Re: Re: Procrit Help (to from Joan) (FOR BECKY SPECIFICALLY)

[Guest guest]

Hi Becky,

I have the newest congestive heart failure pacemaker.

(I have had (2) different pacemakers) It is an

InsyncIII, I jokingly call it the boyband pacer. It

is a 3 wire pacer. Pacer's do shock, they just don't

pack the jolt a difiberlater does. When I first had

it I did notice it, and according to my

electrophysiologist I am extremely sensitive to the

slightest change in settlings. When I got the first

pacemaker, the medtronic kappa 700, the next morning

when I woke up after the surgery I felt like I had

been resurrected from the dead. I felt 16 again (I

was 41). I am now 100% paced; even when I was on a

pacer that worked only when it was needed i was at 97%

use. It has been a true Godsend to me, had I not

gotten it I can say with full conviction I would have

been in the cemetary for quite a while by now. My

heart has been so miswired by sarc it doesn't know

what to do. I have had heart monitors pickup my

heartrate anywhere from 13 bpm to 235bpm (needless to

say the ER staff wasn't happy). Some of my holter

monitor readings for the bradycardia are worse.

Getting a pacemaker was one of the best things that

ever happened to me, and other than the Lord is what

keeps me alive now.

It's not a bad surgery, your just a little sore from

them making the pocket that the pacer goes into. Once

the soreness goes away, your good to go.

Take care of yourself & make sure you ask them to put

plenty of length on the wires, especially if your

chesty at all. I'm not being funny, it seems to make

a difference.///////////Connie

--- Mac Tosh macandtosh626@...> wrote:

> Connie,

> I'm going to see a dr next week about an inplantable

> defibulator...is that what you have or is it

> strictly a pacemaker? How has it been for you with

> it? Do you feel it shock your heart and if so how

> often? If is strictly a pacemaker it wouldn't shock

> so just was wondering...thanks, Becky

>

>

>

>

>

>

>

>

> f

>

> Connie Griffis conaugusta@...> wrote:

>

> Joan,

>

> Watch the sudden " sleeps " . That was my main

> symptom for heart sarc. I have a pacer (Insync III)

> because of it///Connie

>

> pickstands@... wrote:

> OMG, ! I cannot believe your own PCP

> insinuates such!!! ... and one Lortab at nite for

> our type of bone pain?!? ... what a joke!!! I hope

> it is the 10/500 mg tabs at least!?!

>

> I take 4 methadone tabs a day; I only take Lortab

> for breakthrough pain ... but I am prescribed 4 per

> day if necessary. and the MTX is big on helping to

> control the pain as well. If I skip the MTX for a

> week ... which I do if I need to see a dr. in the

> city that week, well, I have to take it as soon as

> I get home from my appt. ... my sarc. spec.

> explained that every person has his/her own time

> period to be without the MTX ... mine is approx. 4

> days ... if I don't take it on Sunday as normally

> scheduled, then by Thursday, I am in trouble.

>

> Anyway, do you have a Pain Specialist? They truly

> do understand pain and are really very empathetic to

> those with chronic pain .. that is why they have

> chosen this field. It is actually a " Pioneer's "

> field for practice right now. Every pain dr. I've

> dealt with at the office I go to (there are about 10

> doc's and 2 nurse practitioners) are striving to get

> each person that comes into their office out of pain

> and then keep them that way. They are extremely

> careful regarding the narcotics though ... random

> urine/blood tests -- which everyone is subjected to

> at some point, lots of contracts ... you have to

> sign a contract to see a psychiatrist several times

> a year so they are as confident as possible you are

> not suicidal, sign a contract stating you will use

> the one pharmacy you have named on their chart, and

> a few others that I forget right now. If you lose

> your script or meds, you don't get a refill until

> next month. If you lose them more than once, your

> on your way to

> being released.

>

> I take a lot of medications too ... about 10 also.

> I stopped taking one of them, thinking I could do

> without it, but I think I need to start again.

>

> That is terrible! what happens to you from the

> Paxil!!! I wonder if it is the Paxil that is

> causing me to have these strange episodes. My

> father heard the kitchen sink water running for a

> very long time ... I was only washing a few dishes.

> He found me with my head in the sink! ... he woke me

> up ... this occurred two more times!

>

> I have episodes where I will be wide awake; then

> suddenly asleep. There are times when am articulate

> but telling " stories " or responding to someone with

> a completely unrelated answer to their question. I

> have episodes where I completely forget what I am

> trying to say to someone. Sometimes I recall these

> and sometimes I completely forget it all until

> someone tells me.

