15 years self testing and self managing

I started self testing and self managing in 2009 - probably the dark ages for both. I was able to get a Protime meter on eBay, and a doctor friend ordered strips for me (they apparently needed a prescription or had to be ordered by a doctor). I don't recall knowing about - or looking into - the CoaguChek meters (back then, it was the S and XS).

I'm glad to see that, during those years, the acceptance of self testing (and, in many cases, self managing) has broadened - and that self testing is even encouraged in some countries.

I'm sure that I'm nowhere near being a pioneer in this area, but considering the difficulty I had to get a meter and strips in the early days, I may be one of the earlier adopters/managers.

I chose the name Protimenow to help push self testing - getting results NOW instead of having to schlep to a lab and wait a day or two for a doctor to give you results. I wanted to then - and I still do - democratize the process of self testing (affordable meters, affordable supplies, and, if a person can do it, accessible management information).

Protimenow said:

I'm sure that I'm nowhere near being a pioneer in this area, but considering the difficulty I had to get a meter and strips in the early days, I may be one of the earlier adopters/managers.

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you are indeed one of the earlier ones. But when I started doing it in 2012 I noted that Ross and Hank had been at it starting 2001

https://www.valvereplacement.org/threads/error-rates-for-protime-and-coaguchek.588/

its pretty sad that it took 20 years for it to no longer be a complete surprise to medical professionals, but there it is.

Live Long and Prosper

When I had my ablation on Tuesday, a nurse in Prep and Hold at the hospital (which was doing only cardiac stuff) was surprised when I told her that I had my own meter and was self testing.

That link to 2001 was amazing.

Protimenow said:

a nurse in Prep and Hold at the hospital (which was doing only cardiac stuff) was surprised when I told her that I had my own meter and was self testing.

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we are quite the minority (even here on VR until recently)

Protimenow said:

That link to 2001 was amazing.

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I noticed some of the "sticky" notes added by Ross are now no longer sticky (and probably no longer relevant either twenty years later),

The number of self testers seems to be growing - though I'm not sure how rapidly (some doctors seem to be prescribing testing services, but I don't know how many - it may still be a drop in the bucket for warfarin users). Self managers probably ARE a tiny minority -- especially since many of us have to convince prescribers of warfarin that we know what the hell we're doing. (My PCP and cardiologist BOTH know that I can do it. I keep a large quantity of warfarin in reserve in case I have trouble getting it, or I somehow wind up with a doctor who WON'T write a prescription for warfarin).

Before the surgery I had already bought my own cash and a box of tapes, my heart surgeon and my cardiologist were in agreement.In Greece, the public health organization gave the possibility for someone to buy cash with a big discount, and very few patients did it.
From what I understood, the reason was that they didn't trust it, and many doctors didn't recommend it or didn't even know it existed.
Because my heart surgeon understood that I had a lot of knowledge on the subject of INR self-management, he gave my phone number to several of his patients to contact me and learn how they could get the device and how to handle it properly. I also shared my experience with vitamin K intake and nutrition in general to many.
I have helped more than 20 people and because of my job I have also talked to many doctors about self-management etc.
I had also created a group on Facebook and at this moment in Greece the sales of roche have multiplied (I did not receive a commission from roche)
I'm glad that I learned from my problem and was able to help someone, today almost every patient is informed by their cardiologist that they can get an INR measurement kit, as is known Greece is an island country with many remote islands and areas with few inhabitants and difficult access especially in winter.
Imagine the usefulness of the INR device on an island that has a ferry connection once a week or a remote village with 200 residents without a cardiologist or LAB.

Protimenow said:

The number of self testers seems to be growing

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Agreed

Protimenow said:

I keep a large quantity of warfarin in reserve in case I have trouble getting it, or I somehow wind up with a doctor who WON'T write a prescription for warfarin)

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I also like to keep a large reserve of warfarin. I'm ready for the zombie apocalypse.

At Costco, the retail price for warfarin is less than $3/month, so it's super cheap to always keep several months of reserve.

Chuck C said:

I also like to keep a large reserve of warfarin. I'm ready for the zombie apocalypse.

At Costco, the retail price for warfarin is less than $3/month, so it's super cheap to always keep several months of reserve.

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I also have a supply for 10 months, when it is reduced to 8 I buy, the cost is about 2 euros a month .

ATHENS1964 said:

I also have a supply for 10 months,

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We might qualify as Preppers

Chuck C said:

We might qualify as Preppers

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I also have some enoxaparin syringes (levenox-clexan) in case INR <2

My INR is taking a bit longer than expected to get into range - I reduced it to 1.5 on Tuesday (4/2) and it's ONLY 1.9 now. I'm upping my dose by .5, will retest tomorrow (not expecting to see a jump from today, of course, but maybe a bit of a jump from Thursday's dose), and I feel safer dropping a dose slightly if my INR is at the high end of my range than I am if it's at the lower end. Not time for bridging yet -- I'll see what tomorrow's test tells me.

BTW - with my insurance, Warfarin costs zero dollars.

I don't know what I would do without the ability to self test. Thank goodness for Roche! One huge benefit is travel. Just bring my meter, strips, and meds with me and I'm good to go. Awesome!

MaryLM said:

I don't know what I would do without the ability to self test. Thank goodness for Roche! One huge benefit is travel. Just bring my meter, strips, and meds with me and I'm good to go. Awesome!

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Amen sister

At one time, I would have included Coag-Sense to the list - but Roche is IT now.