New here

[Gnusgal]

Hello, all. I am so excited to find this site. I guess the internet really does have everything!

I had surgery two months ago (June 24, 2002) to replace my tricuspid valve with a 29mm St. Judes mechanical valve. I was, of course, put on coumadin. A little over a month later I had to undergo an EP study (cath procedure) to see if I needed an ICD. So I was put into the hospital to be taken OFF the coumadin (and onto heprin) so they could do the procedure without risk of my bleeding too much. Then it took four days after the procedure to get my INR up to 2.0 before they would even let me leave.

I wasn't yet regulated completely before being taken off the coumadin, and I still haven't had a consistant level. I've been too low for most of my checks, then all of a sudden I shot up to 3.4. So they lowered my dosage and I shot down to 2.4. I realize that there is not an exact science to this stuff, but can anyone give me an idea of how long it usually takes to get down to checking your blood once a month instead of twice a week?

I am a theatre arts teacher and will soon need to stay late after school for rehearsals. I won't be able to make it to the blood lab before it closes. And I can't skip rehearsals twice a week, either. I talked to my card's PA about this and he said we could look into a home check, but we will have to find out if my insurance will cover it. Unfortunately, I'm not optimistic about the insurance company being helpful. I've noticed that several of you mention home tests. Did insurance pay for it, or did you have to pay for it yourself? I definately don't have the money to buy it on my own.

Thanks,

 

[Christina]

Hello Gnusgal,

Welcome to our on-line valve family. Hope you will feel at home. We are all friendly people who are eager to help others like yourselves.
INR is not an exact science like you said and it can go up and down. It interferes with many things like greens, OTC medicine, herbs & some supplements.
I bought my own protime machine and have done my own protimes for the past 18 months with my doctors blessing. I check once a week but call my doctor every other week. If there are problems in between I would call him right away.
My insurance didn't pay for the machine. I tried 4 different appeals without luck.
Buying that machine was the best thing I ever did since my surgery. It brings peace of mind and I can test whenever I want to and am not dependent on a lab. It is portable and you can take it anywhere with you on vacation, so no worries about finding a lab in a strange city or town.
I would never want to go without testing for a whole month. That is too long for me. Anything can happen in that amount of time.
You can call QAS (1-800-298-4515, talk to Lance or Brian) and they will help you get the machine paid for by your insurance company. If they refuse, QAS will give you a reasonable price on the unit.

Anyway, ask any question you want. We are here to help.


Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson Medical Center, Tucson. AZ
Mechanical
Dr. Gulshan Sethi

 

[Nancy]

Hi Niki-

And welcome to this great site. I looked at your profile, you've had a load of surgery. You'll be able to shed lots of light and help lots of people. Glad you joined us.

My husband is the patient here. He's had 3 valve surgeries, 2 lung surgeries and a ton of other nasty stuff. He's 71 and still chugging along.

Joe's been on Coumadin for 25 years. It's a frustration sometimes because it's sentive to lots of drug interactions. There are times when he's tested each month, and times when he's tested every week. Right now, he's on a weekly schedule because he's on a med. which interacts quite a bit. When he goes off that it'll space out. He didn't have a choice on his valve either. The first one was implanted in 1977. There were tissue (porcine) valves available then, but for some reason, he couldn't utilize it. He got a Bjork-Shiley aortic mechanical which was relatively new on the market then. It's still in there clicking away. He also has a St. Jude mitral, and had a repair for a mitral leak 1 year ago.

Joe's used to Coumadin now, and doesn't worry about it at all. He has a good doctor monitoring it, but we also keep a very close eye on the INR. I can't say that in all those years he's had any problems with it.

Check out the website warfarinfo.com which is the website of a member here. His name is Al Lodwick and he is a pharmacist who manages a Coumadin clinic. He has lots of knowlege on the subject and his website is extremely helpful. He also comes to this site frequently to answer Coumadin questions. He particularly monitors the Coumadin forum. If you have a question you could post it there and I bet you'll get an answer quickly.

Hope to see you here often. Pleased to meet you.

 

[McCln]

Gnugal

Gnugal

I agree with Nancy and Christina, it takes some time for INR number to become stable, if it ever does. It take time and patience. You will be alright soon. Just hang in there. You be normal soon. My numbers fluncuated for months when I first went on coumadin period. And when my cardio change office location, the new nurse had fits over how unstable it was, went every two weeks for two months before she was satisfied what they saw was normal. So I am never the same number from one reading to the next. But hang in there.


Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Guest]

Gnusgal wants the names of some good Coumadin managers in Texas.

Can we help her with some?

 

[Gnusgal]

Frustration

Frustration

I did some looking, and there are two coumadin clinics near my house, and one near my work. Only thing to do now is find out if insurance will cover them, and talk to my card about it.

I'm getting very annoyed this weekend. I had my INR tested on Friday (as per orders) after a week since the last one. Normally when I have a Friday test (I can't get in until 5pm) I get a call from the on-call card on Saturday morning. Well, I didn't get a call, so I called my card's answering service and explained the situation. The person answering the phone said that the on-call doc probably didn't know what my numbers were, as they were called in Friday night to one of the OTHER docs (not mine). So she wouldn't page the on-call doc OR the one who had recieved my numbers. So right now I have no clue what my INR is and don't know if I should eat more vit. K or cut back. I don't imagine I'm in TOO much danger, but it sure is annoying to not know what is going on with MY body. I can't wait to get a home test kit! As it is now, I won't know what my numbers are until Monday, and by then the point is moot.

Just needed to vent a bit. Thanks.

 

[JimL]

I was just as frustrated when I was filling a test tube with blood to get the INR checked. But I found that if I asked and then waited around about an hour, they would give me the results. They wouldn't give me the results over the phone, but only in person. Not that a hospital is the most interesting place to wait for an hour....

 

[Nancy]

Gee whiz, Niki-

That's terrible of your doctor not to call you with your INR and dosage. Time for a little tete a tete with him. It's real important to your health to have those results on time.

The fact that your main man wasn't on call isn't your fault, you still need to have that answer.

 

[Gnusgal]

Jim and Nancy

Jim and Nancy

Jim,

Sadly, waiting around wouldn't do me any good. The lab I go to sends out the blood to the main lab (at another hospital) to read results. Believe me, if my "lab lady" could give me the results she would. Unfortunately, all I can do is wait to hear from my card's office.

Nancy,

Believe me, I'll be complaining to the PA, who should pass on the complaint to the answering service. It is completely rediculous that I should have to wait three days for results, just because the wrong doctor has the information. If I could have found my own card's pager number (she gave it to me awhile back) I would have called her and had her call the doctor who knew the results. Unfortunately, we moved a month ago and I can't seem to find the paper I had it written down on.

Thanks for your replies!

 

[Nancy]

Good for you Niki- Go for it!

 

[Gnusgal]

Finally

Finally

Well, I finally got ahold of my PA and got my INR results from Friday. I was at 2.6. They were happy, though after reading about everyone elses experiences I'd prefer it to be a bit higher. But they have FINALLY left my dose at the same level for once. So I'm happy. And they are letting me wait a week before testing again.

On an even brighter note: My PA said he's finished the paperwork for getting me a home test kit and just needs my card to sign it before sending it in to QAS. Yea!

thanks all,