A-flutter: Coumadin or not?

[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

Granbonny, how nice of you to remember all that! Especially since I have not been on the board much in a long time. (Reason being I have had so few complications or problems since the surgery. Perhaps I was doing TOO well .... so when I hit a glitch, like the a-flutter thing, it throws me for a loop!) You are a sweetie pie.

I've done a fair amount of traveling since the surgery -- I've been to New Mexico, also to France, and twice to Mexico. Yes, my husband had his knee replacement but it turned out to be much more complicated than anybody, including his surgeon, thought ... he's still not fully recuperated and it's been 10 months!!! Really, the knee thing has been lots worse than anything that happened to me with the valve and OHS. He has good range of motion back but is still in a lot of pain. Apparently there is nerve damage.

About the coumadin: I really didn't have that much trouble staying in the range they wanted. I didn't worry too much about the diet, decided to just let THEM adjust to my diet, not vice versa. It was actually working out not that bad, by the time they took me off it. But the testing was THE PITS. By the time I went off the stuff I think they had explored every vein I had. I looked like a junkie with all the puncture wounds and bruising. Every lab visit ended up in me screaming at them (sometimes vice versa). And I think they are a quite good lab.

How does it work with the home testing? Do you have to stick sharp objects in yourself?

I think I would not mind the coumadin if I were a homebody ... but ...
one problem is that I expect to be away from home for a lot longer stays in the future -- several months at a time -- and not necessarily to places where there will be a handy lab, or even a handy doctor to call in from home testing.

Anyway -- I am going to call my cardio again next week & talk to him some more about my options, and how coumadin will affect the rest of my life. When I talked to him today, I asked about travel, and he said it would be OK for 1-3 weeks. He was rushed & I didn't have a chance to explain that 1-3 weeks was not necessarily what we have in mind!!!!

 

[Marge]

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

For how long at a time? We're planning stays in places that are a long way away from labs and possibly even doctors, quite remote places, for periods of three-six months. Maybe I can home test????

 

[Marge]

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.

Geebee, I only had a quick conversation with him. He didn't mention ANY options besides coumadin or aspirin.

Are there other options to stop the flutter? I am going to call & talk to him again next week because there are questions I have.

What options should I be asking him about?

What are "medicines to convert back to normal size"?

I am on coreg and cozaar, have been on them since before the surgery -- no other medications.

 

[Ross]

I would say that you are definately a candidate for home testing, since you have a need for a machine. Yes you have to poke your finger and get a drop of blood to run the test, but that's far better then vein sticks anyday!

 

[geebee]

Marge,

I know there are meds that can control A-flutter but I am not sure of all the names. I use Inderal which controls the flutter but not my A-fib. However, I found the flutter much harder to deal with than the fib. I hardly notice when I am in fib but always knew the flutter was around. I will always be on Coumadin due to the fib but I also have a mechanical mitral so it doesn't really matter.

If meds don't work for you, there is a procedure called ablation that can control A-fib & flutter. I do not know who is a candidate and, as all such procedures, does carry some risk but may be an alternative to long-term Coumadin.

Definitely talk to your cardio and explain you want to investigate all options. Push him if he seems hesitant and make sure you get all your questions answered. It is possible that Coumadin would be the only treatment (and not really a treatment but a safeguard) but it doesn't sound like everything has been covered yet.

Good luck.

 

[ALCapshaw2]

Marge,

You may want to ask your Cardiologist for a referal to an ElectroPhysiologist.

An ElectroPhysiologist is a Cardiologist who specializes in Heart Rhythm issues. There are several medications and 'procedures' that can be employed to get rhythm issues under control.

When it comes to A-Fib and A-Flutter, Coumadin is merely a 'safety net' that prevents clots from forming but does nothing to resolve the underlying problem. It sounds like you would benefit from exploring the 'control' options.

If those options don't work out for whatever reason, then going on Coumadin and getting a Home Test Monitor sounds like your next best alternative.

