A-flutter: Coumadin or not?

[Marge]

My cardiologist just advised me that, based on a 24 hour Holter monitor test, I am fairly consistently in A-flutter.

He says that the flutter is pretty well controlled and that there are no "pauses." My highest heart rate, according to the monitor, was 124 BPM (that was at 9 a.m. when I was working out).

I might add that I am not conscious of any "flutter" or palpitations or racing heart-beat, etc. The possibility a flutter was picked up on an EKG, hence the decision to put me on the Holter monitor.

My cardiologist says that coumadin is the standard recommended treatment for people in this condition is coumadin -- to reduce the risk of stroke.

Basically, if I got it correctly, he said the risk of stroke for people in my age group with heart disease and A-flutter or fibrillation is 6 %. With coumadin the risk is reduced to 1-2 %. With aspirin (instead of coumadin) the risk is 3-4 %. [I think I've got those percentages right.]

I told him I really DO NOT want to be on coumadin. I was on coumadin for three months after my surgery and I was really, really glad to be off the damn stuff, for a variety of reasons. I really do feel that coumadin impacted my life way too much to want to be on it for the rest of my life.

My cardiologist said the decision was mine; he recommended, if I don't go on coumadin, to take aspirin; which I have no problem with.

I realized when I first was diagnosed with a mitral valve problem and was getting ready to have surgery that there was a possibility that I might have to be on coumadin for the rest of my life (either if I had to have a replacement & chose a mechanical valve, or if I went into atrial fibrillation) and I was OK with that (I had to be OK with that considering the situation).

But I was very relieved when I was able to have a repair, and was told by my surgeon I only had to do three months of coumadin.And I was REALLY relieved when I was able to go off coumadin. I did not enjoy those three months. The lab visits -- it became increasingly difficult for the lab personnel to even find veins they could stick -- the need to keep monitoring & changing the dosage, the attention to diet -- all drove me up the wall. An additional issue is that we like to travel -- and not just for a week or two, and not just to places where labs are easy to find. So I would really like to stay off the damn thing, if I can.

For the moment, I have told my cardio I will go the aspirin route.

I would welcome any input on this issue. Am I being crazy?

I know that most of you who are on coumadin are on it because they have to be -- because you have mechanical valves. Is there anybody out there who's taking it just because of atrial flutter???

The difference in stroke risk really doesn't seem to me to be all that high, to put myself on the coumadin regime for the rest of my life.

 

[Karlynn]

Marge,
My brother-in-law is on Coumadin. They found out about his A-fib after he had a stroke due to it. Please seriously consider the Coumadin.

 

[Nancy]

All the percentages really mean nothing, if YOU are the unfortunate one who has a stroke. And none of us can read the future. The only prudent thing to do would be to try to prevent one, because after the fact, it becomes impossible to pick up all the pieces.

 

[catwoman]

I know that most of you who are on coumadin are on it because they have to be -- because you have mechanical valves. Is there anybody out there who's taking it just because of atrial flutter???

The difference in stroke risk really doesn't seem to me to be all that high, to put myself on the coumadin regime for the rest of my life.

A friend in Houston chose a bovine valve for MVR so she could avoid taking Coumadin. However, she's been on Coumadin since her surgery in December 2002 because of a-flutter. Her doctors say she'll be on it the rest of her life. (Her surgery was at St. Luke's in Houston, an excellent facility & affiliated with Dr. Denton Cooley.)

I agree with Nancy. Statistics are fine -- until you become one of the statistics. Coumadin gives better protection against a stroke than aspirin. Why gamble with your life?

 

[Ross]

Marge many people have to take Coumadin for Afib, it's not just us Valvies. You only have one brain (Or at least I think that's all you have) so if Afib is a problem for you, you had better start back on the Coumadin to keep yourself safe. I'd hate to see you all screwed up and dependant upon someone to care for you simply because you don't want to take Coumadin.

 

[perrybucsdad]

Marge,

First off, it's your body, so it's your choice. My question though is why don't you want to be on the Coumadin? You said you had some tough things after your surgery from the coumadin. What were these things?

