How to talk to my Dr.

[Joel]

I'm asking for suggestions that anyone may have on talking to my dr.(PCP) about Warfarin management. I'm new to this being 13 days post op.

I've been on 5 mg of Warfarin. When I was released from the Hospital on the 17th my INR was 1.8 - they let me go home anyway. My INR at the hospital had gone up and down between 1.5 and 1.8, but the last two days it was rising.

On the 19th, I was still at 1.8. So I was getting concerned. His Nurse called and said Stay at 5mg and test in a week. I didn't want to wait a week. I told his Nurse I was concerned that I wasn't in range. I then followed up by calling my Surgeon's office. His nurse agreed that a week was too long to wait and THEY ordered a test on Thursday(21st.) They were happy I called and was glad I informed them. I got call later that day from my PCP he sounded perturbed - although he agreed to the extra test.

The Thursday test yeilded a 2.8 result. I was happy and was told to stay at 5mg. Todays result (Monday 25th) 4.0. High, but from what I've read here nothing to worry about. I've had a nosbleed problem, but It has always stopped bleeding eventually. My Dr.(PCP) said to skip two doses and re-test on Wednesday.

Now, from what I have read here, skipping two doses will drop me pretty quickly. I'm not really all that high, and would rather maybe skip one and then drop my dosage 10%. This is based on what I have read on this site.

My problem is more that this Dr. kind of takes it personally when I disagree with him. In fact he preferred Tissue valve, when my Surgeon recommended a Mechanical. His reasoning "Didn't want to deal with the hassle of Coumadin." Well, If he can't manage it properly no wonder he'd want a Tissue. I told him I wanted to self-test ASAP, because of distance to the lab, etc. He said maybe in a year... On the other hand my Surgeon is very enthusiastic about me testing at home. He's convinced that makes a Mechanical so much easier to live with.

I want to question his decisions without offending him and so far I haven't been too sucessful. I can call the Surgeon's office to get a second opinion - but it is my PCPs job to manage anti-coagulation.

I have a new St.Jude mechanical in the Aortic position, also Dacron graft repairing an ascending aortoc aneurism. Prescribed INR range 2.0 - 2.5, but the surgeon said betweeen 2-3 is fine.,

Any suggestions? I have an appt with my PCP tomorrow (Tuesday 26th) afternnoon.

 

[Guest]

You either have to get a new PCP, resign yourself to being managed by someone who doesn't want to do it and doesn't know how, or teach your PCP how to do it.

 

[LLJ]

Joel: Think about a new cardiologist. You and he will have a very long relationship. You must feel comfortable with him;it is your heart and your life and right now he has more knowledge than you and he needs to be respectful of the fact that he is in the postion of being an educator. I have worked in health care for 15 years and the one thing I can tell you is you have to trust your doctor and still advocate for yourself. If he takes it personally, he is not the guy for you. I have had many cardiologist since we knew about my problem from birth. I feel comfortable calling my doc when I need to and I know he had educated me to the best of his ability. Good luck!
LLJ

 

[Cris N]

I'd vote for a new doc. Obviously the one you have doesn't want to learn, doesn't want to change, and apparently doesn't realize that this is your life we're talking about. There's a lot more to it than him just doing his job. You were absolutely right to stand up for yourself.

Cris

 

[Ross]

If your at 4.0, I'd leave it alone for another week. Just eat some more green veggies. The trouble is, your body is still going through changes from surgery and your INR is going to go up and down for a while yet. Holding one dose at your level for me, would bring on a catastophic drop in INR. If your going to do anything, maybe drop it by 10% for the week, but nothing more.

Unfortunately, I think your going to have to follow Al's advice. Talking to these people and making any form of suggestions to them is almost Taboo. I'm glad I have a Cardiololgist that at least listens to my reasoning and has yet to tell me I'm doing anything wrong.

 

[CCRN]

I'd vote for a new doc. Obviously the one you have doesn't want to learn, doesn't want to change, and apparently doesn't realize that this is your life we're talking about. There's a lot more to it than him just doing his job. You were absolutely right to stand up for yourself.

Cris

Ditto the above. Going for a new Doc gets my vote.

 

[Nancy]

Find someone who understand about Coumadin.

 

[Karlynn]

Reading between the lines in your post, I'm guessing you already know you need to find a new card, but are putting it up to the group to get a confirmation. You're doing a good job of being your own healthcare advocate. What about asking your surgeon for a referral for a new card. Since he is all for you home testing, that may be a good sign.

As Ross said, your INR will be all over the place for a while. While your body heals, it puts lots of things into continual change. Your doctor has demonstrated nicely that he doesn't really know how to manage warfarin. I would not put up with any doctor or staff that acts put-upon for questioning instructions.

 

[Georgia]

You ned a new doc (I had to do this; wish I'd done it sooner). Perhaps there's a coumadin clinic somewhere near you?

 

[Joel]

Thanks for your responses. I guess at this point it is moot.

At my visit today, he told me he was referring me to the local Coumadin Clinic and they would be testing and setting my dosages. So his dosing algorithms are irrelevant now. I am relieved.

I have high hopes for the clinic, since they dose many people.

 

[Guest]

YEAH WISH IT WAS THIS EASY FOR EVERYONE!!!

 

[Ross]

YEAH WISH IT WAS THIS EASY FOR EVERYONE!!!

Don't we all?

 

[Cris N]

Thanks for your responses. I guess at this point it is moot.

At my visit today, he told me he was referring me to the local Coumadin Clinic and they would be testing and setting my dosages. So his dosing algorithms are irrelevant now. I am relieved.

I have high hopes for the clinic, since they dose many people.

This is, indeed, excellent news. I was very happy when my PCP referred me to coumadin clinic... nurse who runs it really knows what she's doing.

Cris