Recent levels

[LUVMyBirman]

Hi all

Want to open a can of worms here. My favorite subject, Coumadin. Finally registered why, it's a challange!

Just wondering how you all are doing with your INR levels?

Since the weather has changed....have had to bump myself up 10% for the week = 1/2 mg a day for about a month now. Still running on the lower side of the therapeutic range too. Anyone else?

Have a great day. Don't forget our reunion in Nashville....only 3 days away!

See you there:p

[Lorraine]

Hi Gina,

About a month and a half ago my level went down, so they increased my dosage. I've been back for a test every two weeks. It was finally back up a week and a half ago. I go for a test Wednesday morning. I'll let you know when I meet you at the reunion what my level is now. I don't have my own machine yet so I can't check myself on a more regular basis. I plan to ask my doctor about a script for it when I see him in November. See you in Nashville. I'll be there Thursday afternoon with my sister a friend.

[Christina]

It's cooling off in Arizona! YEAH!!! Temps today in the 80's.
My INR has been stable since I fired my doctor the end of June.
Before I was able to get an appointment with the new doc I was on my own with my Protime for about a month and doing just fine, Thank you very much!
When I went to see the new doc my blood pressure went through the roof, I was so nervous! They took it twice, second time even higher.
Normally I have low blood pressure, but I was so affraid that this doctor would turn out to be a jerk as well. He made me buy a blood pressure machine to check myself at home because he thought that day I had high blood pressure. I bought one because it'll come in handy someday.
I think this new doctor is one in a million as far as I can tell. He and I get along just fine. I call my numbers in to his office once a week, and they call me back the same day with changes in meds, if any. So far that has not happened. My INR stays around 3.8 which he doesn't mind, and I like it that way too. Easier to handle a bloody nose than to deal with a clot or stroke.
I eat what I want in moderation, and take quite a few supplements. Have to stay healthy!
I had my one year appointment with the cardiologist last Friday and he said that the valve sounds fine to him. Have to come back in 8 months.


Christina
Aortic Stenosis
AVR 8/7/01 & 8/18/01
St.Jude's Mechanical
Coumadin 19mg a day.

[LUVMyBirman]

Hi Christina

Great news! Congratulations on your checkup!

3.8 sounds good to me. Have been requiring more Coumadin recently just to remain within the lower limits of therapeutic range. Must be all of my additional busyness.

Lets all keep up the good work.

[Shari]

My husband's INR has been way too low for the past three weeks. The doctor just called yesterday and his level as of last Friday was only 1.6 (although that was an improvement from 1.5 the week before). Now he is up to 5 mg a day. Since his surgery about 4 months ago, he was doing fine from anywhere from 2.0 to 3.0 mg a day. I don't know what's going on, but it scares me. I wonder how long it takes for a blood clot to form? Just another thing for me to worry about. What's the lowest number anyone has ever had? And I wonder how long you can go with a low number before it gets dangerous?

[Christina]

Hi Shari,

Boy, that INR is way too low! Dangerous stuff, and I can tell you from experience that you cannot be careful enough. I got a blood clot at 1.4 and the whole surgery needed to be redone. Not fun!
Everyone metabolizes Coumadin differently, and your husband might metabolize it faster than others. I seem to metabolize Coumadin fast because I am on 19mg a day. My new doctor is not afraid of a higher INR, and I like it that way too. Easier to deal with a bloody nose than a blood clot or stroke I'd say.
My previous doctor told me when my INR was 1.7 that that was okay and refused to increase the Coumadin dosage. I respectfully disagreed and told him so. He did not like that! I told him that I want to be at 2.5 or higher to feel safe. He had me on such crazy dosages and I was all over the place.
I have been home testing with the Protime machine since January 2001, and have been stable since I fired that doctor in June. He told me that I did not have a medical degree and that I did not know what I was doing. Well, obviously I do know what I am doing. My new doctor likes what I am doing and doesn't think I am a crazy woman. I am free at last from all the weekly hassles from before. I was a nervous wreck all the time because I was so afraid and full of anxiety. No more of that B.S! If things went wrong again it would be MY chest on the table, not his. I wrote him a letter after I fired him and gave him a piece of my mind, but never heard a thing back.
You might want to think of getting a protime for your husband. It is wonderful!
That reminds me, I still have to do a test tonight and than call it in tormorrow morning. But what is nice, that I know the numbers before they do, so there is NO waiting ever for them to decide to call you back whenever they get around to do that.

Wishing you all the best.

