Tuesday, September 11, 2007

Todd Had a TIA Using a Finger Stick Machine in his Lab at the Hospital

Written by Todd's wife, Heidi in the APS Friends & Support Forum

Or for those people who are thinking about getting one...

PERFECT EXAMPLE of how they just DO NOT work with APS patients....

Todd's been getting LAB INR MACHINE draws for months. We DID comparisons...a few in a row...all was fine...they matched, I was ok...a bit skeptical, but ok with them.

Well, Todd hasn't been feeling well. :fever: for a week or so now... Went to get an INR drawn...usual way, finger stick in the lab. INR came back 3.9

A little high for him (his range is 3-3.5) but still ok...didn't explain why he felt like dog doo...but ok, stranger things have happened, this is APS fgs. :dunno:

Anyhow...he starts getting right side numbness WITH the Migraine that he had. :head:

Goes into the ER... :ambulance:

Well folks...they did a VEIN draw...Guess what his INR was???? 1.5!!!! :hissy:

ONE POINT FIVE????? omg :duh:

That is a HUGE difference...HUGE!!!!! :woah:

So he had a TIA everyone. :exhaust:

I'll tell you this. I am going to be on the phone :phone: tomorrow MAKING SURE that was his LAST INR draw with the finger stick. it's back to good old fashioned vein draws for Mr. Todd. :mad:

He hasn't had a TIA since APRIL!!! :banghead:

So, please anyone...tell me again WHY you want a machine?


Here's a thread to read also... http://www.apsforum.com/forum25/6543.html
(registration required)

You're putting your life into a machine that is KNOWN to be wrong with APS patients...think TWICE...THREE times...FOUR times and Just say NO! :thumbsdown::thumbsdown::thumbsdown:

Original Post: http://www.apsforum.com/forum25/6943.html (registration required)

And in his own words:

Here is the Jist of the ordeal I went through. I was feeling tingiling and numbness on my right side and a migraine the day before i went into the clinic just so you know. I went to have my blood drawn at the aticoagulation clinic yesterday. And my inr was a 3.6 from a finger prick.:thumbsdown::thumbsdown::thumbsdown::thumbsdown: Than I talked to my hematoligists nurse practioner right after that and she couldn't figure out what it was from. She thought it could have been from the migraine. So I left there and went to another hospital because if Heidi were to come to see me I didn't want her to have to come down to that hospital because you have to drive down dark roads to get to the hospital. So I went to the one close to the house. They got me in. Did and INR draw and it was 1.5. Thats a big change from 3.6 don't ya think. They gave me compazine and 3 tylenol for the numbneess and tingiling and migraine and it went away. And they did a head ct and ruled a TIA. They didn't want me to leave but I was able to finagle my way out by saying I have lovenox at home. So to people who want to get Inr machines for the house. Don't get them look what it did to me.:thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown::thumbsdown:

5 comments:

Tina said...

He was lucky he went to the ER and had a vein draw. Had he left the dose where it was he would have been in even more trouble in a few days.

They DO have warnings on the machines and these patients ignore them because a few people and doctors in the UK push these machines.

You have to sign a waiver of liability with all of the companies when you purchase one. They KNOW they are off. It is on their websites, in their literature. The reps will tell you. I was soo brainwashed at the time from some people that I ignored it and spent $2000 USD on that machine (insurance refused to pay for it) and almost killed myself using it.

I have said it over and over and proven it with company data and still get told I am crazy.

Those machines are off. I don't give a care what these other people say. Those machines aren't accurate. I know of people who have had strokes on them - continued to use them only to have another stroke and do this over and over until they were placed on LMWH. How dumb to continue to use the machine?!

They are off. You never knew when it was on target or off target. (Well, you could guess on your symptoms or on how you were feeling but that too is dangerous!) Matter of fact there is now a chance of 30% +/- accepted standard of deviation. Well my life is worth more than 30%.

Here where my comparisons. Now there are times that I thought the machine was right and wrote down INR didn't match symptoms but didn't go in because a recent comparison was right....but now knowing better...chances are it wasn't right. Some of those were the difference of doing something and not. As fast as it is not working right it is...and when do I know when it isn't. And I supposedly have no antibodies. Hummm....And look the first 10 INRs matched. So I couldn't return the machine.

