Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Tom in PA I'm from Clarion County on I 80 in western PA. I had angioplasty, then 4 by passes, they didn't work, then had stents put in main artery, had MI, arrythmia, the had ICD implanted in Aug. of 99. It hasn't fired yet but does most of my pacing. My heart rate is really slow from the meds I'm on. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 hi tom in pa, looks like we have the northeast and the south central covered in this great state. leslie is near harrisburg as you are but if memory serves she is north of harrisburg. now we need to know what part of the state ruth covers for this little group. i managed to walkl my near mile today and even did a couple hills. then i pressure washed my entire deck. feeling a little better everyday. a month since i was zapped probably helps a lot. my docs have told me that you cant improve congestive heart failure but deborah heart hospital and john hopkins seem to disagree. ive read article that say with diet and exercise even with congestive heart failure you can still raise that ef to a better lever than what im told i have. i remember you mentioned you are 55, i turned 58 last december. seeeeeeeeeeeee ya bob in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Bob And where are you from in PA? I'm 54. It sounds like all of us from PA are about the same age. My cousin is in New Jersey and she has an ICD and is in her mid 40's. I hear some of you talking about your ICD being set at 140 or so. Mine is set at 175. Does that sound high to you? My own heart rate is around 40 so it is being paced at 60. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Ruth... My ICD is set at 176 for V-tach, 207 for V-fib and w/hysterisis (sp?) my brady is set to pace me at 50 when I drop to 40 bpm ... I never get paced for V-tach because I tend to jump right to 'fib ... I believe the settings are an individual thing depending on results/findings of EP Study. You mention a cousin in the fair state of 'Jersey... 'wondering what part... I'm not far from Atlantic City myself ... and by any chance would cousin be cared for by Penn Cardiology in the Cherry Hill office? JES in 'Jersey I hear some of you talking about your ICD being set at 140 or so. Mine is set at 175. Does that sound high to you? My own heart rate is around 40 so it is being paced at 60. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 hi ruth, i had a feeling you had to be from western pa. tom and leslie are near harrisburg and im way up here in the pocono mountains. patiently waiting for some summer to arrive. bob in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Jes My cousing lives in Bridgewater New Jersey. I don't know her doctor now. She's been to several different kinds of heart doctors. They seem to think it's really inherited in our family. We have a bad family history. I will ask her where she goes to the doctor now. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Hi Ruth, 175 for V-fib doesn't sound high. I am paced at 105 100% of the time and my V-fib rate is set for 200, even though my V-fib is always, religiously, at a rate of 315. That may not make a lot of sense because technically you don't have a rate when you're in V-fib. My V-tach is actually at 315 bpm, and that is so fast that it has the same effect on my body as V-fib would. We use the terms interchangeably with me. Mine is set high because I am a very small person and naturally have a higher heart rate than most people. If I am unpaced though, because of all my medicine, my intrinsic rate comes in at about 60 bpm. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Ruth- The setting for heart rate for v-fib treatment is individual. Mine is at 187. It is determined by stress test, age and other factors. When I had my first icd for only about 6 weeks, I pushed my rate past the initial setting (160) and it went off inappropriately while I was active. some people can't tolerate or need a lower setting. For others they want to be sure it doesn't fire inappropriately. It depends on your age, your target heart rate for exercise, your maximum heart rate (usually determined by a stress test, etc. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Fran, My heart rate only runs around 40 but my pacemaker is set to keep it at 60. Thus it is pacing most of the time. The doctor told me that all the heart meds I am on makes my heart rate slower and also I have quite a bit of heart damage. I think I am really lucky to have the pacemaker because I would probably be to weak and tired to do anything with a heart rate of 40. At least now I can do a lot of things but just have to go at a much slower pace than I use to. My icd has never fired yet and I am so thankful because I hear you guys talk about how nervous you feel afterwards because another could come at any time. So I don't think about it much except that it is uncomfortable and hurts in the area. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Ruth... I'm assuming you have pacemaker separate from ICD, correct? And how long have you had ICD? I wonder about the discomfort/pain you're having at site. I'm w/you... I hear others state that after being " zapped " they have a hard time readjusting to having ICD... I think everyone I've spoken w/online in last 6 yrs has had that problem... like you, I've never been " zapped " in over 6.5 yrs so I just about never give my unit a thought except when it's time to have it interrogated or replaced. We're the very lucky ones, indeed JES in NJ, USA I think I am really lucky to have the pacemaker because I would > probably be to weak and tired to do anything with a heart rate of 40. At > least now I can do a lot of things but just have to go at a much slower pace > than I use to. My icd has never fired yet and I am so thankful because I > hear you guys talk about how nervous you feel afterwards because another > could come at any time. So I don't think about it much except that it is > uncomfortable and hurts in the area. > > Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Ruth I know how you feel. My heart rate was around 47. Monday morning I had a dual chamber pacemaker / defibrillator placed. I am being paced higher and have noticed the