I know when I had my valve put in, I really wanted a Ross procedure so I could avoid the coumadin. I was mad as can be when they told me they couldn't and I had to take coumadin for the rest of my life. After a few months though, it was not that big of a deal.

I still do ALL of the things that I used to do before, but now I'm a bit more cautious than I was before.

I agree with what everyone here has said about strokes. Once you have one, there is no going back. I had a stroke in 2000 due to high blood pressure (I was 30 at the time). I should be dead right now. They told my wife that I would die within 24 hours and there was NO CHANCE I would survive. Her faith kept her (and me, even though I was in a coma) going. She somehow convinced the Dr's to do surgery (against their advice). They insisted that even if I did make it though the surgery and everything, IF I did live by some miracle, I'd be vegatative. Well, I hate to say it, but I beat their odds and am functioning just fine. I finished my Masters which I was working on at the time, top of my class, and hold a decent job. But I was one of the lucky ones. For every one person like me, there are hundreds if not thousands that are not lucky.

My advice would be to do what you think is best, but take care of your body. It's the only one you have, and I'm sure you have quite a few people around you who love you and would not want to see anything bad happen to you.

Nest of luck with your decision.

- John

 

[Guest]

Marge,
Look at it this way.
6% per year means that 6 in 100 will have a stroke each year. 100/6 = 16.6. So after 17 years probably everyone in the group will have a stroke. Not the killer kind - the paralyzing kind.

With aspirin 3 per year will have a stroke or everyone will have one within 33 years. So in roughly 16 years your chance is 50-50.

With warfarin it will be 50 to 100 years before everyone would have a stroke. So the odds are that you will never have a stroke.

The downside to warfarin is bleeding. In my clinic we have a minor bleed (usually a bloody nose but it could be anything that does not require a transfusion) about every 1.5 patient years.

Major bleeds occur about once every 33 patient years.

No statistic can pick out any one person's risk but can give you a good idea of what you can expect.

Figure your own age and life expectancy into this.

If you are 60 and think that you might live another 20 years, doing nothing is not a good choice because the odds are that you will wind up paralyzed.

If you are 60 and think that you will live another 10 years, then aspirin will give you about a 50 - 50 chance of being paralyzed.

If you are 50 and think that you might live 30 more years, warfarin is the only choice that makes sense.

The risk of a really bad outcome with warfarin is so small that it should not figure into the equation unless you are young with a long life expectancy.

Remember our mantra, "It is easier to replace blood cells than brain cells."

 

[Barry]

While group statistics don't apply to individuals (otherwise we'd all have IQ's of 100), they do represent the best guess. So those percentages would be crucial to my making such a decision. You may want to do a bit of research on the 'net to make sure they're accurate.

As with any drug, it's a trade-off of therapeutic effects versus side effects. If the side effects are such that the therapeutic effect just ain't worth it, well, then one should seriously consider not taking the drug.

You've got percentages for the therapeutic effect. How much you didn't care for the side effects of Coumadin (among which I would include the need for INR testing and dosage adjustment) is much more subjective. It really depends on how important the decreased risk of stroke is and on how much of a pain in the butt Coumadin was for you. But, as previous posts have noted, bear in mind that strokes are really bad news.

 

[Mary]

If the group statistics are correct, then where does the "25 years without coumadin" individual fit in? Isn't there a higher percentage for clots with a mechanical valve than for a clot caused by afib?

Mary

 

[Granbonny]

Hi Marge

Hi Marge

I remember before your surgery..how you were hoping not to have to take coumadin..due to your love of traveling. Did you get to take a trip since your surgery? and after the 3 months on coumadin? I hope so.. How is your Hubby? Didn't he have a knee replacement?..........Marge, maybe it was just the 3 months on coumadin..It takes a while to get in range...Also, remember you can get a home tester to take on trips with you. We (coumadin takers) all get upset the first few months...but, then..learn to dose on our own...If high, eat more Greens, V-8 juice..Low, tweak a tad for a week.And there is always Al. I'm age 65 soon Been on coumadin now for 3 years. No problems. If you do decide to take the coumadin. check for a hometester..... My Cardio approved one for me..I call in my INR once a month to his nurse.They are the one's that write my scrip.......Take care..Bonnie

 

[Guest]

The numbers are pretty accurate or else I would have disputed them.

