Re: afib 24/7 Question?-/Trudy

[Guest guest]

Sorry for the delay in responding to questions.

wrote: " How were you able to sleep at night with an irregular pulse?

Or were

you feeling just a rapid pulse? Its just amazes me. Also is the

feeling of Afib the same as aterial flutter? I am so new to all this

stuff. "

And Trudy wrote: " My life comes to a dead stop

when I'm in afib. Even walking across a room has me holding onto

walls. "

& Trudy: Afib 24/7 should not be confused with paroxsymal

afib that comes and goes. When I was first diagnosed, I went to the

ER because I literally could not walk 3 steps without stopping to

rest. But with rate control, the afib did not bother me that much.

I was able to walk 2 miles at a brisk pace without getting short of

breath. And sleeping was no problem. I simply was unaware of my

afib except when I felt my pulse or took my blood pressure and

listened to those silly beats. My GP doctor would comment on taking

my pulse that I still had that " fascinatin' rhythm. " ( - No,

flutter and afib feel different. Flutter gives you a regular, but

fast heart beat. In fact, I physically felt worse with flutter than

I did with afib. Tired much more easily. Rate control was less

effective with flutter than with afib. Just a little exercise would

boost my heart rate to 150 bpm. Both afib and aflutter were 24/7

with me.)

The point is that with chronic/persistent/permanent afib you can

treat the symptoms much better than you can with paroxsymal afib.

Control the symptoms -- i.e. rapid heart rate and associated

problems -- and you can live a fairly normal life. Granted, my

energy level was not the same as in nsr. But the difference was

probably no more than 15 - 25 percent.

Does everybody experience the same thing? I'm sure not. But chronic

afib 24/7 can be treated successfully for most of us. Hope this

clears up any confusion I may have caused. If not, ask away and I'll

try to have an answer.

Ed in VA

[Guest guest]

Sorry for the delay in responding to questions.

wrote: " How were you able to sleep at night with an irregular pulse?

Or were

you feeling just a rapid pulse? Its just amazes me. Also is the

feeling of Afib the same as aterial flutter? I am so new to all this

stuff. "

And Trudy wrote: " My life comes to a dead stop

when I'm in afib. Even walking across a room has me holding onto

walls. "

& Trudy: Afib 24/7 should not be confused with paroxsymal

afib that comes and goes. When I was first diagnosed, I went to the

ER because I literally could not walk 3 steps without stopping to

rest. But with rate control, the afib did not bother me that much.

I was able to walk 2 miles at a brisk pace without getting short of

breath. And sleeping was no problem. I simply was unaware of my

afib except when I felt my pulse or took my blood pressure and

listened to those silly beats. My GP doctor would comment on taking

my pulse that I still had that " fascinatin' rhythm. " ( - No,

flutter and afib feel different. Flutter gives you a regular, but

fast heart beat. In fact, I physically felt worse with flutter than

I did with afib. Tired much more easily. Rate control was less

effective with flutter than with afib. Just a little exercise would

boost my heart rate to 150 bpm. Both afib and aflutter were 24/7

with me.)

The point is that with chronic/persistent/permanent afib you can

treat the symptoms much better than you can with paroxsymal afib.

Control the symptoms -- i.e. rapid heart rate and associated

problems -- and you can live a fairly normal life. Granted, my

energy level was not the same as in nsr. But the difference was

probably no more than 15 - 25 percent.

Does everybody experience the same thing? I'm sure not. But chronic

afib 24/7 can be treated successfully for most of us. Hope this

clears up any confusion I may have caused. If not, ask away and I'll

try to have an answer.

Ed in VA

[Guest guest]

Sorry for the delay in responding to questions.

wrote: " How were you able to sleep at night with an irregular pulse?

Or were

you feeling just a rapid pulse? Its just amazes me. Also is the

feeling of Afib the same as aterial flutter? I am so new to all this

stuff. "

And Trudy wrote: " My life comes to a dead stop

when I'm in afib. Even walking across a room has me holding onto

walls. "

& Trudy: Afib 24/7 should not be confused with paroxsymal

afib that comes and goes. When I was first diagnosed, I went to the

ER because I literally could not walk 3 steps without stopping to

rest. But with rate control, the afib did not bother me that much.

