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myectomy on June 14


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  • myectomy on June 14

    Hi everyone! Hope you are all doing well.

    Well I am scheduled for a myectomy at the Cleveland Clinic on Tuesday June 14th with Dr Lytle. My wife and I will probably head to Cleveland (from NY) on June 8th or 9th. So far we plan on driving. My sister, and possibly my brother, will be coming as well for support.

    So where do you think we should stay? We are looking into the Intercontinental Suites so we could have a little more room for all. What does everyone think...any advise would be greatly appreciated.

    Any insights you can give about the surgery and the recovery would also be helpful. I am nervous now but I am sure as it gets closer I will be EXTREMELY NERVOUS!


  • #2
    Hi Vinnie,

    I have no advice about the accomodations, but I am glad that you have gotten this show on the road and you are all set. And that was good scheduling....now you will be able to attend the annual meeting before you go in for the surgery! I will be sure to learn some new jokes for you before then so I can tell them to you again and again!

    I will keep my fingers crossed that everything goes perfectly for you.


    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.


    • #3
      Unfortunately, the Intercontinental Suites only allows for double occupancy. I took my children, and wife with me for pre-op testing with Dr. Martin, and could only find affordable space with the Cleveland Clinic Guest House. Luckily, the Intercontinental Hotel, Suites and Guest house are all owned by the CCF, and they can book you accommodations at any of the 3. Good luck!


      • #4
        My Good Thoughts & Prayers are with you & Your Family. How Lucky you are, to have so much Family support!
        I spent some time @ CCF, in February & stayed @ Intercontinental & that's where I would stay again! I also suggest making the reservations directly w/Hotel, as they may be willing to give you an "upgrade" to a larger room/suite. Where ever you stay, contact the Hotel, yourself (or your wife)-be sure to mention you need a patient rate.

        Of course you're nervous, that's to be expected. I'm sure everyone who has had a Myectomy will agree that they were very nervous & frightened! Read thru the existing threads, so you get a realistic idea of what to expect during recovery. Although everyone is unique, most of us had the toughest part of our recovery during the first 2-3 weeks. We will all also agree, we are very glad we did it!

        We are here for you, for any questions/support you need.


        • #5
          I'm really glad you now have a plan.


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


          • #6
            My wife and I stayed at the Guest House last year during pre-op. My wife, sister-in-law and best friend stayed there for two weeks during post-op. It was very nice. I will be at CCF on June 28 for my 1 year check-up and will be staying at the Intercontinental this time. I told them I work for the goverment and they gave me the room for the same price as the Guesthouse ( i really do work for the gov).

            PM me and I'll give you the poop on getting a myectomy at CCF. I hope your not there when I get there, but if you are I'll stop bye and say hi.

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


            • #7

              I am glad to hear that you are on your way! You are in my thoughts and I KNOW you are headed to great care!

              Best wishes,
              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)


              • #8
                Congrats, Vinnie. You're very well-prepared and will do great.

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


                • #9

                  Sending my prayers with you, i had one and they are not as bad as i thought, well not for me anyway stay positive and everything will go great

                  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


                  • #10

                    Hi everyone! I just want to thank you for all your prayers and good wishes. It is great to have such a supportive group of people in my corner who know what I am going through and can relate.

                    I appreciate your feedback regarding accommodations. We will have to get some price quotes and take it from there.

                    So now we just wait until the time comes. I look forward to meeting some of you at the annual meeting.

                    Thanks again!



                    • #11
                      Vinnie ,

                      Glad things are progressing along and you can finalize the details in prep for you surgery. We will be all here to support you.

                      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


                      • #12
                        Well Vinnie, I sure wish you the best! All we have to do is get this behind us. Be in touch, PM me anytime you want. Take care! Lisa I. (myectomy scheduled one week after Vinnie's...)


                        • #13
                          Dear Vinnie-- When are you leaving? What is your schedule? You are in my thoughts and I'm sending most positive well wishes your way. Is your wife going to be able to give us some updates? Both of you take care, Lisa Inman


                          • #14

                            I'm sure you will not have anything to worry about, given that you will be having your procedure at the Cleveland Clinic. I reckon that if I hadn't had so many complications with my myectomy (almost 3 months ago), it would have been really ok to deal with. You are very unlikely to experience the complications that I faced.

                            Just remember that you will be wiped out for weeks after your surgery and that you will also have days of being down and even depressed. This is entirely normal. But sooner rather than later you will feel great.

                            Good luck,

                            Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.


                            • #15
                              surgery and accomadations

                              Hey Vinnie,

                              First of all let me say that if you put your faith and trust in Dr. Lytle you will do great. He is a great surgeon and believe me he will shoot you straight. Cleveland Clinic is the best. The doctors and the nursing staff are just great. If you happen to run into Carl, Missy, Suzie or Dave in the Intensive Care (nurses) Tell them Christy Dalton said Hi. I think they will remember me as I stayed with this group for 17 days. I had pneumonia and they would not move me.

                              Vinnie we stayed about 20 miles from the hospital and rented a car due to the expense. We stayed in Olmstead at the Studio Suites. Let me tell you this was a really nice place it had the bedroom, living room, full kitchen with utensils, microwave, stove and dishwasher and a table and chairs. It was a really large room and the price was extremely cheap. They even lowered the rates when I went into the hospital.

                              If you would like more info email me at [email protected] and I will try to help all I can.

                              As for your surgery and recovery just know that you are at the #1 hospital in the nation 10 years running. They don't get that unless they are the best. I know you will do great as I know Dr Lytle will take great care of you and your family. Just listen to what they have to say and do it because they really do know best.

                              Wishing you the best and praying for you and your family. Keep us all posted as to how you are doing there is computers in the hospital..

                              We all care and love you and will try to help in any way that we can....

                              Christy Dalton
                              I pray that God will place his loving arms around you and hold you in the comfort of his love.