Self-testing vs. conventional testing

[Perrster]

I thought this Halloween Day would be fitting to post in support of all the "vampire bats" who take care of those who don't self-test.

It appears to me that the majority of people who bounce around with their INR's seem to be self-testers. I give you credit for being trail blazers, so to speak, and be the ones who "experiment" on yourselves.

While I was interested in a self-test machine at one time (I quit appealing due to insurance failures) I am now actually happier that I don't have such a unit at my disposal. I think I'd go crazy trying to hit perfection all the time! That just would not happen and I sure would hate the thought of purposely making myself bleed so darn often!? Knock on wood...I have not been out of safe range for more than a year. Sure, I've been close to the high or low end, but it's been nothing to worry about and cause me to test any more frequently than necessary.

I'm satisfied to test once every 4-6 weeks as approved by my Cardiologist. If I continued to worry every few days or weeks what the heck my INR might be, I'd change careers and become a Phlebotomist.

I think there are few people who take Coumadin that are not aware of it's effects and side-effects. We all got the standard-issue booklet about the drug. Those who don't heed the information are simply going to be in for trouble.

Do you find it odd that we don't see point-by-point details from people who have been on Coumadin for many years. I plan to become one of those people and this will likely be my last post about it.

Take care.

 

[LUVMyBirman]

Hi Perry,

Actually, in my case......self testing was the best thing that ever happened to me.

I had the Coumadin nurse from h _ _L. Every time I would sneeze, or the wind would blow.... she was messing around with my dose. Some of you old timers may recall all the problems I was having for a good two years with my levels all over the place. Wonder why? LOL.

Then, one day my good friend Marty told me about the Coaguchek. So....to make a long story short, I went to my doctor and asked him to prescribe. He had a real good thing going on there in his Coumadin clinic. Changed his patents doses. 2-3 times a week. The clinic was always packed. Also, real interesting to see the same faces. I made some good friends sitting there multiple days out of the week.

I learned more about the medication and home testing. Switched MD's and within a month I was on a smooth ride. Everyone will have an occasional spike or decline no matter the testing method. Remember one thing, the more you tweak it, the more you will bounce! With that said, I have been on the same dose for the past two years. Using my Coaguchek and self regulating. Give or take adjustments when taking other meds or having too much fun on vacation.

 

[JimL]

Excellent idea, Perry! "I thought this Halloween Day would be fitting to post in support of all the "vampire bats" who take care of those who don't self-test."
My "vampire bats" are Jackie and Virginia, and they do a fine job of taking my blood, one drop at a time. They both have a very good understanding of how coumadin works and how to regulate it.
Self-testing may be the way to go, but as long as I have such capable "vampire bats" to take my blood, much of the motivation for getting my own machine is gone.

 

[Christina]

Hi Perry,

I agree with Gina 100%. I am thankful beyond words that I am in charge of my own testing, and not have to rely on a lab. Mistakes are made, and I remember people dying in Pensylvania because of mistakes made at a lab. There are posts from last year regarding this incident.
Like Gina said, everyone will have a spike or decline now and then, and we all know that Coumadin interferes with many things. especially fun at reunions. LOL!! (Joni 6.2)
Perry, it is silly to make a big deal out of having to prick your finger once a week in order to obtain a blood sample. Simply not a big deal and it won't hurt, I promise!
I had to pay for my own unit but found it well worth the expense. When it comes to my health, especially being on Coumadin for the rest of my life, I think I can't be too careful! I would never accept going to the lab only every 4-6 weeks. Too many things can happen in that amount of time.
In the beginning before I had my own unit, I honestly had the doctor from H--L. (read my posts from before August 2001)
Every week he had me at the lab up to 3 times. He kept changing my dosage and my INR was all over the place. Mostly down below 2! Very scary, and I was a nervous wreck because of this.
I did persuade this doctor from H--L to prescribe me the Protime, but than he gave me such a hard time with my home testing. I had to fire him! He was just awful!
In the mean time I learned more about how Coumadin, foods, OTC meds effect me personally and continued home testing. I got another MD August 2001 and am still with him. I am the ONLY patient who self tests. I test once a week (call him every two weeks) and am mostly within range. He wants me to stay under 5. I have been as high as 5.4. I rather be on the high side than low, and my doctor agrees with that. You can fix a bleed he says. A clot can be fatal! And I've already had a clot once, and don't ever want to do that again.


Christina
AVR's 8/7/00 & 8/18/00
Tucson, AZ


"Life is not measured by the number of breaths we take, but by the moments that take our breath away".

 

[RobThatsMe]

Hi Perry,

I think you just have a "thing" for cute nurses! hehehehe...

