You're post is cracking me up!

My hematologist isn't an a-hole, but he is totally against the home INR testing. I don't know. Although I think his take was on reliability vs my pocket book.

I know what your doc is saying about the ultrasound. The treatment wouldn't change whether you still had some of the clot left or not. But there's just a BETTER way of saying it or explaining. Clearly, your guy did not graduate Charm School.

I am experiencing so much irritation and anger towards my primary care doctor and her staff right now. She manages my warfarin and I feel like all of a sudden, she and her staff are bored with me. I get my INR tested frequently, like every one to two weeks and lately every few days. So, I have to call the office and get the results.

The physician's assistant who's been working with me lately is a complete DOLT. Seriously an idiot. My doc tells her what dosage I should be taking and when I should check again and then the PA relays the info to me. Any time I have an additional question, the PA cops an attitude. And now, my INR is all over the place and I think they are put out by that. I think my doctor over reacts when I'm too high or two and implements these nonsensical dosing amounts. I was looking at my INR trend since January. There are times where I'm at 3.1 and she tells me to skip a dose. And then there are times when I'm at 3.9 where she doesnt change a thing. She just has me re-check in a few days. There's no rhyme or reason and I think it's because no one is tracking what theyve been telling me to take. So, it's like, whatever way the wind is blowing.

I was so pissed because after having to take vitamin K last week (my INR was 6.3), my INR dropped to 1.2. This was on Friday. The PA called and said my doc wants me to take just take 15 mgs and retest on Monday. I said, do you know that it's going to take a couple of days for this warfarin to even kick in? I'm not comfortable being at 1.2 with no lovenox bridge. The PA said that she has to trust the doctors orders and besides, the doctor is gone for the day (11:30) so there's nothing she can do about it. I told her, well, I just hope I don't drop dead from a clot over the weekend, thanks. I was LIVID that she couldn't call the doc on call or even page my doc. What's the big freakin' deal.

Needless to say, I didn't drop dead over the weekend, hence this long-ass post on LauraLu's dime. Sorry I'm stealing your rant thunder, but I've freakin' had it lately.

What an idiot. I don't know what he has against INR home testing, I have my own machine and NEVER had any problems with it.

Go to this post to check out my info on INR machines: http://dailystrength.org/c/Deep_Vein_Thrombosis_DVT/forum/6420423-home-inr-monitor.

Laura, maybe you should send this link to your Dr.

http://lifeafterdvt.forumotion.com/video-gallery-f38/effectively-managing-anticoagulants-t477.htm

Laura and RMB, I ran into the same thing with my PCP who I went to for 10years -same guy who misdiagnosed my PE -it was all in my head -,but I stuck with him for about a year afterwards. When it got to the point that I was arguing with him about things, and I felt like him and his staff really had no clue and didn't care anymore, I finally went elsewhere. My new PCP doesn't know ME as well, but he knows more about managing what is going on with me I think. It was hard to make the switch, anf there are times when I wish I hadn't switched, but for right now, I think it was the right decision. Every doctor doesn't have the same knowledge or are too busy with other patients or other things -and their staff -I call them the junk yard dogs at the door -if they choose to answer the phone. Even after them making several mistakes, the doc chose to "stand behind his staff" even if they had ther potential to kill someone -not going to be me. Worst part -the old PCP happens to live down the street from me and my kids go to school with his -so I have to be nice in public when I really want to tell him off and how stupid he is being. I hear ya, Teri

Laura,

When CMS (the Center for Medicaid and Medicare Services) approved home INR machines it definite was a step in the right direction.

Here is the article I wrote for my friend at the North American Thrombosis Forum regarding this:

CMS Expands Coverage for INR Home Monitoring
Courtesy of Tom Hogan, Secretary - National Alliance for Thrombosis and Thrombophilia (NATT)

The Center for Medicare and Medicaid Services (CMS) is expanding its coverage of INR home monitoring to include patients on warfarin for DVT (deep vein thrombosis) and PE (pulmonary embolism), i.e., VTE (venous thromboembolism, blood clots in the legs and arms). Previously, CMS provided coverage only for home INR testing of patients with mechanical heart valves.

The CMS Decision Summary is as follows:

"After examining additional medical evidence, we are expanding Medicare coverage of home prothrombin (INR) monitoring to include chronic atrial fibrillation and venous thromboembolism under the following conditions:

The beneficiary requires chronic oral anticoagulation with warfarin for a mechanical heart valve, chronic atrial fibrillation, or venous thromboembolism; and

The beneficiary has been anticoagulated for at least three months prior to use of the home INR device; and

The beneficiary has undergone a face-to-face educational program on anticoagulation management and demonstrated the correct use of the device prior to its use in the home, and

Home-testing with the device occurs no more frequently than once a week."

