Rant about Medical Establishment

[Protimenow]

Forgive me if I rant a little about the medical establishment. Yesterday, I had an exam by a neurological specialist, more than seven months after my TIA. I told two different doctors that I self-test. The both came up with the line about getting my meter 'calibrated.' I told them that the strips come with quality control built in, so calibration isn't necessary. I told them that my ProTime meter, with its five channel strips, is supposed to be nearly lab accurate. They couldn't believe that a mere mortal like myself could do self-testing. (I didn't have divine powers like these morons who made it through medical school).

They insisted that I get a primary physician, implying that I'm too damned stupid to take my own INR, or to handle the dosing. WHAT'S SO DAMNED HARD ABOUT IT? If I was being seen by an anticoagulation clinic (like I have been since my TIA), they would have been very comfortable with testing me once a month, and would have COMPLETELY MISSED my drop in INR during the two weeks that led up to my TIA. In my experience, these so-called clinics - and the doctors who prescribe dosage changes - are practically useless. One doctor, seeing that my INR on a blood sample that was mishandled by their lab, was a 2.4, prescribed an extra 1/2 dose ONE TIME each week. This 'specialist' didn't even realize that she couldn't make a 'weekly' change on only one day.

I left the clinic, where the neuro interns were so concerned about my ability to do an INR self-test, feeling somewhat insulted by their attitude.



So -- my fellow self-testers - do you agree with these oh-so-intelligent doctors and believe that you are 'too damned stupid' to run an accurate INR test? Do you agree that you're 'too damned stupid' to make minor dose adjustments if necessary to keep your INR in range?

 

[lance]

That's a challenge you'll have to solve yourself.
This is a statement--not a brag--I've been managing my spouse's INR for three years without incident and with full knowledge of our PCP. His range 2-3. Once it was 1.9 that's the only "out of range" test he's had during that time.

 

[Protimenow]

I've been managing since 2009. The challenge is working with the medical establishment to occasionally convince them that, too often than anyone would like to admit, they're misinformed about how warfarin works and how to handle dosing, and that some of us whose lives are on the line may actually know about how to manage it.

One of the things that it is good to do occasionally - although the meter manufacturers don't suggest it - is to check your meter against a lab. In the case of my InRatio, it's fairly consistently higher than lab results. As long as you know how your meter results compare to lab results, you're probably okay. (FWIW - many of the anticoagulation clinics use the same meters that self-testers do - they sometimes talk about calibration, but the manufacturers claim that calibration isn't necessary. I wonder if they also subtract a certain amount from their meter's results to estimate the 'true' approximate INR)

 

[lance]

It is of little interest to me what is said or done in the labs. They are irrelevant unless I'm forced to deal with them when hospitalized and without choice in the matter.
Were you managing your own INR when you had those TIAs?

 

[pellicle]

Hi

Forgive me if I rant a little about the medical establishment.

not at all ... do indulge yourself.

They couldn't believe that a mere mortal like myself could do self-testing. (I didn't have divine powers like these morons who made it through medical school).

perhaps because they know they failed their lab subjects at Uni too ...

WHAT'S SO DAMNED HARD ABOUT IT? If I was being seen by an anticoagulation clinic (like I have been

there are locations for error, such as how you obtain your blood droplet, how much it was exposed to air ... stuff like that. I'm not a specialist but I can see locations for introduction of error.

In my experience, these so-called clinics - and the doctors who prescribe dosage changes - are practically useless.

they serve the purpose of providing a service to those who are inconfident to do it themselves for one thing. The elderly the infirm ...

So -- my fellow self-testers - do you agree with these oh-so-intelligent doctors and believe that you are 'too damned stupid' to run an accurate INR test?

mostly I shut up and let them say what they want to and go do what I wanted to anyway.

