Re: A Fib Foundation Patient Day.

[Guest guest]

Rich, thanks for the helpful report and what a nice anniversary present for

our group to be recognized!

Brenta

A Fib Foundation Patient Day.

>

>> 9.) Our suppport group was recognized as the most comprehensive support

>> group

> on the web. They said we do a excellent job supporting each other and

> keeping

> each other informed of advancements in drug therapies and procedures. We

> have

> the Atrial Fibrillation's endorsement on their web page, under links. They

> said we are a mature and responsible group. Good job by all! At-A-Boys for

> everyone!

> Rich O

>

>

>

>

[Guest guest]

Just for background Rich -- who impressed you, and who didn't?

Lew

At 11:10 AM 10/25/2004 -0400, you wrote:

>Good day to all. I attended the A Fib Foundations annual patient day Oct. 23,

>in Boston. It was staffed by the Mass. General Hospital's Arrhythmia Service

>Cardiologists, EP's and Research Scientists. It was well attended by A

>Fibbers.

>

>The forum is for new afibbers and others looking at new procedures and

>medicine.

>They have an excellent Q & A session after each group of presentations. You can

>ask anything you want and they will answer it.

>Area's covered were Drug therapy, Ablations and Pacemakers. The foundation

>said they will post the meeting notes on their web page. I also had the

>pleasure

>of meeting a couple of our AF members as well. Go Red Sox! Right Rob!

>Briefly;

>1.)There are approximately three million Americans with AF. The Boomer

>generation will add to this number significantly over the next ten years.

>2.) Sophia Loren and Ellen DeGeneres have AF.

>3.) Heart remodeling happens with prolonged AF. It becomes the norm in time

>and NSR becomes harder to achieve.

>4.) Aspirin Vs Coumidin. Patients with healthy hearts? Aspirin is OK.

>Patients with other heart ailments, diabetes and other health problems

>should take

>coumidin.

>5.) Triggers. The consensus was that alchohol and stress are triggers.

>Caffine and our other triggers have no foundation of fact. BUT, they all

>said, like

>we say, it's a personal thing and do what works for you.

>6.) New Drugs. There are many in the works, but nothing ground breaking at

>this point.

>7.) They did go into detail about the various beta blockers, calcium channel

>blockers and arrythmia drugs. More for those new to AF.

>8.) PVA's. Are a complicated procedure, because your trying work catheters to

>specific location, in a beating heart.

>New area's are Magnetic Navigation, Robotic Navigation and Image Guided

>Therapy. All making use of very advanced computer technology. Currently,

>Mass.

>General and three other medical centers in the world have this technology.

>It is

>designed to better locate the foci and position the catheter and mapping

>catheters.

>Notes about all of this will be availible at their web address

>www.affacts.org shortly.

>

>9.) Our suppport group was recognized as the most comprehensive support group

>on the web. They said we do a excellent job supporting each other and keeping

>each other informed of advancements in drug therapies and procedures. We have

>the Atrial Fibrillation's endorsement on their web page, under links. They

>said we are a mature and responsible group. Good job by all! At-A-Boys for

>everyone!

>Rich O

>

>

>

>

[Guest guest]

> New area's are Magnetic Navigation, Robotic Navigation and Image

Guided

> Therapy. All making use of very advanced computer technology.

Currently, Mass.

> General and three other medical centers in the world have this

technology. It is

> designed to better locate the foci and position the catheter and

mapping

> catheters.

> Rich O

>

................................

Beaumont Hospital in Michigan has purchased and is in the process of

installing Magnetic navigation.

P <MI>

[Guest guest]

In a message dated 10/27/04 6:28:09 AM Eastern Daylight Time,

john.christmas2@... writes:

> Thankyou for attending this convention and giving us the

> encouragement we need regardless from where we are located. I'm from

> the UK.

> If you intend to go to anymore conventions in the future, could you

> perhaps let us know in case any of us would like to go as well.

> .

>

Hi .

I announced the Patient day a month before and asked for question from

anyone. A few responded. But! I will make a better effort next time. Thanks for

bringing it to my attention .

Rich O

Across the pond

[Guest guest]

--Hi Rich,

Thankyou for attending this convention and giving us the

encouragement we need regardless from where we are located. I'm from

the UK.

If you intend to go to anymore conventions in the future, could you

perhaps let us know in case any of us would like to go as well.

.

