Run-In about home testing

[Sagebrush]

you had every right to react that way !!!

you had every right to react that way !!!

Linda....I don't think you are overreacting at all !!! I would in fact have a little conversation with your new cardio about the situation...that was unprofessional of them to act that way and say it was illegal!!!! If he doesn't seem to care about how they reacted then find a new cardio. I think your come backs were great....I wish I could be more like that. Good Luck!!!!

 

[Marty]

I am just one year (last week) post-op and have been self testing for about 3 months. I have the same machine as the cardio and when I got it I took my little kit in and we did it together - they got one finger and I got another. We were within .1 of each other. We agreed that I would FAX in my results once a month, that I would call them if I got out of "normal" range and that I would not self dose.

Ok, so we agreed - I test every week for now, record my little number and FAX them in at the end of every month and just last week had my first call in with an out-of-range issue (for some reason I spiked at 4.9 last Friday ). Nurse called me back in 15 minutes to confirm the information I provided to the phone-answering person. She called me back less than an hour later, gave me new dosing directions and told me to retest in a week. All worked out just as we agreed.

I know there are some out there that are comfortable with self dosing - I'm not yet. I am OK with self testing - no real issues there. Maybe one day I'll be able to take on the responsibility of self-dosing but for now I'd just as soon that the cardio be kept in the loop and be a participant in my routines.

Here's another thought - when we set this up I asked the Dr. about this out-of-town/out-of-Coumadin thing. The office gave me a 30 day sample of 5mg. tabs and told me to put them in a separate bottle to be kept for emergencies. It was a great compromise and really nice to know that little bottle is there - just in case . Jimbob

JimBob, I fully agree that most patients that begin to self test should not self dose for a while. Eventually however you will learn your own body better than any doctor can. This takes some patients longer than others but I would say six months to one year is about right. Let us know how you do. Marty

 

[Christine]

I personally stopped going to the lab in Oct 05 (was doing both until I felt confident) when my Dr was out and some half twit had me nose dive in the "normal" persons range.. on more than one occasion.. OK, that was a bit harsh, but it was the "fill in's" who drove me nuts and I finally just stopped going to the lab and just tested at home and self dosed on top since I was doing a better job then the "fill ins" were.. docs noticed when I had my yearly blood work done this spring - so I included the lab draw and they questioned the absense and then approved my self dosing as well.. I don't even call it in...unless I personally feel the need to...which I don't.. I like that I have control over my heart disease, and not the other way around..

Chris

 

[RCB]

I'm with Jeff,

I'm with Jeff,

I'm going to give you a hard ball answer on this one...Find another cardiologist. The staff makes or breaks your care with the doctor. I may be a bit anal about ethics, but it's NEVER OK to lie to a patient about care. If it's office policy (obviously they're embarassed about having to say no to you) then just say it. Don't make up stories about state law - heck, the doc's don't know enough about INR testing, you think the state gives a $%^&*!
Will you ever be comfortable with any response from the staff now, or will you be one of "those" patients who has to hear it from the doc's own mouth?
When I was in practice, lying to patients was a fireable offense - I clearly spelled this out in the job interview and again on page one of the office manual.
It's not easy; my cardio was OK with home testing but wanted monthly labs because he doesn't trust (have enough experience with) POS testing. We compromised at 6 months when my primary vampire does his profile testing. As far as self dosing, he is down right 100% against it. I told him he can either play with me or against me and he realizes that I know more about managing this than he does (I have a bit more at stake in the matter). I'd rather get the meds by Rx (and have my insurance cover most of it) than order them on my own (then I have to pay the whole thing by myself - even though warfarin is not a high price med).
Life's full of compromises - being on both sides of your story (doc and valver), let him/her do the compromising for a change.
P.S. doing vein draws at the ankle is easy. The veins are like big fat juicy ziti noodles, but it hurts like a !

I would first give your cardiologist a written account of the incident with his staff and ask for a copy of the "office policy". Ask for a written reply! If you don't get it, switch doctors as Jeff said.

In my opinion, the staff has already been unethical in their dealings with you
and might have put their license to practice at risk by their conduct. If you do go to another practice, I would send a letter to the state medical board.

I'm sorry you had this problem and wish you good luck!

 

[geebee]

I had my yearly visit with my cardio yesterday. He asked me if I was still doing my "home testing thing". I said, "of course" and his response was, "you must really love not having to get your arm abused". I told him I still go twice a year to keep Connie (his coumadin nurse) happy and he said that wasn't necessary. He said that I know more about coumadin than he and Connie combined. And he is a very conservative cardio so go figure.