difference, more energy. My first two defibrillators were single chamber and this third time around is easier. After the hospital, I even went out to lunch and shopping yesterday which before it took me weeks to achieve this. With the previous defib I was shock free for 3 years and hopefully this will continue. Take care. Phyllis from Milwaukee Ruth wrote: > > Fran, > My heart rate only runs around 40 but my pacemaker is set to keep it at 60. > Thus it is pacing most of the time. The doctor told me that all the heart > meds I am on makes my heart rate slower and also I have quite a bit of heart > damage. I think I am really lucky to have the pacemaker because I would > probably be to weak and tired to do anything with a heart rate of 40. At > least now I can do a lot of things but just have to go at a much slower pace > than I use to. My icd has never fired yet and I am so thankful because I > hear you guys talk about how nervous you feel afterwards because another > could come at any time. So I don't think about it much except that it is > uncomfortable and hurts in the area. > > Ruth > > > Please visit the Zapper homepage at > http://www.ZapLife.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Hi Jes My pacemaker and icd are together in one box or whatever you want to call it. ) I had it implanted in Aug. of 99. It didn't pace this much at first but they gradually turned up the pacer to 60 which in turn gave me more energy, and also left it pacing most of the time. I'm so glad they could do that because I wasn't able to do much before. The only thing now is that my battery is dropping faster at my check ups because it is pacing most of the time. I'm glad to hear yours hasn't fired either. I feel bad when I hear some of the people on here say how they get zapped over and over. I can't imagine that. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Phyllis, I'm glad to hear you got the one you needed. You'll probably start feeling better and better now. ) I'm still learning about this stuff. When you say dual chamber, does that mean pacemaker and defib? I think I have 2 wires into my heart so it is pacing top and bottom of my heart. Let's pray we stay shock free. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Hi...I was just reading the posts and I'm glad to see that not everyone does get zapped. My doctor is recommending that I get an ICD but after seeing my daughter get zapped, I can't bring myself to do it. I'm afraid that because I tend to be a nervous person that I'll set the darn thing off all the time...and I can't see that as any way to live...that is MY personal opinion...I do realize it is a risk. I have been symptomless for many years now and I think that if I was having symptoms I would agree in a heartbeat! This group is great and you always lift my spirits and I just want to say thank you. God Bless... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Wow Phyllis... unit replaced only monday and already out shopping ... my kinda' gal LOL! ... good luck w/new unit and may you not ever need to be shocked. JES in NJ, USA > Ruth > > I know how you feel. My heart rate was around 47. Monday morning I had a dual chamber pacemaker / defibrillator placed. I am being paced higher and have noticed the difference, more energy. My first two defibrillators were single chamber and this third time around is easier. After the hospital, I even went out to lunch and shopping yesterday which before it took me weeks to achieve this. With the previous defib I was shock free for 3 years and hopefully this will continue. > > Take care. > > Phyllis from Milwaukee > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Ruth... I would imagine you're doing a number on the battery life if you're being regularly paced from ICD w/pacing capability... that is what I have also ... just the one unit... but I'm paced for brady very little and mostly during sleep... I would think they'd have implanted a reg. pacemaker along w/your ICD seeing how you require so much pacing... has anyone ever mentioned this? I know of a few persons that have both the ICD and the Pacemaker due to demand for pacing on routine basis. When you mention this discomfort at your unit site that was implanted in '99, is this merely when you bump or touch it? Mine is tender to the touch and I've been told that due to nerves that were cut during implantaion... mine's in the abdomine... but I can't say it gives me any pain otherwise. You might want to mention discomfort to EP next visit to be on safe side. JES in NJ, USA > Hi Jes > > My pacemaker and icd are together in one box or whatever you want to call > it. ) I had it implanted in Aug. of 99. It didn't pace this much > at first but they gradually turned up the pacer to 60 which in turn gave me > more energy, and also left it pacing most of the time. I'm so glad they > could do that because I wasn't able to do much before. The only thing now > is that my battery is dropping faster at my check ups because it is pacing > most of the time. I'm glad to hear yours hasn't fired either. I feel > bad when I hear some of the people on here say how they get zapped over and > over. I can't imagine that. > > Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Ruth... sounds to me as if you also have the dual chamber unit... so that both top and bottom of heart can be paced... Phyllis, am I correct in that assumption? > Phyllis, > > I'm glad to hear you got the one you needed. You'll probably start feeling > better and better now. ) I'm still learning about this stuff. When > you say dual chamber, does that mean pacemaker and defib? I think I have > 2 wires into my heart so it is pacing top and bottom of my heart. Let's > pray we stay shock free. > > Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Yes, the top and bottom of the heart can be paced. Phyllis Naojeca@... wrote: > > > Ruth... sounds to me as if you also have the dual chamber unit... so > that both top and bottom of heart can be paced... Phyllis, am I > correct in that assumption? > > > > Phyllis, > > > > I'm glad to hear you got the one you needed. You'll probably > start feeling > > better and better now. ) I'm still learning about this > stuff. When > > you say dual chamber, does that mean pacemaker and defib? I > think I have > > 2 wires into my heart so it is pacing top and bottom of my > heart. Let's > > pray we stay shock free. > > > > Ruth in PA > > > > Please visit the Zapper homepage at > http://www.ZapLife.