'AL Capshaw'

 

[Ross]

 

[Karlynn]

For how long at a time? We're planning stays in places that are a long way away from labs and possibly even doctors, quite remote places, for periods of three-six months. Maybe I can home test????

Just the 2 week travel times, we're still working stiffs unfortunately/fortunately.

I home test and dose myself, so I wouldn't hesitate traveling for any length of time with the test unit and the knowledge that the doctor was just a phone call away. Home testing (or Road Testing ) maybe something you'd want to look into.

I'm surprised that the Lab you went to (unless it was several years ago) was still doing venous draws and not finger sticks. I've had my machine for almost 4 years, but prior to that the hospital lab had been doing finger sticks using their Coagucheck machines for 2 years. If the INR was above 4 or below 2 they were required to do a venous draw. In my humble opinion, even though technically the venous draw seems more safe and accurate, you never know how long that tube sits around before they test it. The finger stick machines give you the number instantly.

 

[perrybucsdad]

I would say that you are definately a candidate for home testing, since you have a need for a machine. Yes you have to poke your finger and get a drop of blood to run the test, but that's far better then vein sticks anyday!

Personally, I miss the vein sticks. I used to STARE at the nurse who would poke me like I was possesed and freak them out when they did it. It was good for a few laughs.

Seriously though, the home testers are much better! I have never traveled with mine, but then again, I have never had to.

 

[Barry]

...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.

Do they have a child? And, if so, is the child normal? Pursuing my IQ analogy, the best predictor of a child's IQ is halfway between that of the parents. Wondering if it's the same with clotting.

 

[Barry]

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

Good point. I've got chronic atrial fibrillation, stuck with it now. The longer you have it, the harder it is to treat. I'd had it long enough that they skipped immediately to what apparantly is treatment of last resort - Amiodarone - and it didn't work.

If you're considering Amiodarone, do some research on it before you decide to try it. It's very toxic stuff.

 

[Marge]

<<I wouldn't hesitate traveling for any length of time with the test unit and the knowledge that the doctor was just a phone call away. Home testing (or Road Testing ) maybe something you'd want to look into.>>

Ah, see, that is the problem -- having "the doctor just a phone call away." I don't think so, for some of the projects we have (or maybe at this point I should say HAD....)

OTOH, my primary says he knows a guy who takes coumadin, has a home testing unit, and a sailboat, and is gone much of the time, and he is sure this guy is often for weeks & even months where there is no doc to call. So maybe we don't have to junk ALL our plans; just adjust some things.

Thanks to everybody for the input/suggestions. As usual, just having the opportunity to vent and discuss here is a great help. People I might talk to who have not dealt with these issues themselves may be sympathetic but there is a limit to their sympathy -- and it is only sympathy -- they really DO NOT UNDERSTAND what the concerns are.

I have a call in for my cardio & will report on developments.

 

[Ross]

If you can get a machine and learn to manage your own dosing, there is no reason on earth why you can't pursue the things you want to do. Many of us already are doing our own dosing.

 

[Marge]

Marge,

I know there are meds that can control A-flutter but I am not sure of all the names. I use Inderal which controls the flutter but not my A-fib. However, I found the flutter much harder to deal with than the fib. I hardly notice when I am in fib but always knew the flutter was around. I will always be on Coumadin due to the fib but I also have a mechanical mitral so it doesn't really matter.

If meds don't work for you, there is a procedure called ablation that can control A-fib & flutter. I do not know who is a candidate and, as all such procedures, does carry some risk but may be an alternative to long-term Coumadin.

Definitely talk to your cardio and explain you want to investigate all options. Push him if he seems hesitant and make sure you get all your questions answered. It is possible that Coumadin would be the only treatment (and not really a treatment but a safeguard) but it doesn't sound like everything has been covered yet.

Good luck.

Somebody explain to me the difference between A-fib and A-flutter? I've read stuff on the internet but I don't quite understand. The sources seem to lump the two together for purposes of discussion.

