Run-In about home testing

[twinmaker]

As some of you might know, we moved from the Tampa area to the Charlotte area back in April. I saw my new cardiologist within a few weeks after arriving here. At the time, he asked me about my coumadin monitoring, and I told him that I tested at home and dosed myself. He didn't even bat an eye. Well, Friday morning I realized that I had no refills left on my 10 mg. Coumadin (that had been prescribed by my cardio in FL) so I called the pharmacy and they called the doctor here in Charlotte. Friday afternoon, my phone rang and woke me out of a dead sleep (had my 2 year old grandson here for a few days, and I was sleeping while he slept). Anyway, it was someone from the cardio's office asking who was managing my INR. I must say that she slipped and said "blood sugar" first, and I then corrected her. Anyway, when I told her I tested and dosed myself, she flipped out. She said they couldn't write a new script because I wasn't being seen by their Coumadin clinic. She said that it was against state law to do what I was doing. I asked her if she preferred that I have a stroke if they didn't write the script and she said she would have to have someone else call me back. I guess that was a little ugly of me to be that sarcastic, but remember, she woke me up. I then get a call from another lady who also said it was illegal for them to give me a script for Coumadin. I told her that I could give her 6 months of my INR readings and dosages but she persisted that I couldn't do this. After pressing her further, she said that it wasn't a state law against what I was doing but an office policy. She informed me that I was going to have to start testing in a lab again. I basically said "over my dead body". I also told her that the practice sounded antiquated to me. She said she would have to consult with other people in the office and call me back. Of course, all through this, I've told them that the cardio knows about my self testing and had no problem with it. They said that he probably thought my doctor in Florida was following my INR. I mean "duh". Why would I get a new cardio in NC if my doc in FL was following me? Then I get a third call from a nurse, and she said that they would call in the script and speak with my cardio next week. She said they may just need a baseline INR from the lab every few months for their records. This is a huge practice in Charlotte. I asked if they had any patients that self tested and she said no. She said most of their patients on Coumadin are elderly and wouldn't be interested in doing it. I told her that I would switch doctors before I would go back to having my veins stuck. My veins in my arms are shot after 25 years of testing that way. The lab was already into my hands, and they told me after that, my feet were next. No thank you! Sorry to go on about this, but I was so mad and upset that I was in tears after these three phone conversations. I don't know what to expect next week. Any pointers would be appreciated. Am I being unreasonable? LINDA

 

[Gnusgal]

I would suggest speaking directly to the doctor, if at all possible. It sounds to me like he didn't have any problems with home testing, and it's just his office staff that's a little freaked out because it's not what they are used to. From my experience, a lot of times the doc doesn't have a clue what the office staff is saying to the patients. If you can talk directly to him about the situation, he may speak to them and solve your problems for you. At least, one can hope...

Good luck!

 

[geebee]

Linda,
Stick to your guns. My arms veins are pretty shot too after over 25 years and home testing is a Godsend. However, I do test every 6 months at a lab because it merely makes my cardio feel better for now. He is very conservative and I have caused him to change bit by bit. Other than that he is great and treats me like I have a brain and feelings. I have little doubt that the twice yearly lab tests will end soon because my INR has been so very stable.
I never have any problems with getting scripts refilled even if I am due for the lab test. You just ran into people who did not know what the plan is that you and your new cardio put together. Of course, if you misinterpreted the understanding with the cardio and he changes his tune, start a new search.
Best of luck.

 

[ALCapshaw2]

Your situation (running out of Coumadin) makes me wonder how one might get enough pills to tide you over until you can get an Rx and have that filled.

Would / could a pharmacy give someone a small quantity after showing them your empty pill bottle with prescription dose and provider name?

This kind of situation could easily arise while traveling (out of state). What is one to do in that situation?