Christina
Aortic Stenosis
AVR 8/7/00 & 8/18/00
St. Jude's Mechanical
Coumadin 19mg a day

[LUVMyBirman]

Janie....it usually takes me close to a week and a half to get my INR back up while off. Did they have you using a loading dose?
Which, in my case is usually 10 MG. I know that is your regular daily dose.

Let us know how you achieved your normal levels in just three days.;)

I really want to compare notes this weekend. Knowing there is no rhyme or reason for the way Coumadin reacts differently in each individual....it's still a pertinent topic for most of us.

So...are we all meeting in the Atrium on Friday PM? Hank?

[Shari]

Thanks Christina and Janie for the information.

His cardiologist doesn't handle his coumadin dosing...it's our regular Internal Medicine doc who does it. We feel comfortable with him in that he will actually call us at home to let us know the latest numbers. I really feel like he cares about my husband since it came as quite a shock what happened to him (the heart surgery). We were supposed to go to the Cardiologist on Tuesday (today) for his checkup, but they cancelled because the doc was called to an emergency. So we're going next Tuesday. I will bring up the coumadin issue with him. Hopefully, his numbers will be up by next Monday.

I guess I should check into buying one of those Pro Time at home testers. How much are they?

Here's a dumb question: When the blood becomes too thick, does it build up around the valve itself because it can't get through it? Is that what can cause the clot? How would you even know that you had one and that it is affecting your valve?

[JBriau]

Over the summer my InR was jumping all over the place.
I went in for a angiogram a little while ago and had to go off
coumadin. The started me back on with iv and then coumadin.
Since then my INR has been normal again. Maybe I needed
to be rebalanced who knows with this drug!

:p Judy

[Shari]

Thank you for your caring post, Janie.

Well, we're not so attached to our internist that we would never leave his practice. (Actually, my husband wanted to switch doctors in May and try someone else, but then - bam - the unexpected surgery.) It was actually our cardiologist who told us that our internist should take over the coumadin dosage. Is this not correct then? What's the norm -- who is supposed to handle it? I really can't imagine the cardiologist doing it -- at least our cardiologist. We feel comfortable with him (he was recommended by the surgeon in NY), but he does work out of three offices, and I can't imagine him having the time to do it. (I know how terrible that sounds, but it's true.) Always in the back of my mind, I've been concerned that our cardiologist isn't associated with The Cleveland Clinic since we live in the area. When the surgeon recommended our current cardiologist, we went with it because we had no idea who was good and who wasn't (let alone the Clinic was the #1 heart hospital in the nation). (since my husband's never needed a cardiologist before any of this happened.) Should that be a factor in choosing a new cardiologist? finding one that will monitor the coumadin?

[Christina]

Shari,

The Protime unit costs $1500.00 and QAS will help you recover that cost from your insurance. The supplies are $250.00 for 25 tests, so that ads up to $10.00 per test. Going to the lab is costing the insurance a lot more.
My insurance refused to pay for it, and I am paying everything out of pocket, but think it is worth the peace of mind and all the hassles that go along with going to the lab, and the arm pricks that'll ruin your veins.
Call Lance at: 1-800-298-4515

For some reason I forgot to take a dose last Friday, but did not find out until last night when it was time to fill the box. I noticed that there were still some pills left somewhere and when I checked, it were Fridays.
Well, when I took the test my INR had gone down to 2.2 from 3.8 last week. And this is forgetting only once. My numbers go down real quick.
Take no chances Shari, and make him take his pills the same time each day. I have a watch with an alarm, but was not wearing that watch last Friday.

Christina
Aortic Stenosis
AVR 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 19mg a day.

[Sharon]

Hi Shari,
Just wanted to let you know that my Internist calls me about my coumadin levels too. My cardiologist likes it that way too.

Hi Christina, Janie and Gina,
How are you all doing? Haven't been on lately, but been thinking about all of you. A few weeks ago I didn't eat for a day and when I had my inr tested about 4 days later it was 4.5! I don't know if it took that long to show up or it was that high for the whole time. I kind of think that it just takes time to show up - what do you think? I'm thinking of biting the bullet and buying a protime machine, but then I worry that they'll go out of business and I won't be able to buy those test strips.
Sharon

[Hank]

Hi Sharon,

I wouldn't worry about QAS or the manufacturer of the ProTime going out of business, they are strong and thriving.

[LUVMyBirman]

Hi Sharon

Glad you are back. Hope all is well.

You will love the convenience of home testing. If your doctor is willing to prescribe, go for it! Will tell you that it provides major piece of mind. No more running to the lab either.

In answer to your question about not eating. Your INR can get out of control, i.e. higher with lack of Vitamin K. Kind of a darned if you do or don't thing. I have experienced this twice before and now force myself to eat a little something when not feeling well.

