My cardio doesnt "believe in" self monitoring...grrrrr

[COLLEEN S]

My cardiologist, along with his practice, has a 'coumadin clinic'. Think pricey copays, frequent visits combined with crappy medical insurance and you get the picture. I want to be able to monitor my INR level myself with a machine, but it is his philosophy and I was told "we do not allow patient self monitoring here, ifyou want to do that, you have to find another cardiologist." I live on the Eastern Shore of Maryland and there are 2 cardiologist groups to chose from, both of which do not allow self monitoring. As I see it, I can try to convince my doctor to allow me to self monitor, or go to another cardiologist farther away (Annapolis 1 hr away) and call in my INRs and have them change dosage by phone. This is all I can see. I have had to go every week for one thing or another. I was on an every 2 wk schedule, then I got a cold and my med made the INR .2 tenths off and they made me come in. Then I was on a 2 week schedule again and I got a boil that the Walk In med facility treated with Clindamyacin and they made me come in. This week I am off the Clinda so they are making me come in again ...this is costing me $35 every time I go. Im tired of making my doctor rich. How can I convince him to let me self monitor??? I am 46 and of above average intelligence.
Colleen
Ross1997, Thoracic ascending aortic valve aneurysm repair 7.0cms, and St. Jude valve implanted, Aug.2008.

 

[Karlynn]

Colleen - do you have a family practitioner that you can go to that would write you a prescription for home testing? Look at this sticky http://valvereplacement.com/forums/showthread.php?t=24104 and try to get your cardio to view it as well. I would also pose this question to them "If I was diabetic, would you require me to come in 2 - 3 times a day to test by blood glucose and receive my dosing instructions?" If they act as if you're being silly and then ask them - then why do you think I'm capable enough and intelligent enough to manage a medication regime that has more immediate disastrous results that can result from insulin over-dosing or under-dosing, but I'm not intelligent enough to test my own blood to get an INR #?

If you can't find a doctor in your area that will agree to home testing - I'd start widening your search area. What are the large cities you are near?

 

[Eva]

Nafsarcar,

We have Anthem too and I got my machine from QAS. Michelle is a great lady and very helpful. The only problem I had was that their rule is to send the machine to their trainer instead of sending it to the patient...it took my trainer 3 weeks to deliver it!!! I think he did not want to make the trip from Hollywood to Redondo Beach where I live.

Other than that, everything went fast and I had to pay $300 out of pocket only!

 

[COLLEEN S]

My cardio doesnt "believe in" self monitoring...grrrrr

My cardiologist, along with his practice, has a 'coumadin clinic'. Think pricey copays, frequent visits combined with crappy medical insurance and you get the picture. I want to be able to monitor my INR level myself with a machine, but it is his philosophy and I was told "we do not allow patient self monitoring here, ifyou want to do that, you have to find another cardiologist." I live on the Eastern Shore of Maryland and there are 2 cardiologist groups to chose from, both of which do not allow self monitoring. As I see it, I can try to convince my doctor to allow me to self monitor, or go to another cardiologist farther away (Annapolis 1 hr away) and call in my INRs and have them change dosage by phone. This is all I can see. I have had to go every week for one thing or another. I was on an every 2 wk schedule, then I got a cold and my med made the INR .2 tenths off and they made me come in. Then I was on a 2 week schedule again and I got a boil that the Walk In med facility treated with Clindamyacin and they made me come in. This week I am off the Clinda so they are making me come in again ...this is costing me $35 every time I go. Im tired of making my doctor rich. How can I convince him to let me self monitor??? I am 46 and of above average intelligence.

 

[Bridgette]

Print off a copy of the message you have just posted and shove it under his nose!!!

Gosh, he is not leaving you much choice!
Can your GP assist you in getting a home tester?

