U.S. Valvers - Home Monitoring

[Jkm7]

I've wondered about this since I first started reading this section of VR.com.

If you did not know about VR.com and read here, do you think you would have 'discovered' there was such a thing available/possible as home testing INR?

I was only on coumadin briefly so no one would have thought to mention home testing to me but at no time has any health care provider (no doctor, no nurse, no tech, coumadin manager - no one) ever mentioned some people home tested.

For Valvers living in U.S., did any health care professional first mention it to you or did you bring up the subject?

I can't imagine how I would ever have learned of this option were it not for VR.com.

Makes me wonder how many thousands of Americans are fed up with lab testing but don't know there is another way.

Makes me sad and upset for these unknown/faceless people. I'd hate if it were me.

 

[olefin]

For Valvers living in U.S., did any health care professional first mention it to you or did you bring up the subject?

No, never heard about home testing by word of mouth from any professional.

Soon after I had AVR in 1991 we started receiving a news letter from the Texas Heart Institute. Wife read an article about a home INR monitor so she wrote for info. We didn't have a computer back then.

I was retired, we travel most of the time in a motorhome and it wasn't convenient getting tested at different hospitals all over the country. But the monitor was pretty expensive and I was too tight to purchase one. I didn't have insurance.

Last year Ross posted on a thread I had about AVR on another forum and we chatted. Since I had got old enough for Medicare he informed me that Medicare had started paying for home testing back in 2002. He also told me about this great forum.

This past January I asked my Cardiologist about home testing. He didn't know much about it but didn't have a problem with me trying it.

Makes me wonder how many thousands of Americans are fed up with lab testing but don't know there is another way.

I was never 'fed up' with home testing. Needles never bothered me and I'm only 10 minutes to my Cardiologist office.

For me.... home testing will allow me to know my INR every week. Also, I was already tweaking my doctors recommended dose for I didn't always agree with his recommendation.

I had know about home testing for 17 years but didn't know it had become FREE.

 

[Karlynn]

I was already home testing for several months before I found VR. I had been going to the lab at our local hospital since my replacement. They started using the home monitor machines. I would get asked if I wanted a "vein draw" or a "finger stick test" every time I went. After about 3 months of getting the finger stick, I thought there must be people using these at home, it's so darned simple. It's just like diabetics testing their blood sugar. So I did a search on the web. Found that Yes, it was available for home testing. I printed out the material, showed it to my cardio. She had not heard of it being done at home but thought why not. My insurance approved it and voila!! I've been home testing for almost 7 years. And now my cardio has several other people home testing. She finds that her older patients would rather go to the lab. They don't trust doing it themselves.

 

[Marty]

My cardiologist ordered a Coaguchek at my first post-op visit at two weeks.. It was very uncommon then realy just getting started. I'm grateful he was up on ACT and after two months I was self dosing in addition to self testing.

 

[dtread]

I have HMO (Kaiser Permanente Mid-Atlantic), and they had me going to the lab for a vein stick a couple of times a week for the first few weeks, then later on once a week, then twice a month. The results were relayed to the Kaiser Coumadin Clinic, who called me on the phone and adjusted my dose here and there. Nobody ever mentioned home monitoring. Then they scheduled me for a Coumadin orientation session; i.e., approximately 45 minutes to an hour. I was the only patient and there were 3 or 4 Kaiser personnel there. They said that usually they had 4 - 6 patients. They went over all the stuff about keeping your INR in range, watching certain foods like spinach, etc. When they got to the question and answer phase I inquired about home monitoring and was told that home monitoring was not as accurate, and that was about it. They also said that Kaiser would not pay for it.

I cannot recall anyone from the hospital or from Kaiser ever bringing up home testing. I am pretty sure that I was the one that discovered it, researched it, and then inquired about it.

I inquired with my Cardiologist about getting a home monitor and he also indicated that Kaiser would not pay for it, and he would not sign the prescription for it. He wanted to know how they were calibrated, and how their accuracy compared, etc. So I went to my Primary Care Physician, and he signed a prescription for me. I could have gone to war with Kaiser to get them to pay for the tester, and I think I would have had a good chance of winning, but as it turns out I took the easy way out.

I bought my tester on eBay, and the seller did not even require a prescription. The price I got on eBay was probably less than I would have paid if I had gone to war with Kaiser, since at best Kaiser probably would have only paid for about half of it.

I think the reason the HMOs are fighting home testing is for several reasons:
1. Fear of loss of jobs by some of their people (e.g., those in the Coumadin Clinics)
2. Ignorance of the quality/accuracy of the home testers
3. Fear of a loss of control when folks home test versus Coumadin Clinic testing/monitoring
4. Would cost a fortune to supply home testers for everyone that they have on Coumadin

I've completely divorced myself from the Kaiser Coumadin Clinic. I'm totally on my own. Works for me. I am what they call a "non-compliant patient". I send my Cardiologist an email once a year asking for a prescription renewal for 5 mg Warfarin tabs. But he has no idea whether this is the right prescription or not as I am doing all the monitoring.

