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AHHHH!! I have an appointment!


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  • #16
    Originally posted by Burton Borrok
    Now you’d best keep us posted on your progress – Phoenix is not all that far from Las Vegas you know.
    Don't worry Eve, we'll all back you up on the restraining order if you need to get one.

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


    • #17

      I am so happy you are going to see Dr. Lever at CCF! Today is the first anniversary of my myectomy. I love Dr. Lever, Dr. Smedira, Dr. Thomford and all my CICU nurses. Karen, Dr. Lever's Sec. is fantastic. These people are truly caring people who have their act together.

      My quality of life since the myectomy has been wonderful!! I can do so much more and feel so good, it's hard to believe at time. If fact, I have tears in my eyes now I as type this to you.

      In my opinion, CCF is the best. The "run of the mill" cardiologist throughout the USA, in my opinion don't have a clue what HCM is all about.

      I think once you visit CCF you will be ready and will to begin your journey back to a better quality of life and the promise of more great years to be with family and friends.

      May God Bless you!



      • #18
        Wonderful news. Not only do you need to follow through with this, you deserve this chance at a happy life. You have much to live for and little ones who need you. I hope you feel the excitement of seeing some sunshine through the clouds-finally. I know we are all excited for you, and want to be with you every step of the way. Best wishes.

        It's not what you gather, but what you scatter that tells what kind of life you have lived.

        Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.


        • #19
          Congratualtions! This must be scary, but you rate expert care and I'm hoping that you will be greatly relieved to have the quality of information and support that they can offer you. Keep us posted! I'm wishing you and your family the very best.

          You are always giving those in need wonderfully huge "parenthetical" hugs, so here's some for you:

          ((((((((((((((((((((((((((Eve and her family)))))))))))))))))))))))))))))

          And also--thanks for the picture of yourself, it is wonderful.

          best wishes, Lisa I.


          • #20
            Thank you so much everyone!

            I should hear from Cleveland by Monday or Tuesday. (3-21 or 22.)
            I will post what they said.

            The only thing I am wondering is that if I have let this go on too long. I am in such bad shape now that I wonder if there is heart damage that a myectomy will not be able to help. (Such as stiffening of the ventricle.)

            My legs hurt so bad every day that there are times that I can hardly use my left leg. There are some days that I can barely walk.

            It has been so long since I have been 'normal' that I have forgotten what it feels like to be 'normal.'

            I guess I'll wait to see what CCF has to say.

            Thanks again everyone. You are 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.