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Re: New member with A-fib

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In a message dated 10/30/04 6:36:54 PM Eastern Daylight Time,

knotshore@... writes:

> have learned as much or more about A-fib after

> studying the files and messages on your support group

> then I would ever have suspected possible.

>

I have to tell you that Bill Manson's reply to you is perfect. It's a good

one!

As you have noted, you've learned a lot about AF on this board. This is your

personal resource. We are 1400 members strong, all here to do one thing and

one thing only. Help each other. You have taken the first big step. You posted

your story and said " Help me out "

I have a few questions. Do you live in a major metropolitan area? Have you

had a heart work up done? That is: A cardiac MRI and or echocardiogram, a real

stress test, EKG, Holter monitor (30 day).

Are you seeing a cardiologist or an EP (Electrophysiologist) arrhythmia

specialist?

Your general health is?

Also a good site for AF info is the Atrial Fibrillation Foundation.

www.affact.org. It is affiliated with Mass. General Hospital in Boston. A

Harvard

Medical School Teaching Hospital. We are noted as their lay persons support

group

of choice on the AF Foundation web page.

As you have said, you have learned more about AF here than other support

groups. Our group is very focused and hungry for knowledge and ready to share

what we know, have experienced and our successes and failures as well.

Rich O

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Welcome aboard the good ship A-Fib.

I think that there's a progression that you have to work through, both for your

own peace of mind and that of your doctors.

First is being convinced that you really have something wrong, not just weird

sensations in your chest. For me that was probably the hardest one.

Second come the minimally invasive treatments: avoiding triggers (if you're of

the naturopathic mindset), drugs (if you're not) and cardioversions.

Finally, you (and your doctors) make a risk/reward decision regarding more

invasive procedures -- at this point, ablation is the most popular/effective

choice.

In my opinion, trying to rush through the stages is not the right thing to do.

You have to convince yourself that something really is wrong in there. Then you

have to convince yourself that the medical (as opposed to surgical) solution

either doesn't work for you or that the risks of a given drug are more than you

(or your doctors) are willing to risk. It's a slow process.

The good news (such as it is) is the frequently repeated mantra: A-Fib won't

kill you. The bad news is that there may be times that you doubt that the first

statement really is good news. The other good news is that -- while the drugs

seem to be stalled in terms of development -- the more invasive procedures are

making amazing progress.

Hang in there. There is light at the end of the tunnel and there are a lot of

passengers on the train. On the other hand, sometimes it feels like it's a hell

of a long tunnel.

Bill Manson

" If you don't have time to read the comics, you don't have a life. " -- Marcia

G. Kennedy

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Bill: I do not know how to thank you for your advice and support. I

always considered myself someone who who could deal with anything.

Then when the A-fib showed up on top of my knee issue I wondered when

was the good news coming. Thank you and I may call on you for advice

again as I work through the choices that I may have to deal with A-

fib going forward. Again Thanks Jeff Doxzon

> Welcome aboard the good ship A-Fib.

>

> I think that there's a progression that you have to work through,

both for your own peace of mind and that of your doctors.

>

> First is being convinced that you really have something wrong, not

just weird sensations in your chest. For me that was probably the

hardest one.

>

> Second come the minimally invasive treatments: avoiding triggers

(if you're of the naturopathic mindset), drugs (if you're not) and

cardioversions.

>

> Finally, you (and your doctors) make a risk/reward decision

regarding more invasive procedures -- at this point, ablation is the

most popular/effective choice.

>

> In my opinion, trying to rush through the stages is not the right

thing to do. You have to convince yourself that something really is

wrong in there. Then you have to convince yourself that the medical

(as opposed to surgical) solution either doesn't work for you or that

the risks of a given drug are more than you (or your doctors) are

willing to risk. It's a slow process.

>

> The good news (such as it is) is the frequently repeated mantra: A-

Fib won't kill you. The bad news is that there may be times that you

doubt that the first statement really is good news. The other good

news is that -- while the drugs seem to be stalled in terms of

development -- the more invasive procedures are making amazing

progress.

>

> Hang in there. There is light at the end of the tunnel and there

are a lot of passengers on the train. On the other hand, sometimes

it feels like it's a hell of a long tunnel.

