveland Clinic is really huge.

                Met Dr. Lever. Cool, he's a native Pittsburgher too, go Steelers



                With 50 mg of Atenolol my resting gradient is only 10 - 20 mmHg. With exertion it goes up to 100+mmHg. Without the Atenolol it was even 100 mmHg at rest. I also have Blood Pressure drops with exertion.


                There's also a severe mitral leak, which probably account for SOB and problems laying flat. Although I've never had any problems with fluid accumulations to date.

                Interesting finding that Dr. Maron pointed out, and Dr. Lever confirmed with the stress echo is that my mitral valve hits against the thickened part of my septum. And the majority of the septal thickness is concentrated in the area.

                Goal is to trim mitral valve and cut out piece of the septum
                Current septal dimension is 2.3 mm

                I'm currently wearing one of the new digital 48 hour holter monitors. In search of V-tachs. Better than giant 8-track models

                Met with PreOp screening today.

                Tomorrow:
                Will check on some abnormal Liver Tests, and meet with surgeon, Dr. Smedira tomorrow.

                Surgery scheduled for morning of Thursday Dec 9

                Thanks again for your prayers and well wishes.

                --------------
                Edwin

                Comment

                • #9
                  Re: Myectomy scheduled for Cleveland Clinic Dec 9

                  Edwin,

                  We will all look forward to hearing a good report from you soon! Meanwhile we will pray that all goes well today and tomorrow and that the days after that will be much better than you would dare to dream of.
                  Rhoda

                  Comment

                  • #10
                    Re: Myectomy scheduled for Cleveland Clinic Dec 9

                    Edwin,

                    Good luck on Thursday and keep us posted...


                    Tigger1
                    " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                    Comment

                    • #11
                      Re: Myectomy scheduled for Cleveland Clinic Dec 9

                      I hope and pray that all goes well on Thursday. They'll take great care of you!

                      Reenie`
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment

                      • #12
                        Re: Myectomy scheduled for Cleveland Clinic Dec 9

                        Will be thinking of you on Thursday.
                        Hope to hear that you’re out of the ICU on Friday and in a room on the 8th floor.

                        We expect that you will have no problem walking the halls by Saturday & you will find your way to the computer (it is in the lobby near the elevators) to let us know all is well.

                        Okay, if your room is too far from the computer, we expect to hear from you no later than Sunday.

                        Wishing you the best & may your recovery be the easiest of all.

                        Stuart
                        Cleveland Myectomy Club
                        August 31, 2004

                        Comment

                        • #13
                          Re: Myectomy scheduled for Cleveland Clinic Dec 9

                          Hi, this is LeSans, Edwin's wife. The Cleveland Clinic provides a free and very user-friendly website so that I can keep everyone updated while in the waiting room during the surgery. If you are interested, go to www.thestatus.com. The patient name is "montgomery" and the password is "pray123".

                          We have to be at the hospital at 5:15AM, Thursday 12/9/04. We had a fish dinner and Edwin has already showered in the anti-bacterial soap from the hospital and he is in bed listening to relaxation tapes.

                          Please keep us in prayer. This is my first time looking at the message board, although Edwin has been telling me about his conversations. This has been most helpful and comforting to him.

                          Thank you, LeSans

                          Comment

                          • #14
                            Re: Myectomy scheduled for Cleveland Clinic Dec 9

                            Prayers go out to you and your family . May he have an uneventful recovery and hear from him soon.

                            Mary S.

                            Comment

                            • #15
                              Re: Myectomy scheduled for Cleveland Clinic Dec 9

                              LeSans,

                              It's 5:30 am and i'm here at work. I will be checking in as the day goes to see how Edwin is doing. My thoughts and prayers are with you and Edwin. Keep a " Positive Mental Attitude " and the day will go by quickly.


                              Tigger1

                              " real courage is being scared to death...but saddling-up anyway "
                              " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                              Comment

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