I think it will take a few more years before the INR home testers are accepted just like the diabetes testers. Which is in fact a very similar type of tester. Of course, in the U.S. once you hit 65 you can get Medicare to pay for it.

 

[Eva]

In my case, my surgeon told me about it at the very first meeting when I showed reluctance to have mechanical valve as going to the labs and to keep adjusting the dose would add an extra burden/stress on me...his words were: "if you stay within the range I give to you, you are safe...for conveniece, you can buy a home machine" being surprised he reassured me "Yes, it is a small machine, just like diabetes home monitoring machines, and you can carry it with you when you are away from home!"

when I met another surgeon outside CA and mentioned this machine, she told me it was withdrawn from the market!! OH! How well was she informed.

Of course, my VR angels I chatted with reconfirmed the easy use of these machines and that they are still around, despite a few were recalled!

 

[Blanche]

Al got his first monitor because I was a pain in the posterior

Al got his first monitor because I was a pain in the posterior

In 2001, when Albert returned home from a long hospital stay, I realized that I had to know more about the Coumadin he was taking for the last 10 years, and the strokes that he had that left him severely debilitated.

All we knew about anticoagulation is that you take a pill every day and go to the lab once a month.

After Al's strokes,the cardiologist handling Al's care had him testing once a week. His range was 3.0 to 4.0. The problem arose when other doctors (18 in the practice) would get Al's result and make changes in his dose. Al had an INR of 3.6 one time and one of the partners said to skip one day and cut the next two doses in half. Then another time, we had the same problem in the other direction. Al's INR was 2.9 and he was told to increase to 15.0.

Frankly, my husband's personal Pit Bull raised so much heck with the practice doctors and the receptionists and assistants and anyone else who would listen, it was decided that Al and his Pit Bull should visit AL's cardiologist for a personal assessment...no duh

TO make a long story even longer, when we conferenced with Al's cardio, he said "Every doctor here has different ways of dealing with anticoagulation." He continued, "I'm just damned surprised that we haven't killed anyone yet!!!"

I simply asked the doctor to help me become proficient in anticoagulation...."Tell me what I need to know and tell me how I find out."
Doctor was very helpful. He discussed a whole lot of information with us and he made his assistant available to us for assistance. He also agreed that he would be the only one to deal with AL's test results.

Then he made the magic statement!!!!! He said that there were anticoagulation monitors for home use...and some cardiologists were using them in their offices. He said he would help me get one, but I would have to figure out how to do it.....

I got together with my dear friend and we made a plan to get on the net and make an extensive search on topics related to anticoagulation, testing, etc.
It was in one of those searches that I came across QAS. I called them and Woody from QAS became my new best friend. It was Woody who gave me the addy for VR.com.

We paid for the first monitor, the ProTIme Anticoagulation System and all supplies. We had other fights to fight along the way, but it was worth it.

If you are trying to get a monitor, myadvice would be NEVER GIVE UP.

Regards,
Blanche (A/K/A "Pit Bull")

 

[Christina]

I just got tired of doctors managing my Coumadin.

I just got tired of doctors managing my Coumadin.

My surgery was in 8/2000 and the first few weeks was managed by the Cardiologist office and from then on was managed by my regular practitioner. I went to the lab 2-3 times a week for 6 months and got stuck in my arm. Not a good thing for your veins and after a while they'd have to go somewhere else to stick you. I was aware of that danger. I didn't know much about Coumadin nor maneging my INR in the beginning, but let me tell you I had to learn fast because the doctor I had at that time would have caused me to have a stroke or worse. I was already online and had been a member of VR.com since July 2000 and through the site I became aware of home monitoring. That doctor did sign a prescription for a Protime monitor but when I got it he didn't trust it and wanted me to go the lab anyways. Well, that's not why I bought the machine. I didn't want to go to the lab anymore and wanted to do it at home. I fired the doctor and got another doctor who was okay with the Protime machine and me doing the tests and dosaging myself. QAS tried to help me to get the insurance company to pay for one but they refused so I had to pay out of pocket to get one, but it was well worth it. I still have the same machine and it is still working well. I refurbish/upgrade my Protime machine every few years and take it with me on vacation. I trust it completely. I don't call my (new) doctor with any results nor do I ask him much because just from talking with him about Coumadin, when I do see him for something (he always asks me what my INR was the last time I tested) I can tell he hasn't got a clue. Not his fault, they just haven't learned this in med school.

