What are your coumadin problems?

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Simon Gee

I'm almost twelve months post AVR and doing great! My INR has been pretty stable, aiming for between 2.5-3.5, with just a few wobbles in the blood tests. I was up to eight-weekly tests, but am currently back to four-weekly. I eat as I did before surgery, salads and brocolli when I want them, and I drink two glasses of red wine a day with the occasional extra beer at the weekend!

What I would like to know from all you good people is what symptoms, if any, you experience with innapropriate INRs. Do you feel phsically unwell, or is it just the blood test results that tell you something is wrong? I have no intention of letting warfarin take over my life, but it would be good to know if I should be looking out for anything, just in case!

Living life to the full,

Simon in England
 
The Right Attitude

The Right Attitude

Greetings, Simon:

I have admittedly been possessed by my INR's, diet, tests, etc. over the past year, but am now overcoming as you have and not letting it run my life.

But, I can still hate going to see vampire bats and get tested!

I haven't been too far whacked out of range and I haven't experienced any noticeable symptoms that would indicate that my INR is off. I might get a bloody nose a bit easier especially if I rub/blow too hard. Pick? Better not go there!

As always, the key is to be consistent in the diet. If you eat the greens and have a few drinks just don't abruptly change.

I can't imagine having four weekly tests!? Your arm must be feeling like a pin cushion by now!? I get tested once a month, unless I get out of range, then it's every two weeks.

Always good to hear from heart buddies in England.

Cheers!
 
Hi Perry,

I didn't make myself clear with the blood test frequency - I meant once every four weeks, not four times a week! That would be hard to take.

Simon
 
Coumadin Changes

Coumadin Changes

Simon:

When they call and tell me my Coumadin levels are off, they tell me how to change my Coumadin dosages. I wouldn't know my blood was too thick or too thin unless they told me. I usually feel the same.

Ron P
 
Some side effects for me when mine is to thin

Some side effects for me when mine is to thin

Seems that i have notices the last couple of times my blood has been to thin I start to get a little more achey all over and tired. Strange but it seems to affect me that way.:(
 
My husband has been on Coumadin for 24 years, and I can honestly say that he cannot tell when his blood is on the high side or the low side unless he's tested.
 
Hi Simon,

Coumadin, one of my favorite subjects. I'm 7 and 1/2 months post op. I had a MVR and AVR on MArch 8th, also a Tricupid Valve repair. I seemed to be adjusting fairly well to the Coumadin for the first 5 months then my levels were going too low. I've been tested every two weeks since then. My cardio uses the Coagucheck, similiar to the Protime. I rather get the finger prick then put up with vampire bats like Perry. Sorry Perry. My level has gone steadily up as they increased my dosage to 7.5mg and 10mg alternating days. Then it started steadying again into the safe range. I never felt any physical change letting me know my level was up or down. I'm very diligent about letting my cardio know any new meds I've been put on, as I know they can react with how the Coumadin works. I haven't changed my eating habits too much. I'll eat some greens once in a while, usually only if I know my level is on the up side. I usually have a couple of beers a night. I think this is a good question t throw out there, because what would let us know what our levels are low or too high beside the blood test. I don't have my own Protime machine yet but I truly believe having one is the only way to go. When I see my cardio next month, I plan to ask him to write me a perscription for one. I got the information from Protime, so I plan to present the forms to the doctor in November. Do you have one?
 
My quickie views after being on Coumadin for 1 1/2 years.

I self test.

There are no effects you "feel" from Coumadin but being too high or too low can be life threatening so stay in range.

I keep my dosages steady. (same dosage every day) I have read that steady dosages make for more steady INR's rather than staggard doses. Some disagree.

That's it.
 
I have not had any side effects since I've been taking Coumadin. I am 14 months post-op.
I feel the same as before! So Coumadin is really no big deal! You just have to be careful, and don't do stupid stuff.
I 've been home testing with the Protime machine since January, although my previous doctor still wanted me to go to the lab as well because he just didn't trust the machine. Since I dumped him, I found a patient friendly doctor who let's me do what I want.
This machine is a God send. It keeps me sane, because I was highly stressed because of the ever changing INR levels and trying to keep them within my range. Also very stressed because of that doctor who had me on such stupid dosages. No wonder I wasn't stable. He didn't know what he was doing, although he blamed me for not knowing what I was doing.
This new doctor keeps me pretty much on the same dosage (right now 20mg a day) and unless I forget to take it, which has happened a few times, I stay stable at around 3.8 right now.

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 20mg a day.
 
reply to Lorraine

reply to Lorraine

Hi Lorraine,

sorry it's taken a couple of days to get back to you. No, I don't have a Protime machine or any other device for self regulation. It seems from some of the messages in these boards that many of us are liberated, even empowered, by the ability to self-regulate.

I thought about it last year, when I had my avr, but it seemed sensible to go down the conventional clini route initially and see how I got on. It is very easy for me to get my blood checked at my doctor's in the village and, as I am not travelling much in my current job, there seems little point in in my investing in a machine at the moment. However, if my cirumstances change, I would certainly consider acquiring a Protime or similar.

