introducing myself

[Guest guest]

Hey Kylie,

Its good to have you here! I read your comment about the Rogam shot

and no one telling you whether mercury was in it. I had to deal with

that too. My blood is A- so my obgyn tried very hard to get me to take

this shot. She didn't seem to know anything about rogam either and

once i brought up how i knew there was mercury in it they started

throwing big fits about me taking it. I had just started learning

about how bad vaccs are , so i almost caved in a couple times.

Luckily I stood my ground and said no, and you know what they did?

Refused to treat me any longer. The nurse was very rude over the phone

saying i was making a horrible decision and my doctor would no longer

see me because of it! I was so hurt(mostly because of the pregnancy

hormones) but also so angry that someone would make me feel like i was

intentionally hurting my own baby.

In the end I found a very nice doctor who laid out the information

for me and showed me the ingredients on her rhogam shot, where it said

it did not contain thimerosal. I was also given the option to take the

shot after the birth of my daughter so at least she wouldn't be hurt

by it. Thank God though she was born with the same rare blood type A-!!

>

> Hi All,

> My name is Kylie, and I am a mother to a healthy unvaccinated 14

month old boy who is

> still breastfeeding. I live in the New york City area.

> I joined this group because I am starting to get a lot of pressure

to " protect " Raffi from

> diseases by vaccinating him. My pediatrician had initially been

pretty okay with our not

> vaccinating, primarily because I used the word " defer " when we

initially came to see her.

> Now that he is over 1 she seems to think it is time to start, and

has been scaring me with

> Hib meningitis and other dread diseases. Even though I have read

that breastfed babies

> rarely get this.

> I am really happy to have found this group, and am avidly reading

all the info available. I

> especially like that there are so many MD's weighing in on the side

of not vaccinating. I

> think that there just is no information given about the dangers in

med school. My OBGYN

> didn't even know about Thimerosol in vaccinations, when i asked her

about whether it was

> in RoGam when i was pregnant. (Never did get an answer by the way...)

> My own experience is that every single friend of mine with

vaccinated kids of the same

> age has been to the emergency room by now, for either an unexplained

fever, ear

> infection, etc. My son has had the usual colds, stomach bugs etc,

but always recovers

> pretty quick, and has never been to the ER. He's never had an ear

infection.

>

> I would welcome advice on how to deal with the school issue; I know

that is just around

> the corner for us, and NY state does not have a philosophical

opt-out, only religious.

>

[Guest guest]

Good thing he never got the MMR. Your story makes me just want to cry.

Winnie

Re: Introducing myself

Vaccinations

> Welcome all - so glad you are here.

> I am the mother of a vaccine injured child. I stopped

> vaccinating my

> son at 6 mos. Thankfully (what the h*** am i saying) he was

> falling

> off the growth charts and missed milestones following the 4th

> month

> DTap - and whatever else was shot into him that day. Before this

> apt.

> we was starting to hold his bottle (i was breastfeeding and

> pumping)

> but after he was simply a lump of cutness. He had a huge

> reaction -

> the same one I've read over and over again.. the beginning of

> the

> end. The nurse said to give him Tylenol (STUPIDITY) and that it

> was

> normal to have dilated eyes, unconsolable screaming, arched

> back,

> high fever. FYI. the unconsolable screaming was the pain from

> his

> BRAIN SWELLING! I did not take him to the ER, which I knew

> would

> have only made matters worse.

>

> Because my boy did not progress into full blown autism - he's

> not

> counted so any idiot who makes the claim that Autism is over

> diagnosed is just another idiot. I listned to the mainstream,

> which

> was basically a big question mark, sorry about your luck, and a

> scripts to " therapy " . So I did that... but I'm no young chick -

> and

> my bs radar was going off constantly. One day, when he was a

> physical MESS, barely had 50 single unintellible words at 3.5 I

> got

> my self into gear. I cut out all " therapy " as they are largely

> working out of a 1950's playbook. Waste of time, waste of money

> and

> so insulting.