 

[Jkm7]

You did present yourself in their offices and presumably were there for their opionions...... No?
Why go to them if you don't want to hear what they have to say?
I know this is rather direct but I don't know a 'softer' way to ask and you do seem to be soliciting comment.
These do not seem to be a good match for you. Perhaps you'd be happier with some other doctors?

 

[Protimenow]

A few comments:

I presented to the neurology clinic, post TIA, because the appointment was scheduled. I didn't ask for their opinion about anticoagulation, nor did I expect it. I just wanted to be cleared (I was) of any need to revisit the neurology clinic.

I fully agree that there are many people who are incapable of self-testing. There are also, probably, some who believe that they can self-test, but don't follow the protocols. (For example, the InRatio and CoaguChek XS require the FIRST drop of blood, within fifteen seconds of making the incision; the ProTime meter says to wipe that first drop away and to test with subsequent blood -- not everyone knows the timing and procedures).

Those who are incapable of self-testing obviously shouldn't -- but the head in the clouds medical establishment shouldn't treat ALL OF US as if we are incompetent to accurately test our blood.

I've had some bad dosing advice from doctors - and there's a thread on the forum about really bad advice being given by professionals.

Looking back on the time before my TIA, I have to reluctantly admit that I ignored an INR that was below range (under 2.5) on the meter. I was saving strips, and should, in retrospect, have increased my warfarin dose to be sure that I was in range. (OTOH -- I didn't realize that my meter was consistently reporting that my INR was .3 - .6 higher than the lab results. Had I known this, probably from a blood test, I would have increased my dose when my INR hit the bottom of my range).

One thing that self-testers should be aware of (even if they report their INRs to services like Philips or Alere) is that their meters may report INRs that are higher than lab values. If a 2.5 on an InRatio is a 2.1 in a lab (and, in my case, a 2.6 on my InRatio was a 1.7 at the lab), this should be a known issue and the tester should be able to respond appropriately.

Personally, if I get a value below 2.6 from my InRatio, I often test with a 5 channel ProTime cuvette on a ProTime meter. (The ProTime is similar to the meters used at medical facilities - even INSIDE OPERATING ROOMS - and the 5 channel is supposed to be extremely accurate).

My rant was, I think, about the medical establishment's arrogant assumption that they a) know more than ANY patient about anticoagulation, b) the patients are pretty stupid, and c) whatever they say must be correct.

I don't think I'll back down quite as much the next time some smartass interns try to advise me on issues they know very little about.

 

[pellicle]

I sence some agro in your reply.

Clearly you are confident to do it your self. None the less I answered your questions and it seems you acknowledge my reasons by repeating the points.

Being aggressive or argumentative towards medical personnel is counter productive, while I share your frustration sometimes its better to bend with the wind and spring back when it has passed

 

[dick0236]

Being aggressive or argumentative towards medical personnel is counter productive, while I share your frustration sometimes its better to bend with the wind and spring back when it has passed

I fully agree. I have used the INR system since its inception and have found both good and not so good INR management by "professionals".......thankfully, I have found most to be pretty good. The few "bad" ones I "fire" without discussion.

 

[Protimenow]

I don't know what 'agro' is. I bent to these morons, merely pointing out that my meters have quality control built into the strips. I didn't get into a major debate with these 'experts.'

I was neither aggressive nor argumentative -- my rant was a reconsideration of my willingness to let these uninformed ****s continue to spout this stuff to others.

The current clinical arrangement that I'm in doesn't let me 'fire' a professional but, as noted, I've 'graduated' (their word, not mine) out of the neuro eval section.

 

[pellicle]

I don't know what 'agro' is.

Sorry about that, perhaps its Australian vernacular.

From the word aggressive, it is usually applied to someone who is displaying signs of anger or aggression

I bent to these morons,

And it was the choice of words that indicated to me anger or aggression.

I was neither aggressive nor argumentative

To them I guess. I understand your sense of frustration, but my point was to try not to have these situations cause frustration. It is simply not worth it.

