Re: Pacemaker usage of ICD

[Guest guest]

In a message dated 9/22/00 8:53:05 AM Eastern Daylight Time,

JSparky422@... writes:

<< I have my ICD set at 40 (the low-end) and 200 (the high-end), because in

the

past, my pulse has gone down to 20 and as high as 220. Anyone have anything

simular happening?

>>

my pacer is set at 60 low end and 120 high end as I've gone into afib alot

with rates of 392. But i have no icd at this time.

[Guest guest]

I am not sure how often my pacer has ran. My icd is set at 158 on the high

end and low end of 30. My heart rates runs around 60 when all is well with

medication but when it decides to go crazy it runs anywhere from 28 to 230.

It goes high then drops and then goes low and goes high. I have wonderful

dizzy spells. I twas decided after much tsting to keep me at 158 to try an

avoid so many black outs and to try and catch my episodes be fore several

shocks were required to correct the problem.

I am on betapace 12o mgs three times per day and preivial which has just be

increased to 40 mg per day s my bllod prssure has been playing games on me.

I also take 6 other meds for other problems, plus my inhalers for my lungs.

Does anyone else take this much medicine.

Zappy in Ohio

Sharon

[Guest guest]

My settings are the exact same. 40 low, 200 high. I used to go into the

30's at night.

Re: Pacemaker usage of ICD

>

>In a message dated 9/22/00 8:53:05 AM Eastern Daylight Time,

>JSparky422@... writes:

>

><< I have my ICD set at 40 (the low-end) and 200 (the high-end), because in

>the

> past, my pulse has gone down to 20 and as high as 220. Anyone have

anything

> simular happening?

> >>

>my pacer is set at 60 low end and 120 high end as I've gone into afib alot

>with rates of 392. But i have no icd at this time.

>

>

>

>Please visit the Zapper homepage at

>http://www.ZapLife.org

>

>

[Guest guest]

Hi ,

I think my pacer is working a lot of the time. At first interog. it showed

it had paced me down 33 times in three mos. My cardiologist who also sees

me after the tech gets through says maybe mine shouldn't be set for pacing

@153 and shock at 170. My pulse gets up to 150 easy just from excerise.

I,m paced at the low end at 30bpm. That probably won't happen unless I have

another MI. I understand from reading BBS that you can find how much bat.

you have left at each interog. I go in next mo again and will ask about

mine.

Yes, I find it hard to believe anyone would let those spams keep them from

this wonderful caring group!!

Debbie

>From: JSparky422@...

>Reply-egroups

>egroups

>Subject: Pacemaker usage of ICD

>Date: Fri, 22 Sep 2000 08:48:37 EDT

>

>Has anyone else out there had their pacemaker used a lot? I was told that

>the " Pacing " that is done uses more battery than the actual difib. firing

>off

>over time. I'm having my ICD checked today because the pacemaker is being

>used more than normal and I have pain only in my left side. I'm hoping

>it's

>just medication-related but the pain has me a little more concerned.

>

>I have my ICD set at 40 (the low-end) and 200 (the high-end), because in

>the

>past, my pulse has gone down to 20 and as high as 220. Anyone have

>anything

>simular happening?

>

>Thanks. P>S> Ignore those spam idiots!

>

>

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[Guest guest]

Any reason you do not an icd now

[Guest guest]

I take loads of med. I take Beta Pace 2x a day 240 mgs each. I find that

after I take it however I am zonked and just want to sit or sleep. I take

240 before I go to sleep or about an hour before and I do not care if I am

tired. You gave me an idea perhaps I will mention to my MD that perhaps I

could take it three times a day instead you have been very helpful. I also

take coumodin, lasik. lanoxin, cozaar. Is that enough?

[Guest guest]

yes my pacemaker has did the same thang it's has paced alot more then

shocking but thats okay i would rether it pace i've been shocked over 80

time and been pace in to two over 3,969 times ( for slow heart rate ) mine

was set at 40 but they more it up to 60 because my heart rate was runing

around 45 all the time so they did not like it but let me know what the doc

says about it

stacie,17

Pacemaker usage of ICD

>

> Has anyone else out there had their pacemaker used a lot? I was told

that

> the " Pacing " that is done uses more battery than the actual difib. firing

off

> over time. I'm having my ICD checked today because the pacemaker is being

> used more than normal and I have pain only in my left side. I'm hoping

it's

> just medication-related but the pain has me a little more concerned.

>

> I have my ICD set at 40 (the low-end) and 200 (the high-end), because in

the

> past, my pulse has gone down to 20 and as high as 220. Anyone have

anything

> simular happening?