 

[twinmaker]

Gina, I hope when I do hear back from my cardio or his office that they've changed their tune and they are singing the same song as your doctor. I'm not holding my breath though. I'm surprised that I haven't heard back from them this week considering all the stuff that went on over the phone last Friday. My doc may still be out of town. I did notice on the script they wrote for my 10mg. Coumadin that it had no refills so this story isn't over yet. I'm still a little steamy about the office staff telling me a lie about the self-testing. Don't worry...I'll be taking that up with the doctor next month during my office visit. We'll see what happens. LINDA

 

[bvdr]

Linda, I'm a North Carolinian too and home test and self dose with the approval of both my PCP and my Cardio. I do happen to be the only patient in both practices that home tests. Put into the equation that I'm also an RN and had a good working relationship with these docs and have never met any resistance from either of them, even so, on occasion there has been a staff member or two that had an entirely different attitude.

First of all, the term "self-dosing" is problematic and sends up red flags in the medical community. This may be avoided by using terms that refer to following a specifice dosing protocol. If one wants to take over the responsibility of changing warfarin doses then I would think it should be approached with a written plan that states how a dose change would be determined. I think Al's site has this. If a patient and doctor agrees on this then a copy could be put in the patient's chart and the doctor and staff has something to refer back to. As Ross said, this is uncharted territory for many of American doctors and like it or not we do live in a time when malpractice suits are a very real concern for anyone in the medical field. But Linda, the way the staff reacted to you is way out of line!

I hope this has a good outcome for you and I think it probably will.

I'm in the Charlotte area a couple of times a month so maybe we can get together sometime.

 

[twinmaker]

Betty, I'd love to meet you and get together. That would be fun! I majored in nursing in college but dropped out with only two semesters left. I guess you could say that I know enough to be dangerous. I only had my psychiatric and a nursing course in legal stuff left to finish. I know...dumb on my part. Anyway, I've also worked in a doctor's office, and I know what the staff did here is way out of line. I guess that's why I gave them such a hard time on the phone. I guess since we all talk about home testing here that I feel that there must be at least a few people who do it in every practice. You're right about using the term, "self-dose". When the first person asked me who determined the dose I was taking, I simply said, "I do". That got the ball rolling....and rolling and rolling! Some doctors and their staffs are afraid that there are people who are so involved with their own health care. And then there are some (like the practice that I went to in Florida) who when they signed the paperwork for my INRatio machine, they wanted to know more about home testing and where they could get more information for some of their patients that had inquired about it. I gave the address of this website to start with. Who knows...maybe I'm breaking new ground with this practice, and they will be able to inform more patients about home testing. It's a nice thought, anyway. LINDA

 

[ALCapshaw2]

Linda,

If you want to stay with this new Cardiologist, you may want to do a little 'fence mending'.

Showing him a copy of the Dosing Protocol you use may be a good way to bridge that gap. Do you have a copy of the CHEST protocol (which I believe is the standard used by most doc's)? Alternatively, order a copy of Al Lodwick's Dosing Guide ($5) from his website (www.warfarinfo.com) and take that to your next appointment.

I can easily see how someone coming in 'out of the blue' and telling the Cardio that you 'self dose' would raise alarm bells. He doesn't know you from Adam and has no idea what you know about Coumadin management or where you learned it. A little diplomacy could go a long way in avoiding a 'front end collision'.

'Al Capshaw'

 

[Ross]

I guess you could say that I know enough to be dangerous. LINDA

Ooo, my kind of woman!

 

[twinmaker]

Al, when I spoke with them on the phone last week, before things got heated, I calmly explained how long I had been on Coumadin, why I home tested, and that I could bring them 6 months worth of my INR's and the dosing adjustments that I made. I do have a dosing protocol. That's what I go by. That's when they told me that it was against NC state law to do this myself. Things sort of went downhill from there. Believe me...I'm a pretty passive person and I avoid confrontation. Until a nurse called me back and I explained things to her, the other two ladies just didn't want to hear anything. The nurse seemed to realize that I was at least somewhat knowledable about what I was doing. I was also upset that the doctor hadn't told me during my first visit that he or the office didn't like what I was doing.

OK, Ross...now to you. I'm only passive some of the time. It can be dangerous when a woman "plays nurse" and I'll leave it at that! LINDA

 

[Blanche]

I found this article on "Self Management of Oral Anticoagulation" on a site that is a wealth of information on anticoagulation. The article references a study that was undertaken in Spain that shows that the self-management group experienced fewer major adverse events than did the anticoagulation clinic group...The self-management group also had fewer bleeding events. The duration of the study was one year.
http://www.clotcare.com/clotcare/oral_anticoagulation_self_management.aspx

Linda, I thought you might make use of this material when you discuss self-management with your doctor. The other three articles in the References might also be useful in supporting your case for self-management.

Regards,
Blanche

 

[Marty]

At a national meeting a few years ago I had lunch with a hematologist from Kiel Germany. He said self testing by patients only helped him if they also self dosed. He encouraged all of his patients to self dose and not bother him! I know my busy internist GP is glad I don't bother him.

