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PAN

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Hey John ,

Sorry to hear you are dealing with the flutter right now. I hope with time the trauma of the surgery is forgotten by you heart. Hopefully you get some reassuring news from your cardiologist.

All the best ...

P
 

johnmarkos

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I had my appointment with my cardiologist. He says the arrhythmia is "small potatoes" compared to what I've already been through. I'm scheduled for cardioversion on Thursday, January 30th, and he believes it should do the trick, although catheter ablation is a possibility if it doesn't work.

I'm feeling a lot better emotionally after that appointment. My cardiologist says I'm "doing all the right things." He's aware of my interest in home INR testing, and plans to help me get set up with it.
 
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egar

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John,

You aren't alone. I experience AFib and AFlutter starting with my damaged mitral value (resulting from endocarditis). For two months after the valve replacement, I had the occasional flutter and was cardioverted twice. During flutter episodes, I was experiencing 150 to 160 beats per minute and the cardiologist said the atria was beating at twice that rate. I never felt bad, but it was very unnerving.

I underwent ablation just over a year ago. I was nervous about the procedure, but my concerns were unfounded. It was a simple procedure that totally fixed the flutter. I haven't had a single episode of flutter since the procedure. As an added benefit, my premature ventricular contractions (PVCs), that I had experienced for years also went away. I'm not sure if there is a common cause for flutter and PVCs, but I'm glad to have a very steady heart rate now.

If cardioversion doesn't work for you and the flutter returns, I'd suggest talking the an electrophysiologist about ablation. Mine said the success rate for fixing flutter is about 98% and the complication rate is very low, something like 0.2%. For me, I was in and out of the hospital in about 3 hours.

Good luck!
 

johnmarkos

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As far as I know, I'm still experiencing AFlutter, and probably will continue to do so until at least the cardioversion -- let's hope it succeeds! Nevertheless, I'm doing OK. My energy level isn't bad, and I'm doing all the usual surgery recovery activities: going for walks, using my spirometer, resting. My sleep is getting better. I still sleep in short 2-3 hours sessions, but I'm getting a total of over 6 hours a night now. Plenty of time to dawdle on the Internet at 3AM! Both yesterday and today, I started only taking Acetaminophen for nighttime pain reduction. That was a recommendation from my cardiologist, who wanted me to determine whether I was running a fever when I wasn't taking a fever reducer. I like the fact that I'm taking (and needing) fewer pain pills, too.

I've cut out both alcohol and caffeine to avoid exacerbating the arrhythmia. I don't really care about the alcohol, but I love coffee. I roast my own beans at home. I guess I'll roast beans for my loved ones and enjoy them vicariously.

My cardiologist isn't worried about my mostly-vegan diet with regard to anemia. I told him I would eat a steak if it was a medical recommendation to do so, but he didn't think that was necessary -- he says my anemia will get better on its own. He also said maybe it's a good idea for me to continue following a vegan diet, because I have zero blockages in my arteries.
 
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johnmarkos

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If cardioversion doesn't work for you and the flutter returns, I'd suggest talking the an electrophysiologist about ablation. Mine said the success rate for fixing flutter is about 98% and the complication rate is very low, something like 0.2%. For me, I was in and out of the hospital in about 3 hours.
I like those odds. I mentioned ablation to my cardiologist, and he'd like to try cardioversion first. He thinks it will work -- I hope he's right!
 

johnmarkos

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Unfortunately, my last INR test showed only 1.7, despite my increased Warfarin dosage. I haven't been eating ridiculous amounts of kale or anything! Now I'm going to cut out the iceberg lettuce salads I've been eating, too. I haven't really been vegan, either, since surgery -- more like ovo-lacto vegetarian. I've been eating eggs every other day, and I'll totally chow down on some cheese. As I mentioned before, I'd eat a steak if my cardiologist recommended it (he didn't). Multiple steaks, even.

Anyway, I'm worried that my cardioversion might be delayed -- I'm getting another INR test the day it's scheduled, Thursday. My Warfarin dosage is now increased to 7.5mg/day, every day (from 7.5/5mg alternating days).

On the happy side, my heart rate has gone down a bit! My RHR has dropped from a peak of 91 over the weekend to 86 today, and it got down into the seventies overnight, so it looks like the Carvedilol is working.

Also, I had two decent nights of sleep last night and the night before -- both over six hours, which exceeds my pre-surgery average, and without long wakeful periods.