>

> I found myself a rescue angel (www.generationrescue.org) and the

> healing and education began. My son is now 5.5 - nearly

> recovered

> after thousands of dollars, quit my job to committ to educating

> myself. We have done 80 hyperbaric oxygen dives - and about to

> start

> 40 more. This requires us to leave our home for a month - the

> cost

> to all out of pocket. But, no therapy can come close to

> repairing

> the brain damage. I want my kids IQ back - and hyperbaric

> oxygen can

> do it.

>

> So that's a abbreviated war story... so glad you Mom's are

> listening

> to your instincts.

>

> Also, I just had another boy - he's 6 weeks old. I wouldn't

> allow

> vit K, or the eye stuff and certainly no vaccines. I went

> prepared

> with my own waivers and documents... and I didn't need any of

> it.

> The staff just let me do what I wanted w/o any hassle.

>

> My Ped. is a young guy, and from my observation he's got a clue

> but

> no where near where he should be. They still hand out tylenol

> as if

> it's going out of style, and when i mentioned the link to

> families

> with autoimmune issues he was clueless. The AMA is making huge

> efforts to keep our Peds " in line " . The Ped and I have what I

> call a

> non verbal " understanding " . I call myself a granola cruncher,

> he

> laughs, and there is NO mention of vaccinating either of my sons

> ever

> again.

>

> My best advise in regard to dealing with the public is to be

> polite,

> non confrontational and smile as you hand them your exemption.

> YOU

> MUST know your rights, refuse to engage with anyone your reasons

> for

> opting out. Do what you can in your state to maintain your

> rights to

> choose. Get involved!

>

>

> Mother of a Vaccine Injured / Recovering Boy 5.5 years old

>

>

> >

> > Hi All,

> > My name is Kylie, and I am a mother to a healthy unvaccinated

> 14

> month old boy who is

> > still breastfeeding. I live in the New york City area.

> > I joined this group because I am starting to get a lot of

> pressure

> to " protect " Raffi from

> > diseases by vaccinating him. My pediatrician had initially

> been

> pretty okay with our not

> > vaccinating, primarily because I used the word " defer " when we

> initially came to see her.

> > Now that he is over 1 she seems to think it is time to start,

> and

> has been scaring me with

> > Hib meningitis and other dread diseases. Even though I have

> read

> that breastfed babies

> > rarely get this.

> > I am really happy to have found this group, and am avidly

> reading

> all the info available. I

> > especially like that there are so many MD's weighing in on the

> side

> of not vaccinating. I

> > think that there just is no information given about the

> dangers in

> med school. My OBGYN

> > didn't even know about Thimerosol in vaccinations, when i

> asked her

> about whether it was

> > in RoGam when i was pregnant. (Never did get an answer by the

> way...)

> > My own experience is that every single friend of mine with

> vaccinated kids of the same

> > age has been to the emergency room by now, for either an

> unexplained fever, ear

> > infection, etc. My son has had the usual colds, stomach bugs

> etc,

> but always recovers

> > pretty quick, and has never been to the ER. He's never had an

> ear

> infection.

> >

> > I would welcome advice on how to deal with the school issue; I

> know

> that is just around

> > the corner for us, and NY state does not have a philosophical

> opt-

> out, only religious.

> >

>

>

>

[Guest guest]

Hi, Kylie. Welcome! I thought the Hib meningitis issue was for those UNDER a

year. I could be wrong--it's been a while.

As for being in NY, my suggestion is to move north a few minutes--come on up to

CT where the schools accept the exemptions without question, at least that's my

experience. We don't have philosophical either but religious works for me.

Winnie

Introducing myself

Vaccinations

> Hi All,

> My name is Kylie, and I am a mother to a healthy unvaccinated 14

> month old boy who is

> still breastfeeding. I live in the New york City area.

> I joined this group because I am starting to get a lot of

> pressure to " protect " Raffi from

> diseases by vaccinating him. My pediatrician had initially been

> pretty okay with our not

> vaccinating, primarily because I used the word " defer " when we

> initially came to see her.

> Now that he is over 1 she seems to think it is time to start,

> and has been scaring me with

> Hib meningitis and other dread diseases. Even though I have read

> that breastfed babies

> rarely get this.

