A-flutter: Coumadin or not?

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Granbonny said:
... Must have them with you EVERYDAY. Bonnie

Just in case I get kidnapped by terrorists, I have several days' supply in a waterproof container on my key-ring.
 
Marge, my brother has not had valve replacement, but he is on coumadin for the same reason as you. He goes from a-flutter to sometimes a-fib and back again. The coumadin is to prevent stroke, same as you.

He had cardioversion some yrs back, and it worked for awhile, but didn't stick. I take him to hosp lab once a month or whenever I am told to go, if it's more often. He is in assisted living so the self testing wouldn't do.

Sounds like you are mostly concerned with the lab vein draws. Don't blame you if there is an easier way. I guess since all of the above posts, you will be considering the self testing that requires only a finger prick. Sounds like a good plan to me.

To the original question, tho, sounds like you will be on coumadin from here on. You won't want to take chances.

P.S. I have a cousin on it for the same reasons. He has no trouble. Don't know if he self tests, tho.
 
Granbonny said:
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. :eek: 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. :eek: Remember, this is a pill that MUST be taken everyday... :eek: :eek: :eek: Traveling, Lost luggage, ect.... :eek: 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
Bon I just got 2 brand new bottles of 100 and the expiration date is 10/2007, so they will stay fresh as long as proper storage is followed.
 
I get 90 day supplies all the time. Marge, if you use a national pharmacy, you can refill them at any of their stores. Walgreens, Osco, CVS or whatever.
 
I have had both Coumadin & warfarin around for over a year. Because of vairous dosage amounts and insurance company allowances, I always ordered as soon as I was able to (usually each 90 days). That habit gave me quite a "stash" of rat poison.

I always use it up way before the expiration date and keep it in a pantry away from light & moisture. I have never had much INR variations over the past 25 years so I don't think it needs to be fresh. I feel much better having a supply on hand. You never know when an emergency of some kind might happen such as fuel getting too expensive to drive to the drugstore (or causing shipping surcharges). OOPS - that has happened :eek: :eek:
 
Well, today I talked to the head of the Kaiser Anti Coagulation Clinic. The bottom line:

1. Kaiser labs do not do fingerstick tests.

2. Kaiser does contract with Home Health Services who send nurses out who do fingerstick tests. You are not eligible for this service unless you are homebound. (Which of course I am not, and that is not what I want anyway.)

3. Kaiser Anti-Coagulation Clinics do not deal with people who do home testing. Basically, they know NOTHING about home testing. When I mentioned that I know people with mechanical valves who do home testing (I meant you guys -- well, I do "know" you), she said (1) the units are very expensive; and (2) they have no knowledge of how "reliable" they are.

4. Basically, if I got a home testing unit & paid for it on my own, I would, I guess, have to find a lab outside the Kaiser system that would work with me on it. The Kaiser Clinic doesn't know of any place to refer me to; and I don't know how could coordinate the whole thing with my doctors who are, of course, Kaiser physicians.

5. They can work with me if I travel, as long as I am somewhere where I can get tested at appropriate intervals at a lab. (They have forms which they would give me for the other labs to fill out & fax to them.)

Well, I have two things left to do before I make a decision:

1. Talk to my Primary Care Physician. When this issue first came up about coumadin, I seem to recall he said something about home testing. (I am not sure exactly what.) Maybe I can work out something with him.

2. Talk to Kaiser Patient Services. I do not think this is going to help me, but my husband thinks I should talk to them, and at least register my concerns, so it will be on record and possibly help people who want to home test in the future.

What I think may be going on here: Kaiser simply does not want the complications, or the potential risks of dealing with people home testing. When I was on coumadin for the three months after my repair, I had a chance to see the other people who were coming in for coumadin testing. Most of them were very elderly and in various stages of creakiness and mental confusion; I guess if I were running an enormous operation like Kaiser I wouldn't want to take a chance on people like that home testing either.

You may tell me, get out of Kaiser and get different coverage; but Kaiser's coverage is good. And Kaiser has been very good & thorough through all this heart stuff (and also through my husband's various medical events -- prostate cancer, knee replacement, etc.). I have had less trouble getting the referrals and testing and other procedures I needed than a lot of you seem to have had, and no hassle contacting insurance and/or filling out paperwork or filing appeals. So I am reluctant to leave Kaiser over this.

As I think I already said: my cardio does not seem too alarmed about the idea that I might not go on coumadin & might do aspirin instead. He says he has a number of patients who don't take coumadin for a variety of reasons. He says he wouldn't be so relaxed if I had a mechanical valve, obviously.