'AL Capshaw'

 

[twinmaker]

The pharmacy would have given me enough Coumadin to tide me over the weekend. I think they realize how important some drugs are (such as Coumadin) and will make allowances when a person runs out. Maybe there are some pharmacists on our site that could shed some light on this. By the way, I was talking with my pharmacist Friday evening when I picked up my prescription, and she was telling me that she had just graduated in May and had just taken a weekend seminar on Coumadin and INR testing. I was telling her that I tested at home, and she said she didn't even know patients could do that. She wanted to know where I got my machine and the supplies. Is North Carolina living in the dark ages or what? Maybe the whole world is like this, and only we members on VR.com know about home testing. I mean she just attended a seminar on INR testing and didn't learn about home testing. Wonder who taught the seminar? LINDA

 

[Karlynn]

First, I would talk to the doctor and let him know that his office staff is telling big lies in order to control his patients. They told you it was against a state law to home test and self-dose, then they told you that no, it wasn't a law, but an office policy. That is a HUGE difference and the lie was told strictly to manipulate you. What other lies do they tell patients just to shut them up? This would really make me very angry and I'd let the doctor know about this ASAP.

I know you really liked this doctor and were relieved to find him, but if he makes excuses for his staff, or backs them up, I'd consider going else where. What they did was totally unacceptable.

I really fail to understand why medical people have a hard time grasping the fact that home testing and even self-dosing for warfarin patients is no different (and in fact easier) than diabetics who home test and self dose. And do you know any diabetics other than the very elderly or the very young (who's parents would do it) that don't take care of it themselves? I truly believe that this all goes back to the "Doctors fear bleeding" issue. People that don't know much about Coumadin are always in fear that you're going to cause yourself to bleed to death. Obviously stroke wasn't as big a concern to these office staff as bleeding, otherwise they would have at least offered to get you a small scrip to tide you over until they could speak to your doctor.

As you can see, this really frosts me, just as it does you. Now let's take 3 deep cleansing breaths!

 

[twinmaker]

Karlynn, you are so right. In fact, the second lady that I spoke with gave me this example of why they couldn't/wouldn't write the script for me. She said, "what if we gave you a prescription for Coumadin and you bump your head and have a bleed...then we'd be legally responsible." I guess my comeback then should have been..."I've been seen by a doctor in this practice who knows I'm on Coumadin for a mechanical heart valve and I've been on it for almost 25 years, and if you don't write the prescription and I have a stroke, are you also responsible?" Oh the things I've thought to say since I've hung up. OK...I'm breathing deeply now...LINDA

 

[Lisa in Katy]

It sounds like this is something new that they haven't dealt with before. I don't home test, but I also don't monitor monthly. Every other month is good enough. My dose hasn't been adjusted in years. I live in the Houston area and there are at least 3 labs within 5-10 miles of my house and probably at least 20 within 15-20 miles, so my insurance won't cover the machine because it would be a matter of convenience, not necessity.

I can see how they would have a problem with "self-dosing" and why the doctor wouldn't necessarily okay this practice. Since Coumadin is a prescription med, only doctors can prescribe it. If you are changing your dose without a doctor's consent, and since his name is on the label, I could see where that could get a little tricky. I'm not saying that we don't all do this at times, but if you change your dose, I would think that they would want you to call in so the doctor can okay it, even if it is just a rubber stamp.

For an answer to Al's question, I was once traveling and realized that I had left my prescription at home. The prescription was at Walgreen's, so I went to the local Walgreen's and asked them what to do. My insurance wouldn't okay a refill because I had just gotten one, but the pharmacy did give me enough pills to get me through the weekend. I have now switched my prescription to a local pharmacy because Walgreen's kept messing up, so I'm not sure it would be as easy. They would probably want to call the pharmacy directly to verify the prescription.

 

[Ross]

The office watchdogs are like pitbulls. I had a similiar encounter with mine over a test result that I had run along with my BMP. The nurse wanted to know who was following my Coumadin and I told her that my Cardiologist was and thought it was over. Heck no, she calls back 15 minutes later saying no he does not and they need to know who follows it. I told her I self test and self dose, that he did too follow me. I ended up explaining the entire process of testing, calling in my INR and if it's out of range, the company calls the cardiologists office. Top it all off, she was being very rude over a NORMAL INR result that she wanted to relay to the Doctor.