>

> I find it really, really disturbing that I no

> longer control my own brain. I am never left alone

> ... which is annoying, too ... but, I understand it

> is necessary. I get sad when I think about taking a

> drive by myself, opening the sunroof, listening to

> good, loud music...I really miss that.

>

> Oh well ... I really hope you find another, more

> understanding PCP!!! I have a difficult time in

> understanding that ... I now relaize I am very lucky

> with my doctors ... they are all pretty much tuned

> in to what is happening with me ... I think they are

> curious as to where this will progress and what

> works and doesn't work as well.

>

> Good Luck to You, Sweetie!,

>

> Hugs and Prayers,

> Joan

>

>

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

>

>

> In a message dated 8/20/2006 2:00:58 P.M. Eastern

> Standard Time, topdat@... writes:

> Thanks Ruth, I know you're

> right, its not my first fight but dang I'm getting

> really very tired of all of this, not mentally tired

> I mean physically tired..My PCP isn't supportive nor

> does she make any bones about the fact that she's

> not gonna do anything for me, why am I staying?

> Well for just a few more days, she is pregnant, and

> is going on maternity leave, she has it in my chart

> that I'm just seeking medication, which is stupid

> because what I take is like B/P meds, fluid tablets,

> imuran, a multivitamin, Calcium, a few other over

> the counter meds that she's ordered. I do take one

> Lortab at night for bone pain, but that's it...

> because I'm on more than 10 medications that " SHE'S "

> ordered, I just want to take medications just to be

> taking something.. HOW STUPID!!! This is the same

> person that told me that if I didn't agree to take

> Paxil that there wasn't anything thing she could do

> for me. I bet she forgot that.. Well I took it for a

> short while,

> my sleep apnea doctor says that's why I'm getting

> up in my sleep and waking up in different locations,

> I even wrecked my wheelchair one night in my sleep

> and woke up due to the crash.

>

> I won't give up, I have a 16 year old son that

> needs me right now, but I'm telling ya if it wasn't

> for him, I don't know..

>

> Thanks again,

>

>

> -------Original Message-------

>

> From: olehomepla

> Date: 08/20/06 12:01:43

> To: Neurosarcoidosis

> Subject: Re: Procrit Help

>

>

> Dear ,

> Getting the medications we need is so incredible

> frustrating. DON " T GIVE UP! KEEP FIGHTING. Even

> though the drug company says they won't give you the

> drug because you have insurance ... apply anyway as

> special circumstances. My insurance denied

> Remicade for me and I went to the drug company and

> got it approved for 6 months. Sorry I can help you

> with Medicare D as I don't have it.

> It would be so wonderful if some big shot in the

> drug industry would realize that if they gave us the

> drugs we need they would be saving huge amonts of

> money by keeping us healthy!!! (well healthier)

> WHAT **** &^%$#%&*** idiots they are!!

> I understand how difficult it is to seek a new

> primary care doctor also. I shutter at the thought

> of having to explain my medical history to just one

> more doctor!!!....I don't like my PC Doc (not that

> she isn't supportive of me ..I just don't click with

> her) but she has wonderful nurse practioners and I

> only see them. If they were to move practices I'd

> go with them.

> PLEASE don't give up....keep looking for a way to

> get this medication!!

> ttfn

> Ruth

>

>

>

> >

> > Hey friends, I need to know if any of you know if

> any of you can tell

> > me what to do to get my Procrit approved through

> my Medicare D

> > prescription plan. For the first time in 5 years I

> finally find a

> > medicine that was giving me some hope as to

> feeling better, and what

> > happens Medicare snatches it right from under me.

> And the pain in the

> > arse doctor Dendy just tells me that I'll have to

> pay for it out of

> > pocket if I decided that " I want to continue the

> medication " I don't

> > really see that there is no choice.. its not a

> matter of me just

> > wanting to continue the medication, its the fact

> that I need the

> > medication. I'm ready to " KILL HER " and I promise

> you

=== message truncated ===

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Hi Connie,You've helped me to feel MUCH better about the AICD. I will definitely ask about long leadwires. I've had such bad experiences in the past with general anesthesia (long story). My heart doesn't go bradycardic but tachycardic. Throw in some A-fib and it's really concerning. Sounds like the pacemaker is a better way to go...I'm not looking forward to getting the bolt of lightning shock from the AICD. Of course, that would be better than the outcome. It's just really scary. I can't remember if you were dx with cardiac sarcoid or if the CHF happened b/c of something else. I'm especially "fluffy" after 2+ yrs on steroids every day...yikes! Did they tell you to not raise your left arm over your head for 6 weeks? Do they sew the wires in place? Call me "chicken big".Blessings,BeckyConnie Griffis wrote: Hi Becky, I have the newest congestive heart failure pacemaker. (I have had (2) different pacemakers) It is an InsyncIII, I jokingly call it the boyband pacer. It is a 3 wire pacer. Pacer's do shock, they just don't pack the jolt a difiberlater does. When I first had it I did notice it, and according to my electrophysiologist I am extremely sensitive to the slightest change in settlings. When I got the first pacemaker, the medtronic kappa 700, the next morning when I woke up after the surgery I felt like I had been resurrected from the dead. I felt 16 again (I was 41). I am now 100% paced;

