digest

[Guest guest]

Just in the event that you may not know ... a generic for Cordarone is

Pacerone. My cardiologist says its the same. and, it is considerably

cheaper. Theodore , Jr.

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[Guest guest]

Could you pease tell me is Cardarone the blood thiners?

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[Guest guest]

Victor -- Cordarone is an anti-arrhythmic drug (helps to regulate

irregular heart rhythms). It's a pretty powerful medication & works

very well for a lot of folks.

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[Guest guest]

Just in jest ... A computer freak friend suggested that I'd better check my

Guidant ICD to find out if the year 2000 will affect it in any way. On more

thing to worry about. I'll check today, but in the meantime, I thought I'd

start a very perverse rumor, that is, all ICD's have been programmed to fire

at midnight on December 31, 1999 to usher in the New Year ! A sense of

humor goes a long way.

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

[Guest guest]

I had been on Cordarone, then the doc switched me to Pacerone. I have had no

incidents, nothing, thank god. You all keep talking about long term Cordarone

side effects. Although I am slightly enervated at times, and although my skin

is somewhat drying out, perhaps that's because I'm going to be 65 this summer,

and I did have shortness of breath for a short time last winter, I don't seem

to have side effects. I had my original incident in Sept of 96, but all seems

to be well. My blood pressure is just fine. What are some common side

effects? The pharmacy instructions seem to indicate that EVERYTHING will go

wrong. I have yet to notice any. Please advise. Thank you. I have great

compassion for those of you who are having problems. My thoughts are with

you.

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[Guest guest]

Hi theo

re cordarone long term side effect

Not every body developp side effects with cordarone fortunately!!!!

Some side effects are from small concerns like lay of amyodarone on eyes

cornea, sun burnt, skin getting blue near the nose etc.;

Side effect of concerned are:

1/lay on lungs giving lot of trouble in the US when tyhey were using

cordarone at hudge doses( long time ago)

2/cramps in legs

3/ Thyrroïde disfunction due to Iodine in cordarone, which could cause more

arythmia. I am not sure but I read that could affect 6% of patient on

amyodarone. It is interesting to know that to get rid of the excess of

ïodine in the body can take as long as a year.

Take care Jimmy

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[Guest guest]

Tom in PA. I was on cordarone and now on pacerone. I do not have the flushed

face. I have noticed no difference in any side effects from the new

medication. AND it costs less, if that is a concern.

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

[Guest guest]

Hooray Anita Flushed cheeks is NOTHING ... Rosy cheeks are stunning

Do you know what some people will do to have rosy cheeks? Consider yourself

lucky Tom ... everybody comes up to me and says you look so healthy ...

youthful. All rosy checked ... It makes me feel like a million.

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

[Guest guest]

Dear Vic, How could anyone " mind " that you offered us all some information.

Don't ever think twice about that. That is exactly why we have this support

group, to give each other information and to help those who might have

questions or be confused about some things. As with most of you, pacerone,

cordarone ... my doc says it's the same. And just a mention about wearing a

baseball cap when in the sun. People have been wearing hats in the sun for

centuries. Direct sun on top of your head during the sunny summer or spring

days, can cause sunburn for anyone with receding hair ... and can cause

dizziness in anyone, regardless of age or condition. Wear a hat! Besides

it's fun. I took the time to find out where I can find a boater ... a straw

katie ... to wear at summer outdoor things. I hope to knock em dead with my

new HAT this summer. And, what could be lovelier in the summer than a lady

with a beautiful floppy garden hat on a la the late Lily Dache. Good luck

with the hat Vince. .

