I it possible to GET OFF coumadin via other medications?

[LA_Cruiser]

When I read part of 'A patient's Guide to using COUMADIN,' prior to my aortic valve replacement operation I told my doctor that I couldn't see myself with a mechanical valve.

I told him that I'd feel like a slave to such medicine much like a junkie is when hooked on those filthy drugs so prevalent due to too many drug lords and not enough of our 'supposed' leaders going after them (you and I know, for a fact, that some of our politicians and leaders 'are on the take,' I'd sure like to know the percentage).

I told my doctor that I'd rather have a porcine valve and not be a slave to any drugs to which he replied that such only last about ten years. Ten years is all I need doc I said, that'll be fine with me. He indicated that even 10 years was not a guarantee that It might last 5 years or even one.

One? No, give me the mechanical! --I figured, I'll find a way to get off this enslaving drug somehow.

Can it be done, 100%?

THX & God Bless

 

[Johnny Stephens]

Marco, I'm not aware of any way currently to reduce the risk of clotting on your new valve, other than Coumadin/warfarin. There is another drug ("Exanta", I believe) that is still a few years away from approval for heart valve patients. I'm sorry that you feel 'enslaved' by this drug; I really don't understand what you're trying to get at here when I see references to 'filthy drugs' and drug lords. This is not an illicit drug such as heroin or LSD..it's a lifesaving medicince just like many others that are used to keep people well and alive.

It's important to remember that you are really just now out of surgery, and I suspect going through some period of adjustment to your dose and the routine of taking a pill everyday. Yes, you do have to pay some attention to consistency in your diet, but that will become second nature in time. Having to take Coumadin is a serious matter, to be sure, as it does bring along its own set of risks. But I think if you give yourself a chance, you will be able to adapt to where you don't feel enslaved.

Glad to see you posting again.

 

[Granbonny]

Marco

Marco

Notice you are on computer..3 a.m. your time. Are you having a hard time sleeping?...Do you have pain? Do you take your pain meds or tylenol?.....I hopeyou walked some yesterday..If you want to get well and help get the drug Lords out of the country..walk, take your little coumadin pill..and try to nap, nap, nap...Open-heart surgery is a slow everyday recovery .....You must not be a pumphead(heart, lung machine causes it)..because you are on computer..I couldn't talk on phone and make sense Take care...Bonnie

 

[Nancy]

Hi Marco-

Having a mechanical valve, you may not ever have to face heart surgery again . You will have to be on Coumadin for the rest of your life. It's not an "enslaving" drug, all it does is keep blood from caking on your new mechanical "car" part, as one of Joe's doctors referred to it. Nothing else in today's lexicon of medicines works.

There is a wonderful website which belongs to one of our great professional members, who runs a Coumadin clinic. His name is allodwick and his website is warfarinfo.com.

Eventually it will become just a part of your life. You will always have to be monitored to get the proper dosage of Coumadin, because it can fluctuate quite a bit, and you can try to guess at what would make it fluctuate, but there are so mnay variables, it's hard to determine.

If your Coumadin INR gets too low, you could have a clotting incident which could be a very serious problem. If your Coumadin INR gets too high, you could have an internal bleeding incident, which could also be a very serious problem. That's why it has to be regulated. Some folks on this site have their own blood testing equipment. They do, however, discuss the dosage with their doctors. It's nothing to fool around with, like going off it, or making up your own dosage. A clot could ruin your new valve, and cause another surgery or worse, and after all you've gone through, you wouldn't want that to happen.

There is a three day lag time from what you do today to when it will show up in your INR results. This is an interesting thing for new Coumadiners to know.

My husband Joe has been on Coumadin for 25 years. He's very, very used to it. You'll get used to it as well. At the beginning, it seems like such a pain and kind of invasive, getting blood tests all the time. But think of what diabetic people have to do. They have to test once or more per day. Once you get more regulated, you'll only have to be tested on a monthly basis, as long as everything is staying stable.

You've joined the club.