> I am really happy to have found this group, and am avidly

> reading all the info available. I

> especially like that there are so many MD's weighing in on the

> side of not vaccinating. I

> think that there just is no information given about the dangers

> in med school. My OBGYN

> didn't even know about Thimerosol in vaccinations, when i asked

> her about whether it was

> in RoGam when i was pregnant. (Never did get an answer by the way...)

> My own experience is that every single friend of mine with

> vaccinated kids of the same

> age has been to the emergency room by now, for either an

> unexplained fever, ear

> infection, etc. My son has had the usual colds, stomach bugs

> etc, but always recovers

> pretty quick, and has never been to the ER. He's never had an

> ear infection.

>

> I would welcome advice on how to deal with the school issue; I

> know that is just around

> the corner for us, and NY state does not have a philosophical

> opt-out, only religious.

>

>

[Guest guest]

Ruthie,

Welcome to the Group.

There are wonderful people in this group that are very caring.

Listing some of my diseases hoping to find someone with any

of my diseases. Below is a partial list.

Jo Lynne

5/15/95 Liver Transplant due to an auto-immune

disease PBC - Auto-Immune Hepatitis - Sjögren's - Fuzzy Brain

Osteoporosis - Edema and ascites - Peripheral Neuropathy - Entire body

Connective Tissue Disease - Nuisance Heart Beat - High Blood

Pressure not High Blood Pressure Disease it is because of PAIN

Gastro Paresis

introducing myself

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening..........Ruthie

[Guest guest]

Ruthie,

Welcome to the Group.

There are wonderful people in this group that are very caring.

Listing some of my diseases hoping to find someone with any

of my diseases. Below is a partial list.

Jo Lynne

5/15/95 Liver Transplant due to an auto-immune

disease PBC - Auto-Immune Hepatitis - Sjögren's - Fuzzy Brain

Osteoporosis - Edema and ascites - Peripheral Neuropathy - Entire body

Connective Tissue Disease - Nuisance Heart Beat - High Blood

Pressure not High Blood Pressure Disease it is because of PAIN

Gastro Paresis

introducing myself

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening..........Ruthie

[Guest guest]

Hi, Ruthie my name is LMay and I live in Kansas. It is nice to meet you. I was diagnosed with parkinsons in 1999 on my birthday what a present. My brother had brought my mother to see me and I cryed on her shoulder at that time she told me she was so sorry that I was the one to get it. Parkinsons starts in your younger years but most doctors just say that you are clumsy. I was told that I time after time. So it was a relief when I had a name. Mine is the slow kind. My doctors told me that I need to eat more high engery foods because parkinsons people use as much energy as a runner or a football player. Ensure is real good to drink and at your stage you need all the energy that you can get. I take Lamitcal for my shakes and jerks it has worked better than anything else. LYL

LMay

From: Jo Lynne <jolynne4@...>Subject: Re: introducing myself Date: Sunday, October 19, 2008, 10:05 PM

Ruthie,

Welcome to the Group.

There are wonderful people in this group that are very caring.

Listing some of my diseases hoping to find someone with any

of my diseases. Below is a partial list.

Jo Lynne

5/15/95 Liver Transplant due to an auto-immune

disease PBC - Auto-Immune Hepatitis - Sjögren's - Fuzzy Brain

Osteoporosis - Edema and ascites - Peripheral Neuropathy - Entire body

Connective Tissue Disease - Nuisance Heart Beat - High Blood

Pressure not High Blood Pressure Disease it is because of PAIN

Gastro Paresis

introducing myself

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to

me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening... .......Ruthie__________________________________________________

[Guest guest]

WELCOME TO THE GROUP;;RUTHIE;; IM SURE YOU WILL FIND A LOT OF ANSWERS & HELP HERE;IT IS A NEAT & CARING FOR EACH OTHER GROUP OF FOLKS

HUGS

DORT FROM MICH

From: cinnaberry1 <country05@...>Subject: introducing myself Date: Sunday, October 19, 2008, 6:39 PM

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to

me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening... .......Ruthie

[Guest guest]

WELCOME TO THE GROUP;;RUTHIE;; IM SURE YOU WILL FIND A LOT OF ANSWERS & HELP HERE;IT IS A NEAT & CARING FOR EACH OTHER GROUP OF FOLKS

