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My surgery at Cleveland is July 18th


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  • My surgery at Cleveland is July 18th

    Just got home last night after two long days with Dr Lever. I guess my mitral valve is in bad shape. First the anatomy is very unusual and it has some extra pieces that are causing trouble (hitting septum, etc). My thickness isn't all that bad and actually if it were thicker the surgeon would have more to work with. Dr Lever said this will be VERY complicated (he discussed with Lytle and they've maybe only seen 1 or 2 cases similar). Because of this, they feel replacement is a strong possibility. I truly hope not, but I know they will do their best and do what is necessary for a positive outcome.

    Dr Lytle will perform the surgery. Since my BP did so poorly on the stress metabolic echo (I felt ok, though), Dr Lever, said we can't put this off. He really doesn't even like we walking around right now. Told Gary I needed to be treated 'as a princess' for the next week!!

    I have to go Friday for a catherization and he said to just stay the weekend for Monday's surgery. This was a little quicker than I'd hoped, but we'll go with it. I am leaving today for a family vacation (which we considered cancelling prior, but Dr Lever thought it would be ok to go, now he says we should have cancelled), so it will have to be cut short as I need to get ready and up to Cleveland. We will have a lot of driving in the next week (we are going to Tennessee).

    Anyway, my head is spinning, but I guess it's my turn for surgery. But, I know I am in a good place, the people were great.

    More soon, Laura
    Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

  • #2
    You are in great hands and I have every confidence that they will do the best for you. If you need a new valve thats OK as long as you regain quality of life and good health!

    You are in my thoughts and prayers during this stressfull time. If you need anything, please call the office.

    Be well... and enjoy your vacation!
    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)


    • #3

      Wow, that's a lot to absorb. I will be thinking of you and praying for a very successful surgery and recovery.

      Best wishes,

      41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


      • #4
        Laura, Best wishes - Please keep us posted. Linda


        • #5

          I do believe you are in good hands in Cleveland, please try to relax if you can and just think of all the better days ahead of you you are in my prayers

          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


          • #6
            Things happen quickly at CCF. I was scheduled for surgery before I had even seen a Dr. at Cleveland. They could tell just from looking at all the test results I sent them from my Cincinnati Dr's.

            You will be in great hands from the minute you arrive till the time you leave. You are in my prayers and thoughts every day. Enjoy your vacation and keep that positive mental attitude. The road to feeling better has started...

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


            • #7

              Being treated as a "Princess" once in awhile isn't bad at all! Everyone should be treated as a princess or prince from time to time. I'm sending my best for you for your upcoming procedure. Cleveland is a great place to be; but then, we've had the comparisons discussed before. I will be celebrating my fifth Cleveland myectomy anniversary on Aug. 2. Best to you. And, tell Gary that you should be treated as a princess always!

              Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.


              • #8
                Hi Laura,
                That certainly is a lot of information to process all at once. You will be in my thoughts and prayers. May God bless you with healing and a sense of peace.
                Have a great vacation in TN and beware of the humidity and if you drive through Knoxville do not repeat do not roll your windows down as the pollution sometimes gets very bad in the valley.
                \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
                Pierre Teilhard de Chardin


                • #9

                  I know this is all happening pretty quick, but sometimes that good. Less time to think about it.

                  If you liked Dr. Lever, I know you'll feel very comfortable when you meet Dr. Lytle. He is just as caring & as personable to talk with as Dr. Lever.

                  You're in our thoughts,
                  Cleveland Myectomy Club
                  August 31, 2004


                  • #10

                    Will be thinking of you while you prepare. Who will be posting to let us know how you are doing? Good thoughts being sent your way.

                    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


                    • #11
                      Laura.I know that everything is moving so fast,but sometimes that is a blessing in itself. if I spend to much time thinking about something Im afraid of, it only makes me more anxious.I will keep you in my prayers and look forward to a good report.take care mike
                      One day at a time.


                      • #12

                        I am thinking of you and praying for you during this time.

                        When I was at CCF, the young lady in the room next to me had a mitral valve replacement and her surgery was very successful.

                        You are in the best hands.

                        Enjoy your vacation and let us know how everything is going when you can.

                        All the best,
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.


                        • #13
                          I can not speak from experience because my surgeries (myectomys) were performed in the National Institues of Health in Bethesda (1973) and at St. Mary's Hospital/Mayo Clinic (2000).

                          I have read many posts where people expressed their satisfaction and very good experiences at Cleveland.

                          I will include you in my prayers.

                          Please keep us updated.

                          Take care


                          • #14

                            Let's not think of your case as complicated or unusual... let's just call you special! That's what my parents used to call me anyway, but now that I think about it they may have meant something else entirely.

                            Your heart couldn't be in better hands (literally) than Dr. Lytle's. Rest assured that if there is any way possible to avoid replacing that valve, he will find it.... and if he says it will probably have to be replaced, then you can feel confident that a lot of thought and care has gone into that decision. The good folks in Cleveland do everything in their power to make sure you leave there with everything you came with. (I'm still missing a sock, though).

                            Please keep us updated on how you are doing.

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


                            • #15

                              You are riot, i needed that laugh i have 7 kids in my pool right now and had to pull them all out for playing a little rough, i guess now this NaNa is mean but there was 3 boys ganging up on one

                              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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