Take care,

 

[MarkU]

Hi Marco,
To me it was an easy choice to go with the mechanical valve; and for sure, having been through it once, I never want to go through open heart again if I can avoid it.
If it was a perfect world, I'd also prefer not to have to take the Coumadin, but considering the alternatives it's acceptable. Actually, I don't mind taking the little 5mg Coumadin pill as much as I do the big horse pill multi-vitamin that my doctor has me take everyday also.
I knew I was eventually going to need a valve replacement from the time I was 5 years old, some 44 years ago. If I had it done then I would have gotten one of those Rube Goldberg ping pong ball gizmos and probably wouldn't still be around to write this now. Medical technology advances very rapidly and there may well be viable alternatives to Coumadin well within our lifetimes.
As Nancy mentioned, allodwick's website is a good source for info, and I have found the information on interactions particularly helpful. He also is on top of the new drugs in the pipeline, so I'm sure he will keep us updated on progress in that area.
My reaction to most of the Coumadin literature published by the drug companies was that it was probably written by their legal departments and it is mostly CYA stuff. My surgeon and cardiologist, along with those on this site have been most helpful in providing info that helps me lead a pretty normal life, even on Coumadin.
Are there people "on the take" from drug companies? Probably there are some, but I have faith that most aren't.
Hang in there.
Good luck,
Mark

 

[LA_Cruiser]

Today will be my third day off coumadin (I ran out of it, --the 2.5 mg dosage). Card prescribed a new dosage; 3.0mg and I got a prescription for two pills (to last me through my coumadin test).

I still have two 'old' dosages' (I'm glad I didn't throw them away after getting the new dosage) though saving them 'for a rainy day' (who knows WHEN I'll get to coumadin lab?).

I thought that when I went to my first outpatient appointment I'd be checked for my Coumadin INR level also.

The card portion went 'uneventful,' and the attending doctor told me I'd be checked by the coumanin lab after they where done with me.

Later a nurse told me the same thing, to take a seat 'till I was called. It was 2:30 PM and I thought 'nice,' I've still got plenty of time to take the bus to Long Beach and pick-up my medicine that I'd forgotten there four days ago (especially the one the doctor told me had landed me in ER for not having taken it for three days). Now you know why I detest these 'strict' regimens.

I felt so weak and tired that I took various naps (on a chair?). Upon waking up on my last nap I noticed that it was almost 4:00 PM.

Dazed and still half-a-sleep I immediately stood up to walk to the nurses station to tell them that I'd come back another day for the test that I couldn't wait any longer as I still had to go somewhere else. I started to walk left ways and as I stepped on my left foot I headed to the floor.

From there on I know God intervened for me as I still don't know why I didn't hit the floor. The reason I headed for the floor is that I didn't 'feel' my foot touch the ground, as I was still half-a-sleep when I tried to stand up and my foot was numbed from the position it had endured on my last nap.

I sat down again to catch my breath, wake up fully and to let my lazy left foot regain conscience. After about a minute I slowly got up and started to walk towards the nurses? station. I told the nurse the aforementioned to which she replied; go to that such-and-such-a-door and ask for the coumadin nurse.

I went and Informed her that I was leaving, that I'd come back 'tomorrow' to which she replied, tomorrow is Christmas and we are closed. 'Sol right I replied I'll come back the next day, Thursday. I told her I had been waiting since about 2:30 PM.

What's your name (--have I seen you before, --'so goes the song, but that is a tune for page two) When I complied she answered, you're not on the computer, you had an appointment for the 18th and you didn't call to reschedule. You need to make an appointment first before coming in (all this time I figured that card/coumadin are one and the same but no there are 'departments,' how stupid of me.

On a situation like this I like to play dumb (yes, more so then I actually am) to 'test' the helpfulness or shoddiness in service of 'people fronts.'

She said no, you've got to make an appointment first, to which I replied, all right I'll 'call' and do so (at which point she could have said, 'let's see, we can do that here right now you don't have to make that call (but maybe that's 'the process,' calling the 'appointment-giving department).

I said thank you, By, Merry Christmas and God Bless, I'll call to make the appointment 'day after tomorrow.

The more people 'you are forced to meet,' the more potential problems you'll run across.

It is estimated that businesses loose about 68% of their customers due to an 'intermediaries' (employees?) with a bad attitude.

That's why I LOVE the internet so much, I can order merchandise directly without having to 'meet' all these 'sour pusses.'

God Bless all

 

[MarkU]

Sorry you had such a bad experience.

Whatever you do, don't let a situation like this do anything to compromise your health or treatment. You're the consumer/patient and getting a little nasty or demanding would be justified in my view if that's what it takes to get some attention.