INR self testing is, for the most part, a new thing for the people in the U.S. Very few people do it, though it sounds like everyone does here on VR. We are the cutting edge folks so to speak. It's catching on, but at a snails pace across the country.

Ask your pharmacist for enough Coumadin to tie you over until the Doctor can be reached. I've never been told no yet when I've run into that circumstance, so you shouldn't be either.

 

[mtkayak]

I was told just because I have a home kit doesn't mean I stop going to the doctor. I still have to go once a month to have it checked. Perhaps you can go to the doctor once a month or so and let them watch you do it yourself. That's the way my last visit went. All the nurse did was watch me do the self test to make sure I was doing it properly and then she recorded the results. It does sound logical that a doctor can just call you a perscription in over the phone without seeing you though esp. if you've been on the medication for years. The only drugs I know doctors can't issue over the phone to a pharmacist without seeing you is narcotics. This is just my best guess as what to do. You guys have more years of experience with coumadin, I've only been taking it for four months though. Good luck.

 

[jeffp]

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 !

 

[Karlynn]

Linda, don't you hate the "I should have saids" after you hang up a phone or finish a conversation.

Mtkayak - I wouldnot put up with having to go in once a month to demonstrate that I know how to run a test. Demonstrating it once to show you can do it - fine. But every month? That's just an insult to your intelligence and totally ridiculous. What's the benifit of home testing in that doctor's eyes, if he's having you come in once a month?

I know I keep coming back to the diabetic patient issue - but what is the difference here? The difference is that doctors know a lot more diabetics than they do people on Coumadin. Some people will say "Coumadin is a drug that can have dangerous effects if mishandled." First of all, we're talking about sticking a finger and dropping the blood onto a strip. Secondly, insulin is also a drug that can have dangerous effects if mishandled. My friend's daughter was diagnosed with diabetis when she was 7. She left the hospital running her own blood tests and giving herself her own insulin shots. They taught her mother how to calculate the insulin dose. By the time the daughter was in Jr. High, she was calculating her own insulin dose. These activities were done a few times each day. Yet we have doctors who, for some odd reason, think people that take Coumadin are just too stupid to do what a 7 year old was doing, with the blessing of the medical community. It truly makes me crazy.

I have a cousin who is diabetic and has gone into a diabetic coma twice in his adult years. He was dx'd when he was 25 with Type 1. Did the doctors start making him come in daily to have them test his blood sugar and give him his insulin shots? Of course not. Can you imagine a doctor's response if a Coumadin patient who was home testing and had a bleeding event?

 

[twinmaker]

It should be interesting to see what the cardio and his office staff decide that I need to do with my testing. I expect I'll hear from them today about this. I'm sure after talking/arguing with three people late on Friday that I'm not on their "good patient" list, but I don't care. I have an appointment with the cardio next month, and if I don't get the opportunity to talk with him on the phone before, believe me there will be a conversation about the office staff during my visit. In fact, I think I'll request that the three people I spoke with last Friday be in the room when we discuss this. I'm serious about that. I guess my question to all of you is: what is a good compromise...testing with the lab every 6 months? Also since I test every week, should I agree to call in the results every week or only when they're out of range and then the question is "how" out of range? Karlynn, you are right about the diabetic issues. Maybe one day people like us that take Coumadin will be thought of as diabetics are today with self testing and self dosing. Wonder how long it will take? I mean as far as I know, insulin is a prescription drug, right? So doctors are writing these scripts and patients are testing and self-dosing. Are they having to be monitored like us? Oh well...sorry to go on and on. Like I said before...it should be interesting to get the call from the office after they speak with my cardio. LINDA

 

[RandyL]

Can't beat home testing

 

[JimBob]

Let's Make a Deal!!

Let's Make a Deal!!

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

 

[Ross]

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.

