Atrial Fib

[geebee]

I found out a few days ago that I am (and have been apparently for awhile) in constant atrial fib. My cardiologist says this will probably be permanent and is caused by the enlarged atrium from my prior heart problems and my three surgeries. I usually have no symptoms but my heart rate increases very rapidly with minimal change in my daily exertion level. My doctor says the atrial fib should not be dangerous providing my coumadin levels are where they should be. I have seen a lot of discussion around home testing for coumadin levels. Is there anyone out there having the atrial fib problem who is home testing as well?
I would love to hear from anyone who has had success with treating atrial fib or if this is truly something I will just have to put up with.
Thanks and smiles,
Gina

 

[bvdr]

Hi Gina,

I've had problems with atrial fib that are now being suppressed quite well with flecainide. My left atrium had enlarged as a result of mitral stenosis and hasn't gone down very much since my MVR. I hometest and there are many others here who do as well. I test every week and really appreciate the fact I am no longer tied to a laboratory.

There are members here who have had the Maze procedure and other treatments as Atrial fib is so very common among people with valve problems.

 

[ALCapshaw2]

Welcome aboard Gina!

Has your Cardiologist tried any medications to control your A-Fib?

I was able to control moderate A-Fib, PAC's, and PVC's for a couple of years with a low dose of Toprol XL (a beta blocker). When A-Fib recently began to be a nuisance, my Cardiologist switched me to Sotalol (generic form of BetaPace). Sotalol completely stopped my A-Fib. During the first few weeks I had mild to moderate headaches but they cleared up as I adjusted to the medication.

You might want to consider talking with an ElectroPhysiologist (a Cardiologist who specializes in heart rhythm issues) to learn about other options.

'AL'

 

[geebee]

Thanks for your responses.

Thanks for your responses.

I am not on medication for fib per se. I take Inderal which I understand can help. I think I will look into home testing to make sure I don't create a clot situation aggravated by the fib. I will also discuss the meds mentioned with my cardiologist. I am always hesitant to start another medication but, if I start to have more symptoms, I may not have a choice.

I am just so happy (even after 24 years with a mechanical valve) to be alive that I forget I can sometimes make things even better. I have found so much help on this website and will make sure I become more involved in helping other members.

Thanks again.

 

[dpayne_au]

Hi Gina,

There is very wonderful afib support group on the web.
http://health.groups.yahoo.com/group/AFIBsupport/
It has a very large membership of people, all of whom have atrial fibrillation. Someone there may also have information about home testing for coumadin levels.

Regards,
Diann

 

[ALCapshaw2]

One word of caution Gina -

IF your cardiologist suggests Amiodarone, tell him you want to exhaust ALL other possibilities first. Amiodarone is a very powerful anti-arrhythmic drug with MANY SERIOUS Side Effects that can cause permanent damage to your Eyes, Lungs, and other organs if taken too long at too high a dosage. The info sheet should warn that it is considered a drug of LAST RESORT so don't let anyone START with that option. Another nasty feature of that drug is that it has a half life of 6 MONTHS which means that it takes FOREVER to complete rid your body of it even if you quit taking it. It has it's place, but there are many other options that should be tried first.

Don't forget, the REAL experts on arrhythmias are the ElectroPhysiologists. Most large Cardiology Groups have one on their team for consultation.

'AL'

 

[John & Joann]

We agree that Amioderone is the last choice. Many Drs. called it the mother of all fib/flutter drugs. 320 mgms. of betapace is helping me. This dosage requires a pacemaker or else you will pass out.

Happy clicking for nearly 33 years.

 

[Harpoon]

Amiodarone also requires CONSTANT monitoring including chest x-rays and bloodwork. There are also a lot of drugs that are more or less incompatable with Amiodarone, including coumadin as I recall.

I had to take my amiodarone in the mornings and coumadin at night because they didn't mix all that well together.


I was off amiodarone (it was about half the regular "maintenance" dose) within about 7 months of going on it while I was in the hospital after my tricuspid replacement.


There's also some argument over how well amiodarone actually works to control arrythmias compared to some other medications and all the side-effects involved.... It seems to be more effective in some patients than others and you don't see the effects right away, if it will help at all.


A drug of last resort, when all esle fails or presents side-effects that outweight using the medication (ie, debilitating -did I spell that right?- headaches)

 

[Nan]

I am also on Betapace for Afib and have a pacemaker as the Betapace makes the heart rate so low .....the afib is currently under control with this. I was on another antiarrythmic (Propafenone) prior to Betapace and had really bad side effects from it . Most of these drugs are toxic, with Amiodarone being the worst. But so far, so good with the Betapace. If you do start taking one, pay close attention to how you are feeling so you can report any problems asap before they get too bad.

Good luck.

 

[Mb]

Dear Nan:

I do not mean to hi-jack this thread, but Nan, could you tell me about the stenotic aortic valve? My husband also has chronic a-fib, and two St. Jude valves. His transmitral and transaortic pressures have increased, and I did not know stenosis could happen with mechanical valves. Please e-mail me at [email protected]. I am quite curious.

Marybeth

 

[geebee]

Thanks to everyone.

Thanks to everyone.

Thank you so much for all of your help. It is amazing to me that so many people line up to help a stranger even one with similar medical issues.
I have made a decision to pursue home testing for coumadin to at least make sure I do not have an INR that goes up and down between lab tests since blood clots are my biggest concern right now. I still usually can't "feel" being in fib and do not even have problems unless I really "crank it up". Luckily walking and strength training do not get my heart rate up too much and I am staying in good shape. I am quite hesitant to add another pill to my life so I think preventative measures are my goal for now.