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[Guest guest]

Thank you Sue for your kind words. Yes, I am on pacerone. Yes, I did have a

defibbilator-pacemaker installed about 2.5 years ago, and have had no

incidents and live just about normally, except that I get tired. My doc

yesterday said blood pressure fine, cardiologist happy with heart condition,

cholesterol at astoundingly healthy levels ... but I get winded easily. Doc

says to walk, do aerobic dancing, lift weights while I sit and watch TV . A

friend suggested fatigue syndrome, but the doc said no dice. I guess I'm one

of the lucky ones. Arrhythmia, yes; but under control ... without the

medication I expect my heartbeat would by similar to Leonard Bernstein

conducting the overture to West Side Store in my chest ... and, I double

checked everything on this ... despite rumor that all of our

defibrillators are programed to fire off at midnight on the;millenium, there

is no truth to it. Best wishes to you and to everybody else. I do not come

into the site often, because everything is aok here, but when I do it is

heartening and encouraging and very supportive. Thank you all, Ted

PS. I write books, primarily on gardening these days. Enter my name

(Theodore Jr., at & Noble or Amazon for some info. I also

lecture, and have had no problems keeping engagements. But, I'm still a

little nervous about traveling abroad. Hopefully this summer, I can overcome

that. If anyone has some gardening questions, I'd be happy to answer them if

I can.

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

[Guest guest]

Sue, Hi there is a wonderful book in print called Kara mia, it is about a 13

year old girl with long QT syndrome, who has a sudden death episode while at

school and her recovery. If you want to read it and can not find it let me

know I know where to lay my hands on a copy. Makal

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

[Guest guest]

Huff & Puff

Just went through same experience. Got really bad. Like you, several

cardiologist

thought it may be something else. My EP said to go get cardiolite and echo

done.. I did.

It showed my mitral valve was not functioning right, resulting in

insuffecient blood flow--

even though the EKG looked normal for me. They took me off Beta-Pace,

slowed pacer rate

down to 60 from 80 along with several adjustments to drugs. Now I am

feeling better than I have in years.

My ejection fraction has gone up to 40 from 20, heart size has decreased.

The reduction in heart size

is what corrected the mitral valve problem. The Beta Pace was preventing me

from taking other drugs

that helped reduce the heart size because the combination would drop my BP

too much. Hope this helps.

It seems they get so interested in the electrical processes of the heart

that they sometimes overlook the

flow problems. That's why they call them human, and also why we patients

need to constantly be aware.

I was the first one emphasize to my EP about some of the people had with

Beta Pace. This I learned right here on this site!!

Good health and Spirits

Harry

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[Guest guest]

Just to reiterate a's gratitude. I too am grateful. I forwarded on the

heart seizure emergency operation ... deep breath and cough .. to eveyrone

I know on the internet, non have implants and all are so very grateful.

They've sent it on to their list of friends. Thank you thank you thank

you. You are doing something wonderful. Best Theo

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

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[Guest guest]

More on the heart attack emergency procedure. I sent it to a friend of mine

who is editor of AARPs magazine and he is putting it in the next issue.

Thanks again. Theo

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[Guest guest]

HAPPY BIRTHDAY DUFF FROM ONE LEO TO ANOTHER. WHAT YOU HAVE DONE IS

WONDERFUL. THANK YOU. Theo1415 Ted , Jr.

[Guest guest]

Dear Jon,

I've been busy and things have been on an even keel so I haven't contributed.

But I have been having problems with breathing .. shortness of breath, which

does not permit me to sleep from around 3AM until 10AM. I sleep from 10PM to

around 3AM and then start having problems. Lying on my back makes it

difficult to breath. I have to sit up straight and breath deeply in order to

recatch my breath. Anyway I went to my doctor and they xrayed my chest and

found fluid. I had also put on weight rather quickly which led him to

believe that it wa a fluid problem in my lungs. So, I'm on another pill, a

water pill, along with my Pacerone, Atenolol, Asprin, and Alcase. The

medication is furosemide. Yesterday was my first day on the stuff, and I do

feel better already. He wants me to keep track of my weight and call him

tomorrow. I already have lost 3 pounds. At any rate, I do not know if this

fluid problem which caused the shortness of breath is related to my arrythmia

or not, but thought I'd tell you all about it in case anyone has a similar

problem. I have not yet had a firing of my defib. Other than that I'm

feeling reasonably well. But the shortness of breath has cut back on my

exercising. I hope to get back to that when my normal breathing comes back.

