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Home from myectomy at CCF


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  • Home from myectomy at CCF

    Hello everyone!

    Please let me first say, thank you all so much for all the prayers and well wishes.

    I had the myectomy done on May 5. I stayed in the hotel for about 10 days before the 4 hour flight back to Phoenix.

    I received excellent care at CCF.

    Dr. Lever was absolutely fantastic. The friday before I left, he took a lot of time out of his very busy schedule to see me and check everything so that I was clear to go back to Phoenix.

    Dr. Smedira is (I want this to sound right) like a exalted form of intellegence. It is like he is a superhuman being -- extremely brilliant.

    The coolest thing I ever did in my life was shake Dr. Smedira's hand, I started to cry, I thought "his hand touched my heart." It was so cool.

    I am still sore and tired at times, but I am okay. The recovery was tough, but any open heart surgery is going to be tough.

    All of the people at CCF really go out of their way to help you through this tough time, they understand it is difficult to go through.

    My septal wall was 27mm, now it is 10.
    I can feel the differnce, it is absolutely incredible.

    My lungs are still a little tight, I am walking more now. My lungs are clear, just a little tight.

    I am taking advil for pain, (every 7 hours) I cannot tolerate narcotic pain medicine very well. I did not do very well on oxycotin (sp?) when I was in the hospital.

    My heart feels so clear and open, it is somewhat hard to explain. I have never felt my heart so normal in my life.

    I am a little tired, so I will check in with everyone again soon.

    Thank you again everyone for all of your support, it means so much to me. Thank you.

    Hugs to all,
    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.

  • #2

    I'm so happy you are OK, and I'm glad you have had such a great !!!!! experience, you'll see pretty soon you will feel brand new again, i wish you all the best i truly do

    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


    • #3
      I'm so happy to hear you're feeling so much better!!! Write more when you can. For now rest while you can.


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


      • #4

        I was so thrilled to see your post! I am happy that you are resting at home now and was able to give us an update. WOW - you can actually feel that your heart is working better - that's awesome! My surgery is scheduled for June 8th - I hope I can come through it like you have. Best wishes, gets lots of rest, and mucho HUGS back to you!

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


        • #5
          What great news! May all the rest of your news be as good.



          • #6

            Wow!!!... so glad to hear that you are recovering nicely and that the surgery went well. Hearing your opinion and success at CCF gives me great hope for my upcoming myectomy.

            Get tons of rest and be well!

            Best wishes,


            • #7
              Septal Reduction (Myectomy/Alcohol septal ablation/other)

              Eve, so glad to hear you are having such wonderful feelings! We pray that your recovery will be an easy one. I remember that after my myectomy (2000) that same wonderful feeling of being able to breathe and not be SOB. I am sure that your children are very happy to have you home. I hope that you have some help, as children can be very demanding, even when they think they are helping you bunches.

              I must add that I had the same doctors (Lever and Smedira) way back then in 2000. Just think of the experience they have gained since they operated on me! And, I'm still around to talk about it.

              Continue to keep us informed of your healing process. Tell us what milestones you are making! Take care.

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


              • #8

                What a joy! I am so happy for you. May you continue to receover with speed and ease.


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


                • #9
                  GREAT to hear from you!

                  I was so glad to see a post from you and hear you are doing great! I will continue to think of you and remember you in my prayers! Janet
                  My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.


                  • #10

                    I'm so glad to hear that you are doing well. I hope that you will continue to improve every day! It's awesome that you can feel such a difference already.

                    I really am glad for you.



                    • #11
                      Me too, I was so glad to see the post from you! Welcome back.

                      I am so glad that you are feeling the improvement even though it was tough. I hope you can rest up now and keep feeling better--but keep us posted, ups or downs. I'm glad you are home now and agree that I hope you have help with the kids and keep resting.

                      It is thrilling that you can feel improvement in your heart now. Take good care of yourself! Lisa Inman


                      • #12

                        I'm so glad that you made it back to Phoenix safe and sound! Isn't CCF awesome? With each passing day you're feel better and stronger. Sounds as if you're feeling like a "new woman" already...I'm so happy for you!



                        • #13
                          Excellent news! Glad to hear that all went well and that you feel much better. Was wondering what had happened!

                          -- Tim
                          Life is a banquet...and I got botulism! -- Me

                          If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry


                          • #14
                            Boy Eve , you had me worried ...but now so glad to read your post. Continue to rest and feel better, the worst is surely behind you.

                            Hugs, 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


                            • #15
                              Congratulations. I am so glad things have gone well.

                              Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                              ICD&Pacemaker 1996
                              Heart transplant March 19, 2004 @ Mayo Rochester
                              Mom of Kaye.


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