Date Home INR Clinic INR
2/27/03 2.20 2.30
3/5/03 3.50 3.30
3/9/03 6.70 5.10
3/12/03 2.60 2.80
3/14/03 2.90 3.40
3/18/03 3.00 3.20
3/25/03 2.80 3.00
3/31/03 3.30 3.20
4/7/03 3.30 3.20
4/14/03 2.70 2.90
4/21/03 2.70 2.70
4/27/03 4.20 3.70
5/17/03 3.40 3.40
6/9/03 5.00 4.20
6/20/03 6.70 5.40
8/15/03 2.20 2.10
11/3/03 3.00 2.60
11/10/03 5.90 6.30
1/15/04 3.00 2.70
3/1/04 3.40 3.30
7/5/04 2.10 2.10
7/7/04 7.80 2.30
7/9/04 7.00 4.80
7/15/04 6.30 4.20
7/26/04 5.70 4.30
8/18/04 7.10 4.10
8/25/04 6.10 3.80
9/1/04 6.20 4.10
9/17/04 8.00+ 5.60
2/23/06 1.70 1.90
2/27/06 4.00 3.50

Anonymous said...

Thank you for posting this!!! The word on these machines needs to get out there to APS patients. If they still chose to get a machine, at least they can make an EDUCATED decision to do so!

Heidi

Anonymous said...

Yes, the word does.

I do know the APSFA helped get the company of the machine that Todd's doctor used to change the wording of their information, disclaimers and the like for both of the machines they made. They also made it publicly available of which it wasn't before thanks to the APSFA. They have a professional one and home use one.

They were first realizing in the past year that they were having more and more problems with patients with APS.

I believe the APSFA has all of the product literature for these machines on their page. The literature clearly states the problems with APS patients.

I am not sure why people question it and continue to believe they are "safe" to use. I guess they have to have problem first and then they will get it - hopefully.

I certainly hope they reported this incident to the FDA.

Anonymous said...

"In regards to the "charities" that represent APS pushing for a
new machine.... well, I don't know what HSF is doing as I am here in the US.

I am a member there, but I haven't been keeping up with what all they are doing. Maybe someone else knows if they are working in that area.

The APSFA (I was a member) is very against any kind of "finger pricks." I doubt very seriously that they will be working with the companies to make one for us. They have insisted that the companies put a warning on their inserts that it will not work accurately with APS and could give a false high reading. A couple of them already had these, but another added the
warning."

This has been shared with me. And I feel this needs to be clarified. One, the articles published are published by the APSFA's medical advisors and are fully cited. A similar article was also published by this same APS researcher for another organization. So are these people questioning what an APS researcher, an MD, has to say?

There should be nothing wrong with the APSFA making the APS public aware that that there are problems with these machines. That is what advocacy is called. That is part of awareness.

The last I knew the other organization was promoting the use of the Roche machine and had done so in Italy.

It is my impression that APSFA does not intend on pushing or demanding a company to fix their machines or make a special one to meet a the needs of a small part of their customer base. No one can expect these companies to spend millions of dollars to make one work for a rare disease whose antibodies come and go. They made the machine for the majority and APS patients are the minority. Get over it.

I do not feel there was anything wrong for the APSFA to ask this company to add these disclaimers to this machine. They advocated for the APS patient. That is a part of their mission. It is informing the APS public that there are problems (after all it was reported to the FDA by the patient and the facility using the machine) and helping the company cover its bumm for legal suits down the road.

The public awareness about the use of these machines in APS patients is working. More and more people are speaking out about bad experiences. Guess what it got you talking about it and hopefully will get other people to do their homework before buying one blindly or based on a single support forum saying they work splendidly.

There is nothing wrong with an informed consumer and going in forewarned that their may be problems and those problems may crop up when you least expect it.

Anonymous said...

Thank you for sharing this personal experience and your opinion.

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My goal is to educate APS patients on long term coumadin or warfarin about the possible dangers of using, and relying on Home (finger stick) INR machines to test their INR. Nothing more, nothing less. **I am not affiliated with any APS group, but a member of many. I am just trying to educate people about these machines.**
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