even when I was on a pacer that worked only when it was needed i was at 97% use. It has been a true Godsend to me, had I not gotten it I can say with full conviction I would have been in the cemetary for quite a while by now. My heart has been so miswired by sarc it doesn't know what to do. I have had heart monitors pickup my heartrate anywhere from 13 bpm to 235bpm (needless to say the ER staff wasn't happy). Some of my holter monitor readings for the bradycardia are worse. Getting a pacemaker was one of the best things that ever happened to me, and other than the Lord is what keeps me alive now. It's not a bad surgery, your just a little sore from them making the pocket that the pacer goes into. Once the soreness goes away, your good to go. Take care of yourself & make sure you ask them to put plenty of length on the wires, especially if your chesty at all. I'm not being funny,

it seems to make a difference.///////////Connie --- Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: > Connie, > I'm going to see a dr next week about an inplantable > defibulator...is that what you have or is it > strictly a pacemaker? How has it been for you with > it? Do you feel it shock your heart and if so how > often? If is strictly a pacemaker it wouldn't shock > so just was wondering...thanks, Becky > > > > > > > > > f > > Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: > > Joan, > > Watch the sudden "sleeps". That was my main > symptom for heart sarc. I have a pacer (Insync III) > because of it///Connie

> > pickstands (AT) aol (DOT) com wrote: > OMG, ! I cannot believe your own PCP > insinuates such!!! ... and one Lortab at nite for > our type of bone pain?!? ... what a joke!!! I hope > it is the 10/500 mg tabs at least!?! > > I take 4 methadone tabs a day; I only take Lortab > for breakthrough pain ... but I am prescribed 4 per > day if necessary. and the MTX is big on helping to > control the pain as well. If I skip the MTX for a > week ... which I do if I need to see a dr. in the > city that week, well, I have to take it as soon as > I get home from my appt. ... my sarc. spec. > explained that every person has his/her own time > period to be without the MTX ... mine is approx. 4 > days ... if I don't take it on Sunday as normally > scheduled, then by Thursday, I am in trouble. > > Anyway, do you have a Pain Specialist? They truly > do understand pain and are really very empathetic to > those with chronic pain .. that is why they have > chosen this field. It is actually a "Pioneer's" > field for practice right now. Every pain dr. I've > dealt with at the office I go to (there are about 10 > doc's and 2 nurse practitioners) are striving to get > each person that comes into their office out of pain > and then keep them that way. They are extremely > careful regarding the narcotics though ... random > urine/blood tests -- which everyone is subjected to > at some point, lots of contracts ... you have to > sign a contract to see a psychiatrist several times > a year so they are as confident as possible you are > not suicidal, sign a contract stating you will use > the one pharmacy you have named on their chart, and > a few

others that I forget right now. If you lose > your script or meds, you don't get a refill until > next month. If you lose them more than once, your > on your way to > being released. > > I take a lot of medications too ... about 10 also. > I stopped taking one of them, thinking I could do > without it, but I think I need to start again. > > That is terrible! what happens to you from the > Paxil!!! I wonder if it is the Paxil that is > causing me to have these strange episodes. My > father heard the kitchen sink water running for a > very long time ... I was only washing a few dishes. > He found me with my head in the sink! ... he woke me > up ... this occurred two more times! > > I have episodes where I will be wide awake; then > suddenly asleep. There are times when am articulate > but telling "stories" or

responding to someone with > a completely unrelated answer to their question. I > have episodes where I completely forget what I am > trying to say to someone. Sometimes I recall these > and sometimes I completely forget it all until > someone tells me. > > I find it really, really disturbing that I no > longer control my own brain. I am never left alone > ... which is annoying, too ... but, I understand it > is necessary. I get sad when I think about taking a > drive by myself, opening the sunroof, listening to > good, loud music...I really miss that. > > Oh well ... I really hope you find another, more > understanding PCP!!! I have a difficult time in > understanding that ... I now relaize I am very lucky > with my doctors ... they are all pretty much tuned > in to what is happening with me ... I think they are > curious

as to where this will progress and what > works and doesn't work as well. > > Good Luck to You, Sweetie!, > > Hugs and Prayers, > Joan > > ---------------------------------------------------------- > > > In a message dated 8/20/2006 2:00:58 P.M. Eastern > Standard Time, topdat (AT) bellsouth (DOT) net writes: > Thanks Ruth, I know you're > right, its not my first fight but dang I'm getting > really very tired of all of this, not mentally tired > I mean physically tired..My PCP isn't supportive nor > does she make any bones about the fact that she's > not gonna do anything for me, why am I staying? > Well for just a few more days, she is pregnant, and > is going on maternity leave, she has it in my chart > that