The other bummer is that I keep getting these evening spikes in temperature, even though my temperature is normal-ish in the mornings. I'm told by the medical professionals taking care of me that as long as I don't have some worrisome symptoms, like shaking chills or a bad cough, it does not warrant an ER trip. I had my blood drawn on Monday, including WBC count, and I guess that was OK (haven't seen the results yet, but my doctor has). I'm getting another chest X-Ray this week, too. I can also take Acetaminophen for my temperature, but I'm inclined not to. The nurse at my cardiologist's office told me to limit it to 2g/day, so I'd rather reserve it for nighttime pain, so I can sleep.
 
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pellicle

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Unfortunately, my last INR test showed only 1.7, despite my increased Warfarin dosage.
I recall mentioning this recently, perhaps it wasn't to you

nothing wrong with 2 ... especially so soon after surgery you're INR is likely to fluctuate and its also likely that your dose will increase to maintain that INR over the coming months.

Best Wishes
This is a known and well documented thing which somehow eludes all medical people. Discussed (at least) here: How long did it take your warfarin dose to stabilise post OHS?

This from 2005
Impatient Inpatient Dosing | PSNet

Third, warfarin is highly protein bound to albumin, and it is the free or unbound warfarin level that interferes with activation of the clotting factors.(5) This means that hospitalized patients who have a low level of albumin are much more sensitive to warfarin because there is less protein binding and thus a higher level of free warfarin.(6) Patients in the hospital are often very sick, and those with an albumin level less than 1.8 can be expected to be very sensitive to warfarin. As patients recover out of the hospital, they generally require a higher dose of warfarin.

So always follow the rule that: the intention to treat with Warfarin is the INR ... so if INR is falling, adjust dose up. This simple fact seems to remain a mystery to so many involved in its administration.
(*facepalm*)

*PS there is a bit of ambiguity with INR / Dose and Intention to Treat ... I can introduce you to that rabbit hole if you like.
 
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pellicle

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Protimenow

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Hey, Johnmarkos - if you can, get an INR test meter so you can self-test. Once your INR becomes stable, you can test weekly to confirm your INR or make minor (MINOR) adjustments to dosage so you stay in range. As far as I know, only two meters are available in the United States - the Coaguchek XS (and newer siblings that use the same strips), and the Coag-Sense. I personally prefer the Coag-Sense because its results tend to match the labs (if it's a good lab) or be slightly below the labs (and if you're aiming for 2.0 or so, it's comforting to know that if the meter says 2.0, it's likely to be between 2.0 and 2.3 when done by a lab), although the CoaguChek XS is also a good meter and is much more pervasive.

Regardless of your choice of meters, try to get one for yourself and test weekly.
 

leadville

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Hi John, As @pellicle explained the initial dose usually increases.

Your AC therapy is in the very early stages, given time you will stabilise, as an example i was initially 10mg daily then eventually stabilised at 15mg daily

Culling your greens is a poor idea, the greens are good for you, just dose the diet.



7.5 to 5 is not as good as the equal daily dose you are now on.
the alternating dose gives you more peaks and troughs than a stable daily dose, if you end up on more than 7.5mg then consider equalling out the dosage rather than alternating it.

good luck mate
 
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Protimenow

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Hi John, As @pellicle explained the initial dose usually increases.

Your AC therapy is in the very early stages, given time you will stabilise, as an example i was initially 10mg daily then eventually stabilised at 15mg daily

Culling your greens is a poor idea, the greens are good for you, just dose the diet.



7.5 to 5 is not as good as the equal daily dose you are now on.
the alternating dose gives you more peaks and troughs than a stable daily dose, if you end up on more than 7.5mg then consider equalling out the dosage rather than alternating it.

good luck mate
Years ago (before 2009), before I knew a lot about self-testing or the variability of INR if you don't take the same daily dose, I was doing like johnmarkos is doing - 7.5 mg one day, 5 mg the next. Ignorantly, I hadn't had my INR tested for many months - but I was lucky. I didn't have any negative events during that time without testing.

I know better now.

As leadville said, your INR will fluctuate if you take a different dose each day. Depending on the day of the week that you test, there will be a fluctuation, based on the dose you took 3 (or so, the half-life of warfarin seems to vary from person to person) days earlier. Taking the same dose daily gives you a more accurate picture of your INR.

Also -- I don't know what plan you've got for coverage (or none) of your own meter and strips. Your cardiologist is partly right - it takes a while for your body to determine the appropriate dosage to keep your INR in range. However - even if you're waiting for that to happen, you can monitor changes using your own meter. Also, while you're watching your INR normalize, you'll be going through the very small learning curve, so you'll be ready to self-test once you've established your dosage.

Meters are made to work, for any number of tests, with each test being accurate. The same meter may be used in an anticoagulation clinic, doing hundreds of tests a week, or they could have belonged to grandpa, who just died, and have a dozen test results on them. Either way, the meter should work.

