Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi there, you've received a lot of posts in the last day, it's likely going to take you some time to absorb all of the information. One thing that I don't think that you have been told yet is that the ICD will be programmed specifically for you by the EP. For instance, if the 'high' setting is set at 180 then the ICD will start to work if your heart beat goes beyond that. The ICD will be set to try x number of times to quietly (in other words you will not feel it) try to get your heart beat back to its normal level, but if it cannot do that it is then it will zap so that you feel it. The ICD has the capability to increase the zap (in electricity language called joules) as needed. so one person might only get one zap and that's enough to fix the problem (the doctors by the way call it " therapy " , we call them 'zaps'). another person might get zapped numerous times. all this information is stored in the ICD's marvellous tiny computer in your chest and the doctor can draw all that information out(that is the interrogation). There will also be a setting at the low level (mine is 60 if I remember correctly) so if the heart beat tries to go lower say on its way 'down' when it has been zapped for being out of control high, then the pacemaker part of the ICD will cut in and work to get a proper rhythm going. I don't know if I have explained this clearly enough, perhaps someone else can? on our zapper site is a section called " zap facs " which explains meanings of a lot of the " language " we use, one example, I am still a joey, meaning that I have never been zapped yet, (have had my ICD since February of 2005). I had a stroke in 2003 which did not get along with my heart. haha When the EP explained the ICD to me, and he told me that without appropriate medicine and an ICD, I would likely leave this earth within three years. didn't take me very long to say please please operate. I have a son , and wonderful daughterinlaw and two grandchildren in their teens and I intend to be around to watch them get married and have children of their own. I have had absolutely no problem with my Linus as I affectionately call my implanted 'comforter', if anything I sometimes wonder if I will have another stroke, I was paralyzed when I first had the stroke and that was far scarier to me than any future zap I might get! Hope this helps you a bit in understanding a bit more of what an ICD does. sincerely, Lynda. > > Hi Joe, > > I hear you. thanks for expressing yourself about all this. Could you explain > a couple of things? What's a VT? And what do you mean when you say that the > ICD dealt with some events but didn't shock you, and they adjusted its > programming so that it would shock you more easily? Is that what you meant? > > As I've told others, I'm not going to hesitate forever. I was only recently > recommended this by the cardiologist and his colleague the EP. Only in the > past couple of months. It took a while to digest this, and then to try to > look for people to help me understand more so that I wasn't just like a > child about it. The modern value of being an informed patient rather than > simply trusting every doctor without even knowing what questions to ask. > That's all that's happening with me. I'm not trying to ignore the idea. > Honest. > > > Again, what's a VT? And what did you mean by saying the unit did something > but it wasn't a shock, and the rest that I asked above? Sorry, not educated > enough yet to know how to ask these things properly. > > Introducing myself > > Dear ZAP list friends, > > Hi. My name is , and I just discovered this mailing list in the course > of a search for online forums where people discuss the implanted > cardioverterdefibrillator (ICD). > > I'm 64, and after a visit to the emergency room of a local hospital and a > days-long stay in Intensive Care, I was diagnosed with dilated > cardiomyopathy. as most of you probably know, this means that the upper left > ventricle of my heart is enlarged and weakened, preventing it from pumping > fresh blood into my body as efficiently as the normal rate. For those who > are interested in the pertinent details, a series of echocardiograms have > shown my ejection fraction to be lower than 35 per cent, even at best. > > I'm maintaining myself in a non-emergency state by taking several drugs that > > But my cardiologist believes that this condition puts me in statistical > danger of suffering cardiac arrhythmia and sudden, > unpreventable death. So he, as well as an electrocardiologist I consulted > for further explanation, recommend that I have a cardioverterdefibrillator > implanted to save my life if and when my heart does go into such a state. > > I know the helpfulness of these devices is generally agreed upon. But as > I've never before undergone any kind of surgery, and because I don't know > much about the potential problems an ICD might cause, starting with mistaken > firing, I'd like to hear > something from other heart patients experienced with it. For instance, in > the little online research I've managed to do, I've gotten the idea that the > ICD might go off more often than I'd imagine, each time making me feel as if > I'd been kicked in the chest by a horse. It just sounds like an > anxiety-filled and depressing way to > live, but of course so is putting up with the idea that I might drop dead > any time without warning from a heart arrhythmia, without even a chance to > clutch at my chest and call 911, as in a heart attack scenario. > > I'll welcome any advice or just discussion. I'll rely on this mailing list > for messages, because I'm legally blind and the screen reader (text to > speech) program that allows me to operate my computer very successfully in > many regards, including Web surfing in general, makes it confusing to find > messages that are on Web sites and in forums. It would be difficult to > describe exactly the problems, but suffice it to say that I'm hoping I can > rely on using the mailing list only. Back messages, archives, etc. aren't > easy to access . if you want to refer me to a specific archived message, > please include the > URL of that message in the post, so I can click on it and be taken directly > to that message. thanks very much for the extra help. > > I know I have a lot to learn, and I feel as if I ought to make a decision to > schedule an implant as soon as I feel a little better informed about what to > expect. > > I have been reading online and in a couple of messages I've seen from this > list so far about the drug amiodarone, which apparently suppresses > arrhythmia a little bit in order to keep the ICD from kicking in too easily > if it's programmed carefully. > > I did read Guy's post just now, and there are a few things I'll have to ask > for explanation about when I reply to it later today. But one thing my > recent reading online at various medical sites permits me to comment on is > that this drug represents a fairly dramatic exception to the FDA requiring > strict studies and testing prior to certification. It was in wide use in > Europe more than 30 years ago, as I think Guy says, and U.S. doctors were > importing it privately to use on heart patients. The European drug company > threatened to stop selling it to U.S. doctors unless the FDA granted their > approval, which they did in 1985 or so, if I remember correctly. So it's a > bit of an outlaw drug, though widely used. > > Also, it's the drug that was put up against the ICD in that study that > pronounced ICD to be helpful by a meaningful percentage in preventing death, > compared to the drug used alone. And a study published a year after that > says that amiodarone used *with* an ICD helps to prevent excessive shocks. > > I'm enjoying learning none of this makes me feel very enthusiastic about > consenting to get an ICD, even at the sophisticated hospital I'd go to here > in Los Angeles (Cedars-Sinai). it seems as if I have a choice now that my > heart problem has been diagnosed. Either expect to suddenly drop dead at any > moment, nothing I can do to forestall it as one might a heart attack, or get > the ICD and keep getting shocked and fainting and falling down and, I don't > know, waking up in an ER if it happens when I'm away from home? yes, I'm > pretty freaked out about all this, I confess. I hope a few days on this list > may help me get myself together before I make the commitment. My > electrocardiologist has told me to call him with questions, which I will, > but I want to be as informed as possible in order not to be rushed into this > after asking the wrong questions and/or being rushed on the phone so I can't > think clearly. > > Thanks very much, > > > > ------------------------------------ > > Be sure to visit and use other ZapLife.org services: > > The ZapperBBS at > http://zaplife.org/phpBB2/viewforum.php?f=1 > 1 - Email list forum at > / > 2 - Email delivery of the Zapper Newsletter at > 2/ > 3 - Email list forum for those involved in ICD litigation at > 3/ > ZapChat - Real time online support group (Thursdays 8PM EST) at > http://www.zaplife.org/chat.html > ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at > http://www.zaplife.org/zap4.htm > The ZAPPER Home page at > http://www.zaplife.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , I'm sorry for all the terms. VT is Ventricular Tachycardia. A condition where the heart beats so fast that no blood actually moves through the body. In my case they didn't discover the VT until I was in cardiac rehab after the pacemaker. Short periods of VT are no problem. We all know the results of very long periods of VT. VT doesn't get you because your heart stopped but your heart becomes a runaway freight train. The ICD is a very complicated piece of electronic gear. I refer to it as my chest top computer. It is constantly monitoring your heart and watching for problems. It can record in its memory any events that have been requested. The ICD can be programmed to perform a large number of tasks and reprogrammed by a special computer with a pickup placed on your chest. My ICD is on the right but I believe most of the time it is on the left side. It is funny to watch the technician poking at their computer when they place the pickup on the wrong side. I always try to tell them but sometimes they don't listen or are going so fast it doesn't register. My ICD was originally programmed to record short events, and to monitor and record longer events. They can tell you the exact time of day that these events occurred. It can be interesting when you realize what you were doing when the event happened. Every ICD has different features but I think most have the ability to first try to pace the heart back into a normal rhythm when an event lasts too long. My ICD will actually try this pacing a second time with a higher voltage if necessary. It the event still continues, then the ICD charges a capacitor so that it can deliver the life saving shock. Sometimes the unit will do this but if the event stops it will not deliver the shock. This is similar to the process that delivers the flash on our cameras, you can turn the flash on but if you don't take a picture the charge just goes away. All of the parameters can be programmed and what they changed was the length of time an event could occur before the pacing would attempt to return my ticker to a normal rhythm. My ticker was stopping the events on it's own but they decided not to have the ICD wait as long to intervene. I know what you mean about wanting to be an informed consumer, especially when it is your body they are talking about. I have an artificial heart valve and on a blood thinner. One negative of that is I had to be in the hospital longer after the pacemaker to get the blood thinner adjusted. During this time I watches some videos, which helped me understand the ICD before they started talking about trading in the pacemaker. I refer to my heart as my ticker because with the metal valve it actually ticks loud enough that folks with great hearing can hear it. One person asked me if I got a new watch. , the fact that you are able to use the Internet is an inspiration to me. My son has lost most of the vision in one eye due to a detached retina. He is very concerned about what will happen if something should happen to the other eye. Now I can tell him that survived and got on with his life. Thanks for sharing! There is a joke about the computer jock that after receiving his ICD printed out all the things that could be programmed. He was sharing the printout with his fellow geeks when the boss came up and wanted to know what was going on. When he found out he said, " Aren't you glad it doesn't run Windows " . Prayers and I am happy if the group is helping. Joe Schmidt God Loves Us All But isn't always happy with us! Re: Introducing myself Hi Joe, I hear you. thanks for expressing yourself about all this. Could you explain a couple of things? What's a VT? And what do you mean when you say that the ICD dealt with some events but didn't shock you, and they adjusted its programming so that it would shock you more easily? Is that what you meant? As I've told others, I'm not going to hesitate forever. I was only recently recommended this by the cardiologist and his colleague the EP. Only in the past couple of months. It took a while to digest this, and then to try to look for people to help me understand more so that I wasn't just like a child about it. The modern value of being an informed patient rather than simply trusting every doctor without even knowing what questions to ask. That's all that's happening with me. I'm not trying to ignore the idea. Honest. Again, what's a VT? And what did you mean by saying the unit did something but it wasn't a shock, and the rest that I asked above? Sorry, not educated enough yet to know how to ask these things properly. Introducing myself Dear ZAP list friends, Hi. My name is , and I just discovered this mailing list in the course of a search for online forums where people discuss the implanted cardioverterdefibrillator (ICD). I'm 64, and after a visit to the emergency room of a local hospital and a days-long stay in Intensive Care, I was diagnosed with dilated cardiomyopathy. as most of you probably know, this means that the upper left ventricle of my heart is enlarged and weakened, preventing it from pumping fresh blood into my body as efficiently as the normal rate. For those who are interested in the pertinent details, a series of echocardiograms have shown my ejection fraction to be lower than 35 per cent, even at best. I'm maintaining myself in a non-emergency state by