I'm just seeking medication, which is stupid > because what I take is like B/P meds, fluid tablets, > imuran, a multivitamin, Calcium, a few other over > the counter meds that she's ordered. I do take one > Lortab at night for bone pain, but that's it... > because I'm on more than 10 medications that "SHE'S" > ordered, I just want to take medications just to be > taking something.. HOW STUPID!!! This is the same > person that told me that if I didn't agree to take > Paxil that there wasn't anything thing she could do > for me. I bet she forgot that.. Well I took it for a > short while, > my sleep apnea doctor says that's why I'm getting > up in my sleep and waking up in different locations, > I even wrecked my wheelchair one night in my sleep > and woke up due to the crash. > > I won't give up, I have a 16 year old son that > needs me

right now, but I'm telling ya if it wasn't > for him, I don't know.. > > Thanks again, > > > -- Re: Procrit Help > > > Dear , > Getting the medications we need is so incredible > frustrating. DON"T GIVE UP! KEEP FIGHTING. Even > though the drug company says they won't give you the > drug because you have insurance ... apply anyway as > special circumstances. My insurance denied > Remicade for me and I went to the drug company and > got it approved for 6 months. Sorry I can help you > with Medicare D as I don't have it. > It would be so

wonderful if some big shot in the > drug industry would realize that if they gave us the > drugs we need they would be saving huge amonts of > money by keeping us healthy!!! (well healthier) > WHAT **** & ^%$#% & *** idiots they are!! > I understand how difficult it is to seek a new > primary care doctor also. I shutter at the thought > of having to explain my medical history to just one > more doctor!!!....I don't like my PC Doc (not that > she isn't supportive of me ..I just don't click with > her) but she has wonderful nurse practioners and I > only see them. If they were to move practices I'd > go with them. > PLEASE don't give up....keep looking for a way to > get this medication!! > ttfn > Ruth > > > > > > > Hey friends, I need to know if any of you know if > any of you can tell > > me what to do to get my Procrit approved through > my Medicare D > > prescription plan. For the first time in 5 years I > finally find a > > medicine that was giving me some hope as to > feeling better, and what > > happens Medicare snatches it right from under me. > And the pain in the > > arse doctor Dendy just tells me that I'll have to > pay for it out of > > pocket if I decided that "I want to continue the > medication" I don't > > really see that there is no choice.. its not a > matter of me just > > wanting to continue the medication, its the fact > that I need the >

> medication. I'm ready to "KILL HER" and I promise > you === message truncated === __________________________________________________________ Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates (http://voice.yahoo.com)

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Hi Becky, I needed the pacer because of the sarc miswiring my heart. I do not have clogged arteries or anything like that. Sarc miswires your heart and causes the pvc's, bradycardia, tachycardia, atrial fib, atrial flutter, etc. etc. etc. I have also had ablation surgery to help control the tachycardia, my pacers are for the bradycardia, the insync iii came when they could not control my heart failure with meds. You do have to be careful for the first six weeks about lifting objects and raising your arms. The leads looks like little crosses. (you don't feel it so don't get upset) They stick these little leads into precise spots on the heart, kinda like stickpins. Over time the heart muscle grows up and over them and holds them in place. In most cases your leads are never replaced, it is extremely rare. Please pay close attention, to yourself for the 6

wks. Hopefully you feel great like I did the first time, this does not however mean that the leads have had a chance to grow in place, so even though you may look great & feel better do exactly what they say when it comes to activity, the leads have to have time to get anchored. If you need a new battery or pacer, they leave the leads in, unhook them from the little box and replace whatever it is that needs replacing, or in my case in dec 05, they replaced the pacer and added a 3rd lead. The incision is not very big and is about 3 inches below your collar bone, they run the leads in a blood vessel behind your collar bone, they're a little better protected that way. Your in my thoughts & prayers....ConnieMac Tosh wrote: Hi Connie,You've helped me to feel MUCH better about the AICD. I will definitely ask about long leadwires. I've had such bad experiences in the past with general anesthesia (long story). My heart doesn't go bradycardic but tachycardic. Throw in some A-fib and it's really concerning. Sounds like the pacemaker is a better way to go...I'm not looking forward to getting the bolt of lightning shock from the AICD. Of course, that would be better than the outcome. It's just really scary. I can't remember if you were dx with cardiac sarcoid or if the CHF happened b/c of something else. I'm especially

