If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • Managing HCM

    [Managing HCM]

    Author: Kimberly (64.240.52.---)

    Date: 08-09-02 17:54

    Hi All:

    I'm 32 years old, recently diagnosed with HCM. I see a cardiologist at the Cleveland Clinic. I feel I am getting good care for my HCM symptoms. However, I am looking for advice or support on managing HCM, from nutrition, exercise, meds, to my emotions- some kind of a rehab program. I cannot find a cardiac rehab program that will accept me (usually for heart attacks or heart transplants). Can anyone point me in the right direction?

    Thanks for your help.

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    [Re: Managing HCM]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-10-02 04:01

    Dear Kimberly

    The Cleveland Clinic is one of the best places in the world for HCM treatment. Have you asked them these questions? I can't imagine that they don't have answers for you (I haven't been there, but the Mayo gave me a whole book on cardiac care when I was there.)

    However, in answer to your questions...It is my understanding that "cardiac rehab" as it exists today is not appropriate for HCM patients, specifically the exercise aspect of it.

    If you go back to some of the early posts in this message board, you will find a treasure trove of people's experiences and tips on diet and so on.

    You and your doctor need to make the decisions about what exercise is appropriate and beneficial to you ---HCM is a very personal disease in that everyone's experience is different and it is impossible to make blanket statements about rules for all HCM patients since there are people with HCM who live active lives and those who are on total disability --it just depends.

    I'm not sure what you are asking when you mention "meds" in your list--what medications to take, avoid, how, when? Let me know more specifically here and I can be of more help. It would also help to know what you are taking now, too.

    Please e-mail the HCMA office your snail mail address so you can get on the mailing list for the newsletter (which has lots of good info in it).

    I'm 33 and have been living with HCM since I was 13, so please e-mail me at [email protected] and I can share my personal system with you.

    take care

    Sarah

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    [Re: Managing HCM]

    Author: Kimberly (64.240.52.---)

    Date: 08-10-02 14:27

    Sarah:

    I'm taking Atenolol, Prinivil and Furosemide. I'm looking for an overall management program for HCM - I feel that my life has been turned completely upside down and at times am so confused and frustrated! I'm sure everyone can relate. The Clinic is sending me a book on cardiac care - will be anxious to receive it.

    Thanks for your input.

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    [Re: Managing HCM]

    Author: Amelia Haynes (---.proxy.aol.com)

    Date: 08-11-02 17:59

    Oh, Sarah, maybe I have just come upon some important advice. I have been taking cardiac rehab for the past 2 months - phase 3 since I have to pay for it myself. Insurance programs do not pay since HCM and mitral valve replacement are not specifically listed and not the same as coronary/artery insufficienties.. My mitral valve surgery was done in Cleveland in October 2001 and they and my local cardiologist wanted me to have the rehab so I enrolled in Phase 3 of the Cardiac Rehab Program; first time in Dec and Jan, then second enrollment in June and July. I had planned to continue at least through August. But something has triggered harder to manage CHFand SOB the past two months and I am wondering if it could be that the type of exercise is in opposition to HCM. The equipment I use is a stationery bicycle, an arm crank and a NS which works both your arms and legs. After Tuesday and Thursday workouts I am completely exhausted and have skipped the past 2 Fridays. Maybe I should just resort to walking in the mall? Your input is appreciated.

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    [Re: Managing HCM]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-11-02 20:12

    Dear Amelia

    Well, the Cleveland Clinic usually knows what they are doing, but I think you should talk to your doctors there and let them know what the workouts are doing to you.

    I really can't give you medical advice, but the general rule is if it makes you feel worse, don't do it!

    Let me know what your doctor says and take care --never push yourself too hard,

    Sarah

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    [Re: Managing HCM]

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

    Date: 08-14-02 10:43

    Cardiac rehad is not always recommended for those with HCM. YOu need to work with a specialist to help you create an activity plan that is helpful to your overall well being.

    Balanced diet, walking, 2-3lb weights for toning (do not lift over your head) should be fine for almost all with HCM, some can do more but all should be able to do these.

    I know many want a hard and fast rule about excersise and HCM...but the general rule here is no competitive sports, no arobics, no weight lifting and that is basicly it.

    Sports that are good...Golf and a few others but everyone agrees on golf! (of course they would they are doctors

    Lisa

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    [Re: Managing HCM]

    Author: Giovanni Battaglia (---.dialup.tiscali.it)

    Date: 08-17-02 16:46

    What do you mean exactly by competitive sports ?

    Bye

    Giovanni

    Rome (Italy)

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

    [Re: Managing HCM]

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

    Date: 08-17-02 21:49

    You are in Italy and therefore preparticipation physicals require a cardiac screening - unlike the USA. Those with HCM are banned from all sport including soccer, baseball, football and other competitive sports. Golf is OK but not much more.

    While in the USA and in Italy you cannot play these sports with a diagnosis of HCM, in Italy the screening process is so much better than the USA and is able to find many more people with this and other cardiac problems. This screening process is a strong factor as to why so few Italian children die on the playing field. We could learn a great deal from our Italian friends!

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

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