If anyone has any information to add to what I've said above I would

appreciate input. In the meantime, happy holidays to all. Looks like we've

made it to the millenium. What's next? Theodore , Jr.

[Guest guest]

Theo1415@... wrote:

> Dear Jon,

>

> I've been busy and things have been on an even keel so I haven't contributed.

> But I have been having problems with breathing .. shortness of breath, which

> does not permit me to sleep from around 3AM until 10AM. I sleep from 10PM to

> around 3AM and then start having problems. Lying on my back makes it

> difficult to breath. I have to sit up straight and breath deeply in order to

> recatch my breath. Anyway I went to my doctor and they xrayed my chest and

> found fluid. I had also put on weight rather quickly which led him to

> believe that it wa a fluid problem in my lungs. So, I'm on another pill, a

> water pill, along with my Pacerone, Atenolol, Asprin, and Alcase. The

> medication is furosemide. Yesterday was my first day on the stuff, and I do

> feel better already. He wants me to keep track of my weight and call him

> tomorrow. I already have lost 3 pounds. At any rate, I do not know if this

> fluid problem which caused the shortness of breath is related to my arrythmia

> or not, but thought I'd tell you all about it in case anyone has a similar

> problem. I have not yet had a firing of my defib. Other than that I'm

> feeling reasonably well. But the shortness of breath has cut back on my

> exercising. I hope to get back to that when my normal breathing comes back.

> If anyone has any information to add to what I've said above I would

> appreciate input. In the meantime, happy holidays to all. Looks like we've

> made it to the millenium. What's next? Theodore , Jr.

>

> ------------------------------------------------------------------------

> -- Create a poll/survey for your group!

> -- vote?listname= & m=1

The symptoms you describe are classic cogestive heart failure symptoms.

The diuretic shoul help a lot.

Hang in there.

Joe

[Guest guest]

Theo -- it sounds to me like you've had an episode of congestive heart

failure. Did the doctor mention this to you? I have CHF and dilated

cardiomyopathy, and I suffer from similar symptoms. I have to sleep on

at least 2 pillows at night to keep my head and chest elevated. I have

on occasion had to get up and sleep in the recliner. I too am on a

fluid pill (Bumex) which I take whenever I have particular difficulty in

breathing. I weigh each morning, and if my weight is up 2-3 pounds, I

take a diuretic pill (along with potassium).

I have an ICD for my arrhythmia problems and take Cordarone. I don't

think the shortness of breath is due to irregular heart rhythms but I

could be wrong.

Hope things improve for you soon.

Anita

from NC

Theo1415@... wrote:

> Dear Jon,

>

> I've been busy and things have been on an even keel so I haven't contributed.

> But I have been having problems with breathing .. shortness of breath, which

> does not permit me to sleep from around 3AM until 10AM. I sleep from 10PM to

> around 3AM and then start having problems. Lying on my back makes it

> difficult to breath. I have to sit up straight and breath deeply in order to

> recatch my breath. Anyway I went to my doctor and they xrayed my chest and

> found fluid. I had also put on weight rather quickly which led him to

> believe that it wa a fluid problem in my lungs. So, I'm on another pill, a

> water pill, along with my Pacerone, Atenolol, Asprin, and Alcase. The

> medication is furosemide. Yesterday was my first day on the stuff, and I do

> feel better already. He wants me to keep track of my weight and call him

> tomorrow. I already have lost 3 pounds. At any rate, I do not know if this

> fluid problem which caused the shortness of breath is related to my arrythmia

> or not, but thought I'd tell you all about it in case anyone has a similar

> problem. I have not yet had a firing of my defib. Other than that I'm

> feeling reasonably well. But the shortness of breath has cut back on my

> exercising. I hope to get back to that when my normal breathing comes back.

> If anyone has any information to add to what I've said above I would

> appreciate input. In the meantime, happy holidays to all. Looks like we've

> made it to the millenium. What's next? Theodore , Jr.

>

> ------------------------------------------------------------------------

> -- Create a poll/survey for your group!

> -- vote?listname= & m=1

The symptoms you describe are classic cogestive heart failure symptoms.