"fluffy" after 2+ yrs on steroids every day...yikes! Did they tell you to not raise your left arm over your head for 6 weeks? Do they sew the wires in place? Call me "chicken big".Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: Hi Becky,I have the newest congestive heart failure pacemaker. (I have had (2) different pacemakers) It is anInsyncIII, I jokingly call it the boyband pacer. Itis a 3 wire pacer. Pacer's do shock, they just don'tpack the jolt a difiberlater does. When I first hadit I did notice it, and according to myelectrophysiologist I am extremely sensitive to theslightest change in settlings. When I got the firstpacemaker, the medtronic kappa 700, the next morningwhen I woke up after the surgery I felt like I hadbeen resurrected from the

dead. I felt 16 again (Iwas 41). I am now 100% paced; even when I was on apacer that worked only when it was needed i was at 97%use. It has been a true Godsend to me, had I notgotten it I can say with full conviction I would havebeen in the cemetary for quite a while by now. Myheart has been so miswired by sarc it doesn't knowwhat to do. I have had heart monitors pickup myheartrate anywhere from 13 bpm to 235bpm (needless tosay the ER staff wasn't happy). Some of my holtermonitor readings for the bradycardia are worse. Getting a pacemaker was one of the best things thatever happened to me, and other than the Lord is whatkeeps me alive now.It's not a bad surgery, your just a little sore fromthem making the pocket that the pacer goes into. Oncethe soreness goes away, your good to go.Take care of yourself & make sure you ask them to putplenty of length on the wires, especially if

yourchesty at all. I'm not being funny, it seems to makea difference.///////////Connie --- Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote:> Connie,> I'm going to see a dr next week about an inplantable> defibulator...is that what you have or is it> strictly a pacemaker? How has it been for you with> it? Do you feel it shock your heart and if so how> often? If is strictly a pacemaker it wouldn't shock> so just was wondering...thanks, Becky> > > > > > > > > f> > Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: > > Joan,> > Watch the sudden "sleeps". That was my main> symptom for heart sarc. I have a pacer (Insync III)> because of it///Connie> > pickstands (AT) aol (DOT) com wrote:> OMG, ! I cannot believe your own PCP> insinuates such!!! ... and one Lortab at nite for> our type of bone pain?!? ... what a joke!!! I hope> it is the 10/500 mg tabs at least!?!> > I take 4 methadone tabs a day; I only take Lortab> for breakthrough pain ... but I am prescribed 4 per> day if necessary. and the MTX is big on helping to> control the pain as well. If I skip the MTX for a> week ... which I do if I need to see a dr. in the> city that week, well, I have to take it as soon as> I get home from my appt. ... my sarc. spec.> explained that every person has his/her own time> period to be without the MTX ... mine is approx. 4> days ... if I don't take it on Sunday as normally> scheduled, then by Thursday, I am in trouble.> > Anyway, do you have a Pain Specialist? They

truly> do understand pain and are really very empathetic to> those with chronic pain .. that is why they have> chosen this field. It is actually a "Pioneer's"> field for practice right now. Every pain dr. I've> dealt with at the office I go to (there are about 10> doc's and 2 nurse practitioners) are striving to get> each person that comes into their office out of pain> and then keep them that way. They are extremely> careful regarding the narcotics though ... random> urine/blood tests -- which everyone is subjected to> at some point, lots of contracts ... you have to> sign a contract to see a psychiatrist several times> a year so they are as confident as possible you are> not suicidal, sign a contract stating you will use> the one pharmacy you have named on their chart, and> a few others that I forget right now. If you lose> your script or meds, you don't

get a refill until> next month. If you lose them more than once, your> on your way to> being released.> > I take a lot of medications too ... about 10 also.> I stopped taking one of them, thinking I could do> without it, but I think I need to start again.> > That is terrible! what happens to you from the> Paxil!!! I wonder if it is the Paxil that is> causing me to have these strange episodes. My> father heard the kitchen sink water running for a> very long time ... I was only washing a few dishes. > He found me with my head in the sink! ... he woke me> up ... this occurred two more times!> > I have episodes where I will be wide awake; then> suddenly asleep. There are times when am articulate> but telling "stories" or responding to someone with> a completely unrelated answer to their question. I> have episodes where I completely

