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  • ICD

    [ICD]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 10-17-02 23:27

    Howdy folks. I have been symptomatic with HCM since about 1990. Recently I went to the ER because I was having so many PVC's/palpatations. That night it was up to 17 a minute. While that was quite excessive for me, I do have times when palpatations are quite noticible.

    My cardiologist is thinking I might need a ICD. I have had 3 second cousins experience sudden death. Are there any drawbacks to having a ICD? From what I have read the symptoms will not just "go away" with this device. What are the advantages?

    I appreciate your experience and wisdom.

    Leon

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

    [Re: ICD]

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

    Date: 10-18-02 00:57

    Dear Leon,

    The advantage to an ICD is that it may save your life.

    If you are having ventricular tachycardia, have a family history of sudden death, then you have 2 of the 5 risk factors for sudden death. Please read Dr. Robert Pensack's earlier post "edited version myectomy vs. septal ablation" for more detail on the factors.

    There is a 1-2% chance that having the ICD put in could kill you. However, if you have ventricullar fibrillation, the ICD has a 98% chance of saving your life when it happens.

    Please call the office at 973-983-7429 so you can get the name of an HCM specialist near you who can evaluate you for an ICD and if you need one, it can be done by someone with lots of experience --you don't want just anyone plugging them into you.

    You would still need medication to control your rhythm and rate, or if that isn't possible, they make combination pacemaker/ICDs.

    take care,

    Sarah

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

    [ICD Advantages?]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-18-02 07:27

    I had this same discussion with my father today! As I shared with him, the biggest advantage to having an implantable cardioverter defibrillators, ICD, is that they are pretty effective in preventing sudden death in patients with hypertrophic cardiomyopathy. My father is stuck on his feelings about ICD's because he heard or read somewhere thst the defibrillator discharges can often fail to reverse ventricular dysrhythmia. My father provided me with the following scenarios, "what if I need it to work and it fails?" -- my response to him was, "what if you need it and it saves your life?" Dad then suggested that he could purchase an external defibrillator to have in the house in case he needs it in the middle of the night. And my response to that was, “that's great if you need it and you are awake but what happens if you need it in the middle of the night and mom is asleep ... what good will it serve? Wouldn't you rather feel secure in knowing that it is inside of you in the event that you need it?” He'll think about it and discuss the advantages/disadvantages with his doctor in greater detail. That's good enough for me!

    So in my opinion ... advantages? ICD's are beneficial in terms of preventing sudden cardiac death and/or terminating potentially fatal ventricular arrhythmias! (FYI, I also read that ICD's are also considered to be the treatment of choice for people with dilated cardiomyopathy or arrhythmogenic right ventricular cardiomyopathy. I also read that in selected high-risk individuals, ICDs are more effective than drugs in prolonging life! These are some good advantages to me!

    I suggest visiting with an HCM specialist to see what he/she thinks is best for you! I hope others who have an ICD will post and share their experiences and thoughts! (Sorry for always writing such a long novel!)

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

    [Re: ICD Advantages?]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 10-18-02 09:43

    Leon,

    You might want to visit <www.zaplife.org> and see what they have to say about ICD's too. That is a site for people with ICD's. It includes information and a message forum, similar to this site. Although the people on that board have ICD's, they don't necessarily have HCM. Please keep that in mind. Hope this helps.

    Reenie

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

    [Re: ICD Advantages?]

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

    Date: 10-18-02 10:19

    Dear Erica,

    If someone has an episode of vfib in their sleep, they don't wake up and go "oh, gee, let me get over to that AED and shock myself." They just never wake up.

    The ICD technology gets better every year and they are incredibly reliable. I recommend he visit the medtronic and/or guidant web sites (they make ICDs) and ask them directly about their stats.

    As I am reminded all the time, fathers and mothers tend to discount info from their kids because they still think of us as toddlers and babies --it is just hard for them to understand that we sometimes know what we are talking about. So if your dad got the latest info from the source, it may bring him around.

    Besides, all of this is moot if he is not a candidate for an ICD. However, ICDs are not "pretty effective" ---they are more like 98% effective.

    good luck,

    Sarah

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 11:15

    Oh Sarah ... thank you for writing this! This is what Dad needs to hear!!!!! He has this false assumption that will have notice! He thinks it will wake him up ... he thinks it will awaken my mother ... so anyhow, THANK YOU for putting this on the site for him to read!

    Do you think we can talk his doctor into putting in an ICD next month when he goes for the ablation? He meets at least two the pre-qualifying risk factors for SCD. At least two that I am aware of!

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

    [Re: ICD Advantages?]