I was able to walk 2 miles at a brisk pace without getting short of

breath. And sleeping was no problem. I simply was unaware of my

afib except when I felt my pulse or took my blood pressure and

listened to those silly beats. My GP doctor would comment on taking

my pulse that I still had that " fascinatin' rhythm. " ( - No,

flutter and afib feel different. Flutter gives you a regular, but

fast heart beat. In fact, I physically felt worse with flutter than

I did with afib. Tired much more easily. Rate control was less

effective with flutter than with afib. Just a little exercise would

boost my heart rate to 150 bpm. Both afib and aflutter were 24/7

with me.)

The point is that with chronic/persistent/permanent afib you can

treat the symptoms much better than you can with paroxsymal afib.

Control the symptoms -- i.e. rapid heart rate and associated

problems -- and you can live a fairly normal life. Granted, my

energy level was not the same as in nsr. But the difference was

probably no more than 15 - 25 percent.

Does everybody experience the same thing? I'm sure not. But chronic

afib 24/7 can be treated successfully for most of us. Hope this

clears up any confusion I may have caused. If not, ask away and I'll

try to have an answer.

Ed in VA

[Guest guest]

In a message dated 7/31/2004 6:42:48 PM Pacific Daylight Time, esmock@...

writes:

> The point is that with chronic/persistent/permanent afib you can

> treat the symptoms much better than you can with paroxsymal afib.

> Control the symptoms -- i.e. rapid heart rate and associated

> problems -- and you can live a fairly normal life. Granted, my

> energy level was not the same as in nsr. But the difference was

> probably no more than 15 - 25 percent.

>

>

Ed,

My brother in permanent afib for about thirty years would agree with you.

Once his symptoms (rate) were under control, he was able to live a normal, very

active life. He is eleven years older than I but does things that I, in sinus

most of the time, wouldn't even attempt. His energy level seems very high to

me, and he says he never thinks about being in afib.

in sinus in Seattle

[Guest guest]

In a message dated 7/31/2004 6:42:48 PM Pacific Daylight Time, esmock@...

writes:

> The point is that with chronic/persistent/permanent afib you can

> treat the symptoms much better than you can with paroxsymal afib.

> Control the symptoms -- i.e. rapid heart rate and associated

> problems -- and you can live a fairly normal life. Granted, my

> energy level was not the same as in nsr. But the difference was

> probably no more than 15 - 25 percent.

>

>

Ed,

My brother in permanent afib for about thirty years would agree with you.

Once his symptoms (rate) were under control, he was able to live a normal, very

active life. He is eleven years older than I but does things that I, in sinus

most of the time, wouldn't even attempt. His energy level seems very high to

me, and he says he never thinks about being in afib.

in sinus in Seattle

[Guest guest]

In a message dated 7/31/2004 6:42:48 PM Pacific Daylight Time, esmock@...

writes:

> The point is that with chronic/persistent/permanent afib you can

> treat the symptoms much better than you can with paroxsymal afib.

> Control the symptoms -- i.e. rapid heart rate and associated

> problems -- and you can live a fairly normal life. Granted, my

> energy level was not the same as in nsr. But the difference was

> probably no more than 15 - 25 percent.

>

>

Ed,

My brother in permanent afib for about thirty years would agree with you.

Once his symptoms (rate) were under control, he was able to live a normal, very

active life. He is eleven years older than I but does things that I, in sinus

most of the time, wouldn't even attempt. His energy level seems very high to

me, and he says he never thinks about being in afib.

in sinus in Seattle

[Guest guest]

> The point is that with chronic/persistent/permanent afib you can

treat the symptoms much better than you can with paroxsymal afib.

Control the symptoms -- i.e. rapid heart rate and associated

problems -- and you can live a fairly normal life. .... Does

everybody experience the same thing? I'm sure not. But chronic afib

24/7 can be treated successfully for most of us.

I still don't think this is necessarily the case. I think the reason

I am pointing this out is the people who are debilitated by afib

unfortunately sometimes run across the " live with it " doctors who are

so unhelpful and demoralizing. Blanket statements that most people

in afib all the time are nearly as happy as clams add to this. I'd

like to see some actual data, since my own instances of prolonged

afib have been miserable.

[Guest guest]

> I still don't think this is necessarily the case. I think the

reason

> I am pointing this out is the people who are debilitated by afib

> unfortunately sometimes run across the " live with it " doctors who

are

> so unhelpful and demoralizing. Blanket statements that most

people

> in afib all the time are nearly as happy as clams add to this. I'd

> like to see some actual data, since my own instances of prolonged

> afib have been miserable.

*******

Trudy, I definitely side with you on this one. I dread going into

chronic, persistent, permanent Afib, whatever the particular doctor

calls it, and the terminology can be so confusing. I have read

reports from people who said that they lived easily with their full

time afib, until they had an ablation or otherwise got out of it. And

only then would they admit that being in NSR is so far preferable.

