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Grateful For Pacer-Defribrillator

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  • Grateful For Pacer-Defribrillator

    [Grateful For Pacer-Defribrillator]

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

    Date: 03-22-02 21:05

    Hi Folks,

    After several months of testing, researching, and many medical opinions, I had an ICD with dual-chamber pacer implanted 3 days ago, and I'm just so grateful for this hi-tech age we live in which brings us these wonders.My decision to undergo the procedure was difficult because as my doctor's say, I am an unusual case. I was diagnosed in 1994 and still remain symptom free. Yet, during this period my resting obstructive gradient had risen to over 130 mm. Beta blockers had little effect. With my lack of symptoms, doctors were reluctant to try other drugs because of their known adverse side effects. When 2 short episodes of ventricular tachycardia appeared on a routine Holter Monitor that changed the situation. My doc's agreed that I should get an ICD, So why not go for the one with dual-chamber pacing for gradient reduction?. The procedure was done with an overnight stay at St. Luke's Hospital in Manhattan. The entire staff there was unbelievably pofessional and truly caring. Initial results are very encouraging, with a gradient reduction exceeding 60%, and I am comforted knowing the defribrillator is ready and waiting should it be called into action!

    I am especially grateful to Dr. Mark Sherrid, who has been my HCM conultant for the past year, and his associate Dr. Frederick Ehlert, The Electrophysiologst who performed the surgery. They worked very closely together and with me during this

    ordeal. I am grateful also to Lisa, our president, who originally referred me to Dr. Sherrid, and gave me encouragement to tackle this latest situation head-on.! It was also through her prompting that I raised the issue of the need for an EP study, which ultimately was avoided.

    I'd be happy to dialogue, either on this board or by e-mail, with anyone who has similar experiences, interests or concerns. I also recommend the Zaplife.org website which has an excellent bulletin board and other info specific to ICD's.

    Just Happy I Did It,

    Bob

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-22-02 22:05

    Dear Bob,

    Thanks so much for posting. I know there are several people who have posted recently who will benefit from your sharing.

    Take care and keep us posted on how you are doing,

    Sarah

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: shannon (---.oshw.interhop.net)

    Date: 03-23-02 14:34

    Dear Bob,

    Thank-you for posting. I also have hypertrophic cardiomyopathy and I do have symptoms such as breathlessness, palpitations, chest and leg pressure. I've tried three meds and nothing has worked. Let me ask you: when you had your tachacardia, was your beat normal or did you have an abnormal rythm? My rythm stays normal but it just goes really fast (160-170) when I mildly exert myself. My doctor mentioned the ICD at one point but he seems to have discounted it since my rythm was normal on the holter monitor. Let me also tell you that During a day my heart goes into this tachacardia probably 10 or more times on an average. If I get sick or am really tired it's worse.

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

    [Re: Grateful For Pacer-Defribrillator]

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

    Date: 03-24-02 13:33

    Shannon,

    The term "Tachycardia" means fast pulse, but it covers a broad spectrum of conditions, based primarily on where it originates in the heart (sinus node, atrium, ventricles, etc). The normal heart rhythm originates in the sinoatrial node, and is called Synus Rhythm. If this bebomes fast (over 100 beats per minute) for a proloned period it is called sinus tachycardia. Is this what you have?

    Ventrical Tachycardia is life threatening, even for very short periods. It is never considered to be a normal rhythm because it should not exist at all. My episodes were very short (non-sustained) and happened during sleep.Even had I been awake, I probably wouldn't have been aware of it because of the short duration.

    Shannon, I did extensive research, which delayed the final decision for 2 months, in deciding if the ICD (defibrillator) was right for me. But I have no history of sudden death in my family, as you do. I must say that had I been in your situation, I would not have delayed for one day in pressing to have the ICD implanted. One thing I have learned over the years is the importance of beeing evaluated by a doctor who is a recognized HCM specialist.With this not-so-common, complicated disease, the average internest or cardiologist just doesn't see enough HCM cases to become proficient, in my opinion. As Sarah suggested, please run your situation by Lisa Salberg, president of HCMA (she also has an ICD), who knows who the experts are. I'm certain you will find her very helpful. You're also welcome to contact me if I can be of further help.