>

> Thanks. P>S> Ignore those spam idiots!

>

>

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

I just want to say that I know Stacie and have been writing to her for some

time now. She has alot of problems. More than myself, yet she is rave,

supportive and just a wonderful young friend that I am PROUD to know. She

handles her problems with grace and style. We older folks could learn a

lesson or two.

STACIE - YOU KNOW I LOVE YOU GIRL!!!!!!!!! And I want everyone to know just

how special you are.

Love, God Bless,

Sue

[Guest guest]

i take 6 meds for my heart my rthmy and 30 for other heart problom i take 3

lung pills and two in hayler i take alot of other meds to 3-6 times a day

which dont really help

stacie,17

Re: Pacemaker usage of ICD

>

> I am not sure how often my pacer has ran. My icd is set at 158 on the

high

> end and low end of 30. My heart rates runs around 60 when all is well

with

> medication but when it decides to go crazy it runs anywhere from 28 to

230.

> It goes high then drops and then goes low and goes high. I have wonderful

> dizzy spells. I twas decided after much tsting to keep me at 158 to try

an

> avoid so many black outs and to try and catch my episodes be fore several

> shocks were required to correct the problem.

>

> I am on betapace 12o mgs three times per day and preivial which has just

be

> increased to 40 mg per day s my bllod prssure has been playing games on

me.

>

> I also take 6 other meds for other problems, plus my inhalers for my

lungs.

>

> Does anyone else take this much medicine.

>

> Zappy in Ohio

> Sharon

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

>

[Guest guest]

Staci wrote:

> i take 6 meds for my heart my rthmy and 30 for other heart problom i take

3

> lung pills and two in hayler i take alot of other meds to 3-6 times a day

> which dont really help

Staci:

Speaking as an old fogey of not quite 60, I really do admire your inner

strength and healthy disposition. Not many young people discover their own

mettle as you have. Most of us with AICD's have had to do deal with our own

mortality and the things necessary to stay alive at a much older age than

you. We had already reached the point in our lives where there were

accomplishments and experiences, aquisitions and memories, and in many cases

had started families that we had seen grow into adults alreaady older than

you ae now.

Your postings have been a constant reminder just how fortunate I am to have

had a full life to this point and how greatful I am for the technology now

availble to let me go on living as comfortably and productively as I do.

Hopefully medical science will continue to advance and many of the

conditions you now have will become even more easily manageable, if not

completely reversible.

I truly admire you for how you are handling your life.

Bill

[Guest guest]

Hi Debbie,

It's interesting to learn a little bit more w/ each visit to the Dr. Like

you said, next month, you're going to ask about battery life. I had my visit

today like I said & I was told my battery will need replacing at a reading of

(2.55)--I'll get a warning (1-3 month) that I need to schedule the

replacement at (2.65) and right now my level is (3.1). It depends which

make & model you have--what your replacement info is like. They call this

the E.R.I.--Elective Replacement Indicator. I've had it in almost 3 yrs (Nov)

I was 37 when it was put in & scared as hell; just like almost (probably)

everyone reading this. Nobody does know what it's like until it's you!!

Sometimes what irks me is when people don't even try to understand or listen

to you & they think it's JUST a pacemaker. It doesn't pay to explain further

sometimes. A very good friend/neighbor said to me when I had just had the

implant " My husband doesn't think you even need that! " and my brother-in-law

2 weeks post-op said " It's not so bad--so many people are so much worse-off

than you " --These are things that can be upsetting to hear;especially fresh

out of the OR.Sure I realize a LOT of people are a lot worse off--but to hear

this and especially during such a vulnerable time.

P.S. The Dr. lowered my (low-end) setting from 40 to 35 during my

visit. I have pauses (2nd Degree Heart Block) that are bothersome .

Good luck, Laurie with your AICD. You have to have the outlook that you seem

to have--keep it up. My Dr. sa

id " you were the lucky ones to survive & have this technology for yourselves.

We gave you this device to improve the quality of your life, not to lessen

the quality of your life! "

And Staci, you hang in there! You're doing great. I can't believe also the

insight you have. You are very mature & brave.Take Good Care --talk to you

soon!

[Guest guest]

Stacie,

My pacer works full time and paces me at a low rate limit of 115. Yes,

that's low rate limit. They do that to control my rhythm because every time

they lower it I get shocked. I can't be paced out of a bad rhythm because my

rate goes straight from the lower paced limit to V-fib. Then I pass out and

when I wake up I have temporary amnesia because the shock is so strong that

it causes my brain to forget everything for a little bit. At least that's

what they told me and it sounds good. It's so scary though because there are

all these people around me yelling things out and I don't know what happened

or even who my parents are, I just know something is very wrong. They

usually have to sedate me after I've been shocked. I won't let them lower

the rate anymore because I've been shocked like 150 times or so (you lose

count after a while) and getting shocked is too scary. What is it like when

you get shocked? Do you lose your memory too?

