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  • WAITING FOR RECOMMENDATIONS

    [WAITING FOR RECOMMENDATIONS]

    Author: CLAUDIA LIVINGSTON (---.proxy.aol.com)

    Date: 07-15-02 01:39

    I SAW DR. LEVER AT CLEVELAND ON JULY 1ST AND HAD AN ECHO THAT SHOWED MITRAL VALVE STICKING OCCASIONALLY. I WORE A 48 HOUR MONITOR HOME AND AM NOW EQUIPPED WITH AN EVENT MONITOR WHICH I AM TO WEAR UNTIL AUG. 1ST. I HAVE TRANSMITTED 3 TIMES SO FAR. DR. LEVER DID NOT DISCUSS WITH MY HUSBAND AND I TREATMENT OPTIONS AS HE WANTED TO SEE THE RESULTS OF THE MONITORS. DOES ANYONE KNOW IF HE IS GOOD AT GETTING BACK WITH YOU OR WILL WE HAVE TO CALL. HE IS ON VACATION UNTIL THE 22ND AND I KNOW WE WILL HAVE TO WAIT UNTIL THEN. IT IS JUST FRUSTRATING BECAUSE WE ARE MORE ANXIOUS THAN EVER NOW AND STILL DON'T KNOW MUCH. I WAS JUST DIAGNOSED IN APRIL, SO THIS IS STILL FAIRLY NEW TO US. MY 28 YEAR OLD SON ALSO WENT TO SEE DR. LEVER AND HE APPEARS TO BE DOING FAIRLY WELL ON HIS MEDICATION. GUESS WE WERE WONDERING IF ANYONE ELSE HAS HAD ANYTHING SIMILIAR AND CAN MEDICATION POSSIBLY TAKE CARE OF PROBLEM OR IS SURGERY USUALLY THE ANSWER?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: WAITING FOR RECOMMENDATIONS]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 07-15-02 09:08

    Hi Claudia,

    I too have just recently visited Dr. Lever (as well I was also just diagnosed in April 2002) and was very impressed by him. In response to whether he is good at getting back with patients I wanted to let you know that I had an excellent experience with him in this regards. He had asked that I contact him a few days following the return of my Holter monitor to the clinic to let him know it was there so that he could follow-up on it. When I called his office, he answered the phone, not a nurse or assistant. He needed to check on the results and indicated he would call me back. I was expecting this to take the biggest part of the day and that he would have an assistant call me back. To my pleasant surprise, he called me back directly about 10 minutes later. While I know this doesn't answer the question about him getting back to a patient after vacation I would still feel confident that he will follow-up. However, if you don't hear from him within a day or two of his return, I wouldn't hesitate to contact him. Dr. Lever has so many patients that his schedule is full but I have found him immensely responsive to his patients.

    Best of luck, the waiting is the worst -

    Lynn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: WAITING FOR RECOMMENDATIONS]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-15-02 09:18

    Hi Claudia and Lynn,

    April must have been HCM month, my mom was dx then too!

    She's seeing Dr Asher, so I don't have info about Dr Lever. I just wanted you to know there are others out there feeling like you. Overwhelmed, scared, anxious, and every other emotion. Waiting is the worst.

    Impressed to hear Dr Lever answered his phone and not the assistant!

    Dawn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: WAITING FOR RECOMMENDATIONS]

    Author: Board Moderator: Sarah Beckley (---.dialup.mindspring.com)

    Date: 07-15-02 13:22

    Dear Claudia

    I know how scary and hard the beginning of this process is, but it gets better as you learn more and you develop a relationship with your doctor. Everything I've read here had nothing but good things to say about the entire Cleveland Clinic team (and every other HCM specialist the HCMA recommends as well---it is the local GPs and cardiologists who speak before learning that we have a lot of trouble with).

    Anyway, no one can tell you if surgery is your only option except your doctor. HCM is a very individual disease and it is almost impossible to say what your treatment options are for just you. Your particular arrhythmias, family history, heart structure and symptoms are what dicate what will work for you. There is NO cure for HCM. Surgery to reduce the septum will relieve symptoms and increase heart function, but will not mean that you don't have HCM anymore.

    Please read the rest of the web site and the old posts to get a sense of the HCM landscape and let us know what Dr. Lever says.

    take care

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: WAITING FOR RECOMMENDATIONS]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-15-02 20:23

    Claudia,

    Take a breath... your in good hands and your going to need to let the doc's sort out the data and get back to you. I have learned many things in the years I have been doing my work for the HCMA - one key rule is NEVER expect doctors to move fast in July or August - Doctors are people too... they need vacations just like the rest of us and it seems they all take them in the summer. If something has got to be do it will get done, your care is most imortant to these doctors, so IF you mom needed treatment right away they would let you know. SO wait until Dr. Lever returns and talk to him.

    All the Best!

    Lisa
    NOTE: This is a post from the previous forum message board.

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