Is it just me?

[lb151]

Is it just me or is anyone else scared to death about this coumadin thing? I have been taking it for 3 years because of A-Fib. Now with the valve replacement,I'm even more afraid of a stroke. I am hopeful I will regain my confidence and stop being so mindful of it all the time. How do you live with this hanging there? Does it get easier?

 

[Ross]

Is it just me or is anyone else scared to death about this coumadin thing? I have been taking it for 3 years because of A-Fib. Now with the valve replacement,I'm even more afraid of a stroke. I am hopeful I will regain my confidence and stop being so mindful of it all the time. How do you live with this hanging there? Does it get easier?

Stick around us and you will fear no more. Were a bunch of self testers and self dosers and have a really good understanding of how the drug works. I can say with confidence that most of us know more about it then those that take care of us.

Talk to us. What is your INR? How often do you test? How often are you out of range?

I know I don't worry about stroke because I test weekly and I'm usually in range 80% of the time. Of course, even being in range, a person could stroke, but not likely. I don't fear it unless I have some idiot managing me that hasn't got a clue how to manage Coumadin. They can be dangerous and they are out there.

 

[Bridgette]

I think you just learn to live with it - there is no other choice.

All we can do is take the Warfarin, make sure that we test our blood regularly and try and stay in the correct range....you can't do anything more than that to protect yourself from a stroke really (other than making appropriate lifestyle choices re exercise, food and alcohol etc).

I worry and think "What if?" occasionally but not as much as I did in the early days post op....I try and stay positive and think of all the examples of people on this forum who've been on Warfarin for a long long time and stayed well and healthy.

I hope you are feeling okay and your recovery is going well.

Bridgette

 

[Ross]

Honestly, I'm more worried about getting an infection that might cost me the valve more then I am stroking.

 

[Bridgette]

Sorry, my post sounded a bit gloomy or something when I reread it just now.
As Ross says, stick around this forum and you will soon get your confidence back as all the knowledgeable Warfarin users here answer your questions and concerns.
Being on this site has helped me a lot and it will help you too.

 

[geebee]

People who are not on coumadin have strokes every day. Did you worry about strokes before you were on coumadin? If not, you will need to try to get back to that frame of mind. You are more protected and thus in less danger than the vast majority of people destined for a stroke in their lifetime. Perhaps instead of worrying, you could embrace the comfort that comes with knowing you are ahead in the stroke game because you take coumadin.

There are so many more important things to worry about. Please do not spend precious moments worrying about something that probably won't happen. Spend those precious moments on the known like family, love, sunshine and roses.

If you were only 6 months from starting coumadin I would tell you it gets easier. After 3 years, you will need some intense internal conversations to get past this emotional roadblock. I have been on coumadin for 28 years and, honestly, unless I am testing (weekly, using my own monitor), I do not usually think about it. The recent exception - a blood culture done by a moronic lab person who left my arm looking like a punching bag. However, I would venture to guess the next person she worked on (who was not on coumadin) ended up looking just like me.

 

[lb151]

Thanks Ross for helping me get around in here. I will get the hang of it soon. Thanks too for the encouragement and advice. I am only 3 weeks out from surgery and way to emotional to think rationally.My INR wa 4.5 and am getting tested again Monday. I have been well managed these past years but want to get the tools to self test. The whole thing is sureal right now and I'm trying my best to get a handle on the things I can control and let go of the things I cant. I am so happy I found you guys,,I feel I have a safe place to ask and learn.

 

[Cooker]

Worry and stress will have more ill effect on you than the coumadin ?. Just try and relax, laugh and love ? each day is a gift ?

 

[Bina]

Hello lb151 and welcome.
You have been on Coumadin for 3 yrs, just like me. Yes, it is daunting in the beginning, but I think you are just having some post op nervousness. At 3 weeks out my brain was still quite fuzzy!

I found VR several months after my OHS when I was desperate to get a grip on my life. I found tons of support, info, and fun with this group.
Last year I researched and purchased a home monitor. WOW, what a stress reducer it is. In the middle of a winter blizzard I can sit at my kitchen table and test my INR within 5 minutes.
Stick around, there is always someone here.

 

[Jackie]

Two and a half years ago I was scared to death, until my sister found this site. Now I am only afraid of the medical people who want us to be scared and don't know what they are talking about. Thank God for this site.