taking several drugs that But my cardiologist believes that this condition puts me in statistical danger of suffering cardiac arrhythmia and sudden, unpreventable death. So he, as well as an electrocardiologist I consulted for further explanation, recommend that I have a cardioverterdefibrillator implanted to save my life if and when my heart does go into such a state. I know the helpfulness of these devices is generally agreed upon. But as I've never before undergone any kind of surgery, and because I don't know much about the potential problems an ICD might cause, starting with mistaken firing, I'd like to hear something from other heart patients experienced with it. For instance, in the little online research I've managed to do, I've gotten the idea that the ICD might go off more often than I'd imagine, each time making me feel as if I'd been kicked in the chest by a horse. It just sounds like an anxiety-filled and depressing way to live, but of course so is putting up with the idea that I might drop dead any time without warning from a heart arrhythmia, without even a chance to clutch at my chest and call 911, as in a heart attack scenario. I'll welcome any advice or just discussion. I'll rely on this mailing list for messages, because I'm legally blind and the screen reader (text to speech) program that allows me to operate my computer very successfully in many regards, including Web surfing in general, makes it confusing to find messages that are on Web sites and in forums. It would be difficult to describe exactly the problems, but suffice it to say that I'm hoping I can rely on using the mailing list only. Back messages, archives, etc. aren't easy to access . if you want to refer me to a specific archived message, please include the URL of that message in the post, so I can click on it and be taken directly to that message. thanks very much for the extra help. I know I have a lot to learn, and I feel as if I ought to make a decision to schedule an implant as soon as I feel a little better informed about what to expect. I have been reading online and in a couple of messages I've seen from this list so far about the drug amiodarone, which apparently suppresses arrhythmia a little bit in order to keep the ICD from kicking in too easily if it's programmed carefully. I did read Guy's post just now, and there are a few things I'll have to ask for explanation about when I reply to it later today. But one thing my recent reading online at various medical sites permits me to comment on is that this drug represents a fairly dramatic exception to the FDA requiring strict studies and testing prior to certification. It was in wide use in Europe more than 30 years ago, as I think Guy says, and U.S. doctors were importing it privately to use on heart patients. The European drug company threatened to stop selling it to U.S. doctors unless the FDA granted their approval, which they did in 1985 or so, if I remember correctly. So it's a bit of an outlaw drug, though widely used. Also, it's the drug that was put up against the ICD in that study that pronounced ICD to be helpful by a meaningful percentage in preventing death, compared to the drug used alone. And a study published a year after that says that amiodarone used *with* an ICD helps to prevent excessive shocks. I'm enjoying learning none of this makes me feel very enthusiastic about consenting to get an ICD, even at the sophisticated hospital I'd go to here in Los Angeles (Cedars-Sinai). it seems as if I have a choice now that my heart problem has been diagnosed. Either expect to suddenly drop dead at any moment, nothing I can do to forestall it as one might a heart attack, or get the ICD and keep getting shocked and fainting and falling down and, I don't know, waking up in an ER if it happens when I'm away from home? yes, I'm pretty freaked out about all this, I confess. I hope a few days on this list may help me get myself together before I make the commitment. My electrocardiologist has told me to call him with questions, which I will, but I want to be as informed as possible in order not to be rushed into this after asking the wrong questions and/or being rushed on the phone so I can't think clearly. Thanks very much, ------------------------------------ Be sure to visit and use other ZapLife.org services: The ZapperBBS at http://zaplife.org/phpBB2/viewforum.php?f=1 1 - Email list forum at / 2 - Email delivery of the Zapper Newsletter at 2/ 3 - Email list forum for those involved in ICD litigation at 3/ ZapChat - Real time online support group (Thursdays 8PM EST) at http://www.zaplife.org/chat.html ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at http://www.zaplife.org/zap4.htm The ZAPPER Home page at http://www.zaplife.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi Jamey- I have a St Jude Medical ICD and only one lead. Mine is for prevention agaist SCD (sudden cardiac death). I have a rare cardiomyopathy that puts me at a higher risk. We decided to do only one lead at this time. We can add up to 3 more as time goes on if my EF drops or I need them. An ICD does three things- pacemaker, cardioverter, and defibrillator. If someone goes into VT (ventricular tachycardia aka super fast beats) they can usually be paced out of it. If the device decides that is not enough it can use the next step up which is the cardioversion- it is a shock but not the whole enchilada. The next step is the actual defibrillation- if your heart has gone into fibrillation (VF)then it is just basically fluttering around and not really beating. If this happens then the device will " charge " and deliver the " big " shock. Usually after the shock is delivered the heart muscle can be kind of sleepy. This is where the pacer function comes in again- mine is set to pace me at 40 beats per minute until my heart " wakes up " and starts back on it's own again. Believe it or not- just one lead can do all of this. Now that being said I wish they would have done 2 leads because now I am having PVC's and they can't see them on the reports with only one lead measuring. Some people need various kinds of pacing and can need additional leads- ventricluar and atrial. Everyone is different. You said you play drums. If you have the ICD you want to stay away from big speakers like they have at concerts. They have magnets in them and can interfere with your device. Hope this helps! Best Wishes- Candi > > Â HI MY NAME IS JAMEY I'VE BEEN ON HERE ONCE OR TWICE I WAS SUPPOSE TO GET MY ICD THIS LAST OCTOBER BUT THEY DOUBLED MY LISINOPRIL AND ONE OTHER MEDICATION. ADN I FEEL A LOT BETTER SO I BEEN HOLDING BACK ON GETTING THE ICD THEY WANT TO PUT A ST JUDE ONE IN WHICH HAS 3 WIRES 2 FOR PACING AND ONE FOR ZAPPING. AND THE DR TOLD ME THAT WHEN HE PUTS THE WIRE IN 1 GOES THROUGH THE VALVE OF THE RIGHT SIDE AND HAS TO GO THROUGH A VEIN INTO THE LEFT SIDE OF MY HEART IF HES LUCKY AND CAN DO IT. SO WHAT I WANNA KNOW IS WITH BOTH WIRES HOOKED UP PACING MY HEART WILL IT GO UP FROM 26%? AND IF I ONLY HAVE ONE WIRE HOOKED UP ON THE RIGHT SIDE WHAT GOOD WILL THAT DO? RIGBT NOW I FEEL GREAT I PLAY DRUMS WHICH IS GOOD FOR MY CARDIO.IF ANYONE HAS THE INFO PLEASE LET ME KNOW.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 My pleasure . One little point I would like to make though, the more i learned the more i found myself listening to my heart(at the beginning) which can drive anyone mad. The heart beats something like several billion times(don't know the approximate number) in a lifetime and listening to it constantly is really maddening so i would let the doctors do their thing, and try hard not to worry so much. Because the first three months after i got my ICD since my initial meds were not working feeling anxious and constantly worrying kept my adrenaline going which is what you don't want. if you find yourself about to get shocked, sit down, no matter where you are and just try to think about calm and serene waters of caribbean or hawaii or in my case Turkeyand the mediterranean and remember that the icd is working for you and saving your life. That makes it much easier. That is my method and everyone has a different method. Don't worry you'll find yours as well. Regards, TURKFrom: Yardbird <yardbird@dslextreme .com>Subject: Introducing myself@groups .comDate: Monday, January 5, 2009, 3:26 PMDear ZAP list friends,Hi. My name is , and I just discovered this mailing list in the courseof a search for online forums where people discuss the implantedcardioverterdefibri llator (ICD).I'm 64, and after a visit to the emergency room of a local hospital and adays-long stay in Intensive Care, I was diagnosed with dilatedcardiomyopathy. as most of you probably know, this means that the upper leftventricle of my heart is enlarged and weakened, preventing it from pumpingfresh blood into my body as efficiently as the normal rate. For those whoare interested in the pertinent details, a series of echocardiograms haveshown my ejection fraction to be lower than 35 per cent, even at best.I'm maintaining myself in a non-emergency state by taking several drugs thatBut my cardiologist believes that this condition puts me in statisticaldanger of suffering cardiac arrhythmia and sudden,unpreventable death. So he, as well as an electrocardiologist I consultedfor further explanation, recommend that I have a cardioverterdefibri llatorimplanted to save my life if and when my heart does go into such a state.I know the helpfulness of these devices is generally agreed upon. But asI've never before undergone any kind of surgery, and because I don't knowmuch about the potential problems an ICD might cause, starting with mistakenfiring, I'd like to hearsomething from other heart patients experienced with it. For instance, inthe little online research I've managed to do, I've gotten the idea that theICD might go off more often than I'd imagine, each time making me feel as ifI'd been kicked in the chest by a horse. It just sounds like ananxiety-filled and depressing way tolive, but of course so is putting up with the idea that I might drop deadany time without warning from a heart arrhythmia, without even a chance toclutch at my chest and call 911, as in a heart attack scenario.I'll welcome any advice or just discussion. I'll rely on this mailing listfor messages, because I'm legally blind and the screen reader (text tospeech) program that allows me to operate my computer very successfully inmany regards, including Web surfing in general, makes it confusing to findmessages that are on Web sites and in forums. It would be difficult todescribe exactly the problems, but suffice it to say that I'm hoping I canrely on using the mailing list only. Back messages, archives, etc. aren'teasy to access . if you want to refer me to a specific archived message,please include theURL of that message in the post, so I can click on it and be taken directlyto that message. thanks very much for the extra help.I know I have a lot to learn, and I feel as if I ought to make a decision toschedule an implant as soon as I feel a little better informed about what toexpect.I have been reading online and in a couple of messages I've seen from thislist so far about the drug amiodarone, which apparently suppressesarrhythmia a little bit in order to keep the ICD from kicking in too easilyif it's programmed carefully.I did read Guy's post just now, and there are a few things I'll have to askfor explanation about when I reply to it later today. But one thing myrecent reading online at various medical sites permits me to comment on isthat this drug represents a fairly dramatic exception to the FDA requiringstrict studies and testing prior to certification. It was in wide use inEurope more than 30 years ago, as I think Guy says, and U.S. doctors wereimporting it privately to use on heart patients. The European drug companythreatened to stop selling it to U.S. doctors unless the FDA granted theirapproval, which they did in 1985 or so, if I remember correctly. So it's abit of an outlaw drug, though widely used.Also, it's the drug that was put up against the ICD in that study thatpronounced ICD to be helpful by a meaningful percentage in preventing death,compared to the drug used alone. And a study published a year after thatsays that amiodarone used *with* an ICD helps to prevent excessive shocks.I'm enjoying learning none of this makes me feel very enthusiastic aboutconsenting to get an ICD, even at the sophisticated hospital I'd go to herein Los Angeles (Cedars-Sinai) . it seems as if I have a choice now that myheart problem has been diagnosed. Either expect to suddenly drop dead at anymoment, nothing I can do to forestall it as one might a heart attack, or getthe ICD and keep getting shocked and fainting and falling down and, I don'tknow, waking up in an ER if it happens when I'm away from home? yes, I'mpretty freaked out about all this, I confess. I hope a few days on this listmay help me get myself together before I make the commitment. Myelectrocardiologist has told me to call him with questions, which I will,but I want to be as informed as possible in order not to be rushed into thisafter asking the wrong questions and/or being rushed on the phone so I can'tthink clearly.Thanks very much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , Actually, Mark isn't taking amiodarone. He is taking coreg, lisinopriol, spironolactone, warfarin, low dose aspirin and lasix. His left ventricle doesn't pump enough blood and his heart is enlarged. It had shrunk a centimeter after a year, but he doesn't go back to the cardiologist until summer, unless he has symptoms of CHF. His heart rate isn't irregular as often as it used to be. He takes his blood pressure and checks his heart rate a few times a day, just to keep me sane. He has a Medtronic Concerto that they check every three months wirelessly. I'm glad that you are getting so many great replies. This board was so helpful for me, when he was diagnosed and I was searching for information. Thanks! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi, I'd love to have been able to address you by name, but my screen reader program just says a few nonsensical syllables for your email handle, and tracing it in the way to make the program spell out loud kind of looks like " number one lemming " but with only one " m " for some reason. " i'm sure this is cute and says something about you, but how about a name just for emails like this? Thanks. that said, here's my response: Yes, I've gotten a lot of information and learned about a lot of ICD peoples' experiences, and I've made notes, saved messages, bookmarked that FAQ Web page you mention, and much else. I'm trying my best to absorb all this and at the same time process my apprehensive feelings about all of it and come to my decision with a clear head, not feeling like just a passive,ignorant patient. What I appreciated most in your message was the description of how the ICD works in everyday terms. I mean, how it's programmed (with an algorithm, I know) to set high and low thresholds for heart rate, and then to respond in not just one simple way, as I imagined, but with a more various set of graduated responses, including of course the dreaded shock. I have two questions about the tracking of ICD activity and adjustment of it: 1. I think I understand that interrogations are most conventionally done by the doctor holding a sensing device against your chest where the ICD is and recording signals it sends the device. Now, I sort of read between the lines in Bill's post (bill who is from the Southwest and travels around by Winnebago, although I know that's not the right way to say it). And that's that you can do remote interrogation by doing it yourself and then reporting it by phone or, who knows, email to the doctor. Well, would it be a terrible disadvantage that I'm legally blind in a way that makes it impossible for me to read the output on such a device, and I don't know if there are any talking ICD interrogators made especially for the blind? So I'd have to never go far from my doctor or another suitable doctor? 2. I know they have to replace the battery or the unit every few years, depending. And I know that requires surgery, although my doctor describes it as a slight matter compared to the installation. but how about if it needs adjustment to its programming? they have to cut you open again and handle it physically in order to tweak it? Or can this be done electronically through your skin by a device? thanks very much, And please tell me what name you'd like to be addressed by. I didn't find a signature of any sort beneath your message, either. Introducing myself > > Dear ZAP list friends, > > Hi. My name is , and I just discovered this mailing list in the course > of a search for online forums where people discuss the implanted > cardioverterdefibrillator (ICD). > > I'm 64, and after a visit to the emergency room of a local hospital and a > days-long stay in Intensive Care, I was diagnosed with dilated > cardiomyopathy. as most of you probably know, this means that the upper left > ventricle of my heart is enlarged and weakened, preventing it from pumping > fresh blood into my body as efficiently as the normal rate. For those who > are interested in the pertinent details, a series of echocardiograms have > shown my ejection fraction to be lower than 35 per cent, even at best. > > I'm maintaining myself in a non-emergency state by taking several drugs that > > But my cardiologist believes that this condition puts me in statistical > danger of suffering cardiac arrhythmia and sudden, > unpreventable death. So he, as well as an electrocardiologist I consulted > for further explanation, recommend that I have a cardioverterdefibrillator > implanted to save my life if and when my heart does go into such a state. > > I know the helpfulness of these devices is generally agreed upon. But as > I've never before undergone any kind of surgery, and because I don't know > much about the potential problems an ICD might cause, starting with mistaken > firing, I'd like to hear > something from other heart patients experienced with it. For instance, in > the little online research I've managed to do, I've gotten the idea that the > ICD might go off more often than I'd imagine, each time making me feel as if > I'd been kicked in the chest by a horse. It just sounds like an > anxiety-filled and depressing way to > live, but of course so is putting up with the idea that I might drop dead > any time without warning from a heart arrhythmia, without even a chance to > clutch at my chest and call 911, as in a heart attack scenario. > > I'll welcome any advice or just discussion. I'll rely on this mailing list > for messages, because I'm legally blind and the screen reader (text to > speech) program that allows me to operate my computer very successfully in > many regards, including Web surfing in general, makes it confusing to find > messages that are on Web sites and in forums. It would be difficult to > describe exactly the problems, but suffice it to say that I'm hoping I can > rely on using the mailing list only. Back messages, archives, etc. aren't > easy to access . if you want to refer me to a specific archived message, > please include the > URL of that message in the post, so I can click on it and be taken directly > to that message. thanks very much for the extra help. > > I know I have a lot to learn, and I feel as if I ought to make a decision to > schedule an implant as soon as I feel a little better informed about what to > expect. > > I have been reading online and in a couple of messages I've seen from this > list so far about the drug amiodarone, which apparently suppresses > arrhythmia a little bit in order to keep the ICD from kicking in too easily > if it's programmed carefully. > > I did read Guy's post just now, and there are a few things I'll have to ask > for explanation about when I reply to it later today. But one thing my > recent reading online at various medical sites permits me to comment on is > that this drug represents a fairly dramatic exception to the FDA requiring > strict studies and testing prior to certification. It was in wide use in > Europe more than 30 years ago, as I think Guy says, and U.S. doctors were > importing it privately to use on heart patients. The European drug company > threatened to stop selling it to U.S. doctors unless the FDA granted their > approval, which they did in 1985 or so, if I remember correctly. So it's a > bit of an outlaw drug, though widely used. > > Also, it's the drug that was put up against the ICD in that study that > pronounced ICD to be helpful by a meaningful percentage in preventing death, > compared to the drug used alone. And a study published a year after that > says that amiodarone used *with* an ICD helps to prevent excessive shocks. > > I'm enjoying learning none of this makes me feel very enthusiastic about > consenting to get an ICD, even at the sophisticated hospital I'd go to here > in Los Angeles (Cedars-Sinai). it seems as if I have a choice now that my > heart problem has been diagnosed. Either expect to suddenly drop dead at any > moment, nothing I can do to forestall it as one might a heart attack, or get > the ICD and keep getting shocked and fainting and falling down and, I don't > know, waking up in an ER if it happens when I'm away from home? yes, I'm > pretty freaked out about all this, I confess. I hope a few days on this list > may help me get myself together before I make the commitment. My > electrocardiologist has told me to call him with questions, which I will, > but I want to be as informed as possible in order not to be rushed into this > after asking the wrong questions and/or being rushed on the phone so I can't > think clearly. > > Thanks very much, > > > > ------------------------------------ > > Be sure to visit and use other ZapLife.org services: > > The ZapperBBS at > http://zaplife.org/phpBB2/viewforum.php?f=1 > 1 - Email list forum at > / > 2 - Email delivery of the Zapper Newsletter at > 2/ > 3 - Email list forum for those involved in ICD litigation at > 3/ > ZapChat - Real time online support group (Thursdays 8PM EST) at > http://www.zaplife.org/chat.html > ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at > http://www.zaplife.org/zap4.htm > The ZAPPER Home page at > http://www.zaplife.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Dear Joe, thanks for the generous and informative message. Your descriptions of the programming and adjustment and how things work in actual practice, along with what others are telling me, makes it more and more clear, which helps me find some level mental ground for myself so I'm not simply panicked at this information-gathering, decision-making phase. Everything you're telling me is appreciated. And I've done enough homework on general information sites like the Mayo Clinic to remember immediately some of the initials you explain, now that someone repeats the phrase to me. Besides which, as I've said, I did bookmark the FAQ page and I'll try to take some time with it to learn a whole list of terms comfortably enough to bandy them about the way you guys do. as for your son, my sympathies for what he's already gone through, and for his fears of what might happen if he were very unlucky. The truth is, no getting away from it, sight is our most important sense as human being, by design, and losing some or all of it is impossible to not feel as a tragic and life-changing loss. But, that said, there's a whole world of blind adaptive technology of all sorts, support groups,low vision clinics, and a million things when a person becomes aware of them and explores the network of such things. I know a fair amount about such stuff, even though not many of the people I've been in contact with have lost sight in one eye only because of that issue. But still I may have helpful information, so why not save my email address and contact me when you wish and we can talk about this stuff. The address is yardbird@... I know you can just get that from the headers of this message, but I thought I'd type in the address, too. finally, of course I got a laugh out of the joke about someone expressing gratitude that his ICD doesn't run on Windows, with tall the implications about instability, long boot-up times, security breaches, and a million problems. Windows has become sort of the Death Star of the world as a joke, these days, along with Microsoft cast as the Empire. yes, I used to have normal vision, and I saw Star Wars. anyway, thanks again. Boy, I begged for someone to get this list working for me, and they did, now I'm getting dozens of messages to respond to and barely have time to do anything else! But I'm smiling as I say this, because I feel my time ought to be dedicated to intensively learning all I can about this topic as quickly as possible in order to be able to come to a resolution. All best, Introducing myself Dear ZAP list friends, Hi. My name is , and I just discovered this mailing list in the course of a search for online forums where people discuss the implanted cardioverterdefibrillator (ICD). I'm 64, and after a visit to the emergency room of a local hospital and a days-long stay in Intensive Care, I was diagnosed with dilated cardiomyopathy. as most of you probably know, this means that the upper left ventricle of my heart is enlarged and weakened, preventing it from pumping fresh blood into my body as efficiently as the normal rate. For those who are interested in the pertinent details, a series of echocardiograms have shown my ejection fraction to be lower than 35 per cent, even at best. I'm maintaining myself in a non-emergency state by taking several drugs that But my cardiologist believes that this condition puts me in statistical danger of suffering cardiac arrhythmia and sudden, unpreventable death. So he, as well as an electrocardiologist I consulted for further explanation, recommend that I have a cardioverterdefibrillator implanted to save my life if and when my heart does go into such a state. I know the helpfulness of these devices is generally agreed upon. But as I've never before undergone any kind of surgery, and because I don't know much about the potential problems an ICD might cause, starting with mistaken firing, I'd like to hear something from other heart patients experienced with it. For instance, in the little online research I've managed to do, I've gotten the idea that the ICD might go off more often than I'd imagine, each time making me feel as if I'd been kicked in the chest by a horse. It just sounds like an anxiety-filled and depressing way to live, but of course so is putting up with the idea that I might drop dead any time without warning from a heart arrhythmia, without even a chance to clutch at my chest and call 911, as in a heart attack scenario. I'll welcome any advice or just discussion. I'll rely on this mailing list for messages, because I'm legally blind and the screen reader (text to speech) program that allows me to operate my computer very successfully in many regards, including Web surfing in general, makes it confusing to find messages that are on Web sites and in forums. It would be difficult to describe exactly the problems, but suffice it to say that I'm hoping I can rely on using the mailing list only. Back messages, archives, etc. aren't easy to access . if you want to refer me to a specific archived message, please include the URL of that message in the post, so I can click on it and be taken directly to that message. thanks very much for the extra help. I know I have a lot to learn, and I feel as if I ought to make a decision to schedule an implant as soon as I feel a little better informed about what to expect. I have been reading online and in a couple of messages I've seen from this list so far about the drug amiodarone, which apparently suppresses arrhythmia a little bit in order to keep the ICD from kicking in too easily if it's programmed carefully. I did read Guy's post just now, and there are a few things I'll have to ask for explanation about when I reply to it later today. But one thing my recent reading online at various medical sites permits me to comment on is that this drug represents a fairly dramatic exception to the FDA requiring strict studies and testing prior to certification. It was in wide use in Europe more than 30 years ago, as I think Guy says, and U.S. doctors were importing it privately to use on heart patients. The European drug company threatened to stop selling it to U.S. doctors unless the FDA granted their approval, which they did in 1985 or so, if I remember correctly. So it's a bit of an outlaw drug, though widely used. Also, it's the drug that was put up against the ICD in that study that pronounced ICD to be helpful by a meaningful percentage in preventing death, compared to the drug used alone. And a study published a year after that says that amiodarone used *with* an ICD helps to prevent excessive shocks. I'm enjoying learning none of this makes me feel very enthusiastic about consenting to get an ICD, even at the sophisticated hospital I'd go to here in Los Angeles (Cedars-Sinai). it seems as if I have a choice now that my heart problem has been diagnosed. Either expect to suddenly drop dead at any moment, nothing I can do to forestall it as one might a heart attack, or get the ICD and keep getting shocked and fainting and falling down and, I don't know, waking up in an ER if it happens when I'm away from home? yes, I'm pretty freaked out about all this, I confess. I hope a few days on this list may help me get myself together before I make the commitment. My electrocardiologist has told me to call him with questions, which I will, but I want to be as informed as possible in order not to be rushed into this after asking the wrong questions and/or being rushed on the phone so I can't think clearly. Thanks very much, ------------------------------------ Be sure to visit and use other ZapLife.org services: The ZapperBBS at http://zaplife.org/phpBB2/viewforum.php?f=1 1 - Email list forum at / 2 - Email delivery of the Zapper Newsletter at 2/ 3 - Email list forum for those involved in ICD litigation at 3/ ZapChat - Real time online support group (Thursdays 8PM EST) at http://www.zaplife.org/chat.html ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at http://www.zaplife.org/zap4.htm The ZAPPER Home page at http://www.zaplife.