BTW, I just had my ICD replaced. I had to get it replaced the first week

of school. They wanted to replace it quickly because it wasn't working right

at the end. All the numbers that were supposed to tell you how much battery

life was left said there were six months left (at least) but he was beeping

to be replaced and he was at ERI. I still have mine in my abdomen because

I'm still too small to fit a 40cc ICD in my shoulder. Where do you have

yours Stacie?

I don't take as much medicine as you, but I take 14 medicines. My mom is

always trying to get me to take less medicine and sometimes she gets really

really mad when I take the four medicines that are prescribed for as needed.

She called me a drug abuser today because I took one of them. Once she took

away some of my medicines and I had arrhythmias and a seizure and my mind

completely broke with reality. My sister said that then my mom was force

feeding me the drugs she took away but she didn't know what doses I was on

for all of them so it took a while for things to get back to normal. My dad

got really mad at my mom that time and she hasn't done anything like that

since but she still calls me mean things and gets mad when I sleep more than

normal because the medicine makes me tired. Do your parents do any of that?

This letter is getting too long, so good bye for now.

, 20

[Guest guest]

,

I am so sorry to hear that you don't quite get the support that you need at

home. I too get sleepy from my meds and I only take 6 of them. I have to

nap just about every day. You are not an abuser! You are just trying to

live the best way you can.

I admire you and your strength. It must be terribly scary to lose your

memory with the zaps. My prayers will be with you. You take good care.

Sue

[Guest guest]

teresa

i named mine icd jumpy becuase when he goes off it's more then once when

jumpy goes off i tell my doctor jumpy got mad at my heart i'm so sorry you

are feel that way i feel every one is brave but NO ONE is more brave then

the nexet just the way we are is deffernt yes i been told thangs that i

should not be by my mom and dad and a doctor aka a duck when i get shocked

it scares me but i dont pass out or loss menoy and it dont hurt i do hear it

chage and feel it but no pain my doctor tells me why i dont feel pain is

that i'm so used to pain from sugerys that it dont bother me any more i'm

sorry by joining this group i caused so much trouble i thank maybe i should

leave this group is a good thank but if it is going to make people upset it

is not worth it as for beening brave i'm not i'm just as scared as anyone

esle let me know if i should leave for now i will not post so i dont hurt

any one thank for your time

stacie,17

Re: Pacemaker usage of ICD

>

> ,

>

> I am so sorry to hear that you don't quite get the support that you need

at

> home. I too get sleepy from my meds and I only take 6 of them. I have to

> nap just about every day. You are not an abuser! You are just trying to

> live the best way you can.

> I admire you and your strength. It must be terribly scary to lose your

> memory with the zaps. My prayers will be with you. You take good care.

>

> Sue

>

> Please visit the Zapper homepage at

> http://www.ZapLife.org

>

[Guest guest]

Hey " Smiley-Face " , , Lori-Lynn, Fellow-Bionic Friends,

I've been writing once in a while & get a lot of good info & to make input at

times--this is what this group is all about! WE ALL NEED EACH OTHER!!!!!!!!!

Let's all be there for each other to muddle through this -- We can do it!!!!

In my eyes, ANYONE who has one of these life-saving machines in their body is

very brave; no matter what your age, 17, 20, 37, 40 50, 60 and up! We know

we need these devices and the key to it all is making each day the best we

can and being on the Zaplist is only one small part of " making the best of

each day " . As time marches on, we all have different experiences and we can

rely on each other and become stronger or we can turn the other way and feel

weaker. The choice is ours!!

So, let's stand together and use this Zaplist for what it's intended.

In the words of Burns..... " It's not what we go through in life (God

knows there's enough of that!)...but rather how we deal with what we go

through!!!!!!!!!

Be well friends, Love,

[Guest guest]

,

I don't think anyone has or could have said it better. Well said!!!!!!!

Mike

Central Pennsyvania

MI 3/16/00

Bypass 3/20/00

AICD 5/16/00 (Ventricular Tachacardia)

41 yrs. old

[Guest guest]

Hi STCapital7@...,

I'm glad someone agrees with what I said. I can't believe you've had

bypass surgery @ your young age already. Was the AICD to back up your VTach?

I'm around your age (40) and find it hard to believe you had bypass already.