Is one worse than the other? Are the treatments for both pretty much the same?

I am really still confused about this. When I had my surgery we decided that if I had to have a valve replacement it would be the Carpentier Edwards bovine valve -- however, my surgeon was very definite that "if I am able to repair your valve, you will not need coumadin anyway except for three months while your ring bonds -- unless you go into atrial fibrillation, and there's no indication from your record or your condition that you would do that."

I had one brief episode of A-fib at the hospital (a day or so after I got out of ICU) which was reversed within minutes & since then I have been told after all my tests that I was in normal sinus mode with maybe a few PVCs or PACs.

Nobody ever said anything about A-FLUTTER, just A-fib.

I had a great recovery, very easy, and I've had over a year since the surgery with NO problems to speak of. For which I am, of course, very grateful. (Maybe it was all TOO easy & I've been living in a fool's paradise.)

So this is all new stuff to me.

 

[Nancy]

Oops-wrote it backwards, here's the correction afib is irregular and fast, aflutter is regular and fast.

Unfortunately, this is all part of the human condition. If our bodies were machines, we would have guarantees. But we are extremely complicated in so, so many ways. No one can give anyone guarantees, just the best educated guesses at the time. Our bodies are evolving every second of every day.

It always disappointing when something that's not supposed to happen does.

There is an outside possibility that your own body will convert back to normal sinus rhythm too. Joe was in afib for a long time, and then he wasn't.

As others have said, there are meds and procedures that can help. It sounds like this is virgin territory right now, and something you should discuss with your doctor.

Are there any plans to do an echo or TEE to check on your repaired valve and your others as well?

 

[Marge]

afib is regular and fast, aflutter is irregular and fast.

Unfortunately, this is all part of the human condition. If our bodies were machines, we would have guarantees. But we are extremely complicated in so, so many ways. No one can give anyone guarantees, just the best educated guesses at the time. Our bodies are evolving every second of every day.

It always disappointing when something that's not supposed to happen does.

There is an outside possibility that your own body will convert back to normal sinus rhythm too. Joe was in afib for a long time, and then he wasn't.

As others have said, there are meds and procedures that can help. It sounds like this is virgin territory right now, and something you should discuss with your doctor.

Are there any plans to do an echo or TEE to check on your repaired valve and your others as well?

I've had a number of tests fairly recently: echo, TEE and MUGA, all in the latter part of 2004. The reason I had the TEE and the MUGA was because the echo results were a little screwy. According to the TEE and the MUGA I am in great shape. (Among other good results, my EF has returned to "normal" range according to the MUGA.) And I am feeling very good.

I had the EKG on orders of my PCP after I came back from France -- I was feeling rotten because I had a bad bout with the flu there (apparently, a different strain than the one I was vaccinated for here). The EKG noted "wandering pace-maker," which then led my cardio to order the Holter, which showed the arrythmia.

 

[Marge]

Update:

Just talked to cardio. He explained differences between a-fib and a-flutter. He says difference is basically that a-flutter is "more organized" than a-fib: with a-flutter you have up to 300 electrical impulses from one or two locations in the atrium, whereas with a-fib you have electrical impulses shooting out in a confused sequence from many different locations in the atrium.

He said that when he was in med school (in 80's) it was thought a-flutter was less serious than a-fib, but now after many studies, they think they are equally of concern, and they use basically same treatments. Also, he thinks I could possibly be going from a-flutter to a-fib and back at points not picked up by the Holter because it is only on for 24 hours.

He says my heart rate is quite regular & is well controlled by my beta blocker (coreg). He said he COULD theoretically have me in the hospital for electrical shock to reverse the flutter, followed by anti-arrhythmic medications, but he also says the anti-arrhythmics can be harmful to someone with my heart condition -- more harmful than the flutter itself -- & that anyway I could go right back into a-flutter or a-fib weeks or months after the electrical shock procedure. So it sounds like he does not want to do any of that. He doesn't seem to think there are any long range dangers from the flutter itself. He does not think I am a candidate for electrophysiology (sp?).