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 dear joel i think it's amazing the adaptive techoliges thats outthere ! my mother is legal blind and she gains much use form several supportive devices ! i know icd are as i say a shocking exprince however to learn as much as you can is best i received my firsted icd when i was very very young i am now on my 3rd i was much like you wanting to knwo everythingpossible out there before i got my icd but at that time i joined this group when i was 13 a few years after getting my firsted icd i have learn much and met minny people to everyoen the icd exprince is diffrent the fear of a shock does go aways with time most never get shocked others do i have been shocked countless times and still counting a icd has three settleign your doctor will set it will pace for very slow heart rate this is deemed bby your doctor mine is set for 50 it will pace for arrythmia thats above a rate mine for the paceing for high rate is set for 180 mosted of the time it will try and pace you out efore dilivering a low voltage shock and then if need be a higher most people do not feel the lower shock if my heart goes over 250 my icd goes directly to high shock and will repeat as needed ! if needed most only need one shock some aare able to be paced out or can revert to normla rythmia without the need of icd's help ! there are miny parts to liveing with the icd most importantly is knowledge support and a never give up point of view ! stacie and kira service dog and hero From: Yardbird <yardbird@...>Subject: Re: Introducing myself Date: Friday, January 9, 2009, 3:00 PM Dear Joe,thanks for the generous and informative message. Your descriptions of the programming and adjustment and how things work in actual practice, along with what others are telling me, makes it more and more clear, which helps me find some level mental ground for myself so I'm not simply panicked at this information- gathering, decision-making phase. Everything you're telling me is appreciated. And I've done enough homework on general information sites like the Mayo Clinic to remember immediately some of the initials you explain, now that someone repeats the phrase to me. Besides which, as I've said, I did bookmark the FAQ page and I'll try to take some time with it to learn a whole list of terms comfortably enough to bandy them about the way you guys do.as for your son, my sympathies for what he's already gone through, and for his fears of what might happen if he were very unlucky. The truth is, no getting away from it, sight is our most important sense as human being, by design, and losing some or all of it is impossible to not feel as a tragic and life-changing loss. But, that said, there's a whole world of blind adaptive technology of all sorts, support groups,low vision clinics, and a million things when a person becomes aware of them and explores the network of such things. I know a fair amount about such stuff, even though not many of the people I've been in contact with have lost sight in one eye only because of that issue. But still I may have helpful information, so why not save my email address and contact me when you wish and we can talk about this stuff. The address isyardbird@dslextreme .comI know you can just get that from the headers of this message, but I thought I'd type in the address, too.finally, of course I got a laugh out of the joke about someone expressing gratitude that his ICD doesn't run on Windows, with tall the implications about instability, long boot-up times, security breaches, and a million problems. Windows has become sort of the Death Star of the world as a joke, these days, along with Microsoft cast as the Empire. yes, I used to have normal vision, and I saw Star Wars.anyway, thanks again. Boy, I begged for someone to get this list working for me, and they did, now I'm getting dozens of messages to respond to and barely have time to do anything else! But I'm smiling as I say this, because I feel my time ought to be dedicated to intensively learning all I can about this topic as quickly as possible in order to be able to come to a resolution.All best, Introducing myselfDear ZAP list friends,Hi. My name is , and I just discovered this mailing list in the courseof a search for online forums where people discuss the implantedcardioverterdefibri llator (ICD).I'm 64, and after a visit to the emergency room of a local hospital and adays-long stay in Intensive Care, I was diagnosed with dilatedcardiomyopathy. as most of you probably know, this means that the upper leftventricle of my heart is enlarged and weakened, preventing it from pumpingfresh blood into my body as efficiently as the normal rate. For those whoare interested in the pertinent details, a series of echocardiograms haveshown my ejection fraction to be lower than 35 per cent, even at best.I'm maintaining myself in a non-emergency state by taking several drugs thatBut my cardiologist believes that this condition puts me in statisticaldanger of suffering cardiac arrhythmia and sudden,unpreventable death. So he, as well as an electrocardiologist I consultedfor further explanation, recommend that I have a cardioverterdefibri llatorimplanted to save my life if and when my heart does go into such a state.I know the helpfulness of these devices is generally agreed upon. But asI've never before undergone any kind of surgery, and because I don't knowmuch about the potential problems an ICD might cause, starting with mistakenfiring, I'd like to hearsomething from other heart patients experienced with it. For instance, inthe little online research I've managed to do, I've gotten the idea that theICD might go off more often than I'd imagine, each time making me feel as ifI'd been kicked in the chest by a horse. It just sounds like ananxiety-filled and depressing way tolive, but of course so is putting up with the idea that I might drop deadany time without warning from a heart arrhythmia, without even a chance toclutch at my chest and call 911, as in a heart attack scenario.I'll welcome any advice or just discussion. I'll rely on this mailing listfor messages, because I'm legally blind and the screen reader (text tospeech) program that allows me to operate my computer very successfully inmany regards, including Web surfing in general, makes it confusing to findmessages that are on Web sites and in forums. It would be difficult todescribe exactly the problems, but suffice it to say that I'm hoping I canrely on using the mailing list only. Back messages, archives, etc. aren'teasy to access . if you want to refer me to a specific archived message,please include theURL of that message in the post, so I can click on it and be taken directlyto that message. thanks very much for the extra help.I know I have a lot to learn, and I feel as if I ought to make a decision toschedule an implant as soon as I feel a little better informed about what toexpect.I have been reading online and in a couple of messages I've seen from thislist so far about the drug amiodarone, which apparently suppressesarrhythmia a little bit in order to keep the ICD from kicking in too easilyif it's programmed carefully.I did read Guy's post just now, and there are a few things I'll have to askfor explanation about when I reply to it later today. But one thing myrecent reading online at various medical sites permits me to comment on isthat this drug represents a fairly dramatic exception to the FDA requiringstrict studies and testing prior to certification. It was in wide use inEurope more than 30 years ago, as I think Guy says, and U.S. doctors wereimporting it privately to use on heart patients. The European drug companythreatened to stop selling it to U.S. doctors unless the FDA granted theirapproval, which they did in 1985 or so, if I remember correctly. So it's abit of an outlaw drug, though widely used.Also, it's the drug that was put up against the ICD in that study thatpronounced ICD to be helpful by a meaningful percentage in preventing death,compared to the drug used alone. And a study published a year after thatsays that amiodarone used *with* an ICD helps to prevent excessive shocks.I'm enjoying learning none of this makes me feel very enthusiastic aboutconsenting to get an ICD, even at the sophisticated hospital I'd go to herein Los Angeles (Cedars-Sinai) . it seems as if I have a choice now that myheart problem has been diagnosed. Either expect to suddenly drop dead at anymoment, nothing I can do to forestall it as one might a heart attack, or getthe ICD and keep getting shocked and fainting and falling down and, I don'tknow, waking up in an ER if it happens when I'm away from home? yes, I'mpretty freaked out about all this, I confess. I hope a few days on this listmay help me get myself together before I make the commitment. Myelectrocardiologist has told me to call him with questions, which I will,but I want to be as informed as possible in order not to be rushed into thisafter asking the wrong questions and/or being rushed on the phone so I can'tthink clearly.Thanks very much,------------ --------- --------- ------Be sure to visit and use other ZapLife.org services:The ZapperBBS athttp://zaplife. org/phpBB2/ viewforum. php?f=11 - Email list forum athttp://health. groups.. com/group/ /2 - Email delivery of the Zapper Newsletter athttp://health. groups.. com/group/ 2/3 - Email list forum for those involved in ICD litigation athttp://health. groups.. com/group/ 3/ZapChat - Real time online support group (Thursdays 8PM EST) athttp://www.zaplife. org/chat. htmlZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations athttp://www.zaplife. org/zap4. htmThe ZAPPER Home page athttp://www.zaplife. org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hello Old Hippie, No, I haven't even gotten an ICD yet. So this kind of talk is all new to me. If you'd like to explain, fine. But now I suspect you mean your ICD battery was just running down after a period of time and some usage (discharge), and it was time for the battery to be replaced? Is that it, really? Or something else? susp[ect Re: Introducing myself > First of all, what do you mean about having felt better about your > ICD once it was " charging? " Yardbird, You didn't get a battery charger with yours? [] PS: Welcome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hey Turk, thanks for the extra advice. I'll try to learn these things as I go. haven't yet gotten the ICD, so I'm just learning what I can now. Thanks again. I've never been to Istanbul. But if I try to meditate on something calming, I'll think of the Pacific ocean crashing against the shore in mendocino County, California. Or something like that.rethyhtmically tjoml Introducing myself @groups .com Date: Monday, January 5, 2009, 3:26 PM Dear ZAP list friends, Hi. My name is , and I just discovered this mailing list in the course of a search for online forums where people discuss the implanted cardioverterdefibri llator (ICD). I'm 64, and after a visit to the emergency room of a local hospital and a days-long stay in Intensive Care, I was diagnosed with dilated cardiomyopathy. as most of you probably know, this means that the upper left ventricle of my heart is enlarged and weakened, preventing it from pumping fresh blood into my body as efficiently as the normal rate. For those who are interested in the pertinent details, a series of echocardiograms have shown my ejection fraction to be lower than 35 per cent, even at best. I'm maintaining myself in a non-emergency state by taking several drugs that But my cardiologist believes that this condition puts me in statistical danger of suffering cardiac arrhythmia and sudden, unpreventable death. So he, as well as an electrocardiologist I consulted for further explanation, recommend that I have a cardioverterdefibri llator implanted to save my life if and when my heart does go into such a state. I know the helpfulness of these devices is generally agreed upon. But as I've never before undergone any kind of surgery, and because I don't know much about the potential problems an ICD might cause, starting with mistaken firing, I'd like to hear something from other heart patients experienced with it. For instance, in the little online research I've managed to do, I've gotten the idea that the ICD might go off more often than I'd imagine, each time making me feel as if I'd been kicked in the chest by a horse. It just sounds like an anxiety-filled and depressing way to live, but of course so is putting up with the idea that I might drop dead any time without warning from a heart arrhythmia, without even a chance to clutch at my chest and call 911, as in a heart attack scenario. I'll welcome any advice or just discussion. I'll rely on this mailing list for messages, because I'm legally blind and the screen reader (text to speech) program that allows me to operate my computer very successfully in many regards, including Web surfing in general, makes it confusing to find messages that are on Web sites and in forums. It would be difficult to describe exactly the problems, but suffice it to say that I'm hoping I can rely on using the mailing list only. Back messages, archives, etc. aren't easy to access . if you want to refer me to a specific archived message, please include the URL of that message in the post, so I can click on it and be taken directly to that message. thanks very much for the extra help. I know I have a lot to learn, and I feel as if I ought to make a decision to schedule an implant as soon as I feel a little better informed about what to expect. I