The current clinical arrangement that I'm in doesn't let me 'fire' a professional but, as noted, I've 'graduated' (their word, not mine) out of the neuro eval section.

Difficult,perhaps negotiation is a possibility?

 

[Protimenow]

To me Agro is short for agricultural - certainly not aggressive.

I was neither aggressive nor argumentative with these 'doctors,' though you correctly detected my frustration. The real frustration came a few hours later, when I wrote my rant. (And, by titling it 'Rant', I think I was clear about my frustration with these self-proclaimed experts on INR management.

 

[Jkm7]

I don't know what 'agro' is. I bent to these morons, merely pointing out that my meters have quality control built into the strips. I didn't get into a major debate with these 'experts.'

I was neither aggressive nor argumentative -- my rant was a reconsideration of my willingness to let these uninformed ****s continue to spout this stuff to others.

The current clinical arrangement that I'm in doesn't let me 'fire' a professional but, as noted, I've 'graduated' (their word, not mine) out of the neuro eval section.

Seeing you are so unhappy with these doctors, look for new ones.

(I don't understand what your comment 'clinical arrangement - doesn't let me fire a professional....... what does that mean? )

If I was as frustrated and distrusting of any professional as you seem to be, I would be seeking replacements.

 

[pellicle]

To me Agro is short for agricultural -

It is truly remarkable how vernacular varies from country to country. Even within the English speaking world.

Here for instance agriculture is commonly abbreviated to just ag

If you google sesame street and agro you will find another variation on agro

 

[pellicle]

Hi

I was neither aggressive nor argumentative with these 'doctors,'

good ...

though you correctly detected my frustration. The real frustration came a few hours later, when I wrote my rant. (And, by titling it 'Rant', I think I was clear about my frustration with these self-proclaimed experts on INR management.

I'm glad you admitted that bit because it was clear from your post you were a little agro, and that is fine as we {or at least I am} are comfortable to listen and then inject anything which may be of value.


BTW that's my version of agro not the agricultural industry or the sesame street agro character

 

[Protimenow]

Very simply, the clinic that I went to (and won't be returning to) was in a teaching hospital. I didn't have the option of choosing who would be seeing me.

It's not like I was able to select the doctors who I would be seeing.

Soon, I hope, I'll be in a position where I can select my own medical team.

 

[Jkm7]

Mass General is one of the finest teaching hospitals in U.S. and I certainly have choice of which doctors to see. When in hospital for surgery/care, interns and residents are present and part of the care team but the attending is the doctor of our choice. Most of the finest hospitals in the U.S. are teaching hospitals including Cleveland Clinic, John Hopkins, Brigham and Womens's.......

I don't know what you are talking about.
Sorry.

 

[yotphix]

To Protimenow: Sorry you had to put up with that. On the other hand, you must admit that from their limited perspective, and with their limited experience, it would look as though you had tried and failed to successfully self test and self dose. With concern for your continued health being one of their motivations they would obviously be inclined to suggest that maybe there is another way for you. In truth, they'd be better to keep their mouth's shut if they don't know what they're talking about, but it's hard for me to fault them too much for not knowing the specifics of some very specialized test equipment that isn't relevant to their speciality, or that normal ACT clinic protocols would not have protected you. Just as they would probably advise their friend the cardiac surgeon to hire and electrician to wire his new hobby room, they advised you to have your ACT managed by a professional.
As to the the simple fact that most of the so called professionals dealing with ACT haven't really got the first idea about it, nothing new here. Most of us are well aware, and that's what led us to self testing in the first place.
On the bright side, congratulations on your 'graduation'!
To Pellicle: Just so you know, although PTnow is, if I recall, a southern California guy and doesn't know it, Agro is as common as sand in SoCal, among surfers, skaters, boarders, BMXers and the very large crowd who live to burn gas (I think that's petrol to you?) in bikes and cars. I work with a lot of Aussies, Kiwis, Brits and Saffers and we're always trying to sort out what the