Don't put your health at risk because of some reception desk jerks! I would demand to speak to your doctor directly and tell him what happened - I bet that he would be able to get you squeezed into the schedule at the Coumadin lab.

A few months after my surgery there was a mix up getting a renewal of my perscription faxed to my pharmacy, but my pharmacist went ahead and gave me a few days worth of Coumadin for free until the paperwork was squared away.

Whatever you do, please don't stop taking your Coumadin...


Mark

 

[Nancy]

Joe's doctor gives him a permanent script at the Lab for his INR checks, it's a year long one, I believe. Insurance requires a script and so do the labs. They cannot just do whatever test without a script.

Marco, with Coumadin, you will HAVE to be on a regimen. There are certain time constrictions to the testing and you will HAVE to adhere to it, like it or not.

I know you're a man who likes to do it "your way", but in this one instance, you will have to be your heart's best friend and be on time for your appointments, and you will have to take your Coumadin EXACTLY as the doctor tells you to do and then get there for the next test. You will also have to take your Coumadin at the same time each and every day unless you are told to hold it for some reason or another.

By skipping doses, you are going to be putting yourself in the condition of see-sawing with your INR. It's very difficult to regulate under these circumstances. Plus you will be putting yourself in grave danger.

None of us want to see you get sick again. Please take care and stay with the program.

If you feel you were mistreated at the clinic, by all means discuss it with the doctor, but do not stop your Coumadin, and do not try to guess at the dosage yourself.

 

[LA_Cruiser]

Nancy Nance Nancy.....

Nancy Nance Nancy.....

...what would I do without your 'lecturing?' (just kidding

RE: "I know you're a man who likes to do it "your way", but in this one instance, you will have to be your heart's best friend and be on time for your appointments,"

>>>Why then do you think my favorite 'freebie' e-mail account is 'powered' by "MyWay.com," with my area code, 310 as my ID?

RE: "and you will have to take your Coumadin EXACTLY as the doctor tells you to do and then get there for the next test."

>>>I've become 'very forgetful' after this operation. One time I forgot If I took 'the pill' or not, so I did as I had been told If this should happen, I let it ride. Appointments?, --I forgot my Dec. 18th appointment but thought that they would see me when I had my card appointment on the 24th, how wrong I was!

I was taking a shower this morning (I prefer to shower before bedtime BUT seems like I'm forgetting to do so lately).

Any way, --I closed my eyes to wash my face with soap (what else?) and was 'startled' when I saw 'black,' I thought WHO PUT OUT THE LIGHTS?

We're talking 'a split second' here, --and I immediately (subconsciousely?) opened them to find out that 'I' had shut out 'the lights' by closing my eyelids!, --talk about split-second loss of memory, I 'forgot' that I had turned off 'the lights myself.'

Talk about memory loss, and we're talking 'a-fraction-of-a-second' here.

RE: "You will also have to take your Coumadin at the same time each and every day unless you are told to hold it for some reason or another."

>>>Of course those 'are my intentions'

I called for an appointment today and they gave me a Jan. 2nd 8:45 AM 'slot.'

With two 'old 2.5mg coumadin pills' I'll have to 'ride this out' (one pill for the 27Th, --tonight, and another for the 31st.)

God Bless all, yes all 365 and-a-quarter days and for 10,000 years more

 

[Nancy]

Marco-

My kids call the LBLs (Long boring lectures), and yes, if you don't behave, I'll lecture you too.

What you describe sounds like a small embolism which passed on through your optic blood system. They are common, and are sometimes caused by not being good about taking your Coumadin, or not having good anticoagulation!!!!

My husband has had many of them when his Coumadin level dipped.

Please remember what I said about blood clots coming off your valve. Please be very careful with the new life God has given you.

TAKE YOUR COUMADIN AS DIRECTED AND GET TO ALL YOUR APPOINTMENTS, NO EXCUSES!!!

 

[Rich]

Marco,
I have to go along with Nancy and give you a lecture(and I'm old enough to do it).
Missing some pills might not hurt you but with Coumadin you are risking your life!!
I am also sorry you had such a lousy experience, sounds like it was your doctor's fault for not giving you a scrip for the blood test. Like Nancy said a new scrip is required by law every year.
Get set on a strict regimen and don't vary it if at all possible.
I take mine at the same time every day no matter what, I even make allowances for the time change around here.
I havn't changed my dosage since my surgery and that was about six and half years ago.
My hospital has recently opened a second lab just for patients like myself who go every month. There is no waiting and free parking,10 minutes and I'm out of there.
I don't feel like a druggie since this stuff keeps me alive and well so just give it all a little time to settle in.
I just retired from GM where I was an engineer at the GM Design Center for many,many years so I know a whole lot about automotive design.
I hope I don't sound snotty but you are scaring all of us right now and we want the best for you since you are now part of this family.
So you had better listen,GOT IT??