have been reading online and in a couple of messages I've seen from this list so far about the drug amiodarone, which apparently suppresses arrhythmia a little bit in order to keep the ICD from kicking in too easily if it's programmed carefully. I did read Guy's post just now, and there are a few things I'll have to ask for explanation about when I reply to it later today. But one thing my recent reading online at various medical sites permits me to comment on is that this drug represents a fairly dramatic exception to the FDA requiring strict studies and testing prior to certification. It was in wide use in Europe more than 30 years ago, as I think Guy says, and U.S. doctors were importing it privately to use on heart patients. The European drug company threatened to stop selling it to U.S. doctors unless the FDA granted their approval, which they did in 1985 or so, if I remember correctly. So it's a bit of an outlaw drug, though widely used. Also, it's the drug that was put up against the ICD in that study that pronounced ICD to be helpful by a meaningful percentage in preventing death, compared to the drug used alone. And a study published a year after that says that amiodarone used *with* an ICD helps to prevent excessive shocks. I'm enjoying learning none of this makes me feel very enthusiastic about consenting to get an ICD, even at the sophisticated hospital I'd go to here in Los Angeles (Cedars-Sinai) . it seems as if I have a choice now that my heart problem has been diagnosed. Either expect to suddenly drop dead at any moment, nothing I can do to forestall it as one might a heart attack, or get the ICD and keep getting shocked and fainting and falling down and, I don't know, waking up in an ER if it happens when I'm away from home? yes, I'm pretty freaked out about all this, I confess. I hope a few days on this list may help me get myself together before I make the commitment. My electrocardiologist has told me to call him with questions, which I will, but I want to be as informed as possible in order not to be rushed into this after asking the wrong questions and/or being rushed on the phone so I can't think clearly. Thanks very much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi Bonnie, Thanks. I'm reading every bit of information and advice carefully. I can see everyone's condition is a little different, the medications aren't all the same for everyone, and so forth. I feel so much better just hearing more and more about this great variety of experience. And it's really generous of you to devote time to communicating on this list when you aren't even the patient. On a blind support list to which I subscribe, there's a sighted wife who's more active on the list than her blind hubby, although he's a perfectly good guy and does check in with a post from time to time. So I mean it sounds like a real partnership. Coming from this single man in some trouble now, I'm envious. Keep up the good work.communicting Re: Introducing myself , Actually, Mark isn't taking amiodarone. He is taking coreg, lisinopriol, spironolactone, warfarin, low dose aspirin and lasix. His left ventricle doesn't pump enough blood and his heart is enlarged. It had shrunk a centimeter after a year, but he doesn't go back to the cardiologist until summer, unless he has symptoms of CHF. His heart rate isn't irregular as often as it used to be. He takes his blood pressure and checks his heart rate a few times a day, just to keep me sane. He has a Medtronic Concerto that they check every three months wirelessly. I'm glad that you are getting so many great replies. This board was so helpful for me, when he was diagnosed and I was searching for information. Thanks! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 dear stacy, thanks for all your kind and informativ words. I see that you're someone who, for better or worse, knows pretty much about the range of adaptive technology out in the disability world. And I'm learning now, you're right. This is my intensive learning period. The information and support is priceless! Thanks much, jhoel going alondaAs a person Introducing myself Dear ZAP list friends, Hi. My name is , and I just discovered this mailing list in the course of a search for online forums where people discuss the implanted cardioverterdefibri llator (ICD). I'm 64, and after a visit to the emergency room of a local hospital and a days-long stay in Intensive Care, I was diagnosed with dilated cardiomyopathy. as most of you probably know, this means that the upper left ventricle of my heart is enlarged and weakened, preventing it from pumping fresh blood into my body as efficiently as the normal rate. For those who are interested in the pertinent details, a series of echocardiograms have shown my ejection fraction to be lower than 35 per cent, even at best. I'm maintaining myself in a non-emergency state by taking several drugs that But my cardiologist believes that this condition puts me in statistical danger of suffering cardiac arrhythmia and sudden, unpreventable death. So he, as well as an electrocardiologist I consulted for further explanation, recommend that I have a cardioverterdefibri llator implanted to save my life if and when my heart does go into such a state. I know the helpfulness of these devices is generally agreed upon. But as I've never before undergone any kind of surgery, and because I don't know much about the potential problems an ICD might cause, starting with mistaken firing, I'd like to hear something from other heart patients experienced with it. For instance, in the little online research I've managed to do, I've gotten the idea that the ICD might go off more often than I'd imagine, each time making me feel as if I'd been kicked in the chest by a horse. It just sounds like an anxiety-filled and depressing way to live, but of course so is putting up with the idea that I might drop dead any time without warning from a heart arrhythmia, without even a chance to clutch at my chest and call 911, as in a heart attack scenario. I'll welcome any advice or just discussion. I'll rely on this mailing list for messages, because I'm legally blind and the screen reader (text to speech) program that allows me to operate my computer very successfully in many regards, including Web surfing in general, makes it confusing to find messages that are on Web sites and in forums. It would be difficult to describe exactly the problems, but suffice it to say that I'm hoping I can rely on using the mailing list only. Back messages, archives, etc. aren't easy to access . if you want to refer me to a specific archived message, please include the URL of that message in the post, so I can click on it and be taken directly to that message. thanks very much for the extra help. I know I have a lot to learn, and I feel as if I ought to make a decision to schedule an implant as soon as I feel a little better informed about what to expect. I have been reading online and in a couple of messages I've seen from this list so far about the drug amiodarone, which apparently suppresses arrhythmia a little bit in order to keep the ICD from kicking in too easily if it's programmed carefully. I did read Guy's post just now, and there are a few things I'll have to ask for explanation about when I reply to it later today. But one thing my recent reading online at various medical sites permits me to comment on is that this drug represents a fairly dramatic exception to the FDA requiring strict studies and testing prior to certification. It was in wide use in Europe more than 30 years ago, as I think Guy says, and U.S. doctors were importing it privately to use on heart patients. The European drug company threatened to stop selling it to U.S. doctors unless the FDA granted their approval, which they did in 1985 or so, if I remember correctly. So it's a bit of an outlaw drug, though widely used. Also, it's the drug that was put up against the ICD in that study that pronounced ICD to be helpful by a meaningful percentage in preventing death, compared to the drug used alone. And a study published a year after that says that amiodarone used *with* an ICD helps to prevent excessive shocks. I'm enjoying learning none of this makes me feel very enthusiastic about consenting to get an ICD, even at the sophisticated hospital I'd go to here in Los Angeles (Cedars-Sinai) . it seems as if I have a choice now that my heart problem has been diagnosed. Either expect to suddenly drop dead at any moment, nothing I can do to forestall it as one might a heart attack, or get the ICD and keep getting shocked and fainting and falling down and, I don't know, waking up in an ER if it happens when I'm away from home? yes, I'm pretty freaked out about all this, I confess. I hope a few days on this list may help me get myself together before I make the commitment. My electrocardiologist has told me to call him with questions, which I will, but I want to be as informed as possible in order not to be rushed into this after asking the wrong questions and/or being rushed on the phone so I can't think clearly. Thanks very much, ------------ --------- --------- ------ Be sure to visit and use other ZapLife.org services: The ZapperBBS at http://zaplife. org/phpBB2/ viewforum. php?f=1 1 - Email list forum at http://health. groups.. com/group/ / 2 - Email delivery of the Zapper Newsletter at http://health. groups.. com/group/ 2/ 3 - Email list forum for those involved in ICD litigation at http://health. groups.. com/group/ 3/ ZapChat - Real time online support group (Thursdays 8PM EST) at http://www.zaplife. org/chat. html ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at http://www.zaplife. org/zap4. htm The ZAPPER Home page at http://www.zaplife. org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Welcome, Mark! That is so awful about the Gardasil reactions. I hope the families realize that other vaccines should be questioned, too, and that there are exemptions they can use for school. Winnie Introducing myself Vaccinations > Hello Everyone, > > My name is Dr. Mark Flannery and I am new to this group. I just > want to give you a brief introduction and explain why I became a > part of this group. I am a chiropractor in southern California. > I specialize in functional medicine (finding dysfunctions in the > body and getting the body to work the way it is suppose to > work). I practice with my wife. Dr. Vera Flannery. She > specializes in treating pregnant women and children > (chiropractically). She does all of the chiropractic adjusting > in our office, while I do blood chemistry, stool, saliva and > urine analysis. I am currently treating 15 girls in my office > who have had adverse reactions to the Gardasil vaccine (shame on > you Merk). I have treated many cases of adverse vaccine > reactions but the reactions to the Gardasil vaccine are the > worst (as a whole) I have seen. I am here to pick up any > information I can that may help " my girls " . I will also offer > any advise and share any knowledge I can. I get about > 200 emails a day and it is difficult for me to always response > in a timely manner but I do my best. I get summary emails from > this site and I only quickly look over the post so I may miss > posts directed towards me. I you feel I missed a post, please > email me directly at DrMark@.... I hope we can > help each other as I know you are all to familiar with the > damage vaccines can do. If you are interested here is a link to > a paper I wrote on Autism/Vaccines: > http://livehealthwise.com/custom_content/44915_vaccines__autism.html > Live Healthy. Live Smart. Live HealthWise! > > Dr. Mark Flannery > > HealthWise Chiropractic & Nutrition > 1919 St., Suite 250 > Simi Valley, CA 93065 > 805.991.7455 Tel > 805.991.7466 Fax > > www.LiveHealthWise.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Dr. Lawrence Palevsky M.D. is on E.38thSt. He is our ped and very no-vax friendly (that is an understatement <g>). HTH. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 What a pleasure to have you on our list, Dr. Flannery. Welcome! On Sat, Feb 14, 2009 at 10:15 AM, Dr. Mark Flannery <drmark@...> wrote: > Hello Everyone, > > My name is Dr. Mark Flannery and I am new to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Welcome to the group. My kids are partially vaxed, DS had a severe allergic reaction to DPT -- that was our wake-up call and the beginning of our research. Thankfully DS is fine and DD has not had Gardasil or many others, and my Pediatrician is fine with that. I checked out your website and was thrilled to read your article on vaccines and autism - excellent! Thanks for educating your patients and the Internet world! Best of health, *Isn't it better to be safe, than sorry... *http://www.EcoCleanInfo.com <http://www.ecocleaninfo.com/> Please consider the environment before printing this e-mail. On Sat, Feb 14, 2009 at 12:15 PM, Dr. Mark Flannery < drmark@...