 

[rheumasu]

Atrial Fib

Hi, I have been reading things on this site for a couple of weeks now, and find it refreshing to know that I am not alone. I was diagnosed 6 months ago with 2+ mitral valve regurgitation and atrial fib. My doctor says when it is time I will need maze procedure and mitral valve replacement. Right now I am on 225 mg of Rythmol to control extra beats. I was on Tambacor, with no sucess. I don't think the Rythmol is helping either, I am waiting for Holter monitor results from last week. I seemed to have aquired this from Rheumatic Fever at or around age 14, although I don't remember much. I am really worried about this whole thing. My mom had an anurysm at age 48, I am 45, she lived and was operated on and is still going strong today. An MRI showed lesions in the deep white matter of both cerebral hemispheres, the doctor attributed these to headaches and high blood pressure. I feel as if the odds are against me...high blood pressure, a-fib, rheumatic valve disease, and hereditary. I have read allot about this condition and that there are questions as to when to operate. Presently, I have no symptoms other than periodic chest pain. Although, when I get upset my throat seems to close shut and I gasp for air. Any thoughts are appreciated.

 

[bvdr]

rheumasue,

I want to welcome you to this forum. Rheumatic fever caused quite a few of the valve problems you see around here. Heart arrhythmias (SVT and Atrial Fib) were what led to me being diagnosed with rheumatic heart disease- which was a surprise to me. As you know, many of us were not diagnosed at the time we had the disease. In retrospect, I too, have zeroed in on a time when I was about 14 or 15 and no one knew what was wrong with me. I had had whooping cough several months previously and it seemed I just wasn't getting my strength back. I was very short of breath and the doctors thought my lungs hadn't healed yet. So what did my dear doctor do? He started me on radiation treatments to my chest. Believe it or not, back in the early 60's this was still an acceptable method of treatment. Today we know that it was not a good thing to do.

Regardless on how we ended up with valve problems, we all have some commonalities and that is what makes this board so special. We end up learning things all the time!

I would suggest you go to the reference forum here and spend some time in the "must have" reference sections. One of the first links is to the official guidelines on the management of valvular heart disease. If you aren't aware of this reference I'll bet you will end up spending some time there soaking up some of the information.

Again, welcome to the family.

 

[rheumasu]

Betty,

Thanks for the reply and please tell me how to get to that forum. I am new at this.

Thanks,

Susan

 

[bvdr]

OK, Susan. Scroll up to the top of this page and see where the name of the thread is..?

You are in the "heart talk" forum with the name of the thread "atrial Fib".

Click on the words Valvereplacement.com Forums. When you see a list of the different forums available then just click the one for reference sources and you will be there. It is easy once you learn your way around a little bit.

 

[rheumasu]

Thank-you I found it, your right, I will be reading for a while. I will also read about the how to's of this website. Sorry, for being so uninformed.

Thanks-again
Susan

 

[geebee]

Hello Rheumasu

Hello Rheumasu

I remember well the first time I was told I had a heart problem. I was told I had a heart murmur that I was probably born with and really didn't need to worry about. The next time I heard about it was "this is more than a murmur - go see a cardiologist". I went on from there to 3 open heart surgeries. I think all of this was because I had undiagnosed rheumatic fever as a child (memories only of extreme knee pain) and went through a lot of dental work without antibiotics. The newly diagnosed patients are so lucky since medicine has advanced so much since I was 14 (in 1964). Be happy that you exist in a time that has so many options of helping your condition. Even if you end up having surgery, it is a great deal better than the option of not being here at all. All of the pain that comes with surgery merely confirms you are still alive.
Stay in touch through the forum and, as you have already noted, remember you are not alone by any definition.
Best wishes and God bless,
Gina

 

[rheumasu]

Gina,

Hi, and thank-you for your responce. I have been out for a few days attending my broth-in-law's funeral. He was 50 years old and died from brain cancer that was diagnosed 20 months ago. After watching what that man went through the past year, I am not worried so much about a little heart problem.

Susan

 

[geebee]

Susan,
I am so sorry to hear about your brother. You're right, there is always someone who has it worse than us because heart problems are treatable. Anurysms are too sometimes. Unfortunately my father died from a cerebral anurysm at 48. Since I am 52, I feel I am ahead of the game, especially since I am 24 years post first surgery. I wish that one had been the only one but, again, despite all the surgeries, I am still around to complain.
The coumadin is the big thing because right now I am treating a huge hematoma on my leg from being clumsy. Oh well, just part of the game.
Take care and keep smiling and you will make it through the pain of loss.
Gina

 

[rheumasu]

Thank-you for your kind and thoughtful words. I am also sorry to hear about your father. My mom was very lucky to live, she was 48 years old also, but now she is 67.

Did you also have rheumatic fever?

I have been reading some of the forums, and I would like to know what to expect. I want to know symtoms and things like that. I had a 7mm kidney stone that I almost had to have surgery for this summer and presently have a 2mm one lodged inbetween my kidney and ---- passing...lets say. Could this be caused from blood pressure? I am on Cozarr presently and Rythmol SR. what do these drugs do to a persons system? I feel that my stomach is bloated most ot the time and worse during that time of the month. Also, I have put on about 5 unexplained pounds, but have no swelling in my feet. Although, they are very sore after walking around all weekend. I have a desk job. I just want to know what to expect! I have an appoitment with the cardiologist this Friday, and I want to ask questions. He said he thought I had about 5 years to surgery, but after reading some of the post it seems that allot of people had surgery much sooner than predicted. I have also read that it is worse to have a-fib along with the mitral valve problem, any insite on this?