 

[Marty]

I have HMO (Kaiser Permanente Mid-Atlantic), and they had me going to the lab for a vein stick a couple of times a week for the first few weeks, then later on once a week, then twice a month. The results were relayed to the Kaiser Coumadin Clinic, who called me on the phone and adjusted my dose here and there. Nobody ever mentioned home monitoring. Then they scheduled me for a Coumadin orientation session; i.e., approximately 45 minutes to an hour. I was the only patient and there were 3 or 4 Kaiser personnel there. They said that usually they had 4 - 6 patients. They went over all the stuff about keeping your INR in range, watching certain foods like spinach, etc. When they got to the question and answer phase I inquired about home monitoring and was told that home monitoring was not as accurate, and that was about it. They also said that Kaiser would not pay for it.

I cannot recall anyone from the hospital or from Kaiser ever bringing up home testing. I am pretty sure that I was the one that discovered it, researched it, and then inquired about it.

I inquired with my Cardiologist about getting a home monitor and he also indicated that Kaiser would not pay for it, and he would not sign the prescription for it. He wanted to know how they were calibrated, and how their accuracy compared, etc. So I went to my Primary Care Physician, and he signed a prescription for me. I could have gone to war with Kaiser to get them to pay for the tester, and I think I would have had a good chance of winning, but as it turns out I took the easy way out.

I bought my tester on eBay, and the seller did not even require a prescription. The price I got on eBay was probably less than I would have paid if I had gone to war with Kaiser, since at best Kaiser probably would have only paid for about half of it.

I think the reason the HMOs are fighting home testing is for several reasons:
1. Fear of loss of jobs by some of their people (e.g., those in the Coumadin Clinics)
2. Ignorance of the quality/accuracy of the home testers
3. Fear of a loss of control when folks home test versus Coumadin Clinic testing/monitoring
4. Would cost a fortune to supply home testers for everyone that they have on Coumadin

I've completely divorced myself from the Kaiser Coumadin Clinic. I'm totally on my own. Works for me. I am what they call a "non-compliant patient". I send my Cardiologist an email once a year asking for a prescription renewal for 5 mg Warfarin tabs. But he has no idea whether this is the right prescription or not as I am doing all the monitoring.

I think it will take a few more years before the INR home testers are accepted just like the diabetes testers. Which is in fact a very similar type of tester. Of course, in the U.S. once you hit 65 you can get Medicare to pay for it.

Very interesting, Dan. I work as a radiologist at Kaiser Falls Church. We keep our eye on warfarin patients because a lot of our biopsy patients are on it. Our ACT clinic is run very well by PhD pharmacists and I have no trouble working with them. However when I try to discuss home testing with them I get the same malarkey you did. With great authority the pharmacists and the chief laboratory tech inform me that all home monitors are inaccurate and that patients are incapable of safely self dosing. I no longer argue with them but I self test and self dose like you do. I have to believe they persist in this misinformation because of the four reasons you stated in your excellent post.

 

[MandyMV]

Ryan was in the hospital for over two months so I had time to do research on the net while he was sleeping. I had found several articles on home testing and the benefits to stroke prevention. As Ryan had already had a stroke from his endocarditis I wanted to make sure we did everything to avoid that again. When I asked our cardio case worker in the hospital about it she was actually very enthusiastic about it and gave us the paperwork to get signed and sent to insurance. Unfortunately we had to wait 6 months until the insurance would approve it but it was worth the wait. It would take 24-48 hours for his lab results to get to the coumadin clinic as our lab is not near the clinic and now we have results in minutes. We are the only one at our clinic using the home tester but not because they are against it but more because their patients are worried about doing it themselves. We are sort of a case study for them.

 

[briansmom]

I learned about it here and in fact I think that I taught some of my son's docs about it. His hospital now requires home testing for their LVAD (left ventricular assist device, basically an artificial heart) patients.

 

[Philip B]

Recommendation

Recommendation

Both my surgeon and cardiologist told me I'd be a good candidate for home monitoring before I had surgery. My cardio doc moved me into home monitoring soon after my surgery after seeing evidence of the incompetent lab technicians who were sticking me up to six times to get a blood draw.

-Philip

 

[catwoman]

The medical writer at the newspaper where I work told me about INR testers when she was doing research for an article on home medical tests. I discovered valvereplacement.com while doing research on home-testing.

In the last couple of weeks, I goggled CLIA-waived (which is what INRatio, CoaguChek and ProTime testers are) and found some articles that do explain where opponents to home-testing are coming from -- not that I agree or accept their stances.
It's amazing that many medical practices have embraced POC testers while others are still in the Dark Ages. I'm sure the latter are run by people who believe the world is flat.