> wrote: > Hello Everyone, > > My name is Dr. Mark Flannery and I am new to this group. I just want to > give you a brief introduction and explain why I became a part of this group. > I am a chiropractor in southern California. I specialize in functional > medicine (finding dysfunctions in the body and getting the body to work the > way it is suppose to work). I practice with my wife. Dr. Vera Flannery. She > specializes in treating pregnant women and children (chiropractically). She > does all of the chiropractic adjusting in our office, while I do blood > chemistry, stool, saliva and urine analysis. I am currently treating 15 > girls in my office who have had adverse reactions to the Gardasil vaccine > (shame on you Merk). I have treated many cases of adverse vaccine reactions > but the reactions to the Gardasil vaccine are the worst (as a whole) I have > seen. I am here to pick up any information I can that may help " my girls " . I > will also offer any advise and share any knowledge I can. I get about > 200 emails a day and it is difficult for me to always response in a timely > manner but I do my best. I get summary emails from this site and I only > quickly look over the post so I may miss posts directed towards me. I you > feel I missed a post, please email me directly at DrMark@... hope we can help each other as I know you are all to familiar with the > damage vaccines can do. If you are interested here is a link to a paper I > wrote on Autism/Vaccines: > http://livehealthwise.com/custom_content/44915_vaccines__autism.html > > Live Healthy. Live Smart. Live HealthWise! > > Dr. Mark Flannery > > HealthWise Chiropractic & Nutrition > 1919 St., Suite 250 > Simi Valley, CA 93065 > 805.991.7455 Tel > 805.991.7466 Fax > > www.LiveHealthWise.com <http://www.livehealthwise.com/> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 Hi Leah - welcome to our group - glad you found us. Most of us have A of the lower E but we do sympathize and understand (as well as anyone will). I have one question about the treatment you've mentioned. Why would they do a myo (on the upper E sphincter?) AND botox? Just curious as at least with LES A, you would generally not get both at the same time. Please keep us posted on your journey with . We are here to help in anyway we can. - in NC > > My name is Leah, and I think some of you have visited my blog? Sorry, but this intro is going to be epic novel length! > > Anyway, my 13 year old daughter has Cricopharyngeal Achalasia. That means it's at the top, right at her epiglottis instead of at the bottom at the LES. It also means that her food stops right in front of her airway, so aspiration is a HUGE problem. > > has actually had this for about 12 years, only we didn't know it. She had a nissen fundo. done at 11 months old for severe reflux. All was great (well, except for the gtube she came home with. LOL) Shortly after that, she started aspirating food, but she was still on soft food so other than aspirating liquids (which is common among kids with Down syndrome....did I mention she also has Down syndrome?) things seemed ok. When we transitioned her to solid food she started having trouble, but we thought stuff was just stacking on top of her nissen. > > Then, about 3 years ago she had another scope done because she had a couple episodes of aspiration pneumonia. The GI doc came out saying her esophagus was collapsed. Something he'd never seen before. When she lays flat her esophagus collapses, causing secretions to pool, and which in turn causes her to aspirate. " Maybe you should go to Mayo for this? " he said. Only he didn't say it like we SHOULD, just that it might be something we should think about. was stable, and getting her a hospital bed made a big difference, so we decided not to worry about it too much. She had even more serious medical problems (she has a stroke disorder) to worry about so those were at the top of the list. > > Fast forward to this past spring. was having a palate expander put on in preparation for braces, only she could not swallow AT ALL with it in. After a couple of days we removed it, and decided to work hard core on speech therapy to get oral motor skills under better control and try the expander again in a year. One of the things the therapists wanted to try was Vital Stim, which is electrode therapy on the facial muscles. We did 2 sessions, and she was chewing and working her mouth much better, but I decided before we pressed this further we should head to Mayo and make sure this wasn't going to affect her swallow in a negative way. > > Wow, was I glad we did that! Her swallow study was SCARY to say the least! We're in MN, and the doctors at Mayo want us to see Dr. Nurko at Boston Children's. We're having to jump through some hoops to make that happen, and are now waiting for final approval from the state of MN so we can go. In the last couple of weeks 's swallow has gotten worse. We THINK she's in pain (she has trouble communicating that she's in pain) because her behavior is just whacko right now, which is usually our indicator that she's in pain, or will turn up sick in a couple days. Well, it's been a couple of weeks and no sickness, so it has to be pain. (or, she's just incredibly hormonal, in which case maybe *I* should be hospitalized as a form of respite??? LOL) > > Dr. Nurko in Boston has already reviewed all of 's records, and has come up with a plan of action if we ever GET there. First, she'll have an updated endoscopy since it's been a few years. While she's under for that they'll place the manometry probe. She'll have to have it in for 24 hours before they do the actual testing because all the anesthesia has to be out of her system. Then they'll do the test, and determine of surgery is an option. If it is, she'll have a myotomy w/botox. Then hang out for a couple of days to make sure there are no problems, then come home. > > is no stranger to surgeries. She's had 22 or 23, or 20 something surgeries (I've lost count, really) and to be honest I'm kind of ticked off that she'll be having another. And that she's been in pain all this time and hasn't been able to tell us. And that we have to WAIT to get to Boston. (though I do have to be honest and say I dropped the ball for several weeks!) > > So...here we are. Hanging out with all of you! > > ~Leah~ > www.gardenofeagan.blogspot.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2009 Report Share Posted October 29, 2009 It's good to hear from new memebers. I also wonder why both myotomy and botox. It sounds like your daughter is a real troooper. I hope they give her some relief asap. \Keep us up to date on what's happening, ________________________________ From: lespring <deanleah@...> achalasia Sent: Wed, October 28, 2009 2:04:05 AM Subject: Introducing myself  My name is Leah, and I think some of you have visited my blog? Sorry, but this intro is going to be epic novel length! Anyway, my 13 year old daughter has Cricopharyngeal Achalasia. That means it's at the top, right at her epiglottis instead of at the bottom at the LES. It also means that her food stops right in front of her airway, so aspiration is a HUGE problem. has actually had this for about 12 years, only we didn't know it. She had a nissen fundo. done at 11 months old for severe reflux. All was great (well, except for the gtube she came home with. LOL) Shortly after that, she started aspirating food, but she was still on soft food so other than aspirating liquids (which is common among kids with Down syndrome.... did I mention she also has Down syndrome?) things seemed ok. When we transitioned her to solid food she started having trouble, but we thought stuff was just stacking on top of her nissen. Then, about 3 years ago she had another scope done because she had a couple episodes of aspiration pneumonia. The GI doc came out saying her esophagus was collapsed. Something he'd never seen before. When she lays flat her esophagus collapses, causing secretions to pool, and which in turn causes her to aspirate. " Maybe you should go to Mayo for this? " he said. Only he didn't say it like we SHOULD, just that it might be something we should think about. was stable, and getting her a hospital bed made a big difference, so we decided not to worry about it too much. She had even more serious medical problems (she has a stroke disorder) to worry about so those were at the top of the list. Fast forward to this past spring. was having a palate expander put on in preparation for braces, only she could not swallow AT ALL with it in. After a couple of days we removed it, and decided to work hard core on speech therapy to get oral motor skills under better control and try the expander again in a year. One of the things the therapists wanted to try was Vital Stim, which is electrode therapy on the facial muscles. We did 2 sessions, and she was chewing and working her mouth much better, but I decided before we pressed this further we should head to Mayo and make sure this wasn't going to affect her swallow in a negative way. Wow, was I glad we did that! Her swallow study was SCARY to say the least! We're in MN, and the doctors at Mayo want us to see Dr. Nurko at Boston Children's. We're having to jump through some hoops to make that happen, and are now waiting for final approval from the state of MN so we can go. In the last couple of weeks 's swallow has gotten worse. We THINK she's in pain (she has trouble communicating that she's in pain) because her behavior is just whacko right now, which is usually our indicator that she's in pain, or will turn up sick in a couple days. Well, it's been a couple of weeks and no sickness, so it has to be pain. (or, she's just incredibly hormonal, in which case maybe *I* should be hospitalized as a form of respite??? LOL) Dr. Nurko in Boston has already reviewed all of 's records, and has come up with a plan of action if we ever GET there. First, she'll have an updated endoscopy since it's been a few years. While she's under for that they'll place the manometry probe. She'll have to have it in for 24 hours before they do the actual testing because all the anesthesia has to be out of her system. Then they'll do the test, and determine of surgery is an option. If it is, she'll have a myotomy w/botox. Then hang out for a couple of days to make sure there are no problems, then come home. is no stranger to surgeries. She's had 22 or 23, or 20 something surgeries (I've lost count, really) and to be honest I'm kind of ticked off that she'll be having another. And that she's been in pain all this time and hasn't been able to tell us. And that we have to WAIT to get to Boston. (though I do have to be honest and say I dropped the ball for several weeks!) So...here we are. Hanging out with all of you! ~Leah~ www.gardenofeagan. blogspot. com __________________________________________________________________ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Welcome, Christie! Glad to have you on board. I look forward to hearing more from you. Winnie Introducing myselfVaccinations > Dear new friends on Sheri's list,> > I have just joined this week so wanted to introduce myself. I'm > a > divorced mom of 3 grown daughters, one in college, one who just > graduated, and my oldest who's been teaching school in NYC for > about > four years after graduating. I homeschooled a few years off and > on, > and had all home births. I'm an attorney in Rochester, New York > (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. > old > baby. Grew up around Champaign-Urbana area if any of you know > it.), > but I've always worked only part-time from home while raising > the > kids (passed the NY bar in 2000 while getting divorced. I was > really > only just getting started career-wise, working as a law guardian > in > family court on custody cases, doing Social Security appeals, > when my > car was rear-ended twice, four months apart, leaving me with a > bad > neck and some back problems. I've been on disability since > January, > going to physical therapy, and hoping to get back to at least > part-time paid income. I care very much about the protection of > children, but am not in favor of ripping children away from > their > homes by child protective that happens so frequently here. Dr. > Wakefield's dedication to research, diagnosis, and treatment of > autistic children with gastrointestinal disorders is a beautiful > thing.> My first daughter was vaccinated, but not until 8 mos. old. She > was > born in Illinois, where the doctor simply told me, "You can > refuse." In NY they put more pressure on us. Second daughter, > vaccinated on schedule, first two series, reactions both times, > so I > didn't vaccinate her again until she was eleven. She had bad > wheat > allergies and dairy allergy, as did my first daughter. We made > pizza > with barley flour and no cheese for years. If you gave #2 a > cookie > at the mall, she'd be screaming in minutes and everyone would be > looking at us like we were child abusers. Sometimes now I > wonder if > she was not affected in more subtle ways by the vaccinations. > She > has social anxiety but also great strengths intellectually and > musically.> Third daughter, I was getting braver and she was not vaccinated > until > she was at least 8 years old and wanted vaccinations. Then she > wanted Guardasil at 18 and I should have protested more > strongly. She never had the food allergies. She's had > respiratory > troubles, a wet cough, ever since. I've been talking to Sheri a > bit > about that, as I'm ready to try homeopathy if SHE will try it. > She > was on antibiotics for walking pneumonia when she had the > Guardasil > shots. I know, I know. She doesn't have asthma, after > expensive > testing. They don't have a diagnosis yet for what's wrong with > her, > but a pulmonary specialist doesn't think it's been pneumonia or > bronchitis. Allergy testing is next.> > In 4th grade, she had a similar cough all year, and then it went > away. I thought it might be related to getting a dog, or > getting new > carpet in the 4th grade classroom. Lots of the kids were on > inhalers, the nurse told me. I've been trying to remember > exactly > when she got her first vaccinations. It seems like it started > after > she had antibiotics for the first time, after some dental work. > For > the past two years, one course of antibiotics has never done > anything, so they've put her on stronger ones.> > Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't > wait > until Dr. Wakefield's book arrives at the house, any day. I try > to > post on HuffPost, etc. in favor of Dr. Wakefield and help share > what > I'm learning about vaccines with others.> > I recently took a webinar for continuing legal education credit > from > Pace Law School on representing claimants before the Vaccine > Injury > Compensation Court, May 13 I think was the date. They were > going to > leave them up for at least awhile at www.law.pace.edu/cle. Pace > did > a second webinar on May 14 on autism issues, designed more for > the > general public.> > Thank you for all that you are doing, and thank you, Sheri, for > letting me join you. My oldest daughter, 25, plans to vaccinate > her > hypothetical children and gets mad at me when I want to talk > about > vaccines with her. Partly I'm interested in learning more > because I > want to get to the point where I can present a foolproof case to > her. These days with the autism rate what it is...... > Holland, > attorney with the Birt Center who spoke at the Pace > seminar, said then, that in a revolution, people never realize > how > close the old regime is to falling, until it does. Let's keep on!