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Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
Hey Paul1972 - if your hospital is only checking your INR every 12 weeks and doesn't care enough to help you get a meter, they're doing LESS than HELPING you - they're endangering your life. Clearly, whoever is running this program is either a complete (not partial, COMPLETE, idiot) or doesn't give a **** about patients or knows nothing about anticoagulation or mechanical valves, or worse. I'd find another doctor. I'd find another hospital. Perhaps I'd even take this up with a hospital licensing authority or, at least, a hospital administrator.

If they're doing this to you (and thank G-d that you have the sense to have your own meter, to test weekly, and to appropriately manage your INR), there are probably dozens or more patients who don't know about self-testing or INR management. And the hospital probably won't find out about the bad outcomes that they contribute to -- their victims may disappear from the patient pool because they died from stroke, or perhaps major hemorrhaging, and the doctors didn't attribute the deaths or disabilities to criminal INR mismanagement. The hospital's record LOOKS clear - because the cause of patients dropping out hasn't been considered.

---

Years ago, I went to an 'anticoagulation clinic' but was checking my INR at home, weekly. To them, I was 'Mr. Consistent' (because I self-managed), but they moved my testing to every other week , then to every month. I'm not sure if they wanted to move me to every other month. The protocols that they used were outdated and just plain wrong. They also seemed to be written in stone. But these were still less dangerous than the ones at your hospital.

---

It makes me sad and concerned just to read about your hospital's testing schedule and apparent lack of effort to get you a meter.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
Admittedly, Protime has been a potty mouth of late.
Not really (although I'm not sure what 'potty mouth' actually means. If it's referring to things that we do into a toilet, I don't use those words very often - and in normal discourse there are few options, if it's words that refer to sexual activities, I've never done these things in a potty).

Sometimes there are few alternatives.
 

Paul1972

Well-known member
Joined
Jan 4, 2018
Messages
143
Location
England
Hey Paul1972 - if your hospital is only checking your INR every 12 weeks and doesn't care enough to help you get a meter, they're doing LESS than HELPING you - they're endangering your life. Clearly, whoever is running this program is either a complete (not partial, COMPLETE, idiot) or doesn't give a **** about patients or knows nothing about anticoagulation or mechanical valves, or worse. I'd find another doctor. I'd find another hospital. Perhaps I'd even take this up with a hospital licensing authority or, at least, a hospital administrator.

If they're doing this to you (and thank G-d that you have the sense to have your own meter, to test weekly, and to appropriately manage your INR), there are probably dozens or more patients who don't know about self-testing or INR management. And the hospital probably won't find out about the bad outcomes that they contribute to -- their victims may disappear from the patient pool because they died from stroke, or perhaps major hemorrhaging, and the doctors didn't attribute the deaths or disabilities to criminal INR mismanagement. The hospital's record LOOKS clear - because the cause of patients dropping out hasn't been considered.

---

Years ago, I went to an 'anticoagulation clinic' but was checking my INR at home, weekly. To them, I was 'Mr. Consistent' (because I self-managed), but they moved my testing to every other week , then to every month. I'm not sure if they wanted to move me to every other month. The protocols that they used were outdated and just plain wrong. They also seemed to be written in stone. But these were still less dangerous than the ones at your hospital.

---

It makes me sad and concerned just to read about your hospital's testing schedule and apparent lack of effort to get you a meter.
Hi Protimenow , I’m just glad I found this site. The members on this site told me about self testing and I brought my own machine and strips. Having my inr checked just 4 times a year by my clinic and not having my machine would be way to much of a worry for me as my inr does fluctuate though my own fault at times. I suppose they put me at 12 week testing because when I do go I’ve always managed to be in range 😊 I always get a letter 2 days later to say keep on 8.5mg daily, they don’t realise I tinker with my dose(maybe not in the best way sometimes)but as you said they think I’m Mr consistent also which must be why they leave me to go so long.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
My concern it that those bozos may do this to others who may be 'consistent' but not self-testing or self-managing.
 