    Author: Julie E (---.fuse.net)

    Date: 10-18-02 12:10

    I have had my ICD for 3 1/2 years and the advantage I see is that someday it may save my life!! Yeah it may go off inappropriatly and yes you can see it sticking out a little, but if it goes off 1 time to save my life then the advantage outweighs any disadvantage.

    I also do visit zaplife.org and particiapate in the chat there. Great place to get ICD experience infomation.

    Julie

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 12:24

    Hi Julie. What do you mean by, "go off inappropriatly?" What exactly happens? How do you know? What do you experience when this occurs? What causes this to happen? Thanks! ~ Erica

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 12:32

    I have a problem with the www.zaplife.org

    They REFUSE to list the HCMA as a source of information. They list American Heart Association, Dr. Atkins (Diet) Center, Mayo Clinic/Health Oasis .. BUT he will not list the HCMA?

    I sent him an email asking him to list the HCMA and wrote:

    "Not without reciprocal agreement."

    Here comes my New York attitude ... WHATEVER!

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

    [Re: ICD Advantages?]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 10-18-02 13:29

    Inappropriate discharge is when the ICD shocks you and you didn't really need it. It can go off because it is set at a level that is inappropriate for the patient, a lead wire is fractured or otherwise messed up, the ICD reads wrong info, etc. I don't think it happens a lot, but people with ICD's need to know that it *can* happen. My husband has had his for 2 years now and so far it hasn't gone off, either appropriately or inappropriately. Thank goodness. At least we know it's there if he does need it.

    Reenie

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 13:39

    Thanks Reenie. I pray he never needs it! I hope my father will look into having it implanted if he needs it and I have a feeling that he will based on the facts. Something to discuss with his doctor next month! Have a great weekend. ~ Erica

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

    [Re: ICD Advantages?]

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

    Date: 10-18-02 13:50

    You never know when your going to need it. When I was 19 I needed mine. I went to school felt fine all day. At night I was on the T going to a concert with my girlfriend In Bosotn. Suddenly it became extremly hard to breath and I just passed out. The Dr.s said if it wasnt for my ICD I wouldnt be here today. I

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 14:02

    Bryan ... I'm glad you are here today! Sounds like an advantageous investment to have an ICD put in if you are a candidate! Thanks. ~ EBS

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

    [Re: ICD Advantages?]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 10-18-02 14:22

    Thank you all for sharing your experience and helping me get used to this idea. We still need to see what the cardiologist finally decided, but at our last meeting he was leaning fairly stongly in this direction. Sarah thats fot the number to call and find out about cardiologists in my area who are trained in care for HCM.

    Peace,

    Leon

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

    [Re: ICD Advantages?]

    Author: David (---.cableinet.co.uk)

    Date: 10-18-02 14:43

    Hi all,

    I have been reading your messages with interest as I had my ICD implanted 2 years ago at the age of 29.

    My cardiologist said that I was having none sustained arrhythmias that I was not aware of, and as a safety precaution I should have an ICD fitted. Since I had not had any blackouts or any severe life threatening symptoms I was not to keen.

    However, he explained that if I was to go into Vf while walking around town then the chances are that I would not survive. It was explained to me that for every minute that I did not receive treatment my chances of survival would drop by 50% (work out the figures that is scary). However, by having this ICD in my chest it would deliver treatment within seconds and increase my survival rates to 98% and would be completely automatic day and night, 365 days a year, and require nobody to set it up.

    Needless to say. I had it done. However, I also had some complications, not with the implant but with the testing. After implantation, the surgeon tests the device by changing your heart rhythm and letting the device put it back to normal rhythm. In my case, it took 8 attempts to do this. Due to this, he changed my medication so that my heart is more susceptible to the shock and I had it retested after the weekend. Bingo it worked first time.

    These tests are done so that if I have need of the device, both my doctors and I know that it will work. After all, if you are going to have complications then the best place is in a hospital with your surgeon next to you.

    Erica mentions her father mentioned getting an external defibrillator; these have many drawbacks such as they need someone to operate them, and the success rate is not too good even if used quickly. I have spoken to paramedics and they say that the chances are not good with external defibs due to the time taken to get to the patient.

    I addition to this, I feel that my wife and other family members do not need have this massive reasonability put on them, even though I know that they would take it without question.

    Sorry for the length of this.

    Best regards Dave.

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

    [Re: ICD Advantages?]

    Author: Erica Stolzenberg (---.biz.dsl.gtei.net)

    Date: 10-18-02 14:59

    Dave ... Wow - thank you for taking the time to share advantages & disadvantages! Once again the pros out weigh the cons! Thank you. This is message is getting printed out right now, placed on the fax machine ... and heading down the wires to my father's home fax machine! I'll let you know what he thinks! Have a wonderful weekend. ~ EBS

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

    [Re: ICD Advantages?]