> > > Sincerely,> > Christie Waldman> Rochester NY> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2010 Report Share Posted June 14, 2010 Thanks, Winnie! I've got to tell you, that was my long version I sent a long time ago and since it didn't seem to go through, I sent the shorter version afterwards. I see this one has a June 13 date on it. Kind of bizarre--but I'm glad to be here with you all! Christie Waldman At 04:23 PM 6/14/2010, wharrison@... wrote: > > >Welcome, Christie! Glad to have you on board. I >look forward to hearing more from you. > >Winnie > > Introducing myself >Vaccinations > > > Dear new friends on Sheri's list, > > > > I have just joined this week so wanted to introduce myself. I'm > > a > > divorced mom of 3 grown daughters, one in college, one who just > > graduated, and my oldest who's been teaching school in NYC for > > about > > four years after graduating. I homeschooled a few years off and > > on, > > and had all home births. I'm an attorney in Rochester, New York > > (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. > > old > > baby. Grew up around Champaign-Urbana area if any of you know > > it.), > > but I've always worked only part-time from home while raising > > the > > kids (passed the NY bar in 2000 while getting divor ced. I was > > really > > only just getting started career-wise, working as a law guardian > > in > > family court on custody cases, doing Social Security appeals, > > when my > > car was rear-ended twice, four months apart, leaving me with a > > bad > > neck and some back problems. I've been on disability since > > January, > > going to physical therapy, and hoping to get back to at least > > part-time paid income. I care very much about the protection of > > children, but am not in favor of ripping children away from > > their > > homes by child protective that happens so frequently here. Dr. > > Wakefield's dedication to research, diagnosis, and treatment of > > autistic children with gastrointestinal disorders is a beautiful > > thing. > > My first daughter was vaccinated, but not until 8 mos. old. She > > was > > born in Illinois, where the doctor simply told me, " You can > > refuse. " In NY they put more pressure on us. Second daughter, > > vaccinated on schedule, first two series, reactions both times, > > so I > > didn't vaccinate her again until she was eleven. She had bad > > wheat > > allergies and dairy allergy, as did my first daughter. We made > > pizza > > with barley flour and no cheese for years. If you gave #2 a > > cookie > > at the mall, she'd be screaming in minutes and everyone would be > > looking at us like we were child abusers. Sometimes now I > > wonder if > > she was not affected in more subtle ways by the vaccinations. > > She > > has social anxiety but also great strengths intellectually and > > musically. > > Third daughter, I was getting braver and she was not vaccinated > > until > > she was at least 8 years old and wanted vaccinations. Then she > > wanted Guardasil at 18 and I should have protested more > > stron gly. She never had the food allergies. She's had > > respiratory > > troubles, a wet cough, ever since. I've been talking to Sheri a > > bit > > about that, as I'm ready to try homeopathy if SHE will try it. > > She > > was on antibiotics for walking pneumonia when she had the > > Guardasil > > shots. I know, I know. She doesn't have asthma, after > > expensive > > testing. They don't have a diagnosis yet for what's wrong with > > her, > > but a pulmonary specialist doesn't think it's been pneumonia or > > bronchitis. Allergy testing is next. > > > > In 4th grade, she had a similar cough all year, and then it went > > away. I thought it might be related to getting a dog, or > > getting new > > carpet in the 4th grade classroom. Lots of the kids were on > > inhalers, the nurse told me. I've been trying to remember > > exactly > > when she got her first vaccinations. It seem s like it started > > after > > she had antibiotics for the first time, after some dental work. > > For > > the past two years, one course of antibiotics has never done > > anything, so they've put her on stronger ones. > > > > Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't > > wait > > until Dr. Wakefield's book arrives at the house, any day. I try > > to > > post on HuffPost, etc. in favor of Dr. Wakefield and help share > > what > > I'm learning about vaccines with others. > > > > I recently took a webinar for continuing legal education credit > > from > > Pace Law School on representing claimants before the Vaccine > > Injury > > Compensation Court, May 13 I think was the date. They were > > going to > > leave them up for at least awhile at www.law.pace.edu/cle. Pace > > did > > a second webinar on May 14 on autism issues, designed more for > > the > > general public. > > > > Thank you for all that you are doing, and thank you, Sheri, for > > letting me join you. My oldest daughter, 25, plans to vaccinate > > her > > hypothetical children and gets mad at me when I want to talk > > about > > vaccines with her. Partly I'm interested in learning more > > because I > > want to get to the point where I can present a foolproof case to > > her. These days with the autism rate what it is...... > > Holland, > > attorney with the Birt Center who spoke at the Pace > > seminar, said then, that in a revolution, people never realize > > how > > close the old regime is to falling, until it does. Let's keep on! > > > > > > Sincerely, > > > > Christie Waldman > > Rochester NY > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2010 Report Share Posted June 15, 2010 Its because I have to approve new member messages and I can approve them by just hitting reply when I get the message to be moderated or going to the webpage and approving. I had just been hitting reply for many days but it appears they did not go through. The other day I looked on the webpage for pending messages and saw a lot of old ones that should have already come through so sorry Sheri listowner > > > > > >Welcome, Christie! Glad to have you on board. I > >look forward to hearing more from you. > > > >Winnie > > > > Introducing myself > >Vaccinations > > > > > Dear new friends on Sheri's list, > > > > > > I have just joined this week so wanted to introduce myself. I'm > > > a > > > divorced mom of 3 grown daughters, one in college, one who just > > > graduated, and my oldest who's been teaching school in NYC for > > > about > > > four years after graduating. I homeschooled a few years off and > > > on, > > > and had all home births. I'm an attorney in Rochester, New York > > > (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. > > > old > > > baby. Grew up around Champaign-Urbana area if any of you know > > > it.), > > > but I've always worked only part-time from home while raising > > > the > > > kids (passed the NY bar in 2000 while getting divor ced. I was > > > really > > > only just getting started career-wise, working as a law guardian > > > in > > > family court on custody cases, doing Social Security appeals, > > > when my > > > car was rear-ended twice, four months apart, leaving me with a > > > bad > > > neck and some back problems. I've been on disability since > > > January, > > > going to physical therapy, and hoping to get back to at least > > > part-time paid income. I care very much about the protection of > > > children, but am not in favor of ripping children away from > > > their > > > homes by child protective that happens so frequently here. Dr. > > > Wakefield's dedication to research, diagnosis, and treatment of > > > autistic children with gastrointestinal disorders is a beautiful > > > thing. > > > My first daughter was vaccinated, but not until 8 mos. old. She > > > was > > > born in Illinois, where the doctor simply told me, " You can > > > refuse. " In NY they put more pressure on us. Second daughter, > > > vaccinated on schedule, first two series, reactions both times, > > > so I > > > didn't vaccinate her again until she was eleven. She had bad > > > wheat > > > allergies and dairy allergy, as did my first daughter. We made > > > pizza > > > with barley flour and no cheese for years. If you gave #2 a > > > cookie > > > at the mall, she'd be screaming in minutes and everyone would be > > > looking at us like we were child abusers. Sometimes now I > > > wonder if > > > she was not affected in more subtle ways by the vaccinations. > > > She > > > has social anxiety but also great strengths intellectually and > > > musically. > > > Third daughter, I was getting braver and she was not vaccinated > > > until > > > she was at least 8 years old and wanted vaccinations. Then she > > > wanted Guardasil at 18 and I should have protested more > > > stron gly. She never had the food allergies. She's had > > > respiratory > > > troubles, a wet cough, ever since. I've been talking to Sheri a > > > bit > > > about that, as I'm ready to try homeopathy if SHE will try it. > > > She > > > was on antibiotics for walking pneumonia when she had the > > > Guardasil > > > shots. I know, I know. She doesn't have asthma, after > > > expensive > > > testing. They don't have a diagnosis yet for what's wrong with > > > her, > > > but a pulmonary specialist doesn't think it's been pneumonia or > > > bronchitis. Allergy testing is next. > > > > > > In 4th grade, she had a similar cough all year, and then it went > > > away. I thought it might be related to getting a dog, or > > > getting new > > > carpet in the 4th grade classroom. Lots of the kids were on > > > inhalers, the nurse told me. I've been trying to remember > > > exactly > > > when she got her first vaccinations. It seem s like it started > > > after > > > she had antibiotics for the first time, after some dental work. > > > For > > > the past two years, one course of antibiotics has never done > > > anything, so they've put her on stronger ones. > > > > > > Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't > > > wait > > > until Dr. Wakefield's book arrives at the house, any day. I try > > > to > > > post on HuffPost, etc. in favor of Dr. Wakefield and help share > > > what > > > I'm learning about vaccines with others. > > > > > > I recently took a webinar for continuing legal education credit > > > from > > > Pace Law School on representing claimants before the Vaccine > > > Injury > > > Compensation Court, May 13 I think was the date. They were > > > going to > > > leave them up for at least awhile at www.law.pace.edu/cle. Pace > > > did > > > a second webinar on May 14 on autism issues, designed more for > > > the > > > general public. > > > > > > Thank you for all that you are doing, and thank you, Sheri, for > > > letting me join you. My oldest daughter, 25, plans to vaccinate > > > her > > > hypothetical children and gets mad at me when I want to talk > > > about > > > vaccines with her. Partly I'm interested in learning more > > > because I > > > want to get to the point where I can present a foolproof case to > > > her. These days with the autism rate what it is...... > > > Holland, > > > attorney with the Birt Center who spoke at the Pace > > > seminar, said then, that in a revolution, people never realize > > > how > > > close the old regime is to falling, until it does. Let's keep on! > > > > > > > > > Sincerely, > > > > > > Christie Waldman > > > Rochester NY > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2010 Report Share Posted June 16, 2010 No problem! Thanks for letting me know, though. christie At 10:23 AM 6/15/2010, you wrote: > > > >Its because I have to approve new member >messages and I can approve them by just hitting >reply when I get the message to be moderated or >going to the webpage and approving. I had just >been hitting reply for many days but it appears >they did not go through. The other day I looked >on the webpage for pending messages and saw a >lot of old ones that should have already come through > >so sorry >Sheri >listowner > > > > > > > > > >Welcome, Christie! Glad to have you on board. I > > >look forward to hearing more from you. > > > > > >Winnie > > > > > > Introducing myself > > ><mailto:Vaccinations%40>Vaccinations > > > > > > > Dear new friends on Sheri's list, > > > > > > > > I have just joined this week so wanted to introduce myself. I'm > > > > a > > > > divorced mom of 3 grown daughters, one in college, one who just > > > > graduated, and my oldest who's been teaching school in NYC for > > > > about > > > > four years after graduating. I homeschooled a few years off and > > > > on, > > > > and had all home births. I'm an attorney in Rochester, New York > > > > (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. > > > > old > > > > baby. Grew up around Champaign-Urbana area if any of you know > > > > it.), > > > > but I've always worked only part-time from home while raising > > > > the > > > > kids (passed the NY bar in 2000 while getting divor ced. I was > > > > really > > > > only just getting started career-wise, working as a law guardian > > > > in > > > > family court on custody cases, doing Social Security appeals, > > > > when my > > > > car was rear-ended twice, four months apart, leaving me with a > > > > bad > > > > neck and some back problems. I've been on disability since > > > > January, > > > > going to physical therapy, and hoping to get back to at least > > > > part-time paid income. I care very much about the protection of > > > > children, but am not in favor of ripping children away from > > > > their > > > > homes by child protective that happens so frequently here. Dr. > > > > Wakefield's dedication to research, diagnosis, and treatment of > > > > autistic children with gastrointestinal disorders is a beautiful > > > > thing. > > > > My first daughter was vaccinated, but not until 8 mos. old. She > > > > was > > > > born in Illinois, where the doctor simply told me, " You can > > > > refuse. " In NY they put more pressure on us. Second daughter, > > > > vaccinated on schedule, first two series, reactions both times, > > > > so I > > > > didn't vaccinate her again until she was eleven. She had bad > > > > wheat > > > > allergies and dairy allergy, as did my first daughter. We made > > > > pizza > > > > with barley flour and no cheese for years. If you gave #2 a > > > > cookie > > > > at the mall, she'd be screaming in minutes and everyone would be > > > > looking at us like we were child abusers. Sometimes now I > > > > wonder if > > > > she was not affected in more subtle ways by the vaccinations. > > > > She > > > > has social anxiety but also great strengths intellectually and > > > > musically. > > > > Third daughter, I was getting braver and she was not vaccinated > > > > until > > > > she was at least 8 years old and wanted vaccinations. Then she > > > > wanted Guardasil at 18 and I should have protested more > > > > stron gly. She never had the food allergies. She's had > > > > respiratory > > > > troubles, a wet cough, ever since. I've been talking to Sheri a > > > > bit > > > > about that, as I'm ready to try homeopathy if SHE will try it. > > > > She > > > > was on antibiotics for walking pneumonia when she had the > > > > Guardasil > > > > shots. I know, I know. She doesn't have asthma, after > > > > expensive > > > > testing. They don't have a diagnosis yet for what's wrong with > > > > her, > > > > but a pulmonary specialist doesn't think it's been pneumonia or > > > > bronchitis. Allergy testing is