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  • Questions for Doctor?

    [Questions for Doctor?]

    Author: Tim Stewart (---.lexis-nexis.com)

    Date: 04-18-02 10:10

    Hello everyone.

    My wife was just diagnosed with HOCM. She is a 31 years old stay-at-home mother who developed symptoms shortly after becoming pregnant with our first and only child 2 years ago.

    This was a surprise diagnosis as originally the TEE was being performed to ascertain the severity of her Mitral Valve leakage but there was no suspicion of any other problems. After the TEE, I talked with the doctor briefly while my wife was recovering. At that time, he informed me of the condition and prescribed beta blockers for her (toprol 100mg) and told me to have her stop doing aerobic exercise / activities. Other than that, he did not offer any other explanation or provide any plans for treatment.

    My wife and I have found this and other websites to be very helpful but our heads are still spinning as we begin to understand this disease. I have spoke with Lisa in the HCMA office and have been given the name of a doctor at the Cleveland Clinic (we are in Dayton Ohio) but need to get a referral from our family doctor before making an appointment.

    While I have lost faith in this doctor for not discovering this condition on previous echoes, we still need to at least meet with him to see what he has to say. We have our first meeting with the cardiologist after the TEE is next week and we are still not sure what questions to ask. Some that come to mind are:

    - How experienced are you (and/or your staff) on treating this disease?

    - Why wasn't the HOCM detected on previous echoes?

    - What do you indent to do (if anything) to treat the leaking mitral valve?

    What else should we be asking?

    Thanks for any suggestions.

    Tim Stewart

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

    [Correction ...]

    Author: Tim Stewart (---.lexis-nexis.com)

    Date: 04-18-02 10:18

    My informs me that she is only on 50mg of Toprol.

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

    [Re: Correction ...]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-21-02 16:30

    Dear TIm

    I'm so sorry I've not written sooner but I wrote this long reponse and then my computer crashed and then I was on-line looking for a list of questions for you, but didn't really find anything.

    I'm a little confused about your post. I can't tell which doctor you are seeing before you see the CLeveland Clinic and who these questions are for. I got the impression that you are meeting with the reject doctor and want to ask him questions, but I think that is a waste of time unless you need him for the referral. Actually, if you do need him for the referral, I would just say that you understand that he is a good doctor but that your condition is unusual and you want to see the guys that treat this every day.

    I wish you both all the best and I recommend that you call the HCMA at 973-983-7429 to get on the mailing list and to also talk to Lisa about what questions to ask the Cleveland Clinic when you get there.

    take care,

    Sarah

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    [Re: Questions for Doctor?]

    Author: Tim & Lynn Stewart (---.dsl.dytnoh.ameritech.net)

    Date: 04-21-02 18:33

    Sorry. I should have been clearer ...

    On Wednesday of this week we are going back to the cardiologist (who ordered the echo followed by the TEE) to see what he has to say. At that time we will be asking for a referral to Dr. Harry Lever at the Cleveland Clinic for treatment. I was just curious what (if anything) we should be asking the local doctor about his findings?

    It sounds like we should just be asking for the referral. The more I read on this website (and especially after your post and after talking to Lisa), it is becoming quite clear that we should not be wasting any more time with the local doctors and should go right to the pros with this condition.

    Thanks, Tim

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

    [Re: Questions for Doctor?]

    Author: Yvette (207.74.92.---)

    Date: 04-22-02 06:54

    Hello. My husband is 29 and has HOCM, he too went to the cleveland clinic, and Dr. Lever was his doctor. He is very very good. He told us the different options my husband had and the pro's and con's of the procedures. My husband had open heart surgery on the 22nd of March, Dr. Lytle performed the myectomy. They removed 7mm of his septum wall. I cannot tell you how great this hospital is. They take care of their patients, and the family's to the patients. My prayers our with you. And the best of luck to you.

    Yvette

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

    [Re: Questions for Doctor?]

    Author: Bob (---.dyn.optonline.net)

    Date: 04-22-02 13:05

    Hi Tim and Lynn,

    As an HCM patient, I can well understand your frustrations with the Doc's. One thing my experience has taught me is to obtain copies of every test, physicians report etc. I have found these helpful when doing my own research, and it really helps to bring the records along when you see a new physician, such as you will be doing. Even though they frequently want to repeat the tests, having a baseline for comparison is most helpful, particularly the past echo's. So, just in case you haven't already done so, I suggest you get copies of your past records. Your requests will not be denied because your are legally entitled to all this information.

    Good luck to you both, and keep us posted,

    Bob

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

    [Re: Questions for Doctor?]

    Author: kay ruth (---.as0.wlby.oh.voyager.net)

    Date: 04-22-02 18:16

    Hi Tim,

    I am also going to the Cleveland clinic 5/8 to see Dr. Harry Lever he is experienced with HCM. Have a battery of tests scheduled for that day. Fortunately we live in the area. My cardiologist wanted to send me to the Mayo clinic but CCF is one of the best .I have been struggling with this for 12 years before someone finally diagnosed it correctly two years ago .Was given tagamet,tranquillizers inhalers for my lungs etc. at least now I'm on the correct meds.
    NOTE: This is a post from the previous forum message board.
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