    Good Luck and keep us informed

    Bob

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: shannon (---.oshw.interhop.net)

    Date: 03-25-02 10:20

    Dear Bob,

    What I have they have called sinus tachacardia, because they've told me that my sinus rythm is normal, just too fast. My ekg results have shown that there isn't enough blood flow to a certain part of the heart but they didn't specify, they just said not to be too concerned. I guess my doctor seems to feel that if my rythm is normal then I'm not at risk of sudden death. I'm just worried that my symptoms are going to get worse. And will an ICD actuall relieve me of my symptoms or would it just prevent death? I'm just worried that if my symptoms get worse, how can I be a good mother to my three little ones? There's already so much that I can't do with them.

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: sarah beckley (---.dialup.mindspring.com)

    Date: 03-25-02 10:46

    Dear Shannon

    I see that you have two primary issues: relieving current symptoms and preventing sudden death. Your family history indicates that you may be at risk for sudden death, which an ICD would prevent as much as it is humanly possible to do so.

    They make ICDs with pacemakers, and this would control the tachycardia, which would reduce your symptoms. There are also other medications (I know you have taken three, but that is really a drop in the bucket) to help with this too.

    Have you called the HCMA office yet? Do you have an appointment with the IHSS clinic yet? You really need to be evaluated right away.

    Please let me know how you are doing.

    Sarah

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: Doug (Patek) (---.tnt13.sfo8.da.uu.net)

    Date: 03-29-02 00:40

    Congrats Bob. It is good to hear that you got one. I am very happy with mine. 26 days ago I was getting my ICD installed and in three days I'm off to Maui to start my new job. Thanks for your encouragement before my install

    Doug

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

    [Re: Grateful For Pacer-Defribrillator]

    Author: Lisa (---.parnj1.netplay.net)

    Date: 04-02-02 20:50

    Bob,

    glad to hear the ICD is a done deal... while they are not the right thing for all I think you had great care and I am glad you had it done. I am very happy with my ICD and I too am grateful for the ability to have one!

    Best to all,

    Lisa

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

    [Re:Pacer-Defib.: Good News Just Got Better]

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

    Date: 04-03-02 23:55

    Hi All,

    I found out from the Doc's that I was mistaken about the 60% gradient reduction, it actually completely diasppeared! Needless to say I am elated over this.They tell me this degree of success is unusual using dual-chamber pacing. I just hope and pray that it stays that way.

    Bob

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

    [Re:Pacer-Defib.: Good News Just Got Better]

    Author: Halina (---.philamuseum.org)

    Date: 04-09-02 17:06

    Bob,

    I am 35 and was diagnosed fiver years ago when I recieved a kidney transplant. My gradient has be getting worse. I was just told about going to anelectrophisiologist yesterday. I'm not concerned about the defibulator itself, I am more afraid of the EP study. How did you get to not have one. Did you have one before? Do you know what they are like. I am really frightened of it. My doctor tried to keep it positive when he described it but it sounded horrible.Thank you for any information you can give me.

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

    [Re:Pacer-Defib.: Good News Just Got Better]

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

    Date: 04-09-02 21:04

    HALINA,

    I replied to your later message before seeing this. I never have had an EPS. From what I have heard, and seen on this site I don't think it is that bad. The real issue is it is an invasive procedure and therefore has some risk. It is very controversial, especially by the HCM experts. I guess the real reason I avoided it was because I periodically see an HCM expert in addition to my local physician/cardiologist who wanted me to have the test. I brought the consultant a copy of an excellent article, authored by several well known HCM experts( copy appears on http://gilead.org.il/hcm ). This article addresses Electrophysiology testing (and many other facets of HCM Management), and is not supportive of it for HCM SCD risk screening. My consultant agreed with the article's position, and subsequently convinced the Electrophysiologist that I did not need to have the EPS. You might try showing that article and Lisa's posting to your Doc. Don't be bashful, after all it's your body. And by all means get a second or even third opinion. My Doc's were totally supportive of my doing so, as should any good doctor be. As far as the ICD goes, I am very glad I did it - it is reassuring. Let me know how you make out.

    Good Luck,

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

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