Home testing for Protimes/ INR

Looking around to see if anyone knows anything regarding the home testing method for those of us that have to PT/INR testing done.
For the past 11 yrs. I have had to have a PT/INR test done for my clotting disorder. I may have mentioned this before that I was diagnosed with Protein Deficiency Syndrome in 1998. This condition is a lot like Sickle Cell anemia in the sense that blood cells clump together without being triggered to by the body's defends system.
This condition is most often found when there has been a grand tramau that has occurred such as Cardiac Arrest. Such is my case. I have needed to have my PT's/INR levels preformed more often to detect unusual clotting.
Before Christmas last year I found a re-owned company that offers home testing monitors for patients like myself. I presented this information to my PPA and ask if I could begin doing home testing. I got no as an immediate answer.
Wednesday I had to go in for yet another finger prick for my PT/INR and again asked about home testing. I was told "no" once again
What? UGH? NO? OKay, that is not what I expected to hear. And to make matter even worse the reasons that I was given for not "being"allowed to do home testing made no sense.
First of all I am an educated woman that worked in healthcare for 18 yrs. I preformed accu-checks on hundreds of patients to montior their blood sugar levels. You mean I can't prick my own finger and get a drop of blood and put it on a test strip and slid it into the monitor? What's so hard about that?
Then the next reason was because my PT/INR levels need to be stable. Give me a break.....
My PT/INR levels have not been stable for 11yrs, so when do "we" expect this to happen? NEVER!
I got another explanation stating that "we" don't have anyway to know if their monior is accurate. Well, they will send information to your office and give you all the deals of this method.
Again, I got a "no" for home testing. OK...now we're gonna fight. I'm not letting this go. Because my doctor wants me to be "safe" and the only way for me to be safe is to get up, shower, get dressed, drive 20 minutes to his office, wait another 30-45 minutes just so his nurse can prick my finger. Right....
Here's the thing about being safe. If I decide that I don't want to get up and do all that I have to do to get to his office just to get my finger pricked, I want go. So exactly how is my doctor keeping me safe? This whole situation has just pissed me off. I'm not stupid. I know how to do this and I also have investigated this company and the use of home monitoring devices for patients like myself.
Question is, am I being unreasonable about wanting to do home testing The doctor is never left out of this equation. This sytem is tied to his office directly. It will work, it does for all of those diabetics that prick their own finger. And I don't have to give myself insulin.
What do you ladies think? Am I just crazy ? Prick me now or prick me later........

CJ

By kareno
Posted January 24, 2009 at 12:40 pm
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CJ,
Did you check with your insurance co. about doing the home method? Maybe this is why your doctor doesn't want you to do it. It does sound like it would make your life a lot easier. Maybe a call to the insurance for verification would help. Kareno

By terodac
Posted January 24, 2009 at 12:45 pm
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HELLO! I hear your pain, I also take warafrin 10mg a day. My INR has to stay between 3.0 and 3.5 (well that is where they want it) I feel much better around 2.7. I will be gettin my own home tester ProTime! I have found a web page I am a member of called heart valve replacement. Even if you haven't had the surgery they have a section there about INR and blood thinner. They are all very well versed in this area. Most of them do home testing. Most doctors do not want you to home test. More $$ for them, but it is easy to do the only thing is that the machines are kind of expensive, The web page is http://www.valvereplacement.com/forums/index.php
I think it would help you, this INR stuff is really pretty easy to figure out. I have had AHV surgery for my aortic valve. I have to be on this stufff the rest of my life! So I have researched it a lot! Good Luck!

By CJA
Posted January 24, 2009 at 12:49 pm
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Kareno,

Good day. A a matter of fact I did contact the company that premotes the home device yesterday. The representive from the company was very helpful. She is going to contact my PPA and give him more information about this situation.
If I know my doctor , he is not very likely to make changes like this. But I'm up for the battle because I really want to start testing from home.
After 11yrs. of this blood work almost every week, I'm ready to make some changes. We'll see what happns.
I know that there are some doctors in my area that do use this method, but I really hate to change my PPA just because of this.
Thanks for your reply back.

Hugs,
CJ

By CJA
Posted January 24, 2009 at 12:53 pm
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Terodac,

I've been on thinners for 11yrs now, so I'm not new to this game at all. I hope my PPA will let me start doing the home testing. So tired of going every week to his office. MY range is between 2-3.
Rarely am I at this same level every week, but then again this is nothing new.
Thanks for the information. I appreciate it so much.
Have a blessed weekend.

CJ

By Rudywg
Posted January 24, 2009 at 1:17 pm
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When I read your post I am very thankful for my cardiac team. I am a congenital heart patient. First surgery at 25 patched a hole in my heart. Second surgery came at age 46 after 22 years of bad blood flow. Now I have 2 mechanical heart valves and pacemaker to get electrical impulse through all the scar tissue.

