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  • I need an ICD!

    [I need an ICD!]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 06-25-02 08:45

    Dear Friends,

    Eleven years ago, on March 18, my beautiful 18-year-old son collapsed and died, due to undiagnosed HCM. We were devastated. We were advised that nothing could have been done for him, had we known. My other two sons were screened, and results were negative for HCM. I had an echo about two years before Vincent died, so I thought I was safe, plus no one told me that I could be a carrier or could actually develop symptoms. Last August, at age 58, I was diagnosed with obstuctive HCM!

    Now I know that there is much to be done for an HCM patient. When I was first diagnosed, I was put on Toprol XL, 50 mg. Upon joining the HCMA, I was advised to see a specialist at least once to confirm my cardiologist's diagnosis and treatment. I'm glad I followed that advice. I learned that I have three risk factors for "sudden death," one of them being that my son lost his life to HCM. I learned that an ICD could possibly save my life. However, I'm not sure about the other two factors. Is ventricular tachycardia a risk factor? Although my husband and I were both present at the consultation, we both came away with different facts. Some of what we heard was clouded over by the fact that my condition has progressed and by the mention of the ICD. We have another appointment for next Tue. to further discuss this. We'll bring our questions and doubts along.

    Some of those questions and doubts: Do I really need it? Does the doctor understand that my symptoms have improved since medication? How risky is the surgery? How long is the recovery period? I am worried that my appearance will change drastically because of it. Is it visible through clothing? Does it get in the way? Is there a choice of location? Will I be able to exercise with it? After all this deliberation, I will get it because I want to live, and it's inconveniences won't really matter at all.

    I feel sad and disappointed that all that is being done for me couldn't be done for my son. I won't dwell on this for too long because my head tells me that I must live for today and let the past go. I want to go on living and will do everything I can to help myself. My son will always live in my heart; my time with him was truely a blessing.

    I am thankful for the HCMA. My initial talk with Lisa gave me the courage to be more open about my condition and to pursue more information about it. Reading the message board is also supportive to me. It makes me more aware that so many of you suffer from this disease and that every one of you has a story. I pray for you all every day, that you will have continued strength, both emotionally and physically, to fight this disease.

    Always your friend,

    Mary

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

    [Re: I need an ICD!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 10:51

    Mary -

    Is ventricular tachycardia a risk factor? Yes it is

    Do I really need it? it sounds like you have at least 2 risk factors so yeh, it sounds like it.

    Does the doctor understand that my symptoms have improved since medication? Sudden death and symptoms are really 2 different things. Drugs will not protect you only a device can provide that level of protection.

    How risky is the surgery? Everything has risks, speak to your doctor about all the risks and benefits.

    How long is the recovery period? 1-2 weeks no driving - 6 weeks no heavy lifting.

    I am worried that my appearance will change drastically because of it. Is it visible through clothing? Mine only shows slightly in a bathingsuit, other than that noone has a clue it is there...including me sometimes!

    Does it get in the way? NO, mine has not.

    Is there a choice of location? if yyou are refering to implant they normally prefer upper left chest - some are in the right.

    Any other ?'s let me know..

    I have said it many times... I love my ICD and trust it more than my our heart.

    Lisa Salberg

    HCMA

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

    [Re: I need an ICD!]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 06-25-02 11:27

    Lisa,

    Thanks for your reply. I'm starting to hope that my doctor can do this asap.

    Is there such a thing as a combination pacemaker and ICD? My husband says he thought that was what the doctor referred to, but I thought he only said defibrillator. Well, that will certainly be cleared up next week. Little by little, I'm settling into this. You have such a wonderful attitude toward yours, you're a great role model!

    Mary

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

    [Re: I need an ICD!]

    Author: Lisa Salberg (208.47.172.---)

    Date: 06-25-02 11:41

    Mary - Yes, there are Pacer/ICD combo units. It is far more common to see these used in HCM then stand alone ICD's.

    Thanks for the kind words, I guess you learn to put things into perspective...a scar and a box or the possibility of death....I'll take the scar and box THANK YOU!

    Take your time to get educated, it makes all the difference in your attitude about the process.

    I wish you great success with your device!

    Lisa

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

    [Re: I need an ICD!]

    Author: Bryan Lombardo (---.bos.east.verizon.net)

    Date: 06-27-02 00:45

    Dear Mary,

    Im a 25 year old male who wsa diagonosed with HCM at 2 weeks old. My family has a history of this disease also. One way we really found out was my uncle died while in gym class at the age of 17. The sad thing is like your story he wasnt diagnosed with any heart disease either. They just thought he fainted. But im not writing to you because of that, im writing to you in regards to your story about getting an ICD. I had my ICD implanted when i was 16. And the funny thing is I had all the same questions as you:

    I really need it? Does the doctor understand that my symptoms have improved since medication? How risky is the surgery? How long is the recovery period? I am worried that my appearance will change drastically because of it. Is it visible through clothing? Does it get in the way? Is there a choice of location? Will I be able to exercise with it?

    The I felt as if I didnt. After long talks with my mom she said it was my choice and we would see how things went. We went to the doctors and at the time I believe standard practice was you had to have an electrophysciology test before you could have a ICD implanted. I swore up and down that I wasnt gonna get this ICD i didnt care what the doctors said. But while getting the test done I need to be shocked back. When i woke up the first thing I said to my mom with tears in my eyes was " mom i think i need it" and i went on with the surgery.

    Luckily I did just 5 days after my 19th birthday I wsa on the train going to a concert when i started feeling as if i couldnt breath. I told my girlfriend who at the time didnt kow i had a ICD that i felt short of breath and like i was gonna pass out... i did and if it wasnt for my icd my Dr said I wouldnt be here today. After that my thought were.. I really dont care if this thing sticks out at least im living. Dont worry about a thing you will be fine and I hope evrything goes well for you!!!

    Bryan Lombardo

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

    [Re: I need an ICD!]

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

    Date: 06-27-02 07:39

    Bryan,

    Thank you so much for sharing your amazing story! I am so happy that you were able to receive your ICD "in Time" and that you have "used it well". We never know when it may be needed and sometimes we all feel ..' Do I really need this thing'...but as you so nicely laid out for us... you never know when and all the inconveniences we live with to have an ICD ARE WORTH IT!

    My best to all!

    Lisa Salberg

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

    [Re: I need an ICD!]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 06-27-02 07:43

    Bryan,

    Thank you for your encouraging words. I am going to get the ICD. Arrangements will be made when I see my specialist on Tue. When you passed out on the train and the ICD did its job, were you able to continue on with your plans? I can imagine how thankful you are that you had the implant. By the way, your last name is the same as my mother's maiden name! I'm sure there's no relation, but just thought I'd mention it.

    I will keep your words, and others who have responded to my doubts and questions, foremost in my mind and heart to help me through the next few months.

    Mary

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

    [Re: I need an ICD!]

    Author: Mary Catania (---.proxy.aol.com)

    Date: 06-27-02 07:45

    Lisa,

    Thank you for your encouragement and good wishes!

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

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