- In AFIBsupport , celtic8586@a... wrote:

> Good day to all. I attended the A Fib Foundations annual patient

day Oct. 23,

> in Boston. It was staffed by the Mass. General Hospital's

Arrhythmia Service

> Cardiologists, EP's and Research Scientists. It was well attended

by A

> Fibbers.

>

> The forum is for new afibbers and others looking at new procedures

and

> medicine.

> They have an excellent Q & A session after each group of

presentations. You can

> ask anything you want and they will answer it.

> Area's covered were Drug therapy, Ablations and Pacemakers. The

foundation

> said they will post the meeting notes on their web page. I also

had the pleasure

> of meeting a couple of our AF members as well. Go Red Sox! Right

Rob!

> Briefly;

> 1.)There are approximately three million Americans with AF. The

Boomer

> generation will add to this number significantly over the next ten

years.

> 2.) Sophia Loren and Ellen DeGeneres have AF.

> 3.) Heart remodeling happens with prolonged AF. It becomes the

norm in time

> and NSR becomes harder to achieve.

> 4.) Aspirin Vs Coumidin. Patients with healthy hearts? Aspirin is

OK.

> Patients with other heart ailments, diabetes and other health

problems should take

> coumidin.

> 5.) Triggers. The consensus was that alchohol and stress are

triggers.

> Caffine and our other triggers have no foundation of fact. BUT,

they all said, like

> we say, it's a personal thing and do what works for you.

> 6.) New Drugs. There are many in the works, but nothing ground

breaking at

> this point.

> 7.) They did go into detail about the various beta blockers,

calcium channel

> blockers and arrythmia drugs. More for those new to AF.

> 8.) PVA's. Are a complicated procedure, because your trying work

catheters to

> specific location, in a beating heart.

> New area's are Magnetic Navigation, Robotic Navigation and Image

Guided

> Therapy. All making use of very advanced computer technology.

Currently, Mass.

> General and three other medical centers in the world have this

technology. It is

> designed to better locate the foci and position the catheter and

mapping

> catheters.

> Notes about all of this will be availible at their web address

> www.affacts.org shortly.

>

> 9.) Our suppport group was recognized as the most comprehensive

support group

> on the web. They said we do a excellent job supporting each other

and keeping

> each other informed of advancements in drug therapies and

procedures. We have

> the Atrial Fibrillation's endorsement on their web page, under

links. They

> said we are a mature and responsible group. Good job by all! At-A-

Boys for

> everyone!

> Rich O

>

>

>

>

[Guest guest]

In a message dated 10/27/04 6:27:45 AM Eastern Daylight Time,

john.christmas2@... writes:

In AFIBsupport , celtic8586@a... wrote:

> Good day to all. I attended the A Fib Foundations annual patient

day Oct. 23,

> in Boston. It was staffed by the Mass. General Hospital's

Arrhythmia Service

> Cardiologists, EP's and Research Scientists. It was well attended

by A

> Fibbers.

>

> The forum is for new afibbers and others looking at new procedures

and

> medicine.

> They have an excellent Q & A session after each group of

presentations. You can

> ask anything you want and they will answer it.

> Area's covered were Drug therapy, Ablations and Pacemakers. The

foundation

> said they will post the meeting notes on their web page. I also

had the pleasure

> of meeting a couple of our AF members as well. Go Red Sox! Right

Rob!

> Briefly;

> 1.)There are approximately three million Americans with AF. The

Boomer

> generation will add to this number significantly over the next ten

years.

> 2.) Sophia Loren and Ellen DeGeneres have AF.

> 3.) Heart remodeling happens with prolonged AF. It becomes the

norm in time

> and NSR becomes harder to achieve.

> 4.) Aspirin Vs Coumidin. Patients with healthy hearts? Aspirin is

OK.

> Patients with other heart ailments, diabetes and other health

problems should take

> coumidin.

> 5.) Triggers. The consensus was that alchohol and stress are

triggers.

> Caffine and our other triggers have no foundation of fact. BUT,

they all said, like

> we say, it's a personal thing and do what works for you.

> 6.) New Drugs. There are many in the works, but nothing ground

breaking at

> this point.

> 7.) They did go into detail about the various beta blockers,

calcium channel

> blockers and arrythmia drugs. More for those new to AF.

> 8.) PVA's. Are a complicated procedure, because your trying work

catheters to

> specific location, in a beating heart.

> New area's are Magnetic Navigation, Robotic Navigation and Image

Guided

> Therapy. All making use of very advanced computer technology.

Currently, Mass.

> General and three other medical centers in the world have this

technology. It is

> designed to better locate the foci and position the catheter and

mapping

> catheters.