Bridgette

 

[Karlynn]

After some pretty heinous mistreatment from a few doctors prior to my valve replacement, I've learned to not settle for a doctor who doesn't work with me on my own health care. I'm a pretty strong self-advocate, and while I will gladly work as a team with a doctor who is on the same page as I am, I won't continue to see a doctor who doesn't see the need for me to be in control of my own health care management. I don't know how far away you are from Annapolis - but I'd start looking for a cardio there who is up to speed on the large benefits of home testing INR. If you find one - this would also tell me that they keep current on most everything having to do with the heart and would be someone I could trust a lot more than a doctor who tells me that even after 9 years of being a coumadin user, I'm not trusted to test my own drop of blood and call in the number. (I won't even address self-dosing.)

I live in the Chicago area and travel about an hour one way to see my cardio - not particularly fun - but 2 times a year is something I can live with.

Edit - oops - sorry - you did originally say you are an hour away from Annapolis.

Why don't you go to the heart forum here and start a thread asking if anyone has any cardio recommendations in the Annapolis area?

I think you'll feel that the travel is worth it because of the freedom that home testing would give you, not to mention the piece of mind.

Best wishes!

 

[Karlynn]

Colleen - see my post in the other thread.

 

[Karlynn]

Colleen - most members read all the forums. So don't worry about having to cover yourself by posting in each forum that looks like it applies to your topic.

 

[COLLEEN S]

Bridgette, my gp makes "House" look expedient! Karlynn, thanks I did.
Thanks for your suggestions all.

 

[Philip B]

Easy Choice

Easy Choice

Sounds easy to me...find a cardiolgist who believes in self monitoring. Mine's office is over 100 miles away. I adjust my dosage to stay in range and send him a fax with updates on my test results every couple of months. I do an office visit every six months.

-Philip

 

[ChouDoufu]

I can try to convince my doctor to allow me to self monitor, or go to another cardiologist farther away (Annapolis 1 hr away) and call in my INRs

so go to annapolis. no big deal, it's only an hour away. not like you'll be
going every other week. just go the one time and get set up, then tell
your current cardio whatever it is you say to arrogant pricks in your part
of the world.

 

[Eva]

My ex-cardiologist did not believe either in the self monitoring. I believe sthese doctors want to 'stay in control'! My new cardiologist use one at his clinic and he encouraged me to get one which I just received. I drive 40 minutes to go to my cardio.

Do you have a GP nearby...he might prescribe it for you.

Good luck

 

[lcwhitney]

Self testing is now considered the standard of care by his own licensesing board . I would have to tell him that. If that does not persuade him I would replace him. I home test and call my doc the results if I am out of range and he adjusts my coumadin.

Lettitia

 

[Ross]

There is tons of information on home testing on the internet to be had to present your case. Unfortunately, you have a Doc that is more concerned with making money then with your care. I doubt anything you do will pursuade him to change his mind.

Tell him to call Dr Jack Ansell and discuss his opinion with him!

Dr. Ansell is the founder and immediate past Chair of the Anticoagulation Forum, a network of anticoagulation clinics throughout North America, and is a member of professional organizations including the American College of Physicians (Fellow), the American Society of Hematology, the International Society of Thrombosis and Hemostasis, the American Heart Association (Fellow), and the American Medical Association. He is Chair of two consensus committees of the American College of Chest Physicians working to establishing national guidelines on antithrombotic therapy.

http://www.lenoxhillhospital.org/press_releases.aspx?id=732

 

[Taysgrama]

I also have Anthem and received my self tester within 3 weeks after sending them the information they requested. The contacted my doctor and got all the necessary paperwork. Out in my neck of the woods, my tester was sent directly to me and QAS called and set up a time for the trainer to train me over the phone. Not sure if they did that because I am in the middle of nowhere or what, but training over the phone worked well for me. Anthem paid for 100% of my tester and when I called them the other day about my test strips and prickers, they are also covered. Because I had already ran out of prickers, I just went to CVS and bought a box of 100 for $6.97 (they are the same thing diabetics use) and then I ordered more test strips from QAS (they coordinate with Anthem). Good luck. By the way, my cardio does not require me to come in for testing monthly anymore. I go in every three months for a check, but he has started trusting me to make my own coumadin dose changes since he has read this forum and has come to the conclusion that you guys all know what you are doing and he did not see any "bad" advice. He told me a few weeks ago that he was surprised that we tell people to call their cardio, if in doubt or to go to the ER. He was afraid that the forum would try to fix everything and since we don't, he felt really comfortable letting me dose myself.

