Very Frustrated!

[Mama2Rylan]

A couple days ago I went into get my INR checked..well I was in perfect range so I was pretty excited about that...but when I talked to my Dr's nurse she told me that I didn't need to get rechecked for another month...since I had my surgery only six weeks ago and am "brand new" to coumidin, waiting a whole month makes me pretty nervous...so when I expressed my concern to her, she just kept saying that everything was going ok and that three weeks to a month is pretty much the "norm"...I tried to make her understand that just because everyone else was comfortable with waiting that long doesn't mean that I am...she didn't really say much but finally said that if I felt comfortable I could come back in to get checked again in two weeks...well that really upset me that she didn't understand where I was coming from...

So then I brought up the idea of a home testing kit, since I was really thinking about getting one anyways...that way I could test myself whenever I was feeling a little nervous about it (just for some "piece of mind") Then the nurse told me that the only people that get the home testing kits are people that need to test everyday! I kindof argued with her for a little bit because I know of other people on this forum have testing kits and don't test everyday...so what am I suppose to do? How did everyone else talk to their doctors about getting a home testing kit? I just don't know if that is what my clinic believes or if my nurse is just a little "slow" when it comes to this

 

[Karlynn]

OH, I'm so sorry for your frustration. Talking to people who don't know a thing about Coumadin management and pretend they do are VERY frustrating. It truly is the worst part of being on Coumadin. As I get older, I find I don't suffer fools too well anymore, particularly when it comes to my health.

As I'm sure you probably know - no one should be testing every day! If this woman is managing people on Coumadin, she is most likely screwing people up more than getting them theraputic. Once a week is usually the shortest time. (I test once a week.) If there is a big problem and you're trying to get in range - 3 days is the shortest amount of time.

You should be fine with the 2 weeks for now, if you have been in range lately. If this last test was the first in-range test for the last few tests, you may want to get one in a week for your own peace of mind. Many Coumadin users do only test once a month. But at 6 weeks post-op, I can understand why that length of time makes you uncomfortable.

As far as getting a home unit, the ease or difficulty of that lies a lot with your doctor. First thing I would do is ask to speak directly to your doctor and tell him/her that you are VERY uncomfortable with getting Coumadin directions from someone who obviously has no idea what they are talking about. Unfortunately, if the doctor expresses his confindence in the woman, that tells you he doesn't know much, and that you need to find a doctor that does.

Most doctors will probably say you haven't been using Coumadin long enough to home test. I don't understand this, as diabetics are self-testing immediately upon diagnosis. I think this is changing somewhat, as Mayo now has a program they are trying and sending home their Coumadin patients with a home testing machine.

If you can get your doctor to sign off on the home testing, then your easiest way to deal with the insurance company is to give QAS or another company a call. They will handle the whole thing for you and get your answer on coverage.

Is this a Coumadin clinic that is doing your testing?? If so, find another one now.

 

[geebee]

First off, talk to your doctor not his nurse. Secondly, you need a prescription that says you must test weekly or your insurance won't cover it. Also, is it difficult for you to get in to test? That also helps to convince folks for the need to home test. Maybe distance is an issue, maybe you are too busy with your family to get in?

If your doctor is opposed to home testing, find another doctor. Home testing is becoming very much the norm these days because it is so very important for valve patients to stay in range.

Try not to stay frustrated because that will cause you to give up and you should not.

 

[bvdr]

First of all, I don't know of anyone who tests everyday. Most of us with home testers test weekly or maybe every other week. I think your nurse isn't familiar with home testing or she wouldn't have made that kind of statement.

One of the advantages of home testing is that frequent testing allows a person to catch an errant INR earlier so corrections can be made before possible complications occur. I'm glad you are in range but still understand your concern about going to a longer interval between testings so early post-op. I think you are right to request a few more weekly or maybe every other week for a while longer. During this time gather all the information about home testing, educate yourself about the whole process, and then bring up the subject again.