[Guest guest]

> From: trudyjhagain

> Date: 8/1/04, 8:38 AM -0400

>

>

> > The point is that with chronic/persistent/permanent

> > afib you can treat the symptoms much better than you

> > can with paroxsymal afib. Control the symptoms --

> > i.e. rapid heart rate and associated problems --

> > and you can live a fairly normal life. .... Does

> > everybody experience the same thing? I'm sure not.

> > But chronic afib 24/7 can be treated successfully

> > for most of us.

>

>

> I still don't think this is necessarily the case.

Considering only the management, it certainly is

easier to treat the symptoms of always present A-fib

than PA-fib: rate control drugs used to bring down

the HR to an acceptable value may lower the HR too

much in sinus rhythm, maybe requiring to change the

drugs.

[Guest guest]

> From: trudyjhagain

> Date: 8/1/04, 8:38 AM -0400

>

>

> > The point is that with chronic/persistent/permanent

> > afib you can treat the symptoms much better than you

> > can with paroxsymal afib. Control the symptoms --

> > i.e. rapid heart rate and associated problems --

> > and you can live a fairly normal life. .... Does

> > everybody experience the same thing? I'm sure not.

> > But chronic afib 24/7 can be treated successfully

> > for most of us.

>

>

> I still don't think this is necessarily the case.

Considering only the management, it certainly is

easier to treat the symptoms of always present A-fib

than PA-fib: rate control drugs used to bring down

the HR to an acceptable value may lower the HR too

much in sinus rhythm, maybe requiring to change the

drugs.

[Guest guest]

> From: trudyjhagain

> Date: 8/1/04, 8:38 AM -0400

>

>

> > The point is that with chronic/persistent/permanent

> > afib you can treat the symptoms much better than you

> > can with paroxsymal afib. Control the symptoms --

> > i.e. rapid heart rate and associated problems --

> > and you can live a fairly normal life. .... Does

> > everybody experience the same thing? I'm sure not.

> > But chronic afib 24/7 can be treated successfully

> > for most of us.

>

>

> I still don't think this is necessarily the case.

Considering only the management, it certainly is

easier to treat the symptoms of always present A-fib

than PA-fib: rate control drugs used to bring down

the HR to an acceptable value may lower the HR too

much in sinus rhythm, maybe requiring to change the

drugs.

[Guest guest]

> In a message dated 8/1/2004 12:16:53 PM Pacific Daylight Time,

> susanr20z03@y... writes:

My older brother who has been in permanent afib for a long time says

that he would

> certainly rather be in sinus and urges me to try to stay in sinus.

However, he

> has managed to live a normal life with a positive attitude while in

afib since

> his symptoms have been controlled by medication..... If I ever

> find myself in irreversible, permanent afib, I only hope that I

will be able through a positive attitude to emulate my brother's

acceptance of what he can't change. I'm sure, though, that I would

never reach the point of saying that I prefer being in afib!

*********

Thanks, . for reminding me about your brother's story. I hope

that soon, being in afib all the time will not be an option for any

of us, and that afib will become a very treatable condition, no

matter how long a person has been in it. I read that Dr. Pappone, in

Italy, says that his ablation procedure is just as effective on

permanent afib as on paroxsysmal.

Thanks for all your contributions, , I always enjoy hearing from

you.

[Guest guest]

> In a message dated 8/1/2004 12:16:53 PM Pacific Daylight Time,

> susanr20z03@y... writes:

My older brother who has been in permanent afib for a long time says

that he would

> certainly rather be in sinus and urges me to try to stay in sinus.

However, he

> has managed to live a normal life with a positive attitude while in

afib since

> his symptoms have been controlled by medication..... If I ever

> find myself in irreversible, permanent afib, I only hope that I

will be able through a positive attitude to emulate my brother's

acceptance of what he can't change. I'm sure, though, that I would

never reach the point of saying that I prefer being in afib!

*********

Thanks, . for reminding me about your brother's story. I hope

that soon, being in afib all the time will not be an option for any

of us, and that afib will become a very treatable condition, no

matter how long a person has been in it. I read that Dr. Pappone, in

Italy, says that his ablation procedure is just as effective on

permanent afib as on paroxsysmal.

Thanks for all your contributions, , I always enjoy hearing from

you.

[Guest guest]

In a message dated 8/1/04 5:01:53 PM Pacific Daylight Time,

susanr20z03@... writes:

<< read that Dr. Pappone, in

Italy, says that his ablation procedure is just as effective on

permanent afib as on paroxsysmal.