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Hi Ruth and Jes, I just had my unit replaced in Feb and I had a lot of different sensations this time than the last. For one, I was receiving shocks from nerve endings that had been cut. It scared me so much. I jumped in the shower and it felt like a thousand little bugs were crawling all over my body when the water hit - I jumped out and took a sponge bath! These were not shocks from the device, just sensations from the nerve endings that were cut and swollen and then applying pressure to the nerve. It also took time for the unit to " drop " back into the old pocket. Mine was sore and is still sore to some degree - it's been about 10 weeks, but it is not infected or anything like that. It does itch some too, and it feels like it is bumping up against my collar bone. I did mention it to the EP and he said it looked fine. It is sticking out more this time too! Ha! But let's face it, when I consider the alternative, I am so thankful to have it! M in PA At 06:31 PM 05/10/2001 +0000, you wrote: >Ruth... I would imagine you're doing a number on the battery life if >you're being regularly paced from ICD w/pacing capability... that is >what I have also ... just the one unit... but I'm paced for brady >very little and mostly during sleep... I would think they'd have >implanted a reg. pacemaker along w/your ICD seeing how you require so >much pacing... has anyone ever mentioned this? I know of a few >persons that have both the ICD and the Pacemaker due to demand for >pacing on routine basis. > >When you mention this discomfort at your unit site that was implanted >in '99, is this merely when you bump or touch it? Mine is tender to >the touch and I've been told that due to nerves that were cut during >implantaion... mine's in the abdomine... but I can't say it gives me >any pain otherwise. You might want to mention discomfort to EP next >visit to be on safe side. > >JES in NJ, USA > > > > Hi Jes > > > > My pacemaker and icd are together in one box or whatever you want >to call > > it. ) I had it implanted in Aug. of 99. It didn't pace >this much > > at first but they gradually turned up the pacer to 60 which in turn >gave me > > more energy, and also left it pacing most of the time. I'm so >glad they > > could do that because I wasn't able to do much before. The only >thing now > > is that my battery is dropping faster at my check ups because it is >pacing > > most of the time. I'm glad to hear yours hasn't fired >either. I feel > > bad when I hear some of the people on here say how they get zapped >over and > > over. I can't imagine that. > > > > Ruth > > > >Please visit the Zapper homepage at >http://www.ZapLife.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 ... the new units are so darn smart it's almost a shame... they can detect true V-tach from fast h/r coming from exercise and other sources... I doubt if you'd be inappropriately " zapped " should you decide to have unit implanted. JES in NJ, USA BTW... HAPPY MOTHER'S DAY to all the mothers on the board... I hope you have a very special Sunday > Hi...I was just reading the posts and I'm glad to see that not everyone does > get zapped. My doctor is recommending that I get an ICD but after seeing my > daughter get zapped, I can't bring myself to do it. I'm afraid that because I > tend to be a nervous person that I'll set the darn thing off all the > time...and I can't see that as any way to live...that is MY personal > opinion...I do realize it is a risk. I have been symptomless for many years > now and I think that if I was having symptoms I would agree in a heartbeat! > This group is great and you always lift my spirits and I just want to say > thank you. God Bless... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 I don't have a separate pacemaker. Mine is a dual pacemaker/defibrillator. And they first turned it up from 40 beats a minute to 50 and then next time to 60 so I don't think they realized at first how much it was going to have to pace. And yes it is using battery up faster since it has been pacing faster and thus is pacing most of the time. I think the reason my heart is so slow is because of all the meds I'm on to help it pump better and the cardiologist wants it at 60 because he can't afford to take me off the meds if it gets too low. But I'm just glad they've been able to work it all out. I think that now I'll have to have a new one implanted sooner than they had originally told me. I guess whatever it takes to keep us all going here. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 , They tell me the reason mine hurts is because of nerve damage also. It aches most of the time in my chest area but I have also had open heart surgery so I'm not sure where most of the pain is from. Also when they took the arteries out of my leg, they did a lot of nerve damage there also because my leg is kinda numb and they said that is why. If I do anything with my arms like wash the car or wash windows, it aches more or in rainy weather. But I can put up with that considering how I hear the rest of you talk about being zapped. I haven't been zapped yet and I feel so lucky after listening to you guys. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 Unsubscribe >>> sishirsch@... 05/23/01 08:27PM >>> , They tell me the reason mine hurts is because of nerve damage also. It aches most of the time in my chest area but I have also had open heart surgery so I'm not sure where most of the pain is from. Also when they took the arteries out of my leg, they did a lot of nerve damage there also because my leg is kinda numb and they said that is why. If I do anything with my arms like wash the car or wash windows, it aches more or in rainy weather. But I can put up with that considering how I hear the rest of you talk about being zapped. I haven't been zapped yet and I feel so lucky after listening to you guys. Ruth in PA Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
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