Manufacturers of these meters have way too much to lose if their meters become inaccurate. You'll find meters - mostly CoaguChek XS, and often the meter that I use, the Coag-Sense, on Ebay. There is sometimes a wide range of prices. Sometimes a person sells Grandpa's meter, which Medicare paid for and doesn't want returned (who doesn't know what these sell for and just wants to get rid of it or see it going to someone who needs it), or meters that a hospital or clinic sold or auctioned off once they were amortized (about 3 years), or from dealers who sometime came into them. If you buy a meter, it's a good idea to buy from a seller who guarantees it - or at least guarantees against DOA. For the most part, any meter you get - that isn't already described as 'not working' or 'as is,' should work for you.

I've gotten all my meters (with one exception) on eBay. I've gotten many of my test strips on eBay. I haven't been disappointed by any of them. (Just be careful NOT to buy a Coaguchek S (it's discontinued and no strips are available for it), or an InRatio (a machine with numerous FDA complaints, that caused me to have a TIA, and that has been removed from the market).

In addition to the CoaguChek XS, there's also the Roche InRange - a meter with a better display and more features than the CoaguChek XS, but not supposed to be available in the United States (although some vendors ARE selling it). It takes XS strips and is 'sexier' than the XS, but the important thing - testing blood as accurately as the XS - is one of the capabilities of the new meter (which you CAN get on eBay).

The Coag-Sense is now available in two models: what they're calling the PT1, and a new, much higher-tech, PT2. (I have an extra PT1, if you're interested). The PT1 is their original model - it's larger than the PT2, runs on battery or charger, and has a monochrome display. The advantage to this, though, is that it's ready to use as soon as you press the power button. The PT2 is smaller, records 2000 tests, has bluetooth, Wi-Fi, an Ethernet port, and an NFC reader to read the lot number of the strips that you're using. It has a color display, and is a pleasure to use. If there are any firmware updates, these can be automatically downloaded via Wi-Fi. It takes a bit longer from power button push until ready to test, but it's usually worth the minute or so wait. In my testing the results of the two meters, with blood taken minutes apart, were nearly identical (a requirement for FDA approval), with equal INRs and a difference of .1 seconds.

Until you get the hang of testing with the Coag-Sense (not a big deal), the CoagChek XS may be slightly easier at first. One other difference - the XS strips start to degrade as soon as you pull them out of their container. If you don't deposit blood within five or ten minutes (I forget the number) of removing the strip from the container, the strip becomes unusable. The Coag-Sense strip is different - it can last for hours (or days) - even after you remove it from its foil pouch. The test method is different from the XS - it uses a rotating wheel built into the strip and, once you apply blood to the collection well, the blood mixes with the reagent, and the wheel spins until it is stopped by a clot. A sensor detects when the clot forms, and the meter reports prothrombin time and INR. Until you deposit the blood, the strip isn't activated, so it's harder to waste strips. Opened, but unused strips can be stored in a ziploc or similar bag.

I didn't mean to give a tutorial and review of the two meters available in the U.S.. My point is this : if you can, get yourself a meter. Self-Test. If you have to use a service, you can compare your meter's results to those of their meters (or blood draws). If you HAVE to use a service, where you self-test and call in the results, I guess you may have to - but if there's a high co-pay for the service, or if you don't like them gouging your insurance carrier, it may not make much sense. You can do it yourself.

There are many resources on this site (especially Pellicle) that can help you self-manage.

Again - sorry about this long message - but, for me, it's very important that anyone who NEEDS a meter HAS a meter, and that weekly testing can be done.
 
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Protimenow

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'Allowed' is the operative word. This is because it usually takes around three months for the INR and dosing to stabilize. Self-testing before the three months are up will let a person track the changes. Plus - if the clinic or doctor only has testing done every other week, or every month, self-testing during this period might give a better view of changes while the body adjusts to the warfarin. (Just don't nag the doctors during that adjustment period).

If you can find a good deal on a meter during that three month period, and want to self-test, you might consider grabbing the deal, and a few tests just to learn how to use the meter.
 

pellicle

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FWIW, where I live, you have to wait three months before being allowed to self test.
I think it was the Mayo clinic, but none the less a study was done where suitable patients were introduced to self testing before they were discharged. These patients performed pretty well, as well as or better than any at a clinic and remained on self testing.

I'll see if I can fish it out
 

Protimenow

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I recall that one or more patients were given a meter before discharge -- one or more said that it was included with their valve.

Unless a person isn't able to self-test (compliance issues, dexterity issues, visual issues, etc.) it should be considered good practice to let them try self-testing.
 
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