 

[LA_Cruiser]

...Guys, It's not like I'm rebellious or stubborn.

My problem/advantage is that I'm a type 'A' (with the misfortune of abrupt fluctuations towards 'AA' and 'AAA').

I need to take meditation lessons to 'soften' these abrupt shifts. Sometimes I wish I were a type ?B.? I go to extremities from patient to impatient very easily.

I do 'the best I can,' --for the circumstances.

God Bless all

 

[Nancy]

Well, Marco-

It doesn't make any difference what type personality you are.

JUST TAKE YOUR COUMADIN AND GO TO YOUR APPOINTMENTS. Be organized in this aspect of your life, so you don't ruin the good that has been done for you.

You must take good care of your health now.

 

[Rich]

Marco,
It is perfectly OK to be a type 'A'.
But now you have a new lease on life and will have to change your priorities a little.
First things first and your health has to be number 1, without your health youv'e got nothing.

 

[John & Joann]

Coumadin

Coumadin

Joann has been on Coumadin for over 31 years. This may be a world record. She even slowly adjusts her medication when traveling between time zones.

Lecture Number 9.

1. You need to take the medication as scheduled.
2. You need to have your blood tested as scheduled.
3. You need to keep your diet consistent.

If you follow these 3 simple rules, you will live a normal life.

If you do not follow these rules, I would suggest that you meet with your lawyer to review your will, funeral director for arrangements, and minister/priest/rabbi to give directions for your final days.

You CAN NOT monkey with this medication and procedure. 20 years in a nursing home with a stroke may be the result of your actions. Think of your family!

Sorry for being so strong, but this is life or death!

John for Joann
Clicking and Living in Western Ohio
Go Browns!

 

[Guest]

Marco,

You should have gotten a porcine valve because the way you describe not taking care of yourself and your warfarin you are unlikely to live a year.

Seriously if you live a year, you may be paralyzed from a stroke caused by a clot on your valve. Then you will have a type A personality in a type Z body (and I don't mean a Camaro!!!).

There is no such thing as not having time, forgetting not keeping appointments etc when you have a mechanical valve. Your number 1 priority every day is to keep your INR in the range so than you can enjoy another day.

Guys your age like to think that they do not need pills, but when they have a mechanical valve they do.

Either get on board with the Coumadin or write your will while you can still move your fingers to type.

 

[joy]

Marco, you might not like what we are telling you, but I am new to coumadin too, and have just had to grin and bear it. As a 25 year old WOMAN, I like my chocolates and my soda. I may have to have my coumadin dosages adjusted, but those are the only two things I am not willing to give up. I inject my lovenox every night at 6:15, and take my coumadin at 7:00.

The reason for my coumadin useage(I have a tissue valve) is because of my irregular heart rhythems(not necessarily afib, we're not sure) I threw a clot on tuesday evening while I was in the grocery store. It just hit me, and I suddenly felt like the whole room was leaning to the right and I felt like I was falling to the right, and couldn't walk straight. I know you don't have little kids, but I do, and I have a husband, and they all need me to be here for them. So when I got home(I drove home very stupid, I know)I called my cardiology fellow on call, and they told me to go into the ER right away. well, after sitting there for what, 3 hours, while my husband is out in the waiting room with my kids, they said they couldn't tell me whether or not I had thrown a clot or what, so the next day I called my cardiologist, and he immediately put me on coumadin. That is whyyou have to take your coumadin. It's important. You wouldn't want to have a stroke now, would you? Why put yourself at a risk for that? You could end up paralyzed and unable to take care of yourself. DON'T mess around with that!
Take it easy!
Joy

 

[Guest]

Joy,

It must have been terrifying. The reason they kept you so long was probably that they were trying to figure out if it would happen again.

If you have to stay on warfarin, you have a person who has literally written books on warfarin right there at the University of Washington Medical Center -- Ann Wittkowsky. Please give her a call.