 

[Ross]

I don't think that nurse knows how to manage Coumadin period or she wouldn't have made those idiotic statements to start with. When I started Coumadin, they wanted me in in 3 days, then one week, then 2 weeks. Once stabilized, once a month. I now home test and test once a week. Testing everyday is not only a waste, but would be too expensive to consider.

I think your best to talk with your Doctor about it and if he's clueless also, then you need to find someone that knows what they're doing.

 

[catwoman]

I understand your frustration. My PCP lets me home-test, but I do think of the day when he retires (he's about 53-54) and I have to find a new PCP that will let me continue.

Three months post-op I found out about home-testing. I needed to build a case to get a home monitor, so I settled on weekly testing. My PCP was not difficult to sell -- he has 2 other patients who home-test.

You are very young, will be on warfarin long term, have a history of heart problems and take several medications. That's enough to warrant having a home-testing unit. Your doctor should understand that.

There is research that verifies that warfarin patients who home-test stay in range more than patients who have lab draws or finger-sticks at a doctor's office or hospital.

Having a machine comes in handy when you have to start an Rx because of illness and then have to retest after X days. (You test before initiating the new Rx and then several days after to see if you need to adjust your warfarin dosage.) You may need to test before dental appts (to make sure you are in range) or before having medical procedures and going on Lovenox.

Over a long period, it may be more cost-effective to home-test than to shell out a co-pay & then your portion of the INR testing fee.
I figure that my costs for testing supplies is $375 annually. This year I paid the first $200 as deductible; insurance paid 90% of the remaining $175 and I paid $17.50. I have a flex plan, so I got reimbursed for my deductible early on.

It would be much more costly to my pocketbook & flex plan for me to go to the doctor.

What I really like hearing is my PCP saying, "I wish all insurance companies would cover home-testing machines." He has a CoaguChek S & does understand warfarin; he allows me to adjust my own dosage, just writes scrips as needed.

 

[Mama2Rylan]

Thank you for all your responses...I knew I wasnt going crazy I don't think the nurse has any idea what she is talking about (and to be honest with you, I don't think she has very good "people" skills ) I'm not really sure what I am going to do reguarding my doctor and this nurse...I don't feel very comfortable with either of them right now so I am really thinking about finding someone else. The biggest thing that makes me wonder is, I was talking to the nurse and I was just a little curious about my dosage...so when I asked her about it she said that thay have a sheet they go by. Basically they test me then check this sheet to see what my dosage should be. I guess so far its working, but don't you think that if a doctor is helping someone with a medication that is this important they would know what they are talking about? I mean if thats the case, give me the dang sheet and I'll do it myself

It's just that I feel so new to this all...not just the medicines but to my heart condition overall...I mean my last surgeries were when I was younger so I don't really remember them...and being that young I didn't really "know" what was wrong with me, I didn't want anyone to explain it to me...but now that I am older, I know what is going on and I'm the one in control of it...

 

[Ross]

so when I asked her about it she said that thay have a sheet they go by. Basically they test me then check this sheet to see what my dosage should be

I think you need to do more then RUN AS FAST AS YOU CAN from that place!

Everyone is different, dosages are different for different people, medications are different between people. There is no way they can manage dosing by a simple sheet of paper.

Sit yourself down and have a good read from this link:

http://www.aafp.org/afp/990201ap/635.html

 

[catwoman]

I wonder if this "sheet" is a dosing chart similar to what many of us got from Al Lodwick????

 

[Ross]

I wonder if this "sheet" is a dosing chart similar to what many of us got from Al Lodwick????

I may be reading more into it, but the statement

Basically they test me then check this sheet to see what my dosage should be.

Leads me to believe differently. I suppose it's possible, but if so someone isn't explaining things clearly.