>

> Bill Manson

>

> " If you don't have time to read the comics, you don't have a

life. " -- Marcia G. Kennedy

>

>

>

>

>

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Rich:

I live in Columbia, Md and work in Washington, DC. It's a 1 hour+

commute to work and I have to admit I am super stressed after my

drive to work (then again I am a psycho driver and a Type A). I am

currently seeing a cardiologist not an EP specialist

(Electrophysiologist). He seems knowledgeable but seems to want to

go slow and started on weak drugs and work up from that point. He

does not perform any ablations or other surgical procedures. He does

perform the cardioversions. He has me going on Sotalol on Tuesday

before I go into the local hospital on Wednesday with another

cardioversion on Friday. After listening to some of the readers on

your board I am really afraid of going on Sotalol.

My general health is good, I think except for the A-fib and my knee

that was injured a long time ago and know needs to be replaced, I am

in really good health. I have always been thin until about 2 to 3

years ago when my knee started acting up and I became more

sedentary, At that point, I realized a knee replacement was in the

near future. Using my boat has become a chore due to its size and

work needed to operate it and clean it along with my knee issues. I

was really getting into working out again and then told by the

cardiologist to cease and desist. Very frustrating!

My cardiologist is associated with the University of land in

Baltimore. For the few procedures I have had performed in my life, I

have used the best I could find at s Hopkins. If my current

cardiologist refers me somewhere, and I suspect he might, it will

probably be a Electrophysiologist at U of MD, I am wondering if I

should insist that he make a few calls to someone at Hopkins and if

not whether I should look for another cardiologist who will refer me

to Hopkins since you can not see anyone at Hopkins without a referral

from another physician. Rich, if you or anyone else can guide me in

what I should do next I would be greatful. Thanks, Jeff Doxzon

> In a message dated 10/30/04 6:36:54 PM Eastern Daylight Time,

> knotshore@y... writes:

>

> > have learned as much or more about A-fib after

> > studying the files and messages on your support group

> > then I would ever have suspected possible.

> >

>

> I have to tell you that Bill Manson's reply to you is perfect. It's

a good

> one!

> As you have noted, you've learned a lot about AF on this board.

This is your

> personal resource. We are 1400 members strong, all here to do one

thing and

> one thing only. Help each other. You have taken the first big step.

You posted

> your story and said " Help me out "

> I have a few questions. Do you live in a major metropolitan area?

Have you

> had a heart work up done? That is: A cardiac MRI and or

echocardiogram, a real

> stress test, EKG, Holter monitor (30 day).

> Are you seeing a cardiologist or an EP (Electrophysiologist)

arrhythmia

> specialist?

> Your general health is?

> Also a good site for AF info is the Atrial Fibrillation Foundation.

> www.affact.org. It is affiliated with Mass. General Hospital in

Boston. A Harvard

> Medical School Teaching Hospital. We are noted as their lay persons

support group

> of choice on the AF Foundation web page.

> As you have said, you have learned more about AF here than other

support

> groups. Our group is very focused and hungry for knowledge and

ready to share

> what we know, have experienced and our successes and failures as

well.

> Rich O

>

>

>

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> I live in Columbia, Md and work in Washington, DC. It's a 1 hour+

> commute to work and I have to admit I am super stressed after my

> drive to work (then again I am a psycho driver and a Type A). >

Baltimore. For the few procedures I have had performed in my life, I

> have used the best I could find at s Hopkins. If my current

> cardiologist refers me somewhere, and I suspect he might, it will

> probably be a Electrophysiologist at U of MD, I am wondering if I

> should insist that he make a few calls to someone at Hopkins > what

I should do next I would be greatful. Thanks, Jeff Doxzon

*******

Jeff, I grew up in the Washington area. It certainly is a stessful

drive, from anywhere into DC. I frequently make the drive down I-95

to visit my mom who lives in northern VA. Sorry to hear that you are

a psycho driver. I am not, but I am Type A, so let's hope that you

and I never meet up on the highway!

Anyway. I recently went for a consult at Hopkins with Hugh

Calkins, who is the director of electrophisiology there. I went in to

talk to him about an ablation. I liked him. If you want to see

someone at Hopkins, he is your guy. One of the best in the country.

Unless your insurance requires a referral, you can call up yourself

and make an appointment. I don't have the phone number right in front

of me, but you can easily find it. I haven't heard about anyone at

the U of MD who is in Dr. Calkins' class, or who has his experience.

Best of luck to you.

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