Coumadin Regulation. Help!

[LUVMyBirman]

This question goes out to those of you whom self monitor at home.

Have been doing the same myself for almost two years now with the Couguchek. Self dosing as well. Understandably, that could have been a liability to my cardiologist, they did not second guess as I proved myself to them time and time again.

Prior to home testing, was monitored by a hematologist's nurse. Using standard protocol. Would not customize. Every time my INR would sway either way, just in the slightest, she would change my dose. Needless to say, was on a 'roller coaster' ride from H _ _l !

Getting to my point. I am not one of those individuals that can hold a dose if my INR gets to high. I take 6-1/2 mg daily. At times, 6MG straight. Recently moved and now have to deal with the Coumadin nurse at my cardiologist's office. Call in my results and let her adjust my dose. I tried to explain to her very nicely that I am not 'protocol'. Have landed in the hospital using protocol. I am very concerned that if I follow her instructions, the same will happen. How do we get around this?

Thanks

 

[RobThatsMe]

Hi Gina,

Sorry to hear about your situation. I thought I would share my experience with the nurse at my cardioligist. I used to have a real good nurse that could target in on me, and get me stable when I was out of range, she left the office, and provided "Notes on How to Regulate Coumadin" to the other nurse. The other nurse was not used to regulating the Coumadin patients, so when I called in, she would check the notes, and advise. Well, this raised a BIG Red Flag with me! The next time I went to the cardiologists office, I asked for a copy of the Notes so that I could use them myself.

I now self regulate my dose, and as you know from my prior posts I was always against self-regulating. I was a firm believer in calling in my results and letting the doctor adjust. I think that over time, becuase I would try to guess what they would do to adjust, I learned to adjust myself. I believe that I now have more confedence to take care of myself, than some nurse that is not familiar with the process, or the drug itself. If my INR is way out of range, I will let the doctor know. Also, I keep all my home testing results logged on an Excel spreadsheet, and also make comments about what I did to adjust the dose. I bring a copy of this to the doctor when I go in for my check-ups.

I know that you have self regulated for some time, and was surprised by your post. Why are you now having the doctors office regulate you?

I sure hope that you get leveled out soon. I think you have to trust yourself more than the nurse. HAve you asked her how long she has been regulating patients Coumadin doses? Maybe you need to find someone more experienced, or have your doctor himself assist you. You could also search for a new doctor, interview him and ask about his staff during the initial consultation. If they seem a good fit, make the switch.

Good luck my friend,

Rob

 

[Christina]

Hi Gina,

Sorry to hear about your problem with the Coumadin nurse.
You probably remember all my horror stories about my PCP from H__l. This was not too long after my second surgery and it was still quite scary because I was so new at it myself. When his nurse would tell me to hold the Coumadin for 48 hours, I was afraid at first not to follow his instructions, but the danger of another blood clot scared me more. I felt it was in MY best interest NOT to follow his instructions because I knew my INR would go to the bottom if I would do as he told me to do. It would be my chest on the table a third time, not his! All he would be able to say if this happened is how sorry he was.
On several occasions when I had him on the phone, and when I was able to get a few words in, I tried to explain to him that my INR goes to the bpttom, but he would not listen. This man knew it all, and told me that I didn't know what I was doing and that I would bleed to death one day.
My new doctor whom I like a lot, when his nurse instructs me to hold the Coumadin for 48 hours, I don't listen and just cut the dose in half. He'll never know the difference as I don't take my recorded dosage sheet in to him. He has never asked for it, so why should I give it to him. I keep a daily sheet with dosages for myself, weekly INR's and record how I feel the day of testing.
I feel very confident in self regulating, and am pretty sure he probably doesn't even remember how much I am taking and would need to look it up if asked.
I forgot to take my dose this past Wednesday. I didn't find out until the following day when I wanted to take that days dosage. Oops! Did I call the doctor? No, I do what I think is best for Christina; take a bit extra for that day and test again in three days which I did this morning. Reading was 2.6. I test again on Tuesday.
Like Rob, if my INR would be way out of range and I wouldn't know what to do I would call him for help.

I believe from reading your posts and the time you have been self regulating that you are more than capable of self regulating. I would just tell her that and do like I do, call it in and if you agree with her prescribed dosage, you follow her instructions, if not, you follow your own instincts and do what is best for Gina.

Good luck!

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson, AZ

 

[Marty]

The 10% solution

The 10% solution

KISS! Keep it simple stupid! Consider the 10% solution Send an E-mail if any one interested has not seen previous posts and would like to know how it works.We will detail it for you. Works for me and did for Alice while she was on anticoagulants ( she's off now, no longer in Afib). My cardiologist trusted both of us to self test and self dose.

 

[LUVMyBirman]

Hi Christina,

Yes, I totally agree. Have not had a care in the world since I started self regulation and dosing. It's just this new doctor of mine in Chicago. Liability is the key word. They want to know they are in control if I am ever in the hospital and they are regulating.

Like you all mentioned, we know works for us. Actually, with the mitral valve I feel safer 3.5 - 4.0. Given the graphs I have seen, and a person my age....a 4.0 without a fresh surgical site should be a non issue. I am afraid though, if I call in my 4.0 number I will get other instructions.

Prime example of self regulating here. Last week I tested at a 4.0. I was not really eating a lot, hence the higher number. I kept myself on my regular dosing schedule ate a few small salads and the following week was at 3.0. If I were to reduce and mess around with it. Out of range.

My new cardiologist was impressed with my knowledge, he even asked if I would be interested in teaching a class for his valve patients. I bet you he will not have a problem with me self regulating as I have been for 2 years after another appointment. Will see.