 

[Ross]

Hello lb151 and welcome.
You have been on Coumadin for 3 yrs, just like me. Yes, it is daunting in the beginning, but I think you are just having some post op nervousness. At 3 weeks out my brain was still quite fuzzy!

I found VR several months after my OHS when I was desperate to get a grip on my life. I found tons of support, info, and fun with this group.
Last year I researched and purchased a home monitor. WOW, what a stress reducer it is. In the middle of a winter blizzard I can sit at my kitchen table and test my INR within 5 minutes.
Stick around, there is always someone here.

Boy do I remember you when you first came in here.

You weren't open to suggestion or anything. You were one tough customer.

 

[Bina]

I remember the cardiac ward nurse telling me "you are stubborn". I know I was terrible.
Maybe I have softened up just a teeny tiny bit?
Ross, my husband STILL thinks that ALL doctors are always right......that scares me!!

 

[EVELYN]

Hello lb

Tyce has been on warfarin for almost 7 years.....it's pretty much a nonissue now. We just home test on a weekly basis and make adjustments accordingly. Actually, I worry more about Doctors who have no idea how it should be managed. When someone tells you:"You have to go off warfarin for 2 or 3 or 5 days," then you worry. We don't even listen to that any more.....just do Al Lodwick's adjustments and move on and retest.

You will get to that point,too; and never be afraid to ask any questions on this site.....I can't imagine how many cumulative years our members have been on coumadin....THEY know the drug better than the drs.....at least in my opinion.

Evelyn

 

[Ross]

Ross, my husband STILL thinks that ALL doctors are always right......that scares me!!

That scares me too! We know better.

 

[lb151]

Well,,I can see I have my work cut out for me. This is one tough room!(in a good way) I do love a mission and you know what they say about a woman on a mission. Ihave always taken pride in the fact that I know what these docs are talking about and what my condition is. This coumadin thing is no different. I will know more than any of them in no time. See,,my confidence is showing already.

 

[Ross]

I'm not saying your Doctors don't know anything, but the majority or at least in our experiences is that they don't have a clue. We are a new generation of testers only like 5% big in the grand scheme of things, but it will grow larger in time and through education.

 

[catwoman]

Do some reading at Al Lodwick's website, www.warfarinfo.com. I have purchased the booklet he sells about warfarin and also the algorithm chart for adjusting warfarin dosage. (I have several copies of that floating around.)

Also, watch the Discovery Health program on anticoagulation management -- there's a sticky either at this forum or at home monitoring, or you can go to the Discovery Health's website and click onto the CME section.

With time and arming yourself with knowledge, you'll be more confident and able to stand up against medical professionals who are mismanagers of anticoagulation. Once you understand warfarin, you'll know the difference between a manager and a mismanager.

 

[dick0236]

No, it is not just you. I have a friend who was put on coumadin/warfarin a year ago for A-fib. He and his wife are kinda paranoid about the dangers of the drug. I think alot has to do with how your healthcare providers feel about warfarin. If it scares them, they will transfer that fear to you.

If you will spend some time reading posts on this forum, you will find that warfarin does not pose problems for people who have been on it for awhile and who look upon it as a "necessary" part of their routine.

Warfarin usage only requires:
1. Take it as prescribed. Do not miss or double up doses. (a pill box helps)
2. Test on a frequent and regular basis
3. Use a little common sense in life style, activity and diet.
4. Except for the above, live normally.

ps: I had a stroke 35 years ago but I DIDN'T follow nos. 1 and 3 above. Since then I have followed nos 1,2,3 &4 with NO further problems.

 

[ALCapshaw2]

Do some reading at Al Lodwick's website, www.warfarinfo.com. I have purchased the booklet he sells about warfarin and also the algorithm chart for adjusting warfarin dosage. (I have several copies of that floating around.)

Also, watch the Discovery Health program on anticoagulation management -- there's a sticky either at this forum or at home monitoring, or you can go to the Discovery Health's website and click onto the CME section.

With time and arming yourself with knowledge, you'll be more confident and able to stand up against medical professionals who are mismanagers of anticoagulation. Once you understand warfarin, you'll know the difference between a manager and a mismanager.

AMEN to ALL of the Above!

 

[SHEEPDOG]

It all depends...

It all depends...

... on what the doctor does for a specialty too. My Surg, my Cardio and the Coumadin nurse ALL say I will have NO problem being a COP on COUMADIN. My Internist said I may have problems. (I read that as, YOU NEED A NEW LINE OF WORK) Im going with the first 3!