I still do not know what do to.

One more question:

How often do most of you test?

(During the three months I was on coumadin, I tested 2x a week at first and then as my INR stabilized the draws got less frequent; by the end of the three months they were going to start me on once a month testing. My mom was on coumadin after a pulmonary embolism, and I remember she only tested once every three months.)
 
Granbonny said:
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. :eek: 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. :eek: Remember, this is a pill that MUST be taken everyday... :eek: :eek: :eek: Traveling, Lost luggage, ect.... :eek: 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

I guess the guy in the sailboat, if he had a mechanical valve & lost his pills, would have been at risk to develop clots and have a stroke. I imagine he accepted that risk but sailing was important enough to HIM to do it. I suppose he would have been very careful to keep his pills in a watertight container & where they would not be likely to wash overboard! (Ditto his home testing unit.) Otherwise he would have had to put into some port to replenish his supply, I suppose, and then try to get his INR back in range ASAP.

As for the time zone issue, well it would be the same for many meds.

When I was on coumadin, I was told to take the medication as much as possible at the same time every day. I wasn't told it was a life or death issue if I was off a bit. Ditto with my beta blocker, btw. If you lead an active life it is not always possible to take meds at EXACTLY the same time every day.

But time zones are an easy thing to deal with. When travelling I use a time piece with a face that is set to give me both times -- the time at home and the time where I am. If it were important to take meds at the same time every day I would just refer to the home time.

As for where you would get the coumadin if you were travelling for long periods -- if you couldn't get enough pills for the whole trip, you would just have to get a prescription from your doctor & fill it where you were.

Travelers are usually advised to get doctors to give them prescription forms for any important medications to take with them anyway, just in case they lose their meds, or there is a travel delay, etc. I was in Italy in September 2001, when all the flights between Europe and the US were suspended for a while. It didn't affect me, but some stranded Americans who ran out of meds had to go get them refilled at Italian pharmacies. The ones who didn't have the prescriptions usually just had to show their bottles -- given the situation, the Italian pharmacists were very accommodating. If necessary, they would call back to the US to verify.

Travelers are also advised NEVER to place either medications or prescriptions in checked luggage -- but always have them in the carry-on in case of lost luggage. Ditto for any necessary medical equipment. Otherwise diabetics and anybody else with a chronic condition couldn't ever travel!
 
Kaiser doesn't know the reliability of home testing units.? However my local hospital's lab uses them, by cardiologist uses them, my family practicioner uses them. I may be wrong, but I think Al uses them. The ones that are sold for home testing are some of the same ones that hospitals and doctors' offices use. Our hospital lab's is a little more fancy schmancy in that it links into a computer and logs the patient info and INR into the data base.

My health insurance paid for 100% of my machine. Many companies will pay for at least some of it. It would be worth checking into for you.

No offense, but Kaiser is working in the dark ages. They are assuming that everyone on warfarin is old, infirm, has senility or all of the above and can't handle their own coumadin management. I don't know, but I would imagine that at one time, diabetics had to go through the same thing. But I don't know too many diabetics who don't handle their own daily glucose testing and dosing of insulin. I would like to see a day come when most cardiologists trust their patients to do exactly what endocrinologists have been trusting their diabetic patients to do for many years - and that is once they've learned the guidelines for testing and dosing, to then take charge of that themselves with the doctor serving as a go-to person for problem solving.

Diabetics travel. My Father went on several cruises and many bus trips before his death from heart disease. He just took his machine, testing supplies and insulin and went. Even when he had insulin that needed to be refrigerated. I'd like to see warfarin users feel they have the same freedom. It's ridiculous for medical personel to keep us chained to hospital labs.

I think that slowly the medical community will catch on, but I think those of us that home test are pioneers. I think the insurance industry seems to be catching on more quickly than the medical community.
 
Karlynn said:
Kaiser doesn't know the reliability of home testing units.? However my local hospital's lab uses them, by cardiologist uses them, my family practicioner uses them. I may be wrong, but I think Al uses them. The ones that are sold for home testing are some of the same ones that hospitals and doctors' offices use. Our hospital lab's is a little more fancy schmancy in that it links into a computer and logs the patient info and INR into the data base.

My health insurance paid for 100% of my machine. Many companies will pay for at least some of it. It would be worth checking into for you.

