Low Risk-High stakes-conflicting info

I feel like I have a gun pointed at my heart. The gun has a lot of chambers maybe more than 1,000,000 and there is only one bullet. I may have more chance of being struck by lightning or winning the lottery but my awareness of that gun pointing at me is unsettling.(to say the least)

My doctor has scared me into staying on Warfarin but has let me off the Toprol XL. He told me I could come right off the Toprol because I'm on a low dose (25mg). I think I will go off it in stages anyway. I can cut it in half and go 2 weeks at a time to get off. Do you think this is prudent?

When I asked about the 48-36-24 hour theory & asked if it was true that clots do not form until Afib has been going on for a period of time. He said actually there was more risk to going in and out of Afib like I do. He said "You know how long it takes for a wound to clot. " He said "You can get a lot of information on the internet but it's not supported by the medical commnity."

If that's the case, why is it that when those of you who go into Afib for long periods are considered ok if you convert b4 12 hours of it? Is this not the medical community that is guiding you? Why are the rules different?

I only need 2mg of Warfarin to keep my blood in 2.0-3.0 range. I'm thinking of just staying with it and hoping the new (Exantra?) whatever the name is, comes out soon and ends up being safer. I know that I'm still at higher risk if I'm in an accident or get internal bleeding. But that gun does not seem so threatening right now. And the stress factor here is of great importance. I'll probably have to take Glaucoma meds as well.

In the meantime, I'm looking for an EP for a second opinion, I will try magnesium and diet changes to see what happens. Like you, I will experiment with this. Any opinions you have will be appreciated.

You cannot know how much I appreciate the work you've done and the knowledge you share. At least I have things to try to tame this monster and can feel somewhat in control ( at least for a while).

May the holidays bring peace and joy.
Elaine

Elaine:
All good questions, and I'm sure CYA enters into many of the different answers we get.
Before all my problems, when it was just afib episodes lasting 8 to 18 hours once or twice a week to once or twice a month, my doctor had me inject Lovenox after 8 hrs. of afib.

Pam

One other thing. You can follow the 48 hour rule if you know without a doubt that you have no other risk factors like coronary artery disease. Here's an interesting case:
My father was normotensive with low cholesterol and no known risk factors. He was diagnosed with afib because he came into an ER with a cut on his hand and they noted that his pulse was irregular and got an EKG which showed afib. He came out OK on an exercise stress test and they treated his afib as lone afib, but of a chronic nature. They never tried to convert it, but put him on Lanoxin and Coumadin. Two years later he had an MI and subsequent bypass surgery. He never worked again, and I don't think his mental capacity was ever up to the level that it was before his surgery, and I think it was the heart and lung machine.
The point being that unless we know via coronary artery angiography that we have no coronary artery disease, it's hard to say without a doubt that we have LAF.

Just a thought,
Pam

Thanks Pam

That's one of the things that concerned me. It didn't seem logical that they could tell what condition the arteries were in from a stress test and an echocardiogram. I know my choloresterol has been borderline since they first started checking it. I forget the numbers. I'll have to ask for them & write them down.

That's probably why they want me on Warfarin. Is the Coronary angiography an invasive test? Maybe I'm better off staying on low doses of Warfarin. I may even be able to get the dose lower when I add magnesium.

I don't want to get off it unless I'm sure I have LAF and really have low risk. It's too bad we can't count on doctors to be honest with us. When things don't add up I feel insecure.

Elaine

Elaine, I feel like I have that same gun pointing at me!!!! Diagnosed with LAF in August. I'm now on Toprol XL, Flecainide, and 325 mg. Aspirin daily. The cardiologist and EP both say I don't need Coumadin. Nobody agrees on the rule for the time frame in self converting safely! Nobody has ever suggested going to ER, even when they all know my episodes are frequent (every 4 or 5 days), and last 30 to 39 hours!!!! I think if I was on the Coumadin at least I'd have some peace of mind. I hear 'ya Elaine!!

Cathy

Hang in there, Cathy, we're on the same rollercoaster. I'm sure you feel as I do that it's all happening so fast. We're trying to adjust to our situation and deal with the inconsistancies of the medical community while our brains are whirling and our hearts are thumping. That's an awful lot to handle.

Given what I'm learning, it makes more sense for you to be on coumadin and me to be on asprin. My episodes are almost every day but for the most part under 2 hours.and I have the glaucoma issue.

At this point, though, I'm not sure of anything. Doctors should be giving us the information and the option to use whatever medication we feel most comfortable with. Because of the stress factor we need to feel totally comfortable with our treatment.

Once I get a second opinion, hopefully from Bob G's EP, I'll feel more comfortable that I'm doing the right thing.

I'll continue to share whatever I learn with the board and will continue to learn from others on this board who are offering their wisdom.

Take care
Elaine

Elaine,

If you don't mind me asking, what is your age and what supplements are you on? Also, do you have the results of your LDL/HDL cholesterol tests?

Richard

Elaine:

Coronary Angiography is done during a heart catherization. Dye is injected into the coronary arteries to view and film the actual arteries, which are reviewed later with actual percent occlusions identified, if there are any. It's fool proof, whereas I used to get patients admitted to CCU ocassionally, in the throes of acute MI, and be told that the person just had a normal stress test last April.

Don't get me wrong, stress tests are usually pretty accurate, but not infalable. I'm just relating what I have seen.

I doubt however, that any doctor would take a patient to the cath lab after a normal stress test, unless perhaps that patient had persistant chest pain.

I will look and see if I can find stats on the accuracy of stress tests.

With regard to Coumadin, I never had any afib episode that laster more than 18 hours, and I was put right on anticoagulants after the first episode.

It is very hard to know what to do. Perhaps my doctor acted overzealously. This certainly isn't the present trend, so who knows.

Have you had a negative stress test? Any nuclear studies?

Pam

Elaine and all:

This was copied from the CCF website re: Thalium Stress Test stats:

Dear Barry,


Q: how reliable are the interpretations of the thallium stress test?
A: The sensitivity (ability of the test to detect disease) is about 85% and the specificity (the ability of the test to detect normals) is 85-90%. Thus there is the possibility of a "false positive" that is the test says there is disease when there in fact is no disease or a "false negative" where the test says there is no disease and there is disease present.

Q: Is there a tendency of cardiologists to view the results as indicating angioplasty when diet/medicines/vitamins/exercise/stress reduction present at least as valid a treatment plan?
A: This is an excellent question and one that you would get many different opinions on depending on who you ask. I would not rush into any procedure you do not feel comfortable with. If you are unhappy with the answers your current cardiologist is giving you, you may consider seeking a second opinion. Hope this helps. Please feel free to write back with any additional questions.

Information provided here is for general educational purposes only. Only your doctor can provide specific diagnoses and treatments. If you would like to be seen at the Cleveland Clinic, please Call 1 - 800 - CCF - CARE for an appointment at Desk F15 with a cardiologist