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  • #1

    Here at CCF!

    Hi everyone

    I am here in Cleveland, like I said earlier in the other post.

    I met with Dr. Lever, the man is a god!

    I also met Dr. Smedira -- brilliant!

    They both are so brilliant. And I can say this with complete truth and accuracy, I have seen many, many cardiologists in 5 different hospitals in Phoenix/Scottsdale AZ and those doctors in AZ have no idea about HCM or how to fix it.

    OMG I love CCF.

    If I did not have 2 little kids at home in Phoenix, I would move to Cleveland, honestly.

    My surgery is scheduled for Wednesday May 4. They said they could fix this !!!!!!!!
    Can you believe it?!! I am so happy, OMG, I may be able to have a life again.


    Dr. Lever is fabulous, and he take this condition very seriously. He knows everything about it, I have never met another doctor like him -- ever. (And I have met a lot of doctors, in the double digits.)

    I wanted to hug Dr. Lever and thank him for all of his dedication and help for people with HCM/HOCM. I totally love him.

    And if anyone thinks that CCF is inadequate in anyway -- GO TO PHOENIX!
    You will think very differently, very soon.

    The CCF is amazing. It is very well organized and set up extremely well for people who travel here. And everyone is so kind and understanding.


    I wil post again soon. Thank you everyone here for your support and concern.

    Hugs

    Eve
    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.
    Tags: None
  • #2
    Eileen, I wish you the best as you move on thru the the next few wks. I'm so glad things are coming together for you. We'll be waiting for updates. Linda

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    • #3
      Eve

      I'm keeping you in my prayers and know everything will great again soon


      Big Hugs from Virginia

      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

      Comment

      • #4
        Eve,

        I love that positive attitude. Keep it the whole time and things will go great. I'm glad things are going great for you...Stay POSITIVE


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

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        • #5
          Septal Reduction (Myectomy/Alcohol septal ablation/other)

          Eve, Glad you made it to Cleveland. You flew, we drove. The eight and one-half hour drive down was a breeze to the eleven and one-half hour drive home. Sorry to have missed you when you arrived. I was there for an EP check-up and radio-frequency ablation (for a-flutters) on the 26th. I had a myectomy in Aug. of 2000. Keep up your positive attitude! I can sing praises for both Dr. Lever and Dr. Smederia myself. I know I wouldn't be here today without their intervention. At least I had local cardiologists that knew enough to send me there in the first place, when meds didn't seem to make any difference. Keep us informed of your progress. We will all be praying for an easy surgery and a speedy recovery for you.
          Dorothy

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

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          • #6
            Great news, Eve. I was thinking about you as I left work today, thinking maybe your surgery was tomorrow--so now I know for sure. I'll be sending my best wishes your way, thinking of you in this before/during/just after phase of surgery. I'm so glad they think it will give you a big improvement. Thanks for keeping us posted. Stay positive! Best wishes!! Lisa I.

            Comment

            • #7
              Eve,

              So glad to hear how positive you are. I also thought of you today and remembered that you scheduled for surgery on Wed. I will definitely be thinking of you and am praying too.

              Best wishes and of course "HUGS" to you!

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

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              • #8
                Eve,

                Good luck on Wednesday. I hope that all will go well for you, and that you will see a miracle.

                Take care, and keep us posted.

                Debbie

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                • #9
                  Eve,

                  Thoughts and prayers for you . I will be watching to read updates on how you are doing. You are in good hands and soon the hardest days will all be behinfd you.

                  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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                  • #10
                    Hey Eve! Just want to wish you luck for tomorrow. You are blazing a trail for all of us that follow and it is great that you are so positive. I hope all goes well and let us know how you are doing when you feel up to it.

                    Vinnie

                    Comment

                    • #11
                      hi eve you will be in my thoughts and prayers tommorrow.I pray all will be successful.tell your mom thanks for keeping us updated,and IM GLAD TO HEAR YOUR IN GOOD SPIRITS.take care mike
                      One day at a time.

                      Comment

                      • #12
                        Eve I will be waiting to hear how you are please keep the good thoughts ok and you will do fine

                        oxoxoxoxoxo

                        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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                        • #13
                          Thinking of You

                          Just letting you know James and I will be praying for you that everything will go wonderful! I know you are in awesome hands! We pray for a speedy recovery with no problems! Good Luck and God Bless! Janet and James
                          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.

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