Thanks for all your contributions, , I always enjoy hearing from

you. >>

Thanks, . I think it is the length of time that my brother has been in

permanent afib, not the permanent afib itself, that inspired his doctor to say

that ablation, cardioversion, and surgery would be useless for him. He

doesn't know exactly how long he has been in permanent afib, but he suspects it

has

been at least since the 80's and possibly the 70's, when he was informed

during an exam that he had " arrhythmia. " Unfortunately that is as specific as

they could be in describing it at that time. I know that afib was known to

medicine at that time because I have read that Deke Slayton, the astronaut, was

diagnosed with afib in the late sixties. Anyway, my brother is not sure whether

he was in permanent or paroxysmal afib in the 70's, but he is sure that he had

afib even before that. I guess his doctor thinks that my brother's

electrical system has been remodeled by now, whether that is true or not.

After 20+ years of paroxysmal afib, I am apparently not remodeled yet because

I am in sinus most of the time, and my E.P. tells me that I would probably be

in permanent afib by now if I were going to be. I have never been in

permanent afib. Part of me wishes that my brother would be evaluated for

ablation, or

at least have an E.P. study, but he won't hear of it. Although he would

rather be in sinus, he " gets along just fine, " according to him, and doesn't

think it would be worth the risk to undergo ablation or any other procedure. He

says that afib doesn't stop him from doing anything he wants to do, but he has

good days and bad days. On some days he feels more weakness in his

extremities, due to the reduced pumping of the blood, and that is his main

reminder that

he is in afib. He is so active, though, that his heart must be in excellent

condition other than the electrical part. Despite the fact that he can outdo

me, his eleven year younger sister, in any form of exercise, he still urges me

to do everything I can to stay in sinus and beat the family genes for afib.

And, of course, I am trying as hard as I can to do just that. :-)

in sinus in Seattle

[Guest guest]

In a message dated 8/1/04 5:01:53 PM Pacific Daylight Time,

susanr20z03@... writes:

<< read that Dr. Pappone, in

Italy, says that his ablation procedure is just as effective on

permanent afib as on paroxsysmal.

Thanks for all your contributions, , I always enjoy hearing from

you. >>

Thanks, . I think it is the length of time that my brother has been in

permanent afib, not the permanent afib itself, that inspired his doctor to say

that ablation, cardioversion, and surgery would be useless for him. He

doesn't know exactly how long he has been in permanent afib, but he suspects it

has

been at least since the 80's and possibly the 70's, when he was informed

during an exam that he had " arrhythmia. " Unfortunately that is as specific as

they could be in describing it at that time. I know that afib was known to

medicine at that time because I have read that Deke Slayton, the astronaut, was

diagnosed with afib in the late sixties. Anyway, my brother is not sure whether

he was in permanent or paroxysmal afib in the 70's, but he is sure that he had

afib even before that. I guess his doctor thinks that my brother's

electrical system has been remodeled by now, whether that is true or not.

After 20+ years of paroxysmal afib, I am apparently not remodeled yet because

I am in sinus most of the time, and my E.P. tells me that I would probably be

in permanent afib by now if I were going to be. I have never been in

permanent afib. Part of me wishes that my brother would be evaluated for

ablation, or

at least have an E.P. study, but he won't hear of it. Although he would

rather be in sinus, he " gets along just fine, " according to him, and doesn't

think it would be worth the risk to undergo ablation or any other procedure. He

says that afib doesn't stop him from doing anything he wants to do, but he has

good days and bad days. On some days he feels more weakness in his

extremities, due to the reduced pumping of the blood, and that is his main

reminder that

he is in afib. He is so active, though, that his heart must be in excellent

condition other than the electrical part. Despite the fact that he can outdo

me, his eleven year younger sister, in any form of exercise, he still urges me

to do everything I can to stay in sinus and beat the family genes for afib.

And, of course, I am trying as hard as I can to do just that. :-)

in sinus in Seattle

[Guest guest]

-AMEN - thank you!! Kathleen

> ,

>.......... I'm all for any

> nondestructive coping mechanism that works and believe strongly in the

power of positive

> thinking. Therefore, I applaud those in permanent afib who find the right

> medication to control symptoms, accept what they can't change, remain

positive,

> and manage to live a fulfilling, happy life. ............

>

> For the permanent afibbers who have not been fortunate enough to find that

> peace and acceptance of permanent afib I feel great sympathy and hope that

they,

> too, will be able to find the right solution to control symptoms. .........