25 years without warfarin and not having a clot probably compares to finding that your grandmother who died left you a winning powerball ticket that has to be redeemed before 4 PM and its already 3:45. Your car is in the shop and you look out the window and there is a limo and police escort waiting in front of your house. Could happen but don't bet your life on it.

 

[Karlynn]

Coumadin certainly hasn't stopped my travel. Greece, Turkey, Italy and France.....so far. Planning to add more to the list.

 

[Ross]

I remember when they first started me on it. Right after they did all the nasty tests preceeding my last nightmare. They thought I had a clot in the apex of my heart that turned out to be a cyst. I remember being highly disappointed at being put on Coumadin, but frankly, it's not a big deal. The biggest pain is constant testing, but hey, that's a small price to pay for what it does.

 

[Barry]

If the group statistics are correct, then where does the "25 years without coumadin" individual fit in?...

The 25 years without coumadin individual belongs the same place on the bell curve as a person with an IQ of 190 - a rarity at the extreme end of the curve. Average IQ is 100, but there are a few individuals with extremely high or extremely low IQ's, and apparantly there is at least one individual who can go 25 years without Coumadin. My guess is that she had an unusually low clotting factor; a hemophilic, after all, wouldn't need Coumadin.

[The only way Coumadin has affected my life is that I do bleed rather freely from minor cuts, I've had to stop power drinking, I've gotta put up with the hassles of INR testing and dosage adjustments, and I've got an emergency stash in a watertight container on my key chain. It's mostly just a minor annoyance for me.]

 

[SJJ]

Marge-My husband and I travel frequently, out of the country as well as within the US. My coumadin regime is NO BIG DEAL since I have my own machine. My attention to my INR, although I know it's much more important, requires less of my attention than daily flossing. I know that there will be times in my life when it may be more of an issue that I'm on coumadin (surgery, etc) but having been on the stuff for over a year now, I haven't found it to have any real impact on how I live my life. Should I find myself in your position, I'd enhance my probability of bypassing a stroke by choosing coumadin over aspirin. Just my opinion, mind you, and whatever decision you make will be the right one for you-I recall very clearly that you're nobody's fool.
Sue

 

[Guest]

Theoretically a hemophiliac could get a clot because it might be affecting a different clotting factor. In practice it rarely happens because the bleeding is usually dramatic. You also have to be careful that you do not overdose clotting factors in the hemophiliac.

I know a couple where the woman has a clotting problem and the husband is a hemophiliac. If you average them out, they are normal.

 

[tobagotwo]

You have to look at what you want in your life. Your cardiologist said it was your choice, because it is. You can choose to determine your exposure to risk. Some people smoke. Some people choose to talk on the phone while they drive. Some choose not to send the eBay item I bid and paid for.

While it is true that you will lower your chance of a stroke by 2% on Coumadin, you also add a 2% risk of a bleeding event, if you go by the 10- and 20-year St. Jude study recently posted. (Presumably nothing about the valve itself could increase the risk of a bleeding event.) That could be viewed as a wash.

If you would like to increase your anticlotting beyond what aspirin can do, ask your cardiologist about the fungus Aspergillus oryzae, which is the fibrin-dissolving component found in natto, which was also recently posted about. It is available in supplement stores, and carries a required warning about not using it with ACT or clotting-affecting drugs. I have not researched it well yet, and do not know if it has any negative effects or if it is really effective in any meaningful way. It is only something to investigate.

You might want to take salmon or fish oil daily (2 grams - it comes in capsules), to see if it can help your flutter at all, based on a recent study just posted. The study showed a strong arrhythmia-reducing effect. It is also rated as having some anticlotting effects, enough to also carry a warning not to use with ACT or clotting-affecting drugs without consulting a physician.

Finally, you may want to ask your cardiologist about what options you may have to treat the flutter, versus just trying to live with it. Left unchanged, it will eventually enlarge the heart to some extent, Coumadin or aspirin notwithstanding.