So basically it is now back to a decision as to coumadin. He didn't seem to be too concerned if I chose not to take coumadin. He says he has patients in my situation who chose not to (for various reasons) and are doing fine. He seems to be OK with the idea of me being just on aspirin. He said the difference between the risk with coumadin and the risk with just aspirin isn't that huge. I asked him about the cumulative risk over the years, based on the calculations offered me on the board. He doesn't seem to take much stock in the idea of cumulative risk. He said: "It's the same risk -- you have a certain chance of having a stroke this year. You have the same chance next year." And so on through the years. Oh, he did say one other thing: that I am in a different, less potentially disastrous situation just being in a-fib or a-flutter than people who are on Coumadin because of a mechanical valve. If I had a mechanical valve he wouldn't be taking such a laissez-faire approach.

I still have to contact the Kaiser Anti Coagulation Clinic and ask them re: fingerstick and/or home testing -- questions the cardio could not answer.

 

[geebee]

Marge,

It sounds like your cardio does have some of the answers you need. I know when I looked at my EKGs from A-fib & A-flutter, the A-Flutter looked like regular heartbeats but very, very closs together. The A-fib EKGs had beats much farther apart but it looked like someone kept bumping the machine - very erratic.

I have a home tester (INRatio). It is very portable and easy to use (I always have spare batteries with me as I haven't bought the AC adapter yet). I test weekly, change my own dose if needed and report to the cardio every 2 or 3 months. So it sounds like things could work out for you as far as testing. Now, if you are planning on climbing Mt. Everest or living in Antartica, I would be concerned about injury on Coumadin as well as having a stroke and not being able to get to a doctor. Tough call. However, bleeding most always stops with pressure. A stroke is a little harder to deal with in the field.

Again, it is your call. This site is here to give people advice and share experiences. I have had TIAs so I will try to avoid a full blown stroke as much as possible.

FYI - insurance companies usually have traveling a lot as one of the main reasons they approve home testers.

 

[tobagotwo]

Regarding the page with warfarin statistics, there are several things that should be pointed out...

- The fatality risk with warfarin vs. placebo had a 1.65% difference (4.65% vs 6.3%).

- This is a comparison of warfarin vs. nothing at all (placebo), not a comparison of warfarin use vs. aspirin. Aspirin would also have improved numbers vs. placebo. By inference, the difference would have to be less than 1.65% for these studies, minus the percent positive effects of aspirin. That doesn't jive with the 2% difference the doctor gave.

- The bleed risk numbers have an asterisk to a note that the studies are "...excluding hemorrhages..." That kind of limits the outcome, if coagulation is the issue. In some ways, this is forgivable, inthat the INRs ranged fairly high in some of the studies (up to 4.8, although it doesn't say if that was a sustained INR).

Best wishes,

 

[Granbonny]

Marge

Marge

I have been reading these posts...but, no one has posted...Where would you get your coumadin pills..If you are gone for 3-6 months. I only get mine for 1 month at a time..but, nurse did mention ..she could order 90 days worth. I told her No..Wanted them fresh. IF, you were to go on Coumadin...would there be a close place nearby...that you could purchase them?...The guy in the Sailboat..what would have happened..if his was washed overboard. Remember, this is a pill that MUST be taken everyday... Traveling, Lost luggage, ect.... And also, must be taken around the same time frame of the day. So, you would have to check the time zones..when traveling. Daughter just returned from Russia...An 8 hour difference...Are you ready to do this? No, you will not feel much of a prick on Protime..machine. check them out..They are on front page of our VR.Com...QAS....and they will walk you thru what you need to do to purchase one. Love mine..3 years and NO problems. Hope I didn't confuse you again..but, the Warfarin pills are very important. Must have them with you EVERYDAY. Bonnie