HUGS

DORT FROM MICH

From: cinnaberry1 <country05@...>Subject: introducing myself Date: Sunday, October 19, 2008, 6:39 PM

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to

me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening... .......Ruthie

[Guest guest]

WELCOME TO THE GROUP;;RUTHIE;; IM SURE YOU WILL FIND A LOT OF ANSWERS & HELP HERE;IT IS A NEAT & CARING FOR EACH OTHER GROUP OF FOLKS

HUGS

DORT FROM MICH

From: cinnaberry1 <country05@...>Subject: introducing myself Date: Sunday, October 19, 2008, 6:39 PM

Hi, my name is Ruthie and I live in Delaware and I was just told I have Parkinson's disease about a month ago. I was put on meds for it and the involuntary jerking has stopped but I still shake. Is this normal? I walk stooped over and am so slow walking that my husband does the grocery shopping for us now, as it takes me 3 hours to do it with him. I have given up on driving as my senses are slow. About 6 weeks ago I was put on Lithium for my depression from my psychiarist and I went down hill fast. As soon as my nerologist heard this he said it was drug induced PD, but I have had these symtoms since Jan 2006 and I cannot get this through to my nerologist. After being on the PD medicine for 3 weeks I decided to do an experiment and go off of the PD drug for 3 days and my tremors and shakes came back bad. I have another appointment to see the neurologist on wednesday, how do I get him to listen to

me? I am not an advocate for myself but am for others. I am so physically tired that I shuffle around the house just barely getting things done and thank goodness for TV dinners, as cooking is so hard for me. I sleep for 12 hours and I feel like I need to go back to bed as soon as I get up. Is anyone having problems with their motor skills? Any input would be so appreciated. Thank you for listening... .......Ruthie

[Guest guest]

:

Not everyone gets shocked with an ICD. I have had mine for three years and no shocks. I'm grateful to know it's there, and it has improved my life quality immensely. Good luck with making your decision, but count my vote as one for the implantation of the ICD.

If you think you're too small to make a difference, you've never gone to bed with a mosquito.

From: Yardbird <yardbird@...>Subject: Introducing myself Date: Monday, January 5, 2009, 2:26 PM

Dear 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 statistical danger 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 mistaken firing, 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 an anxiety-filled and depressing way tolive, 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 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 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 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 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,

[Guest guest]

Dear ;

First of all i would like to apologize to you because you were in a trial membership until your posts were approved and your membership status is changed by an admin which I am one. Unfortunately i was very busy these last few days and i couldn't approve your message right away so you probably didn't receive a lot of messages either. I am not sure how it works but it is fixed now.

As far as ICD's are concern as a person that got shocked 49 times in a 3 month period then no shocks since may of 2001, (knock wood), I can easily say, it definitely beats the alternate and I am thankful to my doctors and especially to this group because they are the reason why I am still alive today. I am a very young at heart, 48 year old man. I have a handsome 25 year old son and beautiful twin daughters at the age of 13. To think that i could never hug my grandson that i might have one day from my son or walk both my daughters down the aisle in their wedding days and hug my granchildren from them , I would rather get shocked everyday than miss it. So would highly recommend you get your ICD. There are things that the eps specialists and the cardiologists do, like adjusting the settings of your icd, adding more meds or things like that, so that getting shocked is minimized. I would highly recommend it so that a gentleman like

you will keep posting in our group and sharing his life experiences with us for decades to come.

Kind regards,

TURK

From: Yardbird <yardbird@...>Subject: Introducing myself 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 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 statistical danger 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 mistaken firing, 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 an anxiety-filled and depressing way tolive, 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 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 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 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 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,

[Guest guest]

Hi ;

I received my first ICD at age 41 - nearly 10 years ago -- I am on my

third unit. I have NEVER been shocked. But it did charge once and has

paced be out of VT numerous times. I would definitely recommend an ICD

if your Doctors are telling you that you need one and it will save your

life. I found I went through denial of needing one, but once my units

charged and the unit was able to pace me out of dangerous VT, I was a

believer. Thank God I have never been shocked, but if I am I know it

was there to save my life - if I was not shocked, I would not be here to

tell you about it.