Best wishes,

 

[Guest]

*shrugs*

You've received a bunch of responses already, so I'll probaby be a bit redundant here....but....

I might add that I am not conscious of any "flutter" or palpitations or racing heart-beat, etc. The possibility a flutter was picked up on an EKG, hence the decision to put me on the Holter monitor.

I was not conscious of any "flutter" either when I was diagnosed with it after my January 2003 surgery.

I told him I really DO NOT want to be on coumadin. I was on coumadin for three months after my surgery and I was really, really glad to be off the damn stuff, for a variety of reasons. I really do feel that coumadin impacted my life way too much to want to be on it for the rest of my life.

I _thought_ Coumadin would impact my life ... especially after researching and hearing about the "bleeding warnings". But...I took it for a while ... and did not affect me much at all. I had to use gloves (and still do) while washing/cleaning the cars and, other than the frustrating trips to the hospital every week to get the levels checked, nothing else much different. Oh...eating habits a bit, too. BUT...I still took my road trips....

My cardiologist said the decision was mine

That it is, for sure.

But I was very relieved when I was able to have a repair, and was told by my surgeon I only had to do three months of coumadin.And I was REALLY relieved when I was able to go off coumadin. I did not enjoy those three months. The lab visits -- it became increasingly difficult for the lab personnel to even find veins they could stick -- the need to keep monitoring & changing the dosage, the attention to diet -- all drove me up the wall. An additional issue is that we like to travel -- and not just for a week or two, and not just to places where labs are easy to find. So I would really like to stay off the damn thing, if I can.

Ah...I agree with you about the lab visits.

But, not about the traveling. I was able to work it out so that I could check it before and after my trips. If I was going to be gone for an extended period of time, the Coumadin Clinic told me that they'd help me find places to get it checked along the way.....

Not sure if this helped or hindered you....


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"You better not try to stand in my way" ... J Paycheck ... 'Take This Job & Shove It'

 

[ALCapshaw2]

I told him I really DO NOT want to be on coumadin. I was on coumadin for three months after my surgery and I was really, really glad to be off the damn stuff, for a variety of reasons. I really do feel that coumadin impacted my life way too much to want to be on it for the rest of my life.

My cardiologist said the decision was mine. But I was very relieved when I was able to have a repair, and was told by my surgeon I only had to do three months of coumadin.And I was REALLY relieved when I was able to go off coumadin. I did not enjoy those three months.

The lab visits -- it became increasingly difficult for the lab personnel to even find veins they could stick -- the need to keep monitoring & changing the dosage, the attention to diet -- all drove me up the wall. An additional issue is that we like to travel -- and not just for a week or two, and not just to places where labs are easy to find. So I would really like to stay off the damn thing, if I can.

Marge,

It seems that your MAIN objection to Coumadin is the Testing by Lab Draws.

Lab Draws are NOT FUN, BUT, there are Coumadin Clinics that use Finger Stick Testers. See if you can find one near you.

Better yet, see if your insurance will cover a Home Test Unit and ask your Cardio (or PCP) for a prescription and statement of "Medical Necessity".

With your own unit, you can test at YOUR convenience, and either self dose or call in your numbers and have your Cardiologist or nurse or whoever monitors your INR advise you on dosing. Plus, you can take your test instrument with you whenever and wherever you travel. That would seem to resolve most of your objections to Coumadin.

You may also want to talk with an ElectroPhysiologist about CONTROLING or PREVENTING your Atrial Flutter. I know there are drugs that specifically target Atrial Fibrilation (I am on the generic form of BetaPace). Maybe the appropriate Beta Blocker and Aspirin might be an option to investigate.

Be safe.

'AL Capshaw'

 

[geebee]

Marge,

I am sure going on Coumadin would protect you. However, in addition, has your doctor talked to you about medicine to convert back to normal rate? Does he feel this is permanent and untreatable? I would think Coumadin would be needed while he works through treatment to stop the flutter but, once it is stopped, you should be able to stop the Coumadin.

If he hasn't mentioned treatment, you should talk to him about the options.

Please don't refuse Coumadin therapy. Despite percentages, you are putting your life at risk.