Best regards,

Simon
 
To Simon re Warfarin

To Simon re Warfarin

Hi Simon,
I am having AVR on Nov 7th, I think I will be having a mechanical valve, so will be on warfarin,I see by your last post that you were having your INR test every eight weeks and now its done every four, that sounds good to me !! How long did you take to regulate? I realise everybody is different, also have you had any problem getting Travel Insurance ? I have thought about self testing (when I know more about it) but I cannot imagine being allowed to alter dosage, our friends in the USA are more liberated, so like you I think I will just wait and see how it goes.
I usually have a glass of wine or beer each evening and hope I will still be able to do that, but If I cannot so be it.Also when your Dr does the test How long do you wait for the results?
I would be glad of any advice you can offer
Thanks
Jan
 
To Jan re warfarin

To Jan re warfarin

Hi Jan

glad to hear that your surgery is next week - the waiting is easily the worst time and now it will soon be over. Where are you having your op?

To answer your points about INR and warfarin, it took very little time for my level to settle down. Immediately after surgery, your blood will be tested daily and the dosage adjusted accordingly. There are three different doasages of warfarin tablets available, in 1, 3 and 5 mg strengths. You will be prescribed the precise amount to regulate your INR level, although I'm now on a regime using only the 3 mg tablets (they're blue, the others are pink and brown but I can't remember which is which!). My latest test last week showed an INR of 3 (ideal for my range of 2.5-3.5) and I don't have to have another test for 6 weeks. My blood is taken at the doctor's surgery in our village and tested that afternoon. If the result is out of line, the practice nurse phones me that evening with amended dosage, otherwise I pick up the results the next day.

As for drink, don't worry. I think many of us continue to enjoy modest amounts of alcohol, just don't go on a binge. Consistency is the key - I generally have two glasses of red wine in the evening and have been known to have the odd beer at lunchtime too! The only problem I have had with my INR in the year since my surgery came after a golf and cricket weekend with 'the boys' when I drunk more than usual and ate differently too. I felt fine, but my test results were marginally out of range, first too high and then too low, which is why I am building back up to eight weekly tests again.

I'll be thinking of you next week and we all look forward to welcoming you back as a fully qualified member of vr.com!!

Best regards,

Simon
 
on coumadin dosages

on coumadin dosages

There is a correction to be made here. Coumadin come in several doasages, from 1mg. to 10mg. I am on 2mg regiment. Please when giving information, get all information. You may not aware of the dosages, look it up on what you get in the hospital. I had gotten a packet before going home and keep it nearby for informational purposes. The pharmacy will send someone to educate you on the med before you leave the hospital. And will give you a packet of information. It is very informative. Thank you.




Caroline
09-13-01 bypass
Aortic Valve Replacement
St Jude's Valve
 
Warfarin

Warfarin

Hi Simon
Thank you for the response,I am having my surgery at the Cardiothoracic Centre Broadgreen Liverpool
It has been in the news recently as the football manager Gerard Houiller had his emergency surgery done there.

You have clarified things for me concerning Warfarin,It does not seem so daunting now, I was concerned about altering dosage but now realise I do not need to worry.

I went for the pre op tests today so it looks like It's all systems go for the 7th Nov, I am nervous, but am also looking forward to feeling better.

regards
Jan
 
I read this thread the other day, and thought, nawh, i dont have any symptoms. BUT, starting yesterday I had the aches, muscles and joints, and today my INR is 6.4. Coincidence?? Maybe. I dunno. I had a flu shot last week, but that shouldnt be it. I dont recall ever having symptoms before with a prolonged protime.
oh well.
 
reply to Caroline on coumadin dosages

reply to Caroline on coumadin dosages

Hi Caroline,

you're quite right to pull me up for not having all the facts - sorry! I should have pointed out that these dosages apply to the warfarin we are prescribed here in the UK, and as I was responding to Jan's mesage, who is also in the UK, I was talking specifically of the situation here in the UK. Does that make sense? I know that all the printed material I have been given by our National Health Service is quite specific, that warfarin is prescribed in just the three strengths - 1,3 & 5 mg.

Best regards,

Simon
 
My information on Coumadin, the name brand, is that it comes in dosages 1 thru 10 and I have also heard they make a 7.5 dose.

Generics generally follow the brand name in doeages.

With all this said, I'm a pumphead so what do I know?
 
Inappropriate INR levels

Inappropriate INR levels

Hello Simon,

My INR has never been stable... It?s been very high and it?s been very low. I am totally convinced that EVERYTHING effects my INR.
I get these little red spots on my body when my INR is really high... over 4.0. For some reason they start around my ankles.... then I notice them on my chest and shoulders. My cardiologist has confirmed the spots are caused from the high coumadin levels. Am I the only one this happens too??

Rain :confused:
 
Hi Rain,

When my levels started going too high, my nurse pointed the red spots out to me. I didn't know that was a way to check. They start on my hands and arms right away. I wonder why that is. By the way, my level was a 2.6 on Monday. Right now the doctors happy with me. I'm not. I rather have it be about a 3.5. I'd feel a little better. I really don't want my blood to cause a clot! God Bless!
 
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