References:
http://www.nattinfo.org/Newsletters/NATT_Winter_07_Newsletter_Final.pdf
http://www.cms.hhs.gov/mcd/viewdecisionmemo.asp?id=209

As much as this decision was a win for patients, the problem is something you just ran into; getting the physician to support this initiative. One physican who highly support home INR monitoring is Dr. Moll. Here is his comments from our website:

This is good news, says Dr. Stephan Moll, chair of NATTs Medical and Scientific Advisory Board. However, in my opinion, as long as reimbursement (for the services health care workers provide to INR home testers) or the service-delivery structures do not change, I am doubtful that INR home testing will fully take off. This is very unfortunate, as INR home testing is really the way to go for many patients on warfarin. Under the present circumstances, doctors have relatively little incentive to support their patients doing self testing.

What you just ran into is exactly what my friend Stephan mentions above.

Regards,
Tom in Connecticut

Yep. an #^%$&^%^%$#!!!!!

Even if you are on meds forever.. if YOU want to know status of monster clot then that is all that matters. Tell him to get to the back of the line with the others that want to live your life for you.

Hmmmm... i wonder if the inr tester is more unpredictable than ONE STUPID TEST A MONTH. Oh hey.. not to worry... at least you know for that particular day...

again, get to the BACK of the line!

Buy 2 of them. Shove one of them in the ranter's mouth.

Ha, I love the attitude! The "sisters and brothers of the clots" are a feisty bunch, aren't we. Just because a Dr. has "finished with us" as in there is really "nothing more they can do" to make us better, boy do they get a little testy and easily upset. Especially if we are educated and question thier "treatment",
To the following questions:
I think I might have also had a PE at the time of my DVT is there a way to know?
I have never seen where the clot ends in my abdomen..Could it be in my organs?
I hear that I may be growing collateral veins, should I know how that is coming along?
Should I have another ultrasound to see if the clot has caused PTS?
Has it finally started to go away even a little bit???
I'll give you all one guess what the answer has been..........say along with me...........


It really doesn't matter...the treatment is the same. :(
Well it freaking matters to me. Sorry my rant for the day. And why can't we use their testing as a back up and have the peace of mind of our own INR testing machine, I have missed so many tests because of my long work hours and their short hours...so tired of it.

In the states, depending on the insurance and on the standards of care, a subsequent ultrasound may not be considered medically necessary and thus, not covered under insurance. I've not run into this with my insurance or provider, but some may.

I keep forgetting that doctors don't determine what is medically necessary, insurance companies do. Don't EVEN get me started....

Laura,

On the opposite side of the coin is the fact that your Coumadin Clinic depends on your visit to justify it's existance (aka - Job Security). It's not just insurance companies (though much like you I can sit here all day and talk about them). If a Hematologist approves the use of a Home INR Machine, his clinic looses a customer. So from a physician perspective, what is the benefit for him to authorize the use of a Home INR Machine. Dr. Moll's comments in my last post reflect this concern.

Dr. Moll is fully behind home INR monitoring and continues to fight for their approval. But he also received feedback from physicians around the country about not wanting to write prescriptions for them because of lack of incentives for this clinics. It's a battle we are still fighting and I guess I just want you to know that there are people in your corner fighting for patient rights and this includes some pretty influencial physicians.

Regards,
Tom in Connecticut

The incentive, one would think, would be achieving patient well-being and satisfaction, and a positive, on-going relationship. I can take my healthcare to another clinic (and as I continue to age and fall apart, they'll be missing out on some serious future $$$).
It may come to that; Dr. Moll had recommended I see a different hemotologist here in the Twin Cities, but I had already started seeing this guy and felt bad dumping him right away. Ideally, I want to make my doc see the light, not only for my sake, but for the sake of future clotters too. I'm williing to put up the fight, but if I can make no headway, I'll have to move on.
Tom, do you think Twin Cities NATT would be a good resource to help me out with this?

Laura,

NATT's Chapter should definitely be able to assist your or at least give you more guidance since they have . Pat Koppa is currently leading that organization as a Interim Executive Director. Pat is an awesome person with a lot of experience and is also a founding member of NATT. The support group also had their first meeting there this month.

You can reach Pat at the information listed o their webpage: http://stoptheclot.org/mn/index.htm

Tell her Tom from NATT sent ya! :)

Regards,
Tom in Connecticut

Insurance companies do, to a degree, determine what is medically necessary,in order to be able to manage the risk, but the decision as to what is or isn't medically necessary is typically based on what are the established protocals and standards as published by specific organizations, like the AMA and Centers for Medicare and Medicaid,etc.

I'm the local health insurance geek. It's ok. I can take the abuse.

I won't hold it against you, RMB!

Ha! Hey, we all have to serve somebody, as Bob Dylan said.

Health care is Soooo freakin' complicated now and it leads to so much frustration. I work in the business and I get frustrated.