 

[perkicar]

A couple days ago I went into get my INR checked..well I was in perfect range so I was pretty excited about that...but when I talked to my Dr's nurse she told me that I didn't need to get rechecked for another month...since I had my surgery only six weeks ago and am "brand new" to coumidin, waiting a whole month makes me pretty nervous...so when I expressed my concern to her, she just kept saying that everything was going ok and that three weeks to a month is pretty much the "norm"...I tried to make her understand that just because everyone else was comfortable with waiting that long doesn't mean that I am...she didn't really say much but finally said that if I felt comfortable I could come back in to get checked again in two weeks...well that really upset me that she didn't understand where I was coming from...

So then I brought up the idea of a home testing kit, since I was really thinking about getting one anyways...that way I could test myself whenever I was feeling a little nervous about it (just for some "piece of mind") Then the nurse told me that the only people that get the home testing kits are people that need to test everyday! I kindof argued with her for a little bit because I know of other people on this forum have testing kits and don't test everyday...so what am I suppose to do? How did everyone else talk to their doctors about getting a home testing kit? I just don't know if that is what my clinic believes or if my nurse is just a little "slow" when it comes to this

Yes, and if you're anything me you are probably getting back to normal with your eating patterns. I think I was being tested weekly or at least every 10 days until I was about 10-12 weeks out. I got yelled at by my cardiologist's RN last week because I hadn't been tested in 6 weeks. I had dropped to 2.4 when I got tested on Monday, so they want me to come back in 2 weeks to get retested.
Is this a cardiologist or your PCP?

 

[Natanni]

Home Monitoring

Home Monitoring

My husband is one week post op today, and I already understand how you feel. We had his first post-op INR drawn yesterday, and it took 3 hours for them to call us back, and when they did, the nurse just said, "Up his coumadin to 5 mg" and I said,"Okay, but I want the INR level" and she was a little irritated. When I found out it was 1.6, I made her ask the doc that it was okay for my husband to be running around so soon post op with that low of an INR since they wouldn't discharge him from the Mayo until he was 1.8. She said, "I am sure he knows" so then I hung up and promptly called his PA-C at the Mayo (I am SUCH a pain.....hehehe) and the PA-C thought maybe Lovenox would be needed but surgeon said not necessary since it is an aortic valve and not mitrial. I am thankful that this local doc did sign all the paperwork for Nathan to get his own INRatio, and will work with us.

Also, in our neck of the woods, 2 local medical supply stores have never heard of home INR monitoring, nor did our doc

Good Luck!

 

[BDMc]

Holy Smokes!

Holy Smokes!

Well gang, this is my second post since dicovering this wonderful resource yesterday! It is rather overwhelming! I had my aortic valve replaced, with a dacron graft to repair an ascending aortic aneurysm 10/26/84. I have a recalled Bjork-Shiley valve. When I had my surgery, I was tested after two or three days, and then one week, two weeks, and every month. For awhile I was so stable that I went every couple of months. I was very naive, and some of my doctors, and nurses have known very little about anticoagulation managegment. A few years ago Beth Israel-Deaconess in Boston started a coumadin clinic. They had three nurses and two finger stick machines. After about two years they stopped using the machines, and now send us to the lab. I have repeatedly said I wished they made machines for home testing, and asked why they stopped using them at the hospital. The nurses wouldn't discuss the machines at all! My experience over the last 10 years has been that there are times when my INR fluctuates greatly according to the lab tests. One time it was so high they wanted to hspitalize me after I'd had a "Fresh Samantha" drink with Ginko in it. This past Moday it was 6.4 with no known dietary changes, or change in dose. I may have inadvertantly had something in food at work that had an effect, but I was also concerned about quality conrol of my warfarin. My mail order pharmacy changes brands all the time, so almost every refill it's different. It seems to me I'd be much better off home testing, as I'd have a better chance of catching the spikes testing more often, and stand a better chance of explaining them! Sorry for the long post! Brian

 

[Karlynn]

I'll think you'll find that most of us here trust the # from the machines rather than a lab draw. You never know how long your sample sits before being tested for one thing. I'm wondering why the clinic went to lab tests? Our hospital lab has gone to machine testing.

Many of us here home test. My INR has been much more stable since home testing. Your frustrations at the medical field's understanding of coumadin is one felt widely here.