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    [new to forum]

    Author: Sue Harry (---.58.239.174.Dial1.Tampa1.Level3.net)

    Date: 07-16-02 21:26

    Hello!

    I was diagnosed 10 years ago with "IHSS" when I was 45. I have no history in my family and have been maintained on Atenolol 25mg twice a day. 18 months ago I had a cardiac cath because of some problems, but did not have any change in treatment. Last week I was in the hospital for the first time with uncontrolled atrial ffibrillation. I now am also taking Tambocor 100mg twice a day. My Dr. is a well respected cardiologist in our area. Both he and another Dr. in his group that saw me in the hospital discussed septal ablation and myomectomy.They seemed to feel if I do something now before I have more problems I will have better quality of life in my later years. They both advised I will need to go out of state for treatment. For several reasons I would like to be seen at the Cleveland Clinic.

    Since going over many, many pages on the message board I have learned a lot.

    I guess my next step is to get the okay from my insurance (PPO) for treatment outside our area. My Dr. is looking into a Dr. to refer me to. I did mention to him a couple of names I have seen repeatedly on this forum, Dr.Lever and Dr.Asher. I m sure there are others so would appreciate any advice or guidance anyone would like to share. I am anxious about what lies ahead and realize because my situation is not as severe as others I may need to wait awhile.

    Thankyou for your help.

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

    [Re: new to forum]

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

    Date: 07-16-02 21:41

    Sue,

    Welcome to the HCMA, I am glad you found us and hope that we can help make your journey a little easier. It sounds like your a quick study and you are on the right path. If Cleveland is the place you want to be Dr's Lever and Asher could both help you, you will most likely get a faster appointment at this time with Dr. Asher, I happen to know that Dr. Lever is rather backed up right now.

    Check with your insurance co and make sure your covered and get your referrals in order then make your appointment.

    If we can be of any help please call the office.

    Best wishes,

    Lisa Salberg

    President

    HCMA

    973-983-7429

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

    [Re: new to forum]

    Author: Sarah B-Board Moderator (---.56.128.44.Dial1.Chicago1.Level3.net)

    Date: 07-16-02 21:51

    Dear Sue

    I'm glad to see you got here!!!

    You can also call the CLeveland CLinic and talk to them about the insurance --I've heard that they are very helpful.

    let us know how it goes,

    Sarah

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

    [Re: new to forum]

    Author: susan (---.174-107.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-16-02 22:29

    hi sue,

    if your from the southern part of the states, you might want to contact dr. william spencer at the medical university of south carolina, you can contact him through his nurse donna killip, her email addy is, [email protected]. best of luck to you.

    susan

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

    [Re: new to forum]

    Author: Chris Brown (209.77.217.---)

    Date: 07-17-02 14:27

    Hello,

    I just found your website yesterday. And all I can say is WOW! After reading all the responses on the message board I had a hard time sleeping last night thinking about everything I read. I always felt alone, that I was the only person I knew with this condition. I learned a lot reading all the different stories.

    Here is my story.

    I was diagnosed with IHSS 8 years ago when I was 34 years old. I was put on medication and got my first pacemaker when I was 34. Since then I have developed constant Atrial Fib. And when I was 36 yrs old I developed subacute bacterial Endocarditis after going to the dentist, I took my premeds but the germ I received was resistent to amoxicillan. I received over 2 months of IV antibiotics-Rocephalin and Gentomyacin(excuse the spelling). And I have Scarring on heart from the Endocarditis.

    During the summer of 1999 when I was 39 years old I had 6 different episodes in the hospital when my heart was beating over 150bpm. The representative for Guidant convinced my Cardiologist to put a new improved pacemaker in. The dual chamber model pacer has controlled my heart from going into fast beats. and I have not been in the hospital since.Yea!

    My current daily doses of Medications:

    Metroprolo 400mg total

    Lanoxin .375

    Coumadin 8 mg

    Being a 42 year old male ,Height 6'1", weight 235. I exercise lightly 4-5 days a week on my exercise bike. I want to make sure I am being proactive not reactive to my health. I know I need to lose weight. What diets do you suggest? I saw the Atkins Diet on T.V. Last night.

    What are the long term effects of the medicines I am taking?

    I have 2 children . How often and when should they be tested? what type of test?

    I guess I have gone on long enough. I am glad I found you.

    Sincerely,

    Chris Brown

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

    [Re: new to forum]

    Author: Sue Harry (---.215.216.204.Dial1.Tampa1.Level3.net)

    Date: 07-18-02 11:25

    Hi Chris,

    Being new to this forum I understand your feelings of gratitude at having found the site. My history is very different from yours and as you may have discovered we all have had our own experiences with care and treatment.

    I can speak to the weight issue. I am attempting to loose a significant amount. After years of struggle with this I have finally found that eat a little less, move a little more is the best way. I have been on different kinds of diets, gained and lost a lot of weight, and now am having the best results with just moderation. This is a slow way to loose and I do get impatient. Yet for the first time I am keeping the weight off and feel good about my sucess. I also don't feel deprived and can enjoy the sweet treat once in awhile without guilt. A couple of years ago my son had to loose about 30 pounds related to his work. He did the Atkins diet and had good results, but he has no health issues. Years ago his echo was negative when tested after my diagnosis was made. I think I would be sure your Dr. supports the idea of you doing this diet before you start. He might ok it on a very limited basis.

    It sounds like with the amount you exercise some adjustments in your diet might bring you sucess. In my job I am often exposed to a variety of food as I go about my tasks. I decided that was one thing I would not partake in and I excuse myself when invited to have something to eat. This one little thing has helped make a big difference. By cutting our all the extra "grazing" and snacks I enjoy my food when I finally set down to eat. Good luck to you .

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

    [Re: new to forum]

    Author: Chris Brown (209.77.217.---)

    Date: 07-18-02 11:37

    Hi Sue,

    Thank you for your advice. I do agree that moderation is the best. This society is so geared to having everything"supersized". I can do without the large fries and large coke.!!

    Thanks again,

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

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