forget what I am> trying to say to someone. Sometimes I recall these> and sometimes I completely forget it all until> someone tells me.> > I find it really, really disturbing that I no> longer control my own brain. I am never left alone> ... which is annoying, too ... but, I understand it> is necessary. I get sad when I think about taking a> drive by myself, opening the sunroof, listening to> good, loud music...I really miss that.> > Oh well ... I really hope you find another, more > understanding PCP!!! I have a difficult time in> understanding that ... I now relaize I am very lucky> with my doctors ... they are all pretty much tuned> in to what is happening with me ... I think they are> curious as to where this will progress and what> works and doesn't work as well.> > Good Luck to You, Sweetie!,> > Hugs and

Prayers,> Joan> >----------------------------------------------------------> > > In a message dated 8/20/2006 2:00:58 P.M. Eastern> Standard Time, topdat (AT) bellsouth (DOT) net writes:> Thanks Ruth, I know you're> right, its not my first fight but dang I'm getting> really very tired of all of this, not mentally tired> I mean physically tired..My PCP isn't supportive nor> does she make any bones about the fact that she's> not gonna do anything for me, why am I staying? > Well for just a few more days, she is pregnant, and> is going on maternity leave, she has it in my chart> that I'm just seeking medication, which is stupid> because what I take is like B/P meds, fluid tablets,> imuran, a multivitamin, Calcium, a few other over> the counter meds that she's ordered. I do

take one> Lortab at night for bone pain, but that's it...> because I'm on more than 10 medications that "SHE'S"> ordered, I just want to take medications just to be> taking something.. HOW STUPID!!! This is the same> person that told me that if I didn't agree to take> Paxil that there wasn't anything thing she could do> for me. I bet she forgot that.. Well I took it for a> short while,> my sleep apnea doctor says that's why I'm getting> up in my sleep and waking up in different locations,> I even wrecked my wheelchair one night in my sleep> and woke up due to the crash.> > I won't give up, I have a 16 year old son that> needs me right now, but I'm telling ya if it wasn't> for him, I don't know..> > Thanks again,> > > -- Re: Procrit Help> > > Dear ,> Getting the medications we need is so incredible> frustrating. DON"T GIVE UP! KEEP FIGHTING. Even> though the drug company says they won't give you the> drug because you have insurance ... apply anyway as> special circumstances. My insurance denied> Remicade for me and I went to the drug company and> got it approved for 6 months. Sorry I can help you> with Medicare D as I don't have it.> It would be so wonderful if some big shot in the> drug industry would realize that if they gave us the> drugs we need they would be saving huge amonts of> money by keeping us healthy!!! (well healthier) > WHAT **** & ^%$#% & *** idiots they are!! > I understand how difficult it

is to seek a new> primary care doctor also. I shutter at the thought> of having to explain my medical history to just one> more doctor!!!....I don't like my PC Doc (not that> she isn't supportive of me ..I just don't click with> her) but she has wonderful nurse practioners and I> only see them. If they were to move practices I'd> go with them.> PLEASE don't give up....keep looking for a way to> get this medication!!> ttfn> Ruth> > > > >> > Hey friends, I need to know if any of you know if> any of you can tell > > me what to do to get my Procrit approved through> my Medicare D > > prescription plan. For the first time in 5 years I> finally find a > >

medicine that was giving me some hope as to> feeling better, and what > > happens Medicare snatches it right from under me.> And the pain in the > > arse doctor Dendy just tells me that I'll have to> pay for it out of > > pocket if I decided that "I want to continue the> medication" I don't > > really see that there is no choice.. its not a> matter of me just > > wanting to continue the medication, its the fact> that I need the > > medication. I'm ready to "KILL HER" and I promise> you === message truncated ===__________________________________________________________Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates (http://voice.yahoo.com) Get your email and see which

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Hi Connie,Thank you so much for your reply. You have helped me greatly with your explanation of what you experienced. Blessings,BeckyConnie Griffis wrote: Hi Becky, I needed the pacer because of the sarc miswiring my heart. I do not have clogged arteries or anything like that. Sarc miswires your heart and causes the pvc's, bradycardia, tachycardia, atrial fib, atrial flutter, etc. etc. etc. I have also had ablation surgery to help control the