next. > > > > > > > > In 4th grade, she had a similar cough all year, and then it went > > > > away. I thought it might be related to getting a dog, or > > > > getting new > > > > carpet in the 4th grade classroom. Lots of the kids were on > > > > inhalers, the nurse told me. I've been trying to remember > > > > exactly > > > > when she got her first vaccinations. It seem s like it started > > > > after > > > > she had antibiotics for the first time, after some dental work. > > > > For > > > > the past two years, one course of antibiotics has never done > > > > anything, so they've put her on stronger ones. > > > > > > > > Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't > > > > wait > > > > until Dr. Wakefield's book arrives at the house, any day. I try > > > > to > > > > post on HuffPost, etc. in favor of Dr. Wakefield and help share > > > > what > > > > I'm learning about vaccines with others. > > > > > > > > I recently took a webinar for continuing legal education credit > > > > from > > > > Pace Law School on representing claimants before the Vaccine > > > > Injury > > > > Compensation Court, May 13 I think was the date. They were > > > > going to > > > > leave them up for at least awhile at www.law.pace.edu/cle. Pace > > > > did > > > > a second webinar on May 14 on autism issues, designed more for > > > > the > > > > general public. > > > > > > > > Thank you for all that you are doing, and thank you, Sheri, for > > > > letting me join you. My oldest daughter, 25, plans to vaccinate > > > > her > > > > hypothetical children and gets mad at me when I want to talk > > > > about > > > > vaccines with her. Partly I'm interested in learning more > > > > because I > > > > want to get to the point where I can present a foolproof case to > > > > her. These days with the autism rate what it is...... > > > > Holland, > > > > attorney with the Birt Center who spoke at the Pace > > > > seminar, said then, that in a revolution, people never realize > > > > how > > > > close the old regime is to falling, until it does. Let's keep on! > > > > > > > > > > > > Sincerely, > > > > > > > > Christie Waldman > > > > Rochester NY > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Thank you for introducing yourself and also for your post on the measles. I can not remember if I had the measles or not. I was born in 1970.I have two children 1yr and 2 yr never been vaccinated both of them just caught the chicken pox form our friends little girl who has been vaccinated for the chicken pox.My cousin who has 5 children all have whooping cough and they too have been vaccinated for whooping cough???? I could go on and on LOL. Again thank you for your posts. I am looking forward to reading the books you recommended. Sincerely From: Waldman <cwaldman@...>Subject: Introducing myselfVaccinations Date: Wednesday, May 26, 2010, 9:31 PM Dear new friends on Sheri's list, I have just joined this week so wanted to introduce myself. I'm a divorced mom of 3 grown daughters, one in college, one who just graduated, and my oldest who's been teaching school in NYC for about four years after graduating. I homeschooled a few years off and on, and had all home births. I'm an attorney in Rochester, New York (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. old baby. Grew up around Champaign-Urbana area if any of you know it.), but I've always worked only part-time from home while raising the kids (passed the NY bar in 2000 while getting divorced. I was really only just getting started career-wise, working as a law guardian in family court on custody cases, doing Social Security appeals, when my car was rear-ended twice, four months apart, leaving me with a bad neck and some back problems. I've been on disability since January, going to physical therapy, and hoping to get back to at least part-time paid income. I care very much about the protection of children, but am not in favor of ripping children away from their homes by child protective that happens so frequently here. Dr. Wakefield's dedication to research, diagnosis, and treatment of autistic children with gastrointestinal disorders is a beautiful thing. My first daughter was vaccinated, but not until 8 mos. old. She was born in Illinois, where the doctor simply told me, "You can refuse." In NY they put more pressure on us. Second daughter, vaccinated on schedule, first two series, reactions both times, so I didn't vaccinate her again until she was eleven. She had bad wheat allergies and dairy allergy, as did my first daughter. We made pizza with barley flour and no cheese for years. If you gave #2 a cookie at the mall, she'd be screaming in minutes and everyone would be looking at us like we were child abusers. Sometimes now I wonder if she was not affected in more subtle ways by the vaccinations. She has social anxiety but also great strengths intellectually and musically. Third daughter, I was getting braver and she was not vaccinated until she was at least 8 years old and wanted vaccinations. Then she wanted Guardasil at 18 and I should have protested more strongly. She never had the food allergies. She's had respiratory troubles, a wet cough, ever since. I've been talking to Sheri a bit about that, as I'm ready to try homeopathy if SHE will try it. She was on antibiotics for walking pneumonia when she had the Guardasil shots. I know, I know. She doesn't have asthma, after expensive testing. They don't have a diagnosis yet for what's wrong with her, but a pulmonary specialist doesn't think it's been pneumonia or bronchitis. Allergy testing is next. In 4th grade, she had a similar cough all year, and then it went away. I thought it might be related to getting a dog, or getting new carpet in the 4th grade classroom. Lots of the kids were on inhalers, the nurse told me. I've been trying to remember exactly when she got her first vaccinations. It seems like it started after she had antibiotics for the first time, after some dental work. For the past two years, one course of antibiotics has never done anything, so they've put her on stronger ones. Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't wait until Dr. Wakefield's book arrives at the house, any day. I try to post on HuffPost, etc. in favor of Dr. Wakefield and help share what I'm learning about vaccines with others. I recently took a webinar for continuing legal education credit from Pace Law School on representing claimants before the Vaccine Injury Compensation Court, May 13 I think was the date. They were going to leave them up for at least awhile at www.law.pace.edu/cle. Pace did a second webinar on May 14 on autism issues, designed more for the general public. Thank you for all that you are doing, and thank you, Sheri, for letting me join you. My oldest daughter, 25, plans to vaccinate her hypothetical children and gets mad at me when I want to talk about vaccines with her. Partly I'm interested in learning more because I want to get to the point where I can present a foolproof case to her. These days with the autism rate what it is...... Holland, attorney with the Birt Center who spoke at the Pace seminar, said then, that in a revolution, people never realize how close the old regime is to falling, until it does. Let's keep on! Sincerely, Christie Waldman Rochester NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 I have used this homeopathic protocol succesfully for croup and whooping cough type illnesses;One time dose aconite at onset. Alternating doses of hepar sulph and spongia. Moves illness along very quickly with most cases being resolved in 24 to 48 hours. Bien Otero FHomNYCSent via BlackBerry from T-MobileFrom: kelly walker <walkerklj@...>Sender: Vaccinations Date: Wed, 23 Jun 2010 09:50:49 -0700 (PDT)<Vaccinations >Reply Vaccinations Subject: Re: Introducing myself Thank you for introducing yourself and also for your post on the measles. I can not remember if I had the measles or not. I was born in 1970.I have two children 1yr and 2 yr never been vaccinated both of them just caught the chicken pox form our friends little girl who has been vaccinated for the chicken pox.My cousin who has 5 children all have whooping cough and they too have been vaccinated for whooping cough???? I could go on and on LOL. Again thank you for your posts. I am looking forward to reading the books you recommended. Sincerely From: Waldman <cwaldmanfrontiernet (DOT) net>Subject: Introducing myselfVaccinations Date: Wednesday, May 26, 2010, 9:31 PM Dear new friends on Sheri's list,I have just joined this week so wanted to introduce myself. I'm a divorced mom of 3 grown daughters, one in college, one who just graduated, and my oldest who's been teaching school in NYC for about four years after graduating. I homeschooled a few years off and on, and had all home births. I'm an attorney in Rochester, New York (graduated SIU Law School, Carbondale, IL, 1985 with an 8 mos. old baby. Grew up around Champaign-Urbana area if any of you know it.), but I've always worked only part-time from home while raising the kids (passed the NY bar in 2000 while getting divorced. I was really only just getting started career-wise, working as a law guardian in family court on custody cases, doing Social Security appeals, when my car was rear-ended twice, four months apart, leaving me with a bad neck and some back problems. I've been on disability since January, going to physical therapy, and hoping to get back to at least part-time paid income. I care very much about the protection of children, but am not in favor of ripping children away from their homes by child protective that happens so frequently here. Dr. Wakefield's dedication to research, diagnosis, and treatment of autistic children with gastrointestinal disorders is a beautiful thing.My first daughter was vaccinated, but not until 8 mos. old. She was born in Illinois, where the doctor simply told me, "You can refuse." In NY they put more pressure on us. Second daughter, vaccinated on schedule, first two series, reactions both times, so I didn't vaccinate her again until she was eleven. She had bad wheat allergies and dairy allergy, as did my first daughter. We made pizza with barley flour and no cheese for years. If you gave #2 a cookie at the mall, she'd be screaming in minutes and everyone would be looking at us like we were child abusers. Sometimes now I wonder if she was not affected in more subtle ways by the vaccinations. She has social anxiety but also great strengths intellectually and musically.Third daughter, I was getting braver and she was not vaccinated until she was at least 8 years old and wanted vaccinations. Then she wanted Guardasil at 18 and I should have protested more strongly. She never had the food allergies. She's had respiratory troubles, a wet cough, ever since. I've been talking to Sheri a bit about that, as I'm ready to try homeopathy if SHE will try it. She was on antibiotics for walking pneumonia when she had the Guardasil shots. I know, I know. She doesn't have asthma, after expensive testing. They don't have a diagnosis yet for what's wrong with her, but a pulmonary specialist doesn't think it's been pneumonia or bronchitis. Allergy testing is next.In 4th grade, she had a similar cough all year, and then it went away. I thought it might be related to getting a dog, or getting new carpet in the 4th grade classroom. Lots of the kids were on inhalers, the nurse told me. I've been trying to remember exactly when she got her first vaccinations. It seems like it started after she had antibiotics for the first time, after some dental work. For the past two years, one course of antibiotics has never done anything, so they've put her on stronger ones.Anyway, so I ordered Silent Witnesses vols. 1 and 2 and can't wait until Dr. Wakefield's book arrives at the house, any day. I try to post on HuffPost, etc. in favor of Dr. Wakefield and help share what I'm learning about vaccines with others.I recently took a webinar for continuing legal education credit from Pace Law School on representing claimants before the Vaccine Injury Compensation Court, May 13 I think was the date. They were going to leave them up for at least awhile at www.law.pace.edu/cle. Pace did a second webinar on May 14 on autism issues, designed more for the general public.Thank you for all that you are doing, and thank you, Sheri, for letting me join you. My oldest daughter, 25, plans to vaccinate her hypothetical children and gets mad at me when I want to talk about vaccines with her. Partly I'm interested in learning more because I want to get to the point where I can present a foolproof case to her. These days with the autism rate what it is...... Holland, attorney with the Birt Center who spoke at the Pace seminar, said then, that in a revolution, people never realize how close the old regime is to falling, until it does. Let's keep on!Sincerely,Christie WaldmanRochester NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Yes, most out there with whooping cough have been vaccinated sometimes not diagnosed because doctor thinks they couldn't have whooping cough because vaccinated so call it something else. With homeopathy treatment can help immensely. But need to find the ONE specific remedy that matches the person's individual symptom picture - if more than one in a family with whooping cough have to go on the individual picture for each person - each may need a different remedy. And then as you progress may need to change remedies. Also Vitamin C and Vitamin D3 Sheri Sent via BlackBerry from T-Mobile From: kelly walker <walkerklj@...> Sender: Vaccinations Date: Wed, 23 Jun 2010 09:50:49 -0700 (PDT) <Vaccinations > ReplyVaccinations Subject: Re: Introducing myself Thank you for introducing yourself and also for your post on the measles. I can not remember if I had the measles or not. I was born in 1970. I have two children 1yr and 2 yr never been vaccinated both of them just caught the chicken pox form our friends little girl who has been vaccinated for the chicken pox. My cousin who has 5 children all have whooping cough and they too have been vaccinated for whooping cough???? I could go on and on LOL. Again thank you for your posts. I am looking forward to reading the books you recommended. Sincerely Sheri Nakken, R.N., MA, Hahnemannian Homeopath Vaccination Information & Choice Network, Washington State, USA Vaccines - http://vaccinationdangers.wordpress.com/ Homeopathy http://homeopathycures.wordpress.com Vaccine Dangers, Childhood Disease Classes & Homeopathy Online/email courses - next classes start September 2010 Quote Link to comment Share on other sites More sharing options...
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