 

[twinmaker]

Blanche, thanks for letting me know about these articles. They'll come in handy when I go in next month. And Marty, the doctor you met that likes his patients who home test to self dose just tells me that for the most part, patients know themselves and their bodies and conditions better than most doctors think. I wish more doctors were like the one you had lunch with. I still go back to what Karlynn points out about diabetics. I wonder how many years it took for doctors to become comfortable about them testing and dosing themselves. Of course, since they test daily or several times a day, I guess that may have sped things up in that department as doctors wouldn't want to be bothered that often. I really don't mean to sound nasty...but. LINDA

 

[twinmaker]

Update

Update

Well, I got the call from the doctor's office this evening concerning the home testing of my INR. I was told that after consultation with my cardio and the nurse in their coumadin clinic that they would ALLOW me to test at home but I was to call in my results to them and they would manage my dosages. I am also to get a vein draw every three months. I guess I will do this since I'm new to this practice and they aren't familiar with any patients doing this. But when I see my cardio in a couple of weeks, I'm going to discuss this with him further. Any other suggestions from you all would be appreciated. LINDA

 

[Karlynn]

I know I sound like a broken record about this, but ask the doctor what he would do if he had a new patient who was diabetic and was insulin dependant for 20+ years if he would require that person to call the office in order to get their insulin dose daily. I would ask him what his fears are of having you, who's been on Coumadin since Moses was in short pants, handling your own dosing.

If he has fears about someone like you doing your own dosing, I would go further to say that he does not have enough correct information about Coumadin to handle your dosing either and will make judgements based on old information. I know that sounds harsh, but having a patient come in who has been home testing and self-dosing and then require them to stop doing both or one for no other reason than their own fears, is ludacris.

Have him call your doctor in Florida and speak with him about your history and maybe that will put his mind at ease.

Most of my cardiololgist's patients on Coumadin are older and don't wish to handle their own testing and dosing (as is Al's experience), but my cardiologist sees a woman in her 40's who's been on the drug for almost 15 years and is willing to give me credit for having a mind that's able to take care of my own dosing and is comfortable being my consult when questions arise. For a while, I was her only patient who home tested and self-dosed. Now she is encouraging some of her patients to explore the idea and has actually called me for references to places to aquire machines.

I would also question the doctor about what he would do with different INR results to see if you are comfortable with how he and his staff would handle dosing. Ask him what he'd do if your INR was 5, or 4 or 1.8. If he's telling you to skip a dose at 5, or to hold at the same dose for 1.8, then he doesn't know as much as you. And find another doctor because you'll be second guessing him all the time and having to hassel with his staff when you disagree with them.

Hmmm, maybe offer to call the office with your INR for a defined time period (2 months), tell them what you will be doing for your dosing and have them report it to him. Make sure that he knows that this is just to set his mind at ease, not to assure yourself that you know what you're doing.

 

[twinmaker]

Karlynn, You make some very good points. These are the things I will discuss with my cardio this month. I think your last point about calling in my INR and then telling them what I would do as far as dosing is something that should be very workable for me and for them. Maybe when they see that what I'm doing is alright, then maybe they will just let me do my thing on my own. I will be speaking with the coumadin clinic nurse next Tuesday when I call in my INR results from Monday night. I will tell her what I told the woman who called today...I know my body better than anyone else! LINDA

 

[RandyL]

I am sorry to have to say this but there is only one person in charge of your body and that is you. If you feel comfortable dosing yourself and have the years of experience doing so then just do what makes them happy and also do what makes you happy if you know what I mean. I am sorry to say that I am in a somewhat similiar situation and I do what I have to to get my scripts for coumadin. I am not going to spend the rest of my life fighting over this issue with PA's that don't have a clue how to dose. I just use Al's chart and follow it religiously and have no problems.
Good Luck

 

[twinmaker]

I know exactly what you mean Randy, and I'll do just that. After being on Coumadin for almost 25 years, I feel that I know quite a bit about dosing myself, even though I've only been doing it for 6 months (and home testing for a little over a year). I learned a lot from having blood draws at the lab, and seeing what the nurses came up with for a dose. I have a dosing schedule and I may be wrong, but it's probably the same one that these nurses are using. The only difference is that I know myself better than they do. For example, if I'm told to hold a dose when I don't think I should, my husband has always said, "Linda, you know yourself better than they do...do what you know to be right". After some of the "old wives' tales" that I've heard from doctors and nurses about Coumadin, a person has to watch out for themselves. LINDA

 

[catwoman]

Linda:

Do you have one of Al Lodwick's algorithm dosing charts? If so, make a photocopy and take it with you to your cardiologist appt. Show it to him and ask that it be put in your file.