The diuretic shoul help a lot.

Hang in there.

Joe

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

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[Guest guest]

Theo,

I agree that this sounds like congestive cardiac failure (CCF) for which

frusemide as we call it over here is a good drug, with the unfortunate side

effect of making you pee a lot! another class of drugs are the ACE

inhibitors (angiotensin converting enzyme inhibitors) which can be extremely

effective in CCF but are not suitable for everybody and need proper

discussion with your doc before starting.

Best Wishes,

Alan

Re: digest

> Dear Jon,

>

> I've been busy and things have been on an even keel so I haven't

contributed.

> But I have been having problems with breathing .. shortness of breath,

which

> does not permit me to sleep from around 3AM until 10AM. I sleep from 10PM

to

> around 3AM and then start having problems. Lying on my back makes it

> difficult to breath. I have to sit up straight and breath deeply in order

to

> recatch my breath. Anyway I went to my doctor and they xrayed my chest

and

> found fluid. I had also put on weight rather quickly which led him to

> believe that it wa a fluid problem in my lungs. So, I'm on another pill,

a

> water pill, along with my Pacerone, Atenolol, Asprin, and Alcase. The

> medication is furosemide. Yesterday was my first day on the stuff, and I

do

> feel better already. He wants me to keep track of my weight and call him

> tomorrow. I already have lost 3 pounds. At any rate, I do not know if

this

> fluid problem which caused the shortness of breath is related to my

arrythmia

> or not, but thought I'd tell you all about it in case anyone has a similar

> problem. I have not yet had a firing of my defib. Other than that I'm

> feeling reasonably well. But the shortness of breath has cut back on my

> exercising. I hope to get back to that when my normal breathing comes

back.

> If anyone has any information to add to what I've said above I would

> appreciate input. In the meantime, happy holidays to all. Looks like

we've

> made it to the millenium. What's next? Theodore , Jr.

>

>

>

> ------------------------------------------------------------------------

> -- Create a poll/survey for your group!

> -- vote?listname= & m=1

>

>

>

[Guest guest]

Hi Ted,

I would recommend reading " Quantum Healing " by Deepak Chopra MD, to all on

this list. This Work will put you in touch with your Mind and Body, and the

understanding of whats happening to you. The mine field of Pharmaceutical

Science can be VERY SCARY...

Your Bionic Brother,

Dudley Wynkoop

Re: digest

>

>

>Theo1415@... wrote:

>

>> Dear Jon,

>>

>> I've been busy and things have been on an even keel so I haven't

contributed.

>> But I have been having problems with breathing .. shortness of breath,

which

>> does not permit me to sleep from around 3AM until 10AM. I sleep from

10PM to

>> around 3AM and then start having problems. Lying on my back makes it

>> difficult to breath. I have to sit up straight and breath deeply in

order to

>> recatch my breath. Anyway I went to my doctor and they xrayed my chest

and

>> found fluid. I had also put on weight rather quickly which led him to

>> believe that it wa a fluid problem in my lungs. So, I'm on another pill,

a

>> water pill, along with my Pacerone, Atenolol, Asprin, and Alcase. The

>> medication is furosemide. Yesterday was my first day on the stuff, and

I do

>> feel better already. He wants me to keep track of my weight and call him

>> tomorrow. I already have lost 3 pounds. At any rate, I do not know if

this

>> fluid problem which caused the shortness of breath is related to my

arrythmia

>> or not, but thought I'd tell you all about it in case anyone has a

similar

>> problem. I have not yet had a firing of my defib. Other than that I'm

>> feeling reasonably well. But the shortness of breath has cut back on my

>> exercising. I hope to get back to that when my normal breathing comes

back.

>> If anyone has any information to add to what I've said above I would

>> appreciate input. In the meantime, happy holidays to all. Looks like

we've

>> made it to the millenium. What's next? Theodore , Jr.

>>

>> ------------------------------------------------------------------------

>> -- Create a poll/survey for your group!