Take care

[Christina]

Hi Sharon,

I also love the convenience of hometesting, and no more punctures in the arm, and ruin the veins. Have to safe those for later.
Anyway, INR can get pretty tricky though, but since I have a new doctor and am home testing all the time now, INR has been pretty stable since June.
Mine always has been on the low side before, and I have taken a high dosage from the beginning (19mg)
We go out to eat about twice a week and I have moderately indulged in vit. K. as I did before. I eat everything I want within moderation, broccoli, green beans, sugar peas, salads etc.etc.
Then the weather got cooler here in AZ, my INR went too low again with the same dosage.
Last week Tuesday it was 2.2 and this Tuesday it was 1.9. I right away took an extra 5mg that day and the doc bumped me up to 20mg every day. That'll probably change again today since I was up to 3.8. This is where I want to be, and my wonderful doctor doesn't have a hissy fit like the one before.


Christina

[LUVMyBirman]

Had the flu vaccine yesterday and looks like it did not have an effect on the INR. Tested 3.5 today. Now, if I can get rid of this dang head cold I will feel much better.

'Cooler' weather has caused a few us to ride lower necessitating increasing our dosing.

Getting close to three years.....almost have Mr. Coumadin figured out:D

[Marty]

Hi Gina and other heart buddies! My wife Alice age 72 began feeling bad last week and when I took her pulse I knew she was fibrillating. She saw the cardiologist( mine also) who confirmed the diagnosis. He gave her a bunch of sample coumadin tabs-5mgm and said "tell your husband to manage this with the Coaguchek- he should be an expert by now!" Alice will have an echo Monday and then after she is well anticoagulated in about six weeks they will try to convert her to sinus rythm first with medication and if that doesn't work with electricity.If that doesn't work she's looking at pacemaker. We've got our fingers crossed.
Regards to all Marty

[LUVMyBirman]

Oh Marty

So glad to hear from you!

Please know that we will be praying for a good outcome for Alice. Not two people in the same household on Coumadin! At least you two are not going into this blind. You have the expereince to see her through.

Please keep me posted on her forthcoming tests. And give her my best.

Take good care,

[Nancy]

Hi Marty-

I certainly want to wish your wife Alice the best in conquering her heart irregularities.

If a pacemaker is the final answer, not to worry. It was one of the easiest things my husband Joe has had done, and one of the most helpful. He's 70 years old. It has saved his life any number of times, the readouts show lots of activity. He never feels it working and it's only a small bump in his chest.

Good luck Alice, come on the website and meet us all.

[RonP]

Gina:

I too have been on a roller coaster ride with my coumadin levels. Two months ago I was on the verge of hemmoraging. Then last month my doc called accusing me of not taking my coumadin at all as the blood was too thick. Now they've put me on a rotating 5 one day and 7.5 the next. Now I'm back to normal. It's been since Sep 99 now and they still can't get this adjusted. I guess I'm not normal (and never will be). Are my dosages high compared to your dosages? Remember, I've got the St. Jude mechanical aortic valve.

Have a great fall. Sorry I missed the reunion, but I was back in the hospital again. Those situations always happen when I have something I really WANT to do.

Ron P.

[LUVMyBirman]

Hi Ron

It's so nice to hear from you. Please know that I will be praying for a good outcome with your recent dealings. Did I read that you may need to have a new defibrillator implanted? Hope they have it all figured out.

As for my daily dose....pretty stable on 6mg or 6-1/2 mg straight. If I start alternating it does become a 'roller coaster'.

We are thinking about you and hope you can join us next time in Las Vegas. Looking forward. Year seems like a long time to me at this point. A lot of well needed changes on the horizon.

Take care:)

[Marty]

Thanks Nancy and Gina for your kind words re: ALice a new Coumadin patient. I thought it was interesting that the best cardiologist in the best group in this area trusts the coaguchek as much as he does the high powered hospital lab a few steps from his office! I really think he believes it is up to us folks on blood thinners to regulate ourselves. The cardiologists are busy saving lives in the ICU and their staff is busy and harrassed. Surely we can help them out and ourselves too. Warm regards Marty

[Nancy]

I'm sure he trusts your judgement very well also, being a doc yourself.

[Hughbd]

Hi folks. First time on this forum. Had my aortic valve replaced with Medtronic unit in 1994. I'm curious about, what seems to me at least, the high INR readings you folk are looking for. My cardiologist first had me at 2.5 to 3.5 for the first couple of years and then has brought me down to my present level of 1.8 to 2.2. It has been at this level for the last couple of years and "it feels good". I take 2.5 mg Monday through Saturday and 5 mg on Sunday. Seems to work for me, am I being too reckless?