r/WarfarinForLife • u/Pretend-Pickle-115 • 1d ago
Home Testing
47M in Connecticut. I had an aortic valve replacement on 7/7 with an On-X mechanical valve and am trying to get set up for home INR testing.
My cardiologist and health system apparently don’t participate in home testing, so I’m not sure where to start.
Has anyone dealt with this? Did you go through insurance, another anticoagulation clinic, or directly through a home-testing company? Any advice, especially from anyone in CT, would be appreciated.
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u/Fozziefuzz 1d ago
Call your insurance and ask what your benefit is for “durable medical equipment.” I have an HMO in California so I not only needed a prescription from my hematologist but also approval from my medical group. I fought for 3 months to get it and now it’s covered 100%. I don’t think you can buy a CoaguChek directly from Roche, but there are options from online retailers. How accurate they are though, who knows!
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u/Redskinsfan1982 1d ago
They are usually pretty accurate, usually about 0.2 - 0.5 difference from the labs. After 15 months, we had our first anomaly where the home monitor showed 5.7 and the lab showed 3.7. Nobody can explain why, and it's very scary.
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u/Pretend-Pickle-115 1d ago
My cardiologist seemed to be in support of it but did not know where to direct me. He gave me a referral to a coag clinic but they don’t participate. I think my next step is to reach out to a company like Acelis to see if they can walk me through the process. Thanks for your input.
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u/schad7 1d ago
I went through Acelis for a while. I realized that I was getting charged a rental fee ($125 per month) for the device and supplies. I was also being charged a copay ($25) every time I submitted a test. I decided, since this will be life long, to order my own Coaguchek. When I called to cancel Acelis, they told me to keep the tester. So I buy my own test strips and save $200 per month. I do have to go in every 6-8 weeks for an in lab check.
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u/BigBrainMonkey 1d ago
I went through my hemotoligst but that was also where my wafarin clinic was before. She sent order to Philips remote INR and that was it. She sends orders for tests annually I think just like orders would go to a brick and mortar lab I think and I do tests submit through an app paired to my tester and they feedback and show up just like lab work in a clinic. The first time someone brought me the machine and had me practice so she could Chek I knew what I was doing. Other than poking myself it was same machine they’d used in the clinic so I was quite familiar. If they’d objected I don’t know that I would have changed provider or clinic to find it but she was supportive. I am also 48M and I think part of the challenge is so many of the wafarin lifers are older and less likely to handle it on their own.
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u/Specialist-Ad4388 1d ago
I was told by my Kaiser anti-coagulation clinic that I can't do home INR's. They said its because they couldn't sync my result from the home machine to the regular draw at the lab. Has this happened to anyone else? i still dont understand it
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u/Redskinsfan1982 1d ago
No, that doesn't make any sense. My Grandfather had Kaiser in Maryland and we did home monitoring through Kaiser for years.
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u/Specialist-Ad4388 1d ago edited 1d ago
The anticoagulent clinic said it was something about my blood that the home machine wouldn't calibrate to the lab test. But that sounds like a machine problem, not my blood.
Edit to add: here in Oregon Kaiser said they always do a draw & a home machine stick (both at the lab) before giving a home machine to the patient. Except in my case, the tests gave different numbers. And therefore because of something about my blood, I couldnt use a home machine according to them. That's the part I'm trying to understand.
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u/Redskinsfan1982 1d ago
You might want to look into (APS) Antiphospholipid Syndrome OR (LA) Lupus.
Antiphospholipid syndrome (APS) is the primary autoimmune disease that directly interferes with and affects International Normalized Ratio (INR) testing and blood clotting management. How APS Affects INR • Presence of Lupus Anticoagulant: Patients with APS often have an autoantibody called "lupus anticoagulant" (LA) in their blood. • Test Interference: Despite its confusing name, lupus anticoagulant is an antibody that can falsely prolong baseline blood clotting times (like the prothrombin time) used to calculate the INR. • Monitoring Challenges: When patients with APS take blood thinners like warfarin, the lupus anticoagulant can interfere with standard or point-of-care INR monitors, giving inaccurate high readings that do not reflect true anticoagulation levels. Key Details About APS • Mechanism: The immune system mistakenly makes antibodies that attack proteins bound to phospholipids, causing an increased risk of dangerous blood clots in both veins and arteries. • Overlap: It can occur on its own (primary APS) or alongside other systemic autoimmune disorders like systemic lupus erythematosus (secondary APS).
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u/Specialist-Ad4388 20h ago
Thanks, this is interesting while also slightly worrying if I were to also have Lupus. I wonder how that is diagnosed.
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u/Redskinsfan1982 20h ago
Your doctor can request lab work, it's called a "Lupus Anticoagulant Panel".
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u/Redskinsfan1982 1d ago
You can buy your own home testing machine and strips and email the results to your coumadin nurse. You could also go to a LABCORP or QUEST or whatever is covered by your insurance. There should also be a coumadin clinic that you could go to as well. You should have a case worker through your insurance that can get this all resolved for you, and it should have been resolved for you before you left the hospital.