>> -- vote?listname= & m=1

>

>The symptoms you describe are classic cogestive heart failure symptoms.

>

>The diuretic shoul help a lot.

>

>Hang in there.

>

>Joe

>

>

>------------------------------------------------------------------------

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>

>

[Guest guest]

Dear Joe, Anita, Alan and Dudley,

Many thanks for your wonderful input. The diuretic which I started on

Thursday has already taken off about 5 pounds, and I had the first decent

night's sleep in about 2 weeks. Still feel a little weak, but at least I can

sleep and the shortness of breath has almost gone away. I spoke with my GP

today, who spoke with my cardiologist (I'm seeing them both on Monday and

Tuesday) and you all hit the nail on the head. It is a cardiac failure

problem. I am so grateful to all of you. You have put my mind at ease. I

had my implant about 3 years ago, and have had no incidents whatsoever, and

felt pretty well all during that period. This worried me a lot. Your

reassurance has put my mind at ease and now I'm settling in for a glorious

holiday season. Yes, I'm cooking my own goose this year! Haven't done that

since I had the implant. Many thanks to all of you again. This is a godsend

and a wonderful thing for all of us and I thank Jon Duffey over and over

again for what he has done for all of us.

Just in passing, of late, I have been writing garden books. I have had 10

published. (and before that 10 on architecture, social history, etc.) Harry

Abrams is my publisher, and the last book we did was " Seaside Gardening, "

culled Fr my experience living on the rural East End of Long Island, New

York. My photographer colleague and I have a companion book to that coming

out in the spring, " Country Gardening, " also published by Harry Abrams. I

wish you all could be here to see the garden. It is often on the garden

tours, and it is quite extraordinary. Camellias, crepe myrtle and the new

hardy gardenia all thrive in this climate. If any of you live nearby I would

love to meet you, invite you to see the garden, and get acquainted. Please

drop me a line if you are nearby and would like to visit. I will keep you

informed of progress. My best regards to you all, Theodore (Ted) , Jr.

[Guest guest]

Hi,

Are you taking a potassium replacement like K-Dur when you take the

furosemide? Furosemide is lasix. It can deplete potassium. Less potassium

can mean arrythmias. Ask your Doc.

Good luck!

Beth

[Guest guest]

Dear Theo,

I agree wiith Beth insofar as potassium is concerned when taking certain

diuretics. Pls talk to your physicians--you may need a supplement. In

August I was low on potassium and also borderline low on magnesium and ended

up in the ER and a couple of shocks...have since paid more attention to my

diet.

Also, I'm in northern NJ and would love to meet you, see your garden, etc. I

have a small perennial bed on the side of my house and other flowers here and

there in the summer. It is one of my greatest joys. (Maybe you would even

autograph a copy of your garden book....)

Take care Theo...you sound like a delightful person! Bestest, Lee

[Guest guest]

Hi Theodore:

Your situation sounds almost exactly as mine a 2 months ago. The shortness

of breath, especially when lying, is probably due to congestive heart

failure. CHF also gives the lung problems. My basic problem arose from

atrial fibrillation. My treatment is similar to yours and the results have

been good In 5 weeks lost 10 lbs., no more shortness of breath, not more

sleeping problems. Within a week of starting new regime with furosemide

(Lasix) added was able to return to my 45-60 minute walk daily.

So problem is not from defibrillator, but from the things that were

happening to you that caused your need for a defibrillator. So hang in

there, things do get better. Allan

[Guest guest]

Thank you all for your input on the potassium and floromicide (?). I did as

you suggested and asked my doctor when I went in to see him on Monday. He

said I wasjust going to mention that and he sent me to the hospital for

bloodwork to determine my potassium. It was OK and so I don't need a

supplement. But what I wanted you all to know is that he said, if he gave me

a potassium supplement and I didn't need it, it is dangerous, In the same

way that if he didn't and I needed it it would be dangerous. In other words,

don't take it on your own. You have to have a test to determine if you do

or do not need it. You are really such wonderful people to share your

knowledge. I will continue to contribute whatever I can. Best regards from

Theo , Jr.