No offense, but Kaiser is working in the dark ages. They are assuming that everyone on warfarin is old, infirm, has senility or all of the above and can't handle their own coumadin management. I don't know, but I would imagine that at one time, diabetics had to go through the same thing. But I don't know too many diabetics who don't handle their own daily glucose testing and dosing of insulin. I would like to see a day come when most cardiologists trust their patients to do exactly what endocrinologists have been trusting their diabetic patients to do for many years - and that is once they've learned the guidelines for testing and dosing, to then take charge of that themselves with the doctor serving as a go-to person for problem solving.

Diabetics travel. My Father went on several cruises and many bus trips before his death from heart disease. He just took his machine, testing supplies and insulin and went. Even when he had insulin that needed to be refrigerated. I'd like to see warfarin users feel they have the same freedom. It's ridiculous for medical personel to keep us chained to hospital labs.

I think that slowly the medical community will catch on, but I think those of us that home test are pioneers. I think the insurance industry seems to be catching on more quickly than the medical community.

I think you are right about Kaiser assuming that "everyone on warfarin is old, infirm, has senility or all of the above and can't handle their own coumadin management." As I said, when I was going to the Kaiser clinic for the three months of coumadin that I had after my surgery, most of the people I saw there did indeed fall in those categories!

I also think you are right that eventually these attitudes will have to change so that people on coumadin have the same freedom to travel, etc., as diabetics. I don't know if this will happen soon enough to help me.

I do intend to continue raise the subject with Kaiser to the best of my ability.

I am not sure what else I can do, other than to switch health insurance away from Kaiser. I don't really want to do that. The people I know here in Northern California who have other insurances have had, in most cases, far more problems, than I have had with Kaiser.

Note: I am only talking about Kaiser in my area. Maybe Kaiser has different policies elsewhere, i do not know.
 
They know full well what it's about (Kaiser) they simply don't want to short themselves of any cash they can collect. This isn't something newly discovered overnight. It's been going on in Germany for years and at least 5 that I know of here in the states. Sorry, but this kind of bull ticks me off too no end.

As far as how often I test, weekly. I don't really need too, but I want too. It gives me better control over the whole thing.
 
Testing

Testing

I test every 3 weeks..unless, I think, I may have done something that would throw my INR off. like I was really concerned when I took so much cough med a few weeks back... Would you believe..a perfect 3.0 :D ..I tested yesterday..because I am going to a Derm doctor tomorrow. I knew he would snip a few things...Was on the high side.So, I tweaked last night. Back in range today.( I'm really wondering if it's true now that it takes 2-3 days for INR to show a change)Mine showed up in one day :confused: But, this is the beauty of home-testing.... :D If he finds something that he thinks may have to be removed..at a later date...I can check it before then. :) And try to have my INR at a lower INR (Not off coumadin)....If you don't want to change your Insurance. Just purchase one on your own....Expensive yes..but, worth the worry. :) Bonnie
 
Kaiser Anti-Coagulation Procedures

Kaiser Anti-Coagulation Procedures

Ross said:
They know full well what it's about (Kaiser) they simply don't want to short themselves of any cash they can collect.

Ross, I have to differ with you on this point. Kaiser does NOT collect any money for lab visits.

They don't use the fingerstick units themselves because you can go to any Kaiser clinic lab and have the protime drawn, but the anti-coagulation unit is centrally located. They do NOT want the lab people managing the coumadin & to control costs there isn't an anti-coagulation "person" at every clinic. Kaiser lab techs do expect anyone on anti-coagulation therapy to be older...I get so many surprised looks when I walk in there at age 42.

As far as home testing...well, that's something that we're all trying to deal with whether or not our Insurance and/or Doctors believe in it.

I agree with the premise that every coumadin patient should be called back the same day, but in reality...it doesn't happen more than it does. I know with Kaiser in the Denver area, if you get your test done before 10am, you'll be called back that day, otherwise they'll call you the next day. I make sure that I get in there prior to 10am because I know that little tidbit. I know that because I asked.

One of the great things about this site is that it teaches us all to be very proactive about our health. Unfortunately, it's mostly the proactive types that will seek out a site like ValveReplacement.com. I wish there was a way to reach the rest of the poplulation that just "does what the Dr. tells me."
 