I have cardiomyopathy & VTach & 2nd degree Heart Block BUT the arteries were

as clear as they could be. My cardiomy. probably came from a childhood virus.

Did you have any family history of V-Tach? I didn't. Twice I had Lymes'

Disease and that contributed to the Heart Block more that likely. My

pacemaker was being used too much, so my pacing was set from 40 down to 35

(Who knows?)

You were how old when you went through the ByPass? How did you deal w/ it?

Did you have an angioplasty first or right to the top?

I think we're neighbors. We're on the East End also. Went out to the

Greenport Festival on the weekend ( was there) it was nice. We

don't live that far out on the Island but we're on the way.

[Guest guest]

Dear ,

I just want you to know that I admire you and Staci and that both of you have

given me courage isn't funny how you young folks can make a difference in my

life. I have had heart problems all my life. One thing or another but it

wasn't until about 12 years ago that anyone was able to put 2 & 2 together

and come up with any worable answers.

My first icd was a nightmare and I was terrified it lasted 9 months and then

was recalled my second icd lasted 13months then something unexplainable

happened and it miss fired 43 times in 3 hours burning off the probes and

leaving them embedded. When they went to repair it they couldn't and my

viens kept teraing and they couldn't get a new one in so I was monitored and

lived on experimental drugs sense none then available worked or I couldn't

otlearte them. I thought this was a blessing that God had fixed me and that

I woulkd never have to have another icd. I hid from the doctor stopped

keeping my Clinic appointments, lied to evreyone because I was so scared to

have another icd inplanted after my experience.

Last summer i July just a few weeks before my only daughters wedding I was

found non responsive on the floor not breathing and when I started to breathe

again I went into a full seisure.

Long Story short I was ordered by all to have anew icd. The fear was

ovewhelming for me. They brought in shrinks and all kinds of doctors who

told me if would not live through anpother episode without and icd.

I can't tell you how I have been for the last years as I am ashamed to be

such a complainer and whinner when I hear about you and Staci. I am lucky to

be here and I was lucky to see my daughter walk down the aisle.

I hate all the meds I take and it seems the older I get the more they add and

the more they keep increasing. I am tired but I try to do a little something

each day. I have flash backs and Phantom firings I see a shrink. Most of my

friends shy away from the subject or thing it is just a pacer and don't

understand.

My youngest son and my husband were with me during the miss fire episode and

it freaked them both out and they just don't like to talk about it. I found

found a much support from tis group and know that I am not alone. There is

room here for all of us.

I have learned to trust God althought sometimes I question him very much but

you young folks are incredible.

I am sorry that your mother has so much trouble dealing with your illness.

That can't be very pleasant for you or for her. She seems like she is having

trouble excepting your limitations.

Please know that I am always just an e-mail away. Looking forward to getting

to know you better in the future.

Love and Prayers

Sharon

[Guest guest]

Hey Sue and , I knew yo where somewhere Sue and I knew you would reach

out and give a life. You have been the best medicine in the world for

me

Aren't these young ones amazing!!!!

, what do youlike to do. Or should I say what are you allowed to do.

Do you read or sew. Are you in school. Tell us a little about yourself.

Sharon

[Guest guest]

YEAH ANDREA, YEAH ANDREA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WELL PUT AND WELL SAID.

[Guest guest]

Dear Sharon,

You are not a complainer nor a whiner. You are a real person who has

opened up to the rest of us (a very hard thing to do sometimes, as you said)

and who has probably helped many people by doing so. I am so sorry about

your first two bad ICD experiences. You are not the only one with leads

embedded in their heart. I have two big epicardial defib patches sewn to the

outside of my heart, an epicardial ventricular sensing lead and an epicardial

ventricular pacing lead. Then there's the subcutaneous atrial lead which was

tunneled up from my abdomen to my shoulder and that is connected to an atrial

pacing lead which is screwed into the inside wall of my right atrium. This

last time I got a subcutaneous ventricular pacing/defib lead which is also

tunneled and connected to another lead in my shoulder (which is the one that

actually does the pacing and defibbing) and that is in my right ventricle. I

love to see the looks on the radiologist's faces when I go in for a chest

X-ray. It looks like I swallowed a toaster with all those coils and lines!

The doctors told me that none of them will ever come out, but they don't

usually bother me, so I plan on collecting leads all my life, and I hope my

body has enough room for organs and leads.

[Guest guest]

Thanks for the reply and the nice reply. We are all in this together and

sometimes I need my hand held. Take care Sharon

[Guest guest]

Please put me back on the list, and please send me the link to the Zapper

News Papper Thanks