INR changes with the wind

[Jackie]

Ross here is a list for the past 3 weeks.

Sun 5, Mon 5, Tues 5, Wed 2.5, Thurs 5, Fri 5, Sat 2.5
Sun 5, Mon 5, Tues 5, Wed 2,5, Thurs 2.5 Fri 5, Sat 2.5
Sun 5, Mon 5, Tues 5, Wed 0, Thurs 0, Fri 5, Sat 5.

This week has started like this Sun 5, Mon 7.5, Tues 7.5, Wed 5, Thurs Test.

Could the fact that I have found a walking buddy and we have been walking about twice the amount I was doing alone have anything to do with the yo-yo effect? I just now thought of this.

Jackie

 

[Ross]

If you've been walking or excercising more then usual, your INR would go down.

Honestly Jackie, if it were me, I'd take 30mg for one full week and then test. If your between 2.0 and 4.0, your in the house and a minor 10%+/_ weekly total will round you out. This deal of increasing your dose and testing in 3 days is doing no good. Thursdays test will only show what you've taken up to Tuesday and reflect nothing for Wednesday or Thursday depending on when you take your Coumadin.

 

[ALCapshaw2]

I just got the call on my INR taken today. It is still at 1.8. Now I am going to take 7.5 today and tomorrow and retest on Thursday. Does anyone have any coments? I am afraid that it has been too low for too long. Blood clots scare the hell out of me My father had many of them and was not the same for many years befor he died. My husband is in a long care facility because of a heart attach and revived to late so he has brain damage.

Jackie

One option is to go on a Lovenox "Bridge" until your INR is back in range. Hopefully, Testing on Thursday will show that it is rising but it will NOT have leveled off by then.

Bridging with Lovenox requires sticking yourself in your 'belly fat' twice a day with the APPROPRIATE dose based on your weight. Make sure your Cardiologist concurs with the dose if you go this route, especially if the same people who manage your Coumadin also manage your Lovenox Bridging.

The other option is to return to your NORMAL dose and test more frequently (every 4 days?) until your INR stabilizes (hopefully).

Holding too long, then taking too much is exactly why INR Roller-Coasters. I would report this gross MISMANAGEMENT to whoever is in charge of your Coumadin Clinic AND to your Cardiologist AND to your Primary Care Physician so that they become aware of how POOR the "care?" is at that facility.

"I feel your pain"!

'AL Capshaw'

 

[ALCapshaw2]

I second Marty's recommendation,
DEMAND to see a hematologist TOMORROW,
or at least contact your Surgeon / Cardiologist / PCP.

I would then tell ALL of your Doctors that you have NO FAITH in the INR managment you are receiving.

'AL Capshaw'

 

[Karlynn]

Sherry, what was your blood draw after school? Still in the 8 range?

My INR Sunday was 2, after 3 weeks of 4's. I had lowered my dose 10% a few weeks ago. I also used a new box of test strip - but the same lot # as my last. I tested twice to confirm the 2, simply because it was a new box, and got exactly the same result - unusual in my experience. So now I have a slight concern it's the box, but just a slight. I raised my dose back to the previous one I was on when I was getting 4's. I'll retest on Thursday to check to see if it's going up (or if the test strip still says 2, then I'll know it's a bad box).

I'm wondering if it's the return to colder weather.

Any thoughts on why you were at 8? Any antibiotics or other treatments?

 

[catwoman]

Jackie:
First of all, I am so sorry about your husband.

I agree with Al Capshaw -- go up the food chain about the INR yo-yoing. Kaiser won't want to shell out $$$ if you suffer a stroke because of these employees' incompetence.

Your increase in walking will definitely drop your INR because the warfarin is being metabolized faster by your liver. And conversely, if you decrease your exercise without decreasing your warfarin dosage, your INR will increase.

Are you on Medicare? If so, can you get Medicare to pay for you a home-testing unit? Or how does Kaiser effect that?