    Author: janet (---.kc.rr.com)

    Date: 10-18-02 20:47

    Hi

    I want to clarify about AEDs (automatic external defibrillators) ---they do have comparable success rates as ICDs ---as long as they are within 3-5 minutes away from you ---this is why we push for AEDs to be in schools and public places.

    When you wait for a paramedic to get to you with an AED, that is when it takes 20-30 minutes to be treated and those numbers are very bad.

    As for Zaplife, we don't have a links page ---yet.

    Sarah

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

    [Re: ICD Advantages?]

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

    Date: 10-18-02 21:15

    ICD's and AED's each have important roles within different populations. Dave you make some excellent points and I thank you for your posting.

    Those of us at a high risk of SD - ICD's are the way - In the general public AED's MUST be there and as common as a fire extinguisher in my opinion.

    There are 1000's of HCM patients running around with NO knowledge they even have HCM...let alone all the othe diseases that can cause SD!

    My ICD lets me LIVE without the FEAR that a palipitation, dizzy spell, chest pain or symptom dujour will end my life.. I have an ER in my chest 24/7!

    Best to all!

    Lisa

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

    [Re: ICD Advantages?]

    Author: chuck B (---.58.33.157.Dial1.Baltimore1.Level3.net)

    Date: 10-18-02 23:45

    David, What medicine did they switch you to to make the ICD more effective?

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

    [Re: ICD Advantages?]

    Author: Kenneth (---.shsu.edu)

    Date: 10-18-02 23:54

    This is my first time to post, I recieved my ICD about a year ago, and I think that one good advantages is the peace of mind that you have and help is always close by! I was diagnosed with HCM about 2 yrs. ago. My father and sister also had HCM. My sister was undiagnosed and died at age 33 from sudden cardiac death, so my ICD is also reassuring to my family.

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

    [AED's]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-19-02 11:11

    Here is an article I read on external defibrillators that was posted yesterday, October 17, 2002, titled: "Inexperienced Can Use Defibrillators":

    http://www.intelihealth.com/IH/ihtIH...33/356783.html

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

    [Re: ICD Advantages?]

    Author: David (---.cableinet.co.uk)

    Date: 10-19-02 18:09

    Hi all,

    Please don’t get me wrong in what I have said.

    External defibs in public places save lives and are a very important. However, when I say that an internal is a better option, I was referring to Erica’s father as he has HCM and knows that he is at a higher risk. I feel that anyone who knows that they are at high risk and is offered an ICD by his/her doctor (knowing his patient is at risk) should consider it very carefully.

    As for the external being comparable with internal defibs. As so many variables exist, e.g. time until treatment, body mass how can a true comparison be made? I feel that each device has its own place. However, people with HCM that suffer sustained VF are given a far better chance of survival if they have an ICD fitted.

    In addition to this the benefit that most ICD’s will attempt to pace the host first, before the symptoms deteriorate and thus preventing the need for full defibrillation. Then only if that fails, will it cardio-overt before finally delivering a full shock if still needed.

    Nevertheless, I agree that these external devices if put in schools and as many public places as possible will save lives, and at a price of around £2000 are very cheap compared to the cost of a life.

    Best regards Dave.

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

    [Re: ICD Advantages?]

    Author: David (---.cableinet.co.uk)

    Date: 10-19-02 18:23

    Hi Chuck,

    My surgeon changed my medication to Sotalol. I don’t know why it worked but I am just glad that it did. I have looked around the web but some of the papers that go into this are a bit much for us mere humans to understand or is that just me.

    Best regards Dave

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

    [Re: ICD Advantages?]

    Author: Leon (---.lncstr01.pa.comcast.net)

    Date: 10-20-02 09:02

    Once again let me say thanks for all your answers regarding ICD's. I actually feel like I am beginning to grasp what is going on and how the thing will work. On Thursday I see the EP guy and I feel like I can ask some intelligent questions. I have also looked back over the many posts to this forum and feel like I understand HCM better now than I ever have. In fact through this forum and other web similar sites, I have gained more data in the last week than I had over the previous 5 years! I don't think I realized the seriousness of the many PVC's I am staryting to have. Whether or not the Dr. finally gives me an ICD, I will read this forum faithfully from here on out.Thanks again.

    Leon

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

    [Re: ICD Advantages?]

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

    Date: 10-21-02 09:12

    Leon - I am glad you found us and I am happy to hear your gaining control over your own health!

    Stay well

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

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