tachycardia, my pacers are for the bradycardia, the insync iii came when they could not control my heart failure with meds. You do have to be careful for the first six weeks about lifting objects and raising your arms. The leads looks like little crosses. (you don't feel it so don't get upset) They stick these little leads into precise spots on the heart, kinda like stickpins. Over time the heart muscle grows up and over them and holds them in place. In most cases your leads are never replaced, it is extremely rare. Please pay close attention, to yourself for the 6 wks. Hopefully you feel great like I did the first time, this does not however mean that the leads have had a chance to grow in place, so even though you may look great & feel better do exactly what they say when it comes to activity, the leads have to have time to get anchored. If you need a new battery or pacer, they leave the leads in, unhook them from the little box and replace whatever it is that needs replacing, or in my case in dec 05, they replaced the pacer and added a 3rd lead. The incision is not very big and is about 3 inches below your collar bone, they run the leads in a blood vessel behind your collar bone, they're a little better protected that way. Your in my thoughts & prayers....ConnieMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Hi Connie,You've helped me to feel MUCH better about the AICD. I will definitely ask about long leadwires. I've had such bad experiences in the past with general anesthesia (long story). My heart doesn't go bradycardic but tachycardic. Throw in some A-fib

and it's really concerning. Sounds like the pacemaker is a better way to go...I'm not looking forward to getting the bolt of lightning shock from the AICD. Of course, that would be better than the outcome. It's just really scary. I can't remember if you were dx with cardiac sarcoid or if the CHF happened b/c of something else. I'm especially "fluffy" after 2+ yrs on steroids every day...yikes! Did they tell you to not raise your left arm over your head for 6 weeks? Do they sew the wires in place? Call me "chicken big".Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: Hi Becky,I have the newest congestive heart failure pacemaker. (I have had (2) different pacemakers) It is anInsyncIII, I jokingly call it the boyband pacer. Itis a 3 wire pacer. Pacer's do shock, they just

don'tpack the jolt a difiberlater does. When I first hadit I did notice it, and according to myelectrophysiologist I am extremely sensitive to theslightest change in settlings. When I got the firstpacemaker, the medtronic kappa 700, the next morningwhen I woke up after the surgery I felt like I hadbeen resurrected from the dead. I felt 16 again (Iwas 41). I am now 100% paced; even when I was on apacer that worked only when it was needed i was at 97%use. It has been a true Godsend to me, had I notgotten it I can say with full conviction I would havebeen in the cemetary for quite a while by now. Myheart has been so miswired by sarc it doesn't knowwhat to do. I have had heart monitors pickup myheartrate anywhere from 13 bpm to 235bpm (needless tosay the ER staff wasn't happy). Some of my holtermonitor readings for the bradycardia are worse. Getting a pacemaker was one of the best things thatever

happened to me, and other than the Lord is whatkeeps me alive now.It's not a bad surgery, your just a little sore fromthem making the pocket that the pacer goes into. Oncethe soreness goes away, your good to go.Take care of yourself & make sure you ask them to putplenty of length on the wires, especially if yourchesty at all. I'm not being funny, it seems to makea difference.///////////Connie --- Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote:> Connie,> I'm going to see a dr next week about an inplantable> defibulator...is that what you have or is it> strictly a pacemaker? How has it been for you with> it? Do you feel it shock your heart and if so how> often? If is strictly a pacemaker it wouldn't shock> so just was wondering...thanks, Becky> > > > > >

> > > f> > Connie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: > > Joan,> > Watch the sudden "sleeps". That was my main> symptom for heart sarc. I have a pacer (Insync III)> because of it///Connie> > pickstands (AT) aol (DOT) com wrote:> OMG, ! I cannot believe your own PCP> insinuates such!!! ... and one Lortab at nite for> our type of bone pain?!? ... what a joke!!! I hope> it is the 10/500 mg tabs at least!?!> > I take 4 methadone tabs a day; I only take Lortab> for breakthrough pain ... but I am prescribed 4 per> day if necessary. and the MTX is big on helping to> control the pain as well. If I skip the MTX for a> week ... which I do if I need to see a dr. in the> city that week, well, I have to take it as soon

as> I get home from my appt. ... my sarc. spec.> explained that every person has his/her own time> period to be without the MTX ... mine is approx. 4> days ... if I don't take it on Sunday as normally> scheduled, then by Thursday, I am in trouble.> > Anyway, do you have a Pain Specialist? They truly> do understand pain and are really very empathetic to> those with chronic pain .. that is why they have> chosen this field. It is actually a "Pioneer's"> field for practice right now. Every pain dr. I've> dealt with at the office I go to (there are about 10> doc's and 2 nurse practitioners) are striving to get> each person that comes into their office out of pain> and then keep them that way. They are extremely> careful regarding the narcotics though ... random> urine/blood tests -- which everyone is subjected to> at some point, lots of contracts ...