After my second surgery in 1999, I got a call from my surgeon because he picked me to do home testing (in addition to testing at a clinic) to see how reliable home machine's were. Because they picked me, my machine was free. Sometimes I even brought my machine to the clinic to do the two tests at the same time to compare results.
I found that the results were very close. However, I had to calibrate my machine and while I appreciated the added results, I never had 100% confidence in those results.

BUT, that was 10 years ago! Last year I got a new machine which my insurance paid for, because I met my deductible after bunion surgery. I LOVE my new machine. It is more reliable, user friendly and it's my new BFF! I travel a lot as a speaker and I have even taken my machine to Europe with a converter, so I never have to guess.

I still use the clinic in addition to my machine when I can because the test strips are more expensive than what I have to pay for a clinic test.

My husband has been a Type I Diabetic for 40 years. He tells of the days when he had to go to the doctor once a week for a blood sugar test and then he had to GUESS what he should eat to try to "maintain" his blood sugars. That is so antiquated in comparison to today, it's laughable. Now he's on an insulin pump and he tests himself 8 times a DAY and he is off the charts healthy because of that kind of control. When self-testing became available for diabetics, doctors were also hesitant to trust their patients. They didn't want to give up the control and probably income, too.

I would love to see the day when a heart patient on blood thinners could home test themselves every day so we no longer have to hope that the dose of coumadin we are taking is what we need. It really ticks me off to think there are docs out there that would deprive us of information we need to maintain our health and prevent potentially devastating consequences.

I would continue in your quest. The only additional point is -- I have heard there may be a new form of blood thinner coming which does not have the same challenges as warfarin. Two years ago I had been told 2009 was a possible release date. You might want to research this as well.

My machine is by Raytel (now Phillips Remote Cardiac Services).

Good luck!
PS I lived in Dunwoody for 7 years. . . great place.
Best, Rudy

By Rudywg
Posted January 24, 2009 at 1:20 pm
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Just so you don't feel bad. . . my "goal INR" is 3.5. Once when I actually got that result my nurse said, "well now we have to figure out how to keep you here." I told her "Well, then you better shoot me now." Life affects INRs!"

Best, Rudy

By CJA
Posted January 24, 2009 at 8:09 pm
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Rudy,

So right about life. I have never had a stable INR for very long. The professionals alway seem to think it's something I've done to make it go whacky. Heck fire all I did was wake up, right?

I'm located in Flowery Branch, Ga. in Hall Co. home of the great Atlanta, Falcons-hoo-rah!! Right now I'm working with The Quality Assurance Services b/c they are connected to my health insurance for this device.

Guess we'll see what happens this week. I'm due to go in Monday for another INR level. Think I'll just have to say something to my doc, again.

Wish me luck... Hugs,
CJ

By mamaellie
Posted January 25, 2009 at 1:07 am
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I do my INR at home. Contact Phillips, previously Raytell. It is a g-dsend. The reason your doctor does not want you to do it at home is because you will be one less person getting it done with him/her and that means less $. AHA !!!!!!!!!!!!!!!!!!!!!!!!
My former cardio, at whose office I got tested weekly, told me my insurance would not cover my doing the test from home. So untrue.
I contacted Raytel, now Phillips. They worked on it and I have had it for about 4 months. What a time saver and a money saver.
Yes Virginia, you can do your INR at home.
Ellen

By mamaellie
Posted January 25, 2009 at 8:54 pm
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I want to add to my previous comments. At my doc's office, I was charged a co-pay for each test. At $25.00 a crack that was $100.00 - $150.00 a month, depending if my INR #'s were unstable.
When I called BCBS to learn if there was a less expensive way to get the testing done they informed me I should not be paying a co-pay. That co-pays were only for office visits NOT lab work. I called the business office of my cardio. They refused to change their billing or refund me what BCBS said were overpayments.
BCBS suggested I go to the hospital lab. My cost thru the hospital was 90 cents per test. Yes, 90 cents out of pocket !!!!!!!!!!!!!!!!!!!! Still there was the time waiting and the travel to a from the hosptal. The home testing is 100% covered.

Contact Phillips.

By CJA
Posted January 25, 2009 at 10:41 pm
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We have United HealthCare so I don't pay out of pocket for each trip to check my INR. But having to get up, get ready and go to the office for this 5 minute test seems ridiculous to me.
I'll see what happens Monday when I go in for this week's INR.
It should be very interesting. I'm not giving up even if I have to change doctors.
Have a great week all,
Hugs,
CJ

By Kithko
Posted March 12, 2009 at 9:11 pm
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I work for a Cardiology office, we just had an inservice with Philips today. It sounds wonderful and your doctor can bill for teaching regarding the monitor and for every fourth INR level, so he isn't losing money :) I would strongly recommend he call Philips and they would be more than happy to come do an inservice...I think it would change his mind. We are anxious to get patient's signed up for this.

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