> Notes about all of this will be availible at their web address

> www.affacts.org shortly.

>

> 9.) Our suppport group was recognized as the most comprehensive

support group

> on the web. They said we do a excellent job supporting each other

and keeping

> each other informed of advancements in drug therapies and

procedures. We have

> the Atrial Fibrillation's endorsement on their web page, under

links. They

> said we are a mature and responsible group. Good job by all! At-A-

Boys for

> everyone!

> Rich O

**********Thanks Rich for all the help and knowledge you provide the group.

Eventually those who find a fix leave the group or just disappear. It's nice to

have those with knowledge and information to be a continued part of our

group. I don't post often but I do read all the posts and take in everyone's

views

and information. I see the newcomers and how frightened they are and after

they get a response from someone here they relax and learn as we do take it one

day at a time and try to eliminate the stress that comes with afib. Thank

you all for being a part of our knowledgeable and friendly group.

a in Massachusetts NSR Sotalol 80mg Warfarin 4mg

[Guest guest]

In a message dated 10/27/04 11:40:09 AM Eastern Daylight Time,

pal22222@... writes:

> Thank

> you all for being a part of our knowledgeable and friendly group.

> a in Massachusetts NSR Sotalol 80mg Warfarin 4mg

>

Thanks a.

Go Sox! maybe tonite. ooooooooh I shouldn't have said that. (Sox mentality!)

Rich O

[Guest guest]

skubdoo@... writes:

>

> >Is this statement correct or am I reading it wrong :

> Patients with healthy hearts? Aspirin is

> OK.

I believe the statement is correct. When I was in the hospital in August to

start Tikosyn, I was told that I can continue to take 325mg aspirin a day, and

that I do not need to consider any other clot control medication as long as

my heart ultrasound continues to show that my heart is completely healthy. I

am 57 and have had paroxysmal atrial fibrillation since Oct. of 1996. Sandy

>

>

[Guest guest]

In a message dated 10/28/04 8:05:15 AM Eastern Daylight Time,

skubdoo@... writes:

> >Is this statement correct or am I reading it wrong:

> Patients with healthy hearts? Aspirin is

> OK.

>

Hi there.

At the seminar, it was stated that those with AF but have no other heart

problems or other major medical problems such as diabetes, aspirin was OK. If

you

don't fall under that definition, coumidin is prescribed.

Rich O

[Guest guest]

In a message dated 10/28/04 9:00:01 AM Eastern Daylight Time,

celtic8586@... writes:

At the seminar, it was stated that those with AF but have no other heart

problems or other major medical problems such as diabetes, aspirin was OK. If

you

don't fall under that definition, coumidin is prescribed.

Rich O

********************Rich

OK I know the posts are going to fly with this one but.....I disagree 100%

with what they are saying about Aspirin being OK if you have no underlying

conditions. I threw a clot to my eye and now have permanent damage. I was using

the adult Aspirin a day theory. After I threw the clot I was told by Doctors

at, Mass Eye and Ear, Newton Wellesley Hospital, New England Medical and many

Doctors that the statistics say you should have been OK, should have been. I

went against statistics and the odds as I threw a clot having been in afib 9

hours for my longest attack. I don't have any underlying heart conditions so I

should have been safe. I was not and they said its just a statistical theory

that you won't pass a clot and I should have been safe but I was immediately put

on Warfarin once the clot was thrown. I was lucky it went to my eye and not

my head. I think because I was popping in and out so many times a month

(Twice) that this might have been a factor in throwing the clot? I would agree

if I

only went into afib once or twice a year I probable would be safe as I know I

have had Afib since my early twenties (not diagnosed till I was 47) so I

never even took an aspirin a day all those years. In those days it was an

attack

once a year or every 5 years. As of seven months ago I was having six or more

attacks over a few months that were self or chemical converted. From what IM

reading now I am susceptible to throwing a clot on the conversion part of

afib? I think so many even though they were relatively short attacks did it to

me? Just my two cents but I now know I will be on Warfarin as long as IM

fibbing.++++Just a side note also I was taking non coated aspirin for a few

years

and the hospital told me to take a coated aspirin. I threw the clot while

taking the coated aspirin and now IM reading about coated aspirin Vs non coated

and its effectiveness....another topic for discussion and theory

a in Massachusetts NSR 7 months Sotalol 80mg x 2 Warfarin 4mg day

[Guest guest]

Re: Re: A Fib Foundation Patient Day.