 

[Jackie]

Marsha and Al,

I am in the process of getting a Monitor. I think my PCP finally got it right. Said forms have been Faxed to QAS. I will check with them later to see if all was filled out correct this time. Now I wait to see if Medicare and Kaiser can work out the cost factor.

I have contacted my PCP to ask about a Hematologist referal. Am waiting to hear from him. I have always been very timid when it comes to standing up for my rights with people of atthority. But I think I may be getting over that at the age of 66. Guess its about time.

Thank you everyone for helping me out.

Jackie

 

[catwoman]

Good luck!

Good luck!

Jackie:

Let us know what Medicare & Kaiser say about a monitor. Seems that Medicare covers them for mechanical valve patients, dunno about Kaiser.

 

[Persianlady05]

Ups An Downs Of Coumadin

Ups An Downs Of Coumadin

Dear Jackie,I surly understand what your going through mine is really stable for awhile so i slacked off on having my INR checked and the minute I do it goes haywire,this is a pattern for me i can tell when my inr is high for example my hand area between thumb and index finger it began to get sore and a lump arose then a few days later it began to bruse which is a sign for me to get to my cardio so i did and they dismiss it as its nothing i tell them theres a bruse and its sore that means im bleeding in the tissues or musles somewhere i know my own body so im waiting to hear from them its 5.3 tooo high so well see take care mis ansari

 

[Jackie]

Are you ready for this?

Are you ready for this?

I just received a phone call from my PCP. He will not refer me to a Hematologist because he maintains that the anticoagulation clinic knows a lot more about Coumadin than any Hematologist. He maintains that 5.5 INR is a lot more dangerous than 1.8. He said it would be more common for me to bleed in my brain than it be for me to have a clot. "You are anitcoagulated any time you are on Coumadin. Just don't be so parinoid." Sure wish I could go to an outside doctor, but can't aford it.

Jackie

 

[ALCapshaw2]

I just received a phone call from my PCP. He will not refer me to a Hematologist because he maintains that the anticoagulation clinic knows a lot more about Coumadin than any Hematologist. He maintains that 5.5 INR is a lot more dangerous than 1.8. He said it would be more common for me to bleed in my brain than it be for me to have a clot. "You are anitcoagulated any time you are on Coumadin. Just don't be so parinoid." Sure wish I could go to an outside doctor, but can't aford it.

Jackie

For your next step, I would print out your last post, along with the history of your dosing and INR for the past 2 weeks, and TAKE it to your Cardiologist's office TOMORROW. Maybe even take a copy to your Surgeon's office.

Most Medical Malpractice Insurers are well aware that "Properly Trained" Pharmacists and / or Nurses do a MUCH BETTER job of managing Coumadin / INR that most Doctors (who would rather not fool with such 'mundane' matters.

It would help to find some supporting documentation, either on Al Lodwick's website or in some of the medical papers posted on the Anti-Coagulation Forum. I know I've seen some papers from a Family Practice Newsletter (for physicians) and other references. Hopefully someone else on the Forum can direct you to more supporting material. Use your family's experience with STROKES as justification for your concern.

Note that before INR became the standard for anticoagulation management (1990's?), Bleeding WAS a MAJOR medical problem because there was considerable variation in the reagents used to measure Prothrombin Time (the time it takes blood to clot) so there is a lot of old History and FEAR to overcome. More educated patients typically fear STROKE more than bleeding (which generally doesn't even begin to show up until INR > 5.0).

HANG TOUGH and keep knocking on doors until you find someone who at least understands your dilema and hopefully can either assist you or change the system.

Best Wishes,

'AL Capshaw'

 

[catwoman]

Jackie:

Excuse me for being blunt and you're probably thinking the same thing: Your PCP is an idiot!
If he were the one on warfarin, would he rather gamble with a stroke from an INR of 1.8 over a "bleed" as he calls it at an INR of 5.5?
I've had INRs of 5.5, on up to 6. And nothing has happened. Because I home-test and can quickly adjust my doseage as needed.