you have to> sign a contract to see a psychiatrist several times> a year so they are as confident as possible you are> not suicidal, sign a contract stating you will use> the one pharmacy you have named on their chart, and> a few others that I forget right now. If you lose> your script or meds, you don't get a refill until> next month. If you lose them more than once, your> on your way to> being released.> > I take a lot of medications too ... about 10 also.> I stopped taking one of them, thinking I could do> without it, but I think I need to start again.> > That is terrible! what happens to you from the> Paxil!!! I wonder if it is the Paxil that is> causing me to have these strange episodes. My> father heard the kitchen sink water running for a> very long time ... I was only washing a few dishes. > He found me with my head in the

sink! ... he woke me> up ... this occurred two more times!> > I have episodes where I will be wide awake; then> suddenly asleep. There are times when am articulate> but telling "stories" or responding to someone with> a completely unrelated answer to their question. I> have episodes where I completely forget what I am> trying to say to someone. Sometimes I recall these> and sometimes I completely forget it all until> someone tells me.> > I find it really, really disturbing that I no> longer control my own brain. I am never left alone> ... which is annoying, too ... but, I understand it> is necessary. I get sad when I think about taking a> drive by myself, opening the sunroof, listening to> good, loud music...I really miss that.> > Oh well ... I really hope you find another, more > understanding PCP!!! I have a difficult time

in> understanding that ... I now relaize I am very lucky> with my doctors ... they are all pretty much tuned> in to what is happening with me ... I think they are> curious as to where this will progress and what> works and doesn't work as well.> > Good Luck to You, Sweetie!,> > Hugs and Prayers,> Joan> >----------------------------------------------------------> > > In a message dated 8/20/2006 2:00:58 P.M. Eastern> Standard Time, topdat (AT) bellsouth (DOT) net writes:> Thanks Ruth, I know you're> right, its not my first fight but dang I'm getting> really very tired of all of this, not mentally tired> I mean physically tired..My PCP isn't supportive nor> does she make any bones about the fact that she's> not gonna do anything for me, why am I

staying? > Well for just a few more days, she is pregnant, and> is going on maternity leave, she has it in my chart> that I'm just seeking medication, which is stupid> because what I take is like B/P meds, fluid tablets,> imuran, a multivitamin, Calcium, a few other over> the counter meds that she's ordered. I do take one> Lortab at night for bone pain, but that's it...> because I'm on more than 10 medications that "SHE'S"> ordered, I just want to take medications just to be> taking something.. HOW STUPID!!! This is the same> person that told me that if I didn't agree to take> Paxil that there wasn't anything thing she could do> for me. I bet she forgot that.. Well I took it for a> short while,> my sleep apnea doctor says that's why I'm getting> up in my sleep and waking up in different locations,> I even wrecked my wheelchair one night in my

sleep> and woke up due to the crash.> > I won't give up, I have a 16 year old son that> needs me right now, but I'm telling ya if it wasn't> for him, I don't know..> > Thanks again,> > > -- Re: Procrit Help> > > Dear ,> Getting the medications we need is so incredible> frustrating. DON"T GIVE UP! KEEP FIGHTING. Even> though the drug company says they won't give you the> drug because you have insurance ... apply anyway as> special circumstances. My insurance denied> Remicade for me and I went to the drug company and> got it approved for 6 months. Sorry I can help you> with

Medicare D as I don't have it.> It would be so wonderful if some big shot in the> drug industry would realize that if they gave us the> drugs we need they would be saving huge amonts of> money by keeping us healthy!!! (well healthier) > WHAT **** & ^%$#% & *** idiots they are!! > I understand how difficult it is to seek a new> primary care doctor also. I shutter at the thought> of having to explain my medical history to just one> more doctor!!!....I don't like my PC Doc (not that> she isn't supportive of me ..I just don't click with> her) but she has wonderful nurse practioners and I> only see them. If they were to move practices I'd> go with them.> PLEASE don't give up....keep looking for a way to> get this medication!!> ttfn> Ruth> > > > >> > Hey friends, I need to know if any of you know if> any of you can tell > > me what to do to get my Procrit approved through> my Medicare D > > prescription plan. For the first time in 5 years I> finally find a > > medicine that was giving me some hope as to> feeling better, and what > > happens Medicare snatches it right from under me.> And the pain in the > > arse doctor Dendy just tells me that I'll have to> pay for it out of > > pocket if I decided that "I want to continue the> medication" I don't > > really see that there is no choice.. its not a> matter of me just > > wanting to continue the medication, its the fact> that I need the > > medication. I'm

ready to "KILL HER" and I promise> you === message truncated ===__________________________________________________________Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates (http://voice.yahoo.com) Get your email and see which of your friends are online - Right on the new Yahoo.com __________________________________________________