In a message dated 10/27/04 6:27:45 AM Eastern Daylight Time,

john.christmas2@... writes:

In AFIBsupport , celtic8586@a... wrote:

> Good day to all. I attended the A Fib Foundations annual patient

day Oct. 23,

> in Boston. It was staffed by the Mass. General Hospital's

Arrhythmia Service

> Cardiologists, EP's and Research Scientists. It was well attended

by A

> Fibbers.

>

>Is this statement correct or am I reading it wrong :

Patients with healthy hearts? Aspirin is

OK.

[Guest guest]

Well Sandy

I`m 53 and chronic, and I would rather not take warfarin if I dont have to....me

thinks I will look into this a little further.

Regards

Re: Re: A Fib Foundation Patient Day.

skubdoo@... writes:

>

> >Is this statement correct or am I reading it wrong :

> Patients with healthy hearts? Aspirin is

> OK.

I believe the statement is correct. When I was in the hospital in August to

start Tikosyn, I was told that I can continue to take 325mg aspirin a day, and

that I do not need to consider any other clot control medication as long as

my heart ultrasound continues to show that my heart is completely healthy. I

am 57 and have had paroxysmal atrial fibrillation since Oct. of 1996. Sandy

>

>

[Guest guest]

This is quite good news for some of us, as it is one less poison to take.

I can see my gp`s face now......

Regards

Re: Re: A Fib Foundation Patient Day.

In a message dated 10/28/04 8:05:15 AM Eastern Daylight Time,

skubdoo@... writes:

> >Is this statement correct or am I reading it wrong:

> Patients with healthy hearts? Aspirin is

> OK.

>

Hi there.

At the seminar, it was stated that those with AF but have no other heart

problems or other major medical problems such as diabetes, aspirin was OK. If

you

don't fall under that definition, coumidin is prescribed.

Rich O

[Guest guest]

I am taking coumadin and had a suspected TIA a couple of weeks ago.

They could not find anything on the c scan at the ER but I could not

speak coherently for about 20 seconds and my mouth was like mush.

The neurologist says that they can not be sure it was a TIA, but the

symtoms sound like it. This happened in spite of taking coumadin. So

now I also take a baby aspirin and the coumadin for extra safety. I

AM GRATEFUL IT PASSED SO QUICKLY AND WAS NOT WORSE! Thank GOD!!

Mandy of CA

[Guest guest]

Hi a,

he's a flying post

First of all, I'm very sorry to hear you had trouble on aspirin.

here's a hypothetical....

take two very large groups of people with AF

give everyone in the first group warfarin

give everyone in the second group either warfarin or aspirin as deemed

appropriate

with current research

after a year or two count the number of people in each group who've had a stroke

(both embolic and hemorrhagic). I think you might decide group one is not such a

good choice. It is a real pain coming out on the wrong side of statistics.

The best we can do is improve on the selection process or find a drug that

protects from/reduces stroke risk without introducing it's own risks. Warfarin

is

not the cure all some people believe it to be. Many people taking warfarin will

still

have a higher stroke risk than the fortunate low risk group of AFers taking

aspirin.

It would be so much easier if the docs could say everyone with AF should take

warfarin but they don't, and they don't for very good reasons. The numbers are

what they are I'm afraid.

I think what's particularly hard about taking aspirin is that those who are

unfortunate to have a stroke are left with the 'what if i had been on warfarin?'

question. Some people taking aspirin will have a stroke, some people taking

warfarin will have a stroke. The best we can expect from the docs is to make the

total number of strokes as small as possible. Sadly, this number is still pretty

meaningless for all the people on the wrong side of the statistics.

I hope some of this makes sense.

--

D

[Guest guest]

Mandy,

I'm grateful for you too. How scarey!

Last time I was in ER for Afib, they made me take 2 baby aspirins

even though I was on Coumadin because they said they acted on the

platelets of the blood in a different way than Coumadin.

Debbi, OU Alum in OKC

>

> I am taking coumadin and had a suspected TIA a couple of weeks

ago.

> They could not find anything on the c scan at the ER but I could

not

> speak coherently for about 20 seconds and my mouth was like mush.

>

> The neurologist says that they can not be sure it was a TIA, but

the

> symtoms sound like it. This happened in spite of taking coumadin.

So

> now I also take a baby aspirin and the coumadin for extra safety. I

> AM GRATEFUL IT PASSED SO QUICKLY AND WAS NOT WORSE! Thank GOD!!

>

> Mandy of CA