Is it possible for you to switch to another PCP at Kaiser?

 

[ALCapshaw2]

I just received a phone call from my PCP. He will not refer me to a Hematologist because he maintains that the anticoagulation clinic knows a lot more about Coumadin than any Hematologist. He maintains that 5.5 INR is a lot more dangerous than 1.8. He said it would be more common for me to bleed in my brain than it be for me to have a clot. "You are anitcoagulated any time you are on Coumadin. Just don't be so parinoid." Sure wish I could go to an outside doctor, but can't aford it.

Jackie

There might be another way to approach your PCP.

AGREE that there "could be" some risk of bleeding at 5.5 but come back with the argument that an INR of 2.0 to 3.0 or 2.5 to 3.5 (i.e. the RECOMMENDED range for mechanical valve recipients) would have a MUCH LOWER risk of STROKE and STILL have a Low Risk of Bleeding.

THEN point out how your INR 'fell like a ROCK' from the 2 day hold and now the Anti-Coagulation Clinic is having you take a LARGE dose to try to bring it back up, followed by testing BEFORE the dose change can be fully metabolized, thus GUARANTEEING that your INR is going to Swing Wildly and will never stabilize with that kind of management.

'AL Capshaw'

 

[Sherry]

Hey, Karlynn. I'm having it checked again at the cardio tomorrow. I'll pm you with my results so as not to highjack Jackie's thread here. I'll have to admit, an 8.0 makes me a little uneasy, even after nine years on this dang drug.

 

[Jackie]

Al, I already used this approach with my last contact. I just don't want to rock the boat to much right now because my PCP is the only Doctor who was willing to write script for the monitor. I don't want to screw that up. I have worked 3 months to get that accomplished. Hopefully I can get up enough nearve to do my own thing and not have their approval. Don't want to mess up my insurance coverage.

Jackie

 

[ALCapshaw2]

Al, I already used this approach with my last contact. I just don't want to rock the boat to much right now because my PCP is the only Doctor who was willing to write script for the monitor. I don't want to screw that up. I have worked 3 months to get that accomplished. Hopefully I can get up enough nearve to do my own thing and not have their approval. Don't want to mess up my insurance coverage.

Jackie

Getting your own test instrument may be the best solution so I understand your not wanting to 'rock the boat'. Just document your dosing and INR for the record and let your PCP draw his own conclusions.

Stabilizing your INR using your own machine will speak volumes.

'AL Capshaw'

 

[Guest]

You should call your customer service representative first thing tomorrow and ask for a new primary physisican. This doctor is downright dangerous. THen I would write a letter to the Chief of Medicine and the Chief of Hematology and the CEO of your clinic outlining the carzy "care" that you have been getting. You deserve better care than you are getting. If the doctor has been with Kaiser for any length of time, yours will probably not be the first complaint.

 

[Jackie]

Don't feel hijacked

Don't feel hijacked

Hi Sherry,

I don't feel hijacked, I am sure everyone is ready for something new. I can share. Hope all is well with your results.

Jackie

 

[Ross]

I just received a phone call from my PCP. He will not refer me to a Hematologist because he maintains that the anticoagulation clinic knows a lot more about Coumadin than any Hematologist. He maintains that 5.5 INR is a lot more dangerous than 1.8. He said it would be more common for me to bleed in my brain than it be for me to have a clot. "You are anitcoagulated any time you are on Coumadin. Just don't be so parinoid." Sure wish I could go to an outside doctor, but can't aford it.

Jackie

Danger Will Robinson Danger
Grumpy Big Head Doctor knows absolutely nothing and will not admit it!

 

[Jackie]

Factor V Lieden

Factor V Lieden

Has anybody heard of Factor V Lieden? My sister just reminded me that she was diiagnosed with it a while back. If I also have it would it cause the yo-yo affect in the INR results? I am going to ask to be tested, Who knows if Kaiser will respond to this request.

Jackie