Purchasing the system

[Sherry Houck]

Hi, All,
I've tried to convince my cardiologist to allow me to purchase one of the machines, but he won't allow it, saying that he's never had a patient monitor his/her own INR/Protime and that it would be a huge liability to him. I'm 38 yrs. old, have been on Coumadin for five years now, and can pretty much tell the nurse how to adjust my own dose. (She supports my decision, by the way.)Do any of you have any suggestions as to how to persuade a reluctant doctor? Sherry

[Christina]

Hi Sherry,

My old doctor did give me the prescription for the Protime 5 months after surgery, but never fully supported me or trusted me. He also never was any help so I would get reimbursed by my insurance for the machine. He gave me lots of hassles and anxiety every week. My INR was often so low but he kept instructing me to take different dosages most days. He thought an INR of 1.7 was just fine just to give you an example. I disagreed!
I finally fired him after I had had enough and found another doctor after two months doing it alone. My new doctor is fully supportive of what I am doing and trusts me. I had to demonstrate to the office nurses that I was capable of getting a blood sample and do the test and get a result.
I could do it on my own now if I would choose to, but I like this doctor and I need his support, because I don't really want to do this on my own, just in case something goes wrong.
I would tell you to find another doctor who is experienced in Coumadin management.
The Protime is absolutely wonderful. I can't say enough great things about it.
It gives me freedom from the lab and it saves my veins.

Wishing you the best.

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 20mg a day.

[hensylee]

Sherry - why don't you take a poll here from at home users, print them out and take to your dr. If that doesn't work, fire him!

[JimL]

Three months after AVR, I'm still going to the hospital once a week where they have one of the machines for checking the INR; it sure beats filling test tubes! I still go once a week because my former cardiologist prescribed amiodarone, but neglected to tell me that it doubled the effectiveness of coumadin; that has bounced me all over the scale, and it is just now settling down.
In looking over the hospital bills, it appears to cost about $40 whether I fill a tube with blood or give a drop to the little machine. If my blood is tested once a week for a year, that's over $2000. What does one of the machines cost? Somewhere I heard $1500. That should make purchasing one of the machines a real deal for the insurance company.
Managing your own coumadin levels is easy, except when your medication changes. I took charge of my own coumadin levels within a couple weeks of surgery when a doctor tried to prescribe too much; he wanted me at an INR of 2.5, but prescribed enough coumadin to send me nearly to 4.0.

Jim

[QAS]

Hello,

This is a problem that a few patients have, but I think that I might have a suggestion for you. Did you ever consider getting the prescription and certificate of necessity from your primary care physician? Some insurance companies even require this, but most do not. Please email me at lvisnich@hometestmed.com or call 800-298-4515 ext. 2865 and I would be glad to assist you. Thanks,

Lance

[Woody]

Sherry, tell your Doctor that you do not want to monitor yourself,you only want to test yourself & you want him to monitor you. Tell the Dr. that you will call in or bring in the results of your testing. If the Dr. doesn't trust you to call your results & feels you might be doing your own therapy then tell him to write the Rx. for a 2 month supply instead of on-going or life time refills. This way if you don't report to him, he will not update your Rx and we will not be able to send you more cuvettes. This approach has worked with some Doctors.

[ArleneM]

Hi Sherry,

Although I am 35 yrs old...I have had my heart condition since I was 9 yrs. old due to Rheumatic Fever. To make a long story as short as I can..I've had 6 open heart surgeries..the first 5 were all prostethic (animal) valves (mitral & aortic)...I also had gone thru 3 heart pacemaker replacements. My 6th open heart surgery was performed on Dec.28th, 2001 hours after to my sad surprise..I had suffered more than a dozen Mini-Strokes which bought upon to me seizures. I was placed into a Semi-Coma for 5 days in order to give the dr.'s some time to find out what bought this strokes upon to me and to prevent me from having anymore strokes which they did not know how what kinda damage it initially has done to already meaning...(paralyzed, speech impairment, etc.). The doctors later found that tiny particles from my old valves traveled up to my brain therefore causing the strokes. Meanwhile had my heart pacemaker replace on Jan.17th, 2002 which I feel made me feel very energetic. Anyhow, I am presently on Coumadin and would like to know if you experienced hair loss in the beginning or still do? I experienced alot of hair loss while being in the hospital and didn't get worried about hair loss until I read the possible side effects of taking Coumadin and researching the internet. My hair loss has drastically tapered down...I have a few tiny patches here and there (not noticable) due to the fact that I had thick hair to begin with. I was told by the Pharmacist that from what she learned and experienced...hair loss is only temporary until my body gets adjusted to the medication. I am presently on 1 mg and taking 3 of these pills at night. I also don't kow how these blood tests determines the amount of Coumadin I take. Please help me. I feel very fustrated.

Much Aloha for your reply

[JimL]

Welcome Arlene!
I too take 3 mg of Coumadin a day, but I am not aware of any side effects. In fact, I have felt very good taking coumadin, since it is a naturally occurring substance and -- I thought -- has no side effects other than the one we want, namely thinner blood to prevent clots and strokes.
There are many who understand much more about this than I do, but perhaps I can provide a simple explanation. They measure your blood to see how long it takes to clot, which is the PT number; since there are various PT tests, the result is always "translated" into the INR number, which is supposed to be perhaps 3.0 -- that varies depending on how thin your blood needs to be; the higher the number, the thinner the blood.
You've come to a good website with many good people who understand our concerns.

[Linavon1]

Sherry, you should explain to your doctor that the costs associated with continually coming in to get protimes are very high. It takes up your time, his staff time and sometimes even his time. I agree that if you have been on Coumadin for five years, I have for 18 now, you are capable of handling your own tests. My doctors office is all for this system, for cerain people, not everybody. I would take my own test, call them with the results and discuss any changes necessary. I would be very cautious of any physician that wouldn't want their patient to have control of their own bodies and decisions.

[allodwick]

See the new post I made under Coumadin --- A day at the Coumadin Lab.

[allodwick]

Someone wrote the following to me through my website, "...Protime system. It's been working beautifully for keeping my mother's INR more stable. Unfortunately, the company that distributed the machine and kits says that their supplier is discontinuing selling them. Do you know of any other sources? We could have them mailed." A follow-up said that they were getting them from Quest Diagnostics in New Jersey. I e-mailed Lance Visnich at QA about this but did not get a reply. Does anyone know anything about this?

[Zipper]

That sure seems wrong, doesn't it..I thought they'd eventually become as available as the home testing for diabetics. It doesn't make sense to me that people are more able to monitor their own glucose but not their level for clotting! Hmmm.. I'm curious, too!

Joan/zipper

[allodwick]

A sales rep called me the other day and said that Johnson & Johnson is marketing one now. However, that is all I know, since he did not call back when I answered his voice mail.

[QAS]

Hello everyone,

Q.A. Serivices, INC. is the only company in the United States that can sell the ProTime System to coumadin patients. Sometimes, as I said in my email to Al, a patient accidently buys a ProTime Monitor from a distributor that dosn't know that this is a prescription item. If this occurs, which it does every so often, we try to work with the patient to switch out their monitor. I can tell you that the ProTime is our strongest item, and isn't going anywhere. If anyone has any questions, call QAS, as we are the one who handles patients for ITC. Sorry if any confusion, and please contact us if you have questions.


Lance

[allodwick]

Excellent. I hoped that was the answer.