Coumadin/Warfarin Home Testing

Coumadin/Warfarin Home Testing

Some references for Kaiser, concerning the efficacy of home testing. Virtually all studies show better outcomes with home testing than clinical monitoring:


Oral anticoagulation self-management and management by a specialist anticoagulation clinic: a randomised cross-over comparison
Cromheecke ME, Levi M, Colly LP, de Mol BJ, Prins MH, Hutten BA, Mak R, Keyzers KC, Büller HR
The Lancet - Vol. 356, Issue 9224, 8 July 2000, Pages 97-102


Self-management of oral anticoagulation
Levi M, Büller H
The Lancet - Vol. 356, Issue 9239, 21 October 2000, Page 1437


Self-management of oral anticoagulationFitzmaurice D, Murray E, Hobbs F
The Lancet - Vol. 356, Issue 9239, 21 October 2000, Page 1437


Self-managed anticoagulation: results from a two-year prospective randomized trial with heart valve patients
Pushpinder Sidhu and Hugh O. O?Kane
Ann. Thorac. Surg., Nov 2001; 72: 1523 - 1527.


Comparing self-management of oral anticoagulant therapy with clinic management: a randomized trial.
Menendez-Jandula B, Souto JC, Oliver A, Montserrat I, Quintana M, Gich I, Bonfill X, Fontcuberta J.
Ann Intern Med. 2005 Jan 4;142(1):1-10.


Patient self-management of anticoagulation: an idea whose time has come.
Beyth RJ.
Ann Intern Med. 2005 Jan 4;142(1):73-4.


Patient management of anticoagulation feasible
HeartWire Oct 25, 2003 Susan Jeffrey
http://www.theheart.org/viewArticle.do?primaryKey=236783


And an extensive list in PubMed: http://www.ncbi.nlm.nih.gov/entrez/...=Display&dopt=pubmed_pubmed&from_uid=15630104

The PubMed link above goes to about 130 articles, only 15 or so of which could be eliminated for not being quite the right topic.


Best wishes,
 
I was in a fib, off and on for about 10 years. I tried all the meds they have to stop it and they did not work for me, except to make me sick. I have been paddled back to normal sinus rhythm a number of times. I finally went to Boston to see Dr. Gregory Couper, at Bringham and Womens Hospital and I had a operation called the Maze , that fixed my afib. I am now living totally without afib and truly it was the best thing that has ever happened to me.

I would have had the Maze done if I had known about it years ago, and I wish I had. I am still on Coumadin , but that is for the St. Jude valve that I have. I am finally just so grateful for this group that is so informed and that I have been restored a better quality of life. Jenny
 
My Cardio approved my wanting a Protime at my 6 week post-op checkup..Said, sure...Then, He informed his Clinical nurse to write my script for Warfarin...and I call it to her..My INR .and she calls me back the SAME day..After office has closed. :) NO CHARGE to Insurance. :) :) One of the few things that I know of..that there is no charge for medical reasons. :) Over 3 years now..Bonnie
 
Kristy what I'm saying is that they know full well about patient home testing. They don't need to act as if they've never heard of it, because if that's the game they want to play, they haven't been attending any conferences. I know this has been discussed by some very big names and it's been in the medical journals too. Call it ignorance of the facts or whatever you wish, but they do know about it.
 
Kaiser in Denver has the biggest warfarin clinic in the US. I think that it has 7,000 or so people in it. The people that you talked to at Kaiser may not have known about home testing, but it is not that nobody in the company is aware of it. I know the guys who are in charge of the program and have been to those meetings with them.

It comes down to $$$ as in everything else. Just supplying those people with home testers would cost $1,400,000. Even if they got them for half price it would still be a big outlay. On top of that, they would still need the lab machine because some people wouldn't/couldn't do their own.

Many of the people in my clinic are retired union steel mill workers. They always did what they were told during their working life and really do not want to make decisions about dosing etc. When an INR is slightly elevated such an in the 4.X range, I often try to do what the person feels comfortable doing. (It makes little difference if you hold a dose and then lower the dose or just lower the dose without holding any.) I will ask, "What do you feel comfortable doing?" The answer is almost always, "I'll do whatever you tell me to do."
 
allodwick said:
Many of the people in my clinic are retired union steel mill workers. They always did what they were told during their working life and really do not want to make decisions about dosing etc. When an INR is slightly elevated such an in the 4.X range, I often try to do what the person feels comfortable doing. (It makes little difference if you hold a dose and then lower the dose or just lower the dose without holding any.) I will ask, "What do you feel comfortable doing?" The answer is almost always, "I'll do whatever you tell me to do."

I think it's a trait for that generation, unless bad experiences taught otherwise. I was raised by parents who thought that way and it took a doctor almost killing me with his mistake that made me stop my passive compliance with whatever a doctor told me. Unfortunately, there's so much misinformation about warfarin "out there", that we don't have the luxury of saying "I'll do whatever you tell me." Unless it's the likes of Al Lodwick standing in front of us. In which case Al, I'll do whatever you tell me! :)
 

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