Hard to face the reality that with home testing you wont be seeing them as often.

It is very addicting and "Nurse Withdrawal" can be a very painful experience.

A serious side note. Eliminating the needle sticks sure saves the veins from scarring. I guess that eventually, when the veins in your arms are all scarred over, they will look for other places to stick you.. Hmmmmm.... Like between the toes.. OUCH!

I was so relieved to get my home testing unit and save my arms! The nurses were already having a hard time sticking me due to scar tissue buildup on the veins. Finger sticks are the way to go!

Happy sticking...

Rob

Rob

 

[Gnusgal]

For me, the reason I want my ProTime (which arrives today!!!) is because of time. I have a very limited amount of time in which I am out of work and the lab is actually open. I have to rush away from work every Friday just to make it in time. And that is the ONLY day of the week that I can make it in time. So when things go all over the place and my card wants me to test on another day, I have to take off from work early. Which I am not happy about. I love my "lab lady" and will probably continue to see her from time to time, but I'll also be glad that I don't have to wait for the lab to call my doctor, then my doctor to call me before I know what my INR is. There have been a few times, with it being the weekend and all, that I didn't get my results for three days, which to me seems pointless.

Also, Rob's point about scar tissue building up on the veins is another factor for me. My lab does not do a finger stick, because it is not a coumadin specific lab. They don't have a finger stick tester. I COULD go to my EP office, but they are an hour away from where I live and I definately wouldn't be able to get there before they closed.

I don't plan to use my ProTime to stress over things. I plan to use it so I can STOP stressing over making it to the lab on time....

 

[Perrster]

I must be a Zombie!

I must be a Zombie!

Rob, you dawg!

I didn't stop to think that I could very well be under Countess-Nurse-Sharon's spell!

Aaaarrrggghhh!!

 

[LUVMyBirman]

"A serious side note. Eliminating the needle sticks sure saves the veins from scarring. I guess that eventually, when the veins in your arms are all scarred over, they will look for other places to stick you.."

Hi Rob,


Your not kidding. I have tiny tiny veins. Had a good one. Though, after my prolonged hospital stay......which was 3+ years ago it's still calcified!

No options other than to draw off the top of the hand. . They will go for your heals if they can't get ya, I don't know how......but understand there is a way. Yikes~!!!!!!!

 

[ILoVeNY25]

Perry, I'm on my second appeal for the Protime unit and I know how frustrating it is and I can totally understand why you gave up. But I think it's great that you've been in range and only have to go every 4-6 weeks to the "vampires". I've been on a see-saw and my INR has not been stable since my surgery. I see the VAMPIRE every single week. I only have 1 good vein left. No veins in my right arm and they can't get anything from my hands. So everyweek it's the same vein. I know about the foot stick...OUCH!
Well, However anyone gets they're INR checked, I wish you the best of luck being stable!

 

[Nancy]

Joe has been going to the blood lab for 25 years, sometimes every month, and sometimes every week. He has one "best" arm because caths from years ago, stretched the veins in his one arm. The lab never has a problem drawing blood from his arm, and they seen to always go to or near the same spot.

So I wouldn't worry about running out of good veins.

 

[Blanche]

Yes, but

Yes, but

Perry:
I understand your point and see where you are coming from. I did follow your lack of progress in getting your own machine. But, we all all different and must act in accordance with the trade-offs that we are willing to deal with. I agree with Gina, Christina, and Rob, not because they were three of the people who guided and counseled us when we had problems getting our doctor to accept the machine, but because they, like us, have circumstances and experiences that make the monitor important to them.

For 10 years, one month, and three days, my husband visited the lab every four weeks, or more often, as ordered by his cardiologist. He had no problems, and, as a person who does not complain about much, he had no complaints. Our life was great. He had retired and we were beginning to enjoy time together and planning for the retirement that we had waited for for quite some time. Our dreams were shattered when Albert collapsed at the corner restaurant while having lunch with his friends. He had a severe TIA. He remained unconscious for two hours. When he woke, he was disoriented, but soom returned to normal. Then the next day he had a CVA (that's a full-blown stroke). The doctors warned me that a CVA could follow the TIA.

Three weeks before he collapsed, Albert tested at the lab and had an INR of 3.8--a little high. He was told to continue his regular dose of coumadin and return in 4 weeks. When he was admitted to hospital, his INR was 1.7. There was no internal bleeding found. The doctors could not account for the low INR of 1.7 then, and nearly 2 years later, they still can not account for the low INR. But, a cardiologist, neurologist, neurosurgeon, and an internist all agree that his stroke was probably caused by what they term as "A coumadin failure." Al threw a blood clot that reached his brain. It certainly changed his life and what touches him, as his wife of 40 years, touches me too.