Agian

Well-known member
Joined
Jun 10, 2013
Messages
2,177
Location
Adelaide, South Australia
Not really (although I'm not sure what 'potty mouth' actually means. If it's referring to things that we do into a toilet, I don't use those words very often - and in normal discourse there are few options, if it's words that refer to sexual activities, I've never done these things in a potty).

Sometimes there are few alternatives.
I was trying to get a smile outta ya. I wasn't being serious. 'Potty mouth' is what they call kids who use naughty words.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
I was trying to get a smile outta ya. I wasn't being serious. 'Potty mouth' is what they call kids who use naughty words.
Sorry. I think we may be on different planets. I smile sometime. I remember smiling once a couple years ago, but I'm not sure why. I guess I'm being too damned serious. (And damn was a potty mouth word 50 years ago - the networks wouldn't allow it).

Maybe (maybe not) I'll lighten up some day. Or, when it comes from you, I'll remember to ease up on my responses. I can be funny, and can tell when a comment is a joke - but without context or verbal cues, it can be rather difficult.
 

leadville

Premium Level User
Joined
Aug 28, 2017
Messages
219
Location
Greater Manchester, England
@Paul1972

Same here Paul with our clinic in Wigan

I self test and dose weekly...

I email in the results and they give me 12 week appointments, i often send incorrect Data
and no matter if i am on an upward on downward trajectory the appointment dates are
too far apart for safety ( IMO )


If you have a good GP they will write you a prescription for the strips it's much cheaper than
buying them.

I add the false data to justify more strips from my GP.

I still purchase extra strips from Roche but there is No VAT .

My clinic are useless and show no interest in proper INR management that's why i feel justified in
using them for my own needs , Machiavellian maybe ?

Take care fella (y)
 

Paul1972

Well-known member
Joined
Jan 4, 2018
Messages
143
Location
England
@Paul1972

Same here Paul with our clinic in Wigan

I self test and dose weekly...

I email in the results and they give me 12 week appointments, i often send incorrect Data
and no matter if i am on an upward on downward trajectory the appointment dates are
too far apart for safety ( IMO )


If you have a good GP they will write you a prescription for the strips it's much cheaper than
buying them.

I add the false data to justify more strips from my GP.

I still purchase extra strips from Roche but there is No VAT .

My clinic are useless and show no interest in proper INR management that's why i feel justified in
using them for my own needs , Machiavellian maybe ?

Take care fella (y)
Hi Leadville,good to hear from you hope you well👍. I’ve asked quite a few gps here in my local town and they say they don’t have self testing programs in this area. At the moment I just do a reading on my machine about 30min before the lab draw and compare them , my machine is always +.2/.3 above the lab.I do wonder what they would say if I was out of range one day. They did put my name down for a self testing trial but it has never got up and running. My wife gets her thyroid medication which she depends upon for free , so I think my warfarin should also be free as I depend on that also. I know I shouldn’t put a price on managing my own health ,but What about the people who can’t afford an extra £700 to pay for them . Managing mechanical valves at 12 week intervals is not in my eyes good enough. Take Care mate 👍
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,496
Location
California
12 week intervals are absolutely wrong. I've gone through this many times, and you already know why it's wrong.

Having a clinic that doesn't care about regularly monitoring your INR, or a doctor who doesn't follow through on getting you assistance with regular monitoring is wrong. Again, I'm restating the obvious.

Here in the U.S. generic warfarin is only about 10 cents (maybe slightly more) per pill. My prescription coverage can get me 90 for $1.20 - when this plan stops, I don't expect to pay much more than a dime a pill.

BUT - the cost should be covered, if your wife's program pays for thyroid medications.

I'm interested to read that giving a clinic a WRONG result (presumably well out of range) gets no reaction.

It's good to see that we (many of us) take responsibility for our own INR management - you can't really trust the labs and, in some cases, can't trust the doctors or clinics to get it right.

Now, I'm carefully stepping off my rickety old soapbox.

O
O
O
O
P
S
Now THAT hurt...(I'm expecting to see some very nice bruises)
 
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