It has improved the way I feel physically - well that and the drugs.

The drugs can be really hard to get use to as they really zap your

energy and stamina, but once everything is settled things are good. I

look at the ICD as being my " guardian angel " it watches over my heart so

I don't have to. The ICD is there to help you LIVE a better and normal

life. I still do everything I did before, I even travel the World - my

ICD does not keep me home -- in fact I rode roller coasters at

Disneyland all last week!

Hope this helps,

~guin

Underwood wrote:

>

> :

>

> Not everyone gets shocked with an ICD. I have had mine for three

> years and no shocks. I'm grateful to know it's there, and it has

> improved my life quality immensely. Good luck with making your

> decision, but count my vote as one for the implantation of the ICD.

>

>

>

> */If you think you're too small to make a difference, you've never

> gone to bed with a mosquito./*

>

>

>

>

>

> From: Yardbird <yardbird@...>

> Subject: Introducing myself

>

> Date: Monday, January 5, 2009, 2:26 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,

>

>

>

>

[Guest guest]

,

My husband had his ICD implanted last July. It was four months since he had been diagnosed with cardiomyopathy and CHF. He had an EF of 10 in March. His cardiologist recommended the ICD or a transplant if he didn't tolerate the drugs well. I couldn't wait for him to get the ICD. He is 58, we have a 14 year old at home, he has three adult children and a beautiful 3 year old granddughter. I barely slept until it was implanted, because I kept checking to make sure that he was breathing. He was terrified about getting it. In fact he fainted at the EP's office when he was describing the procedure. He hasn't fainted since then. He hasn't been shocked, but he is paced about 90% of the time. His ejection fraction has gone up to 25 and his heart has shrunk about a centimeter. We are still hopeful that it will recover some more. His brother has had an ICD for about 13 years.

They both were hit with a virus, so there is probably something genetic, but they haven't done any testing. I know that he is very glad to have the ICD. It is a conversation maker. He was sitting in the whirlpool in Florida this summer and another guy came up to him and said "mine's bigger than yours". He was flabbergasted until he realized that the guy meant his own ICD. Mark was the first person that he had seen that didn't wear a shirt all of the time. The next day, Ed had taken his shirt off too! I am very prould of him because he has busted his rear to stay with us as long as possible. Obviously, I am all for the ICD, but it's easy for me to say since it is not my body. Mark is really glad that he has it now.

Bonnie

From: Yardbird <yardbird@...>Subject: Introducing myself Date: Monday, January 5, 2009, 2:26 PM

Dear 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 statistical danger 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 mistaken firing, 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 an anxiety-filled and depressing way tolive, 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 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 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 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 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,

[Guest guest]

< hi my name is i have had my ICD for over 5 years now and am doing very well with it, have only been Zapped once and that was this past July went to the hospital for a check up and everything was fine. This units are life savers i would highly recommend you get yours if your EP has told you to. Mine is a Saint Jude Medical Device. No problems or recalls on it. Best Wishes Sincerely,

From: Underwood <maewestunderwood@...> Sent: Thursday, January 8, 2009 10:40:39 AMSubject: Re: Introducing myself

:

Not everyone gets shocked with an ICD. I have had mine for three years and no shocks. I'm grateful to know it's there, and it has improved my life quality immensely. Good luck with making your decision, but count my vote as one for the implantation of the ICD.

If you think you're too small to make a difference, you've never gone to bed with a mosquito.

From: Yardbird <yardbird@dslextreme .com>Subject: Introducing myself@groups .comDate: Monday, January 5, 2009, 2:26 PM

Dear 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 statistical danger 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 mistaken firing, 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 an anxiety-filled and depressing way tolive, 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 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 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 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 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,

[Guest guest]

,

I have had my ICD since 2005. No shocks. New plumbing cardiologist seemed

to wonder if I needed the IICD until I had an episode of VT during a stress

test.

I was 63 at the time and I remember being put through a lot of tests to

prove that I needed the ICD. I had VT after a stent and a pacemaker.

At the time I was told that Medicare had strict guidelines as to who was

eligible to get an ICD and that most insurance companies used these same

guidelines. It was like the doctors thought I needed the ICD but didn't

want to get into trouble with the " government " .

