Antiphospholipid Antibody Syndrome (APS) - SAY NO to Home INR and Finger Stick Machines!!

I’d like to share my own APS story with you.

My mother had APS.

We found out after she had a DVT and actually, she did have multiple miscarriages…but we just chocked that up to “God’s will” – she had the babies she was meant to have – that sort of thing. Not everyone believes, so I don’t want to dwell on that. And she always had migraines too and horrible vertigo at times.

She was put on Coumadin after the DVT and her doctor set her up to get her INR drawn at an anticoagulation clinic. She got her INR drawn there using a finger stick machine and we didn’t think anything of it. It was a quick trip to the clinic every week and that was all. We never had any reason to question the results.

The nurses at the clinic mentioned that she could get the same machine they used there to test her INR at home and the hospital social worker helped her get the approval through Medicare. It would be so much more convenient for her to test at home and since it was safe enough to use at the hospital, then it would be safe enough to use at home!

Right…?

WRONG!!

She had been using the machine for a little over a year to test her INR. Her range was 2.5-3.5 and she usually was within range. We never did comparison draws, we didn’t know we needed to or should have because the hospital never did and it was the same machine as the hospital used.

At the end of August she had said that her calf was achy. We didn’t see anything and since her INR was in range, we didn’t worry about it too much. She had a doctor’s appointment coming up and we decided it could wait until then.

A couple days later, she complained of having shortness of breath and chest pains. We immediately checked her INR and it was 3.1, which was in her range. We decided to take her to the emergency room though because we weren’t sure what was going on.

They took her right back, did an EKG, drew some blood and hooked her up to a heart monitor. The doctor came and said there were some abnormalities on her EKG and that they wanted to do a chest x-ray but didn’t seem too concerned, just said it was a “precaution”.

As we waited she was complaining that it was getting harder to breath and that her chest was really hurting. I was going to get her nurse but her monitor started making all this noise and then it was like all the emergency room doctor shows you see on tv where people are all rushing to the curtained room with carts and my dad and I were shoved out of the room wondering what the hell was going on.

It was probably only minutes, but seemed like time stood still.

The doctor who saw my mother earlier said that they lost her and that he was sorry, but they did everything they could.

My mother died from a Pulmonary Embolism from a DVT in her calf on September 2, 2007. She was 58 years old.

When we got her medical records after her death her INR from the blood draw in the hospital was a 0.9.

It was a 3.1 from her trusted machine just earlier that afternoon.

The strips were new and properly stored, the machine was clean, and the INR finger stick machine reading was WRONG.

And my mother died.

Had I known THEN what I know NOW my mother NEVER EVER would have even gotten finger stick draws at the clinic!! But we never KNEW better. We were told the machine was so convenient and it was the exact same brand as the hospital used. THE SAME MACHINE.

And it was still WRONG. And my mother died.

So now you know why this is important to me and why I am educating people.

Convenience is not worth a life. The machines are wrong for APS patients. Plain and simple.

Even the documents that I have found from the machine manufacturers say they are aren’t accurate for APS patients…and the more I read, the more angry I get about it. If it was your loved one or mother, wouldn’t you feel the same way?

My mother didn’t have to die.

If I prevent ONE person from using these machines, then my work here has been worth it. I can’t get my mom back, but I can make sure that people are AWARE of the inaccuracies. No matter what doctor or group or patient says how wonderful the machine is…is convenience worth a LIFE?

Possibly YOUR life? Think about it.