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  • defribullator/medication

    [defribullator/medication]

    Author: Anthony deSpirito (---.24.153.230.Dial1.Weehawken1.Level3.net)

    Date: 04-07-02 11:54

    I am a fouty one years old and was just diagnosed with HCMA about six months ago. My father and his brother both died of heart attacks before age 43 about 35 years ago before they new much about this disease. My mother who died at age 72 from a massive stroke about three years ago was diagnosed with the disease.I have a 3 year old son that was tested and shows no sign of the disease yet we will continue to test him and hope it stays that way, but for now we have dcided not to limmit his fisical activity. About a week ago I wore a halter moniter and was told that my heart beats were irrugular for as long somtimes as ten beats the doctor told me to double my dose of toprol to 100 mlgs. per day which seems to have lessened my simtomes a bit. I was also told I am at high risk of sudden death and it was recomended to me that I implant a Defribullator with pacemaker back-up and am trying to make a decission now it looks like i'm going to get it. I would like to here from some people that have had implants and how they are doing with them, also has anyone been on toprol for any length of time and how you tolerate it.My cardiologist seems to now a fair amount about hcma but is not a specalist his name is Dr fisch from Morristown Crdioligy group in Morristown N.J he reffered me to DR Coyne from morristown Hospital for the procedure Does anyone Know anything about these Doctors or know of any specialist in the area ,sorry to be so long winded. and I am very happy to have found this web sight by the way it was given to me by DR.Coyne.Thanks for any help you can give.Tony///

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    [Re: defribullator/medication]

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

    Date: 04-07-02 12:29

    Dear Tony,

    I'm very sorry that you lost your father and uncle at so young an age. And I'm glad you found us.

    The HCMA HQ is in your neck of the woods, so please call and make an appointment to talk to Lisa, the president, at 973-983-7429. She can give you the details on who in your area is an HCMA expert.

    Lisa also has and ICD, too. ICD -implantable cardioverter-defibrillator.

    Please review the posts on this board as there are several older threads here from people who have new ICDs and you should read their posts.

    I've taken Toprol XL myself. It is a fine betablocker, I never had any problems with it except my dreams were a little weirder than the ones I had on Corgard (another beta-blocker).

    best wishes for you and your daughter,

    Sarah

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

    [Re: defribullator/medication]

    Author: lisa (---.proxy.aol.com)

    Date: 04-07-02 15:13

    Hello,

    Well I have 1st hand information all the way around for you!

    1. I am the President of the HCMA

    2. I have defib/pacer

    3. Arthur Fisch is my local cardiologist

    4. Robert Coyne implanted my last ICD

    5. I use the Defib Clinic at Morristown

    6. I have a family history and I to am at high rish for SD, diagnosed at 12 years old

    7. I take beta blockers....

    8. I have a daughter and it is unclear at this time if she is affected...

    other then that we have nothing in common...ha ha

    Call me we can talk or better yet get together somewhere in Morris county...

    CALL 973-983-7429.

    Best Wishes,

    Lisa Salberg

    President, HCMA

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

    [Re: defribullator/medication]

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

    Date: 04-07-02 17:27

    Hi Tony,

    I well understand your anxiety at this point in time. I have faced similar problems. My posting of 3-24-02 entitled "Grateful For Pacer-Defibrillator" gives an overview of my saga leading to the ICD implant. Another post on this subject is by Patek on 2-15-02 entitled "HCD & ICD Implant" Like you, I also see a local cardiologist who is not an expert in HCM. This is why I sought to also consult an expert. Lisa recommended Dr. Mark Sherrid at St. Luke's Hospital in Manhattan. I now cosult him periodically and highly recommend him. I have been on Toprol for several years, without major side effects. When I increased from 50 mg to 100mg, I initially had problems with lightheadedness and dizzziness. I tried taking the supplement Coenzyme Q10, and the mentioned side effects did go away.

    I urge you to take Lisa up on her offer to speak with you, I'm sure you will find her very helpful. You're also welcome to contact me here or by e-mail if I can be of further help.

    Good Luck,

    Bob

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

    [Re: defribullator/medication]

    Author: Anthony deSpirito (---.157.80.233.Dial1.Weehawken1.Level3.net)

    Date: 04-07-02 23:39

    I'm not sure if I am sending this message correctly for this is my first time, but I am the wife of [email protected] and do want to thank you all who have responded to him. Today my husband's mood has changed for the better after reading responses and speaking with Lisa. I have learned that your life can change in an instant and have learned alot in an instant. I believe this web will help us both. I can only imagine on what my husband is truly feeling. I would also like to know if there is a specific web I can go to in regards to spouses or relatives that are also dealing with this with them.

    I know there is so much more that I am not aware of yet and find myself very scared and confused. I know I need to be strong for my husband but also feel so helpless not knowing what to do or expect. I have a wonderful husband and a beautiful son and I can't imagine my life any other way.

    P.S. I'll make sure my husband brushes up on his spelling.

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

    [Re: defribullator/medication]

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

    Date: 04-08-02 11:42

    Hi,

    You are very welcome. The HCMA is for families, too. I recommend that you buy Lisa's book on HCM ($24.95) as it has a lot of great information in it for the patient and their family.

    Also, if you "start a new thread" (there is a link to do this on the main message board page) then you could post a request to other spouses, asking them for suggestions.

    HCMA's annual meeting is in Morristown, NJ on May 31st and June 1st and you can meet HCM families and learn more about HCM, too. And it is only $25 for the whole weekend.

    Best wishes to you both,

    Sarah

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

    [Re: defribullator/medication]

    Author: Frank Myers (---.proxy.aol.com)

    Date: 04-11-02 15:44

    I'm amazed with the number of people who have these conditions, as I. I'd been diagnosed 36 years ago and have had almost everything/symptom you can think of over the years, an I have an implanted defibrillator/7 years. If anyone is interested in asking me personal questions directly they may e-mail me direct. Sometimes it is a little difficult to read all of the messages on the board. Regarding this gentleman Anthony deSpirito, although I'm age 70, I detect some similarities in our conditions - and I'm sure we, at times, with this condition, all have similar symptoms and concerns. One final note, I am a member of a health club and exercise faithfully, step aerobics 6-7 days a week. The doctor must approve, but it does wonders. done within moderation and according to one's ability. You'll find that there are many individuals at these clubs who face the same hurdles in life, of all kinds, and the support they give to each other helps immensely. It even HEALS. Specifically from a psychological point - and that is very important. If we can get past our minds, we'll have half the battle won. Thank you.

    Frank Myers

    [email protected]
    NOTE: This is a post from the previous forum message board.

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