I can remember the EP doctor saying to me after the study that he was able

to induce sustained VT and I was getting an ICD. I asked what would happen

to the pacemaker and he said I could have it if I wanted. When I woke up in

recovery, my son had my pacemaker in a plastic bag. Anyone want a used

pacemaker?

At the three month checkup the ICD reports hundreds of short episodes of VT

and a few extended episodes of VT which my heart would get out of on it's

own.

Last year they changed the ICD so that it would intervene sooner rather than

just record the event.

You can gather information from many sources but there will come a time when

you have to trust the doctor(s).

I can remember the EP doc asking me if I wanted an ICD and I said something

like, " if I need one, I don't want to die in front of the grandkids while

playing with them in the backyard.

Prayers,

Joe Schmidt

God Loves Us All

But isn't always happy with us!

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,

------------------------------------

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1 - Email list forum at

/

2 - Email delivery of the Zapper Newsletter at

2/

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3/

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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/

[Guest guest]

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..

[Guest guest]

Dear Turk,

Thanks for the extra warm welcome. I was really confused about not getting

messages or even a reply from a mod whom I emailed twice. But if it's fixed,

and I'm not able to participate, I'm just happy and grateful. Being on such

an active list as this beats the heck out of feeling alone with suddenly

having either congestive heart failure or dilated cardiomyopathy and then

being told by my cardiologist and the EP he referred me to that an ICD ought

to be in my near future. I've really been anxious about the whole thing and

felt I learned all I could from reliable medical information Web sites. Now

I just wanted to hear other peoples' experiences and be able to ask them

questions.

No family or grandchildren to worry about leaving in my case, but there are

friends I love and things I'd still like to accomplish before I die. So

thanks again for the welcome.

Introducing myself

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,

[Guest guest]

Dear Guin,

Thanks for your warm welcome. As a newcomer, I need to ask a few questions.

First of all, what do you mean about having felt better about your ICD once

it was " charging? " What does that mean, and how do you feel it?

Second, you writ " paced be out of VT numerous times " what do you mean? It

" paced you out of VT? " What is VT? And how did you know it did whatever this

is? Was it something you felt happen, physically?

third, what drugs are you talking about? For example, since I was kept at

the hospital when I came into the ER feeling as if I were suffocating

because of fluid in my lungs, and they diagnosed heart problems, I've been

on several drugs that are particularly directed at this sort of heart

problem. I'll list them. The baby aspirin is common for anyone who might

face a heart attack, which isn't really the issue here, and the staten

Lipitor was ongoing to lower a cholesterol level that was higher than it

should have been even though my life stile and diet are pretty healthy. I'll

paste in the list. Are these the " drugs " you mean? I haven't felt anything

from them, one way or the other, except I haven't suffered a repetition of

the emergency that brought me into the hospital, so I assume they're helping

my heart function.

Lipitor 20 Mg. 1 daily

spironolactone 25 Mg. 1 daily

furosemide (lasix) 40 Mg. 1 daily

lisinopril 5 Mg. 1 daily

carvedilol 12 Mg. 2 daily

Baby aspirin 1 daily

there are the medications and dosages I'm taking. As I say, none ar

bothersome. Are you actually referring to that one drug that's been

discussed on the list, the one imported at first from Europe that is

supposed to help prevent the heart from incurring unnecessary shocks, and

which everyone says is a pretty big hassle? Amiadarone?Thanks.

Introducing myself

>

> Date: Monday, January 5, 2009, 2:26 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,

>

>

>

>

------------------------------------

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[Guest guest]

Bonnie,

thanks for the spirited, terrific reply. I know you understand, even though,

as you humbly admit, it's not *your* body. I want to add one thing here. And

that is that these drugs, by which I'm guessing you really mean mostly the

amiodarone, don't you? From the messages I've seen, that seems to be the

most troublesome thing about this whole deal, unless you're mistakenly

shocked every hour or so.

I was talking to my regular doctor today, and he says his father-in-law had

an ICD implanted a year or so ago by this same EP he referred me to, and 1.

he is not on amiodarone and 2. he hasn't been shocked. So maybe there's a

chance this won't be so horrible.