 

[Karlynn]

He told me a few weeks ago that he was surprised that we tell people to call their cardio, if in doubt or to go to the ER. He was afraid that the forum would try to fix everything and since we don't, he felt really comfortable letting me dose myself.

Your doc is one of the ones we need to clone and send to members who have issues with their docs believing they're aren't smart enough to home test.

The funny thing is - we wouldn't have to give so much advice based on what we've learned from using the drug, if our medical community would make a concerted effort to get it right themselves. It's sad that I have to have the attitude that a doctor must prove to me that they know how to manage ACT, rather than just being able to assume that they know.

It's sad that I hold my breath for every new member here who starts ACT. Not because I'm afraid for them taking the drug, but because I'm waiting to see if the person managing ACT for them knows what they are doing. I know that there are a lot of managers and doctors out there that do know what they are doing. But we also see a lot of them here who have no clue. And then the drug gets blamed for being a bad drug to be on, rather than placing blame where it's due - on uneducated managers.

We try not to tell people to not do what they're doctors tell them, just give advice based on our own knowledge and experience. But it's really hard when we see a post telling us that they had an INR of 6 and were told to hold for 3 days. The advice we offer here is just an option. We're not telling you that you must do it.

 

[Lisa in Katy]

Colleen, first I would talk to your cardiologist directly. It could be an arrogant nurse that is giving out this information because she/he doesn't want to deal with the phone calls and he doesn't even know! If he truly is against self testing as a policy, you need to find another Cardio. It makes you wonder what other new technology he is unwilling to work with.

 

[catwoman]

Colleen:

There are thousands of articles about patient self-testing and self-management online. When I googled "warfarin" and "self-management," I netted 3,550 articles. I'm sure there are many more.

FWIW, arm yourself with studies that show that TTR (time in therapeutic range) is greater for patients who self-test and self-manage their doses than those who come to Coumadin clinics. There are statistics below in a variety of articles you'll need to wade through.

You'll find Dr. Jack Ansell's name connected with many. He is considered a guru of anticoagulation therapy and has written a book for physicians. He is a proponent of self-testing and self-management.

His book:
http://search.barnesandnoble.com/Managing-Oral-Anticoagulation-Therapy/Jack-E-Ansell/e/9781574392104

Here are a variety of articles:

http://www.ismaap.org/73.0.html

http://www.sciencedirect.com/scienc...serid=10&md5=31d380c38e3d5afdba3f7dbb04e8b5b7

http://www.medscape.com/viewarticle/522988

http://www.nature.com/nrcardio/journal/v2/n5/full/ncpcardio0193.html

http://www.bmj.com/cgi/reprint/328/7437/437.pdf

http://www.clotcare.com/clotcare/oral_anticoagulation_self_management.aspx

American Heart Association (check out Patient Self-Management)
http://circ.ahajournals.org/cgi/content/full/107/12/1692

From the University of Birmingham (England) in 2003:

http://www.rcgp.org.uk/Docs/Patient self testing or management of oral anticoagulation.doc

An article from 1989 ( ) by Dr. Ansell:

http://archinte.ama-assn.org/cgi/content/abstract/149/11/2509

 

[Blanche]

My favorite research report on home testing

My favorite research report on home testing

Perhaps you could send or take this document, along with others that have been mentioned, to your doctor.

This is Medicare's statement on home testing. It contains information and research reports galore.

http://www.cms.hhs.gov/mcd/viewdecisionmemo.asp?from2=viewdecisionmemo.asp&id=209&

Blanche

 

[catwoman]

Colleen:

You may not have seen this sticky under the Reference Sources forum at valvereplacement.com. This also contains some articles about self-testing and self-management:

http://www.valvereplacement.com/forums/showthread.php?t=7027