Jimbob

Hey Jimbob, even us self dosers still have the Doctor in the loop, it's just they understand that we understand and don't get concerned unless we go out of range, then they want to know and want to know what were going to do about it. It's a piece of cake really. There are still times that for one reason or no reason that my INR jumps up around 4.5 unexplained. I think it just comes with the territory. Good luck. You'll be trying this for yourself when your comfy with it and then you'll say, "I paid someone to do this?".

 

[Karlynn]

Hey Jimbob, even us self dosers still have the Doctor in the loop, it's just they understand that we understand and don't get concerned unless we go out of range, then they want to know and want to know what were going to do about it. It's a piece of cake really. There are still times that for one reason or no reason that my INR jumps up around 4.5 unexplained. I think it just comes with the territory. Good luck. You'll be trying this for yourself when your comfy with it and then you'll say, "I paid someone to do this?".

Jimbob, I had my St. Jude for about 12 years before I started self-dosing. So don't feel badly if you aren't comfortable with it after a year.

When I started home testing, I still called in every INR to my cardio's office. It was with the help of Al Lodwick's site www.warfarinfo.com and the wonderful people here that gave me the courage to do my own dosing.

2 weeks ago at my cardio I was 4.3 on my INRation and 4.7 on her INRatio. I didn't change my dose. Last week I was 4.7 on my INRatio, so I decided to lower my dose by 10%. (My cardio and I agreed to that if my next test - last weeks- was also high.) Well, today I'm 2.4. I don't like being that low, so I'm going to bump my dose up to 5% of a decrease of my dose two weeks ago.

Summer heat usually seems to jack up my INR.

 

[twinmaker]

I just tested my INR a few minutes ago and it was 4.9. Last Monday, it was 4.0 and I dropped my dose. Instead of taking 12.5 every day, I took 12.5 daily except for Wed. and Sat. and on those days I took 12. Went down on my dose and my INR went up. I'm not scared but wanted to have my plan ready in case I get the dreaded phone call from the cardio. Anyway, I'm dropping my weekly dose by 15% and will retest in 5-7 days. I don't like messing with my dose unless I'm really off like today. My hematologist at Johns Hopkins said one of the worst things a person can do is change the dose every time the INR is off by a little. This kind of bouncing around is typical for me. That's why I test weekly. LINDA

 

[RandyL]

I just tested my INR a few minutes ago and it was 4.9. Last Monday, it was 4.0 and I dropped my dose. Instead of taking 12.5 every day, I took 12.5 daily except for Wed. and Sat. and on those days I took 12. Went down on my dose and my INR went up. I'm not scared but wanted to have my plan ready in case I get the dreaded phone call from the cardio. Anyway, I'm dropping my weekly dose by 15% and will retest in 5-7 days. I don't like messing with my dose unless I'm really off like today. My hematologist at Johns Hopkins said one of the worst things a person can do is change the dose every time the INR is off by a little. This kind of bouncing around is typical for me. That's why I test weekly. LINDA

Well you only dropped your dose 1mg for the whole week. I am surprised you had any change and the change you had was prolly not from the coumadin but from something else you took or ate or ran 25 miles evryday just kidding. You might want to see what you did different this past week.15% drop is pretty big, it is almost the equivalent of 2 mg a day less. If it were me I think I might reduce my dose 1mg per day and see what happens.

 

[Blanche]

Jim Bob:
The older I get the more I appreciate diversity. Self dosing is not for everyone. My brother takes Warfarin and he is one who definately needs to have the doctor's support and guidance. My husband does self-dose, but it took about 3 years for the doctor to become comfortable with this. It is also important to know that Albert sees his doctors on a regular basis. THere isn't a month that goes by with out doctors' visits and all 5 of his doctors ask about his anticoagulation.

I like the idea of having an extra amount of Coumadin, just in case. We are required to use mail order for rxs and get a three month supply each time. We both carry prescriptions in our wallets when we travel. But, I rather like the added security of having extra drugs themselves. I keep remembering New Orleans....

Regards,
Blanche