By the way, my ejection fraction when I entered the hospital was only 20 per

cent, but it's gone into the low 30s since I've been on the four pertinent

drugs I listed in an earlier reply. So maybe there's still room for

improvement and shrinkage, as you say (from the dilated state) and maybe I

won't need that drug or get shocked? Maybe I'm just dreaming, but I'm trying

to think of better scenarios with an ICD than the bad ones I've heard about

constant shocking and bad drug " side effects. " I looked up the history. Boy,

that's a renegade drug if ever there was one. Although I'm sure it's been

helpful.

Introducing myself

Date: Monday, January 5, 2009, 2:26 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,

[Guest guest]

> 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!

[Guest guest]

Hi there Yardbird, my husband is the one with the the ICD in our family..... he went to the clinic with what he thought was a pulled muscle... turned out to be VT.... his heart was racing at 240 beats per min... and after the 20 min it took to get him picked up and to the hospital, showed no signs of slowing down, so they used the external defib (paddles) to shock him back to normal rhythm. Then after more test, implanted the ICD... his problem is all electrical.... his heart just runs off for no reason. Taking Soltolol keeps it under control.... the one time he got shocked was when he had stopped taking his meds for a month... now he is very good about taking his meds...lol. So yes he needs the meds, and needs the ICD as backup insurance... Because VT can kill you. He was lucky, he had been having these pains for years, but no one ever caught it, and he thought it was indigestion, and hitting himself hard in the chest made it stop... he was knocking his heart into rhythm, and didn't realize it.

Debbie, Tom's wife in Oklahoma

-----Original Message-----From: [mailto: ]On Behalf Of YardbirdSent: Thursday, January 08, 2009 22:11 Subject: Re: Introducing myself

Bonnie,thanks for the spirited, terrific reply. I know you understand, even though, as you humbly admit, it's not *your* body. I want to add one thing here. And that is that these drugs, by which I'm guessing you really mean mostly the amiodarone, don't you? From the messages I've seen, that seems to be the most troublesome thing about this whole deal, unless you're mistakenly shocked every hour or so.I was talking to my regular doctor today, and he says his father-in-law had an ICD implanted a year or so ago by this same EP he referred me to, and 1. he is not on amiodarone and 2. he hasn't been shocked. So maybe there's a chance this won't be so horrible.By the way, my ejection fraction when I entered the hospital was only 20 per cent, but it's gone into the low 30s since I've been on the four pertinent drugs I listed in an earlier reply. So maybe there's still room for improvement and shrinkage, as you say (from the dilated state) and maybe I won't need that drug or get shocked? Maybe I'm just dreaming, but I'm trying to think of better scenarios with an ICD than the bad ones I've heard about constant shocking and bad drug "side effects." I looked up the history. Boy, that's a renegade drug if ever there was one. Although I'm sure it's been helpful. Introducing myself Date: Monday, January 5, 2009, 2:26 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,

[Guest guest]

,

Thanks! Maybe I'll have luck like yours? In any case, I'm getting less

scared, thanks to this list. Whew. I'm glad the messages started appearing

in my inbox, finally. Bad couple of days, there.

Introducing myself

Date: Monday, January 5, 2009, 2:26 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,

[Guest guest]

Hi ,

thanks a lot for the testimonial. I'm becoming less and less uncomfortable

about this. I'm not going to hesitate for years, don't worry! I just needed

to " process " the situation and that involved, among other things, the exact

kind of discussion and company II can immediately see that this mailing list

provides.

Thanks again,

Introducing myself

@groups .com

Date: Monday, January 5, 2009, 2:26 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,

[Guest guest]

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/

[Guest guest]

Hi Debbie,

thanks for your story. I'm really glad Tom's getting along as well as he is!

Although I'll bet that first visit to the ER and everything was all pretty

scary. I haven't had any such instances, ever, that I'm aware of, and so my

condition's more like a lot of the other folks who've been posting. But wow,

what a scary problem to have had without knowing it, and how lucky he is to

have survived and had it finally addressed as it needed to be!

thanks,

Introducing myself

Date: Monday, January 5, 2009, 2:26 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,