If Albert had a monitor and was involved in self testing in November/December 200, the severe drop in his INR would have been caught. He would not have spent 26 days in two hospitals over Christmas and New Years. He would not have been hospitalized twice more in the next two years for TIAS (before he got the machine) and for internal bleeding.

I tell you this not to say you are wrong and I am right. We are both right. The point is that people must make informed decisions based on their own experience and available information, and on the amount of risk they perceive and are willing to accept. I will say this, if someone is considering the acquisition of a monitor and self-testing, I hope they will consider both your experiences and ours. It is an individual decision. I'm glad you are comfortable with yours.
With the kindest regards,
Blanche

 

[Christina]

Hi Blanche,

I feel bad for you and your husband and what happened. As we can tell from your husbands case, many things can go wrong with INR in a short period of time and at times it has nothing to do with what you do or don't do.
Many of you know I had two AVR's within 11 days IN 2000. The second SURGERY was because of a too low INR (1.4) and I threw a blood clot that had formed underneath the new valve.
I WAS LUCKY IT DIDN'T MOVE PEOPLE!
I knew right from the start that I couldn't go to the lab for the rest of my life and have them stick me in the arm every time. After 5-6 months and going to the lab 1-3 times a week, I was told I had already build up a lot of scar tissue, and that they would have to go to other places to stick me in the near future. Since I only have two arms I was wondering what the next place would be, and they said: the ankles or the top of the hands! That wasn't very comforting.
I believe self testing can safe your life. If I would've had the Protime during the beginning after my first surgery I would've been in charge of MY HEALTH and not have to be dependent on the cardio's office return my call for more Lovenox. I would have known my INR at all times and my second surgery could have been avoided.
I want you all to talk to Joann (John & Joann). I met her in Las Vegas at the reunion. She's been on Coumadin for more than 30 years. She's had problems that you might want her to tell you about. Coumadin is nothing to fool around with and get cocky about. This is serious business!

Be safe please!

Christina
AVR's 8/7/00 & 8/18/00
Tucson, AZ

 

[LUVMyBirman]

Hi Blanche,

I am sorry very sorry to hear about your husbands experience.

It is concerning that some health care professionals are relaxed, and others are real tight.It would be great to have an in-between.

As we all know, INR's can easily swing....even without any changes in climate, diet and activity. And in some, very very rapidly. I found that if my INR is too high.... holding for just one day. I am in the 1.5 - 1.8 range. I can't tell you how many times that little unit saved me from having a potential event. I still to this day, test once a week. I feel it is important, with either method to test a minimum of twice a month. Too many things can happen in-between.

God Bless

 

[Gail in Ca]

My inr has been in range for many months now and I have been self testing once a week since about 6 mos after my surgery. Even if I hadn't gotten my own machine, the clinic uses a coaguchek on the coumadin patients and the nurse does the sticking. They must feel that it is as accurate as the venal or they wouldn't have gone with the machine.
Ask your doc about them getting the pro coaguchek or protime like many of us have. See what he or she says about it. Puncturing the veins for life would be torture for me.
Gail

 

[Rain]

You're lucky, Mr. Perryman.

You're lucky, Mr. Perryman.

Perry,

I think some people?s INR fluctuates more easily than others? Even though you may be a more ?consistent? person than I am... If I did everything you do, exactly the same... I bet you my INR would be fluctuating and yours wouldn?t. We?re just not all the same.

Like Gina, I have fought many rounds with my INR. It wasn?t fluctuating because of bad advice on dosing... it was simple things... like the dog sleeping in the flower bed! Too much lettuce, not enough beer, missed a couple exercise classes, the sun didn?t shine... stuff I cannot always control has an effect on my INR. I?ve learned to keep it all fairly balanced... but it certainly helps being able to check it with my protime machine when I feel something is not right.

If I didn?t already have a protime machine, I would go to some pretty extreme measures to get one. It?s helped me keep a grasp on life as I knew it before the heart surgery interrupted it.

Rain

 

[Zipper]

Hey, Rain

Hey, Rain

Yep,I agree.....CONSISTANCY...does not exist..LOL! We try ...but...geez....what did I eat last week anyway? I have said..and will repeat now...home testing allows me to know if I can have that Ceasar Salad or best skip it....I like to test right before the weekend...OK party time...or not...ugh....Salad/wine...whatever...I can monitor myself better on a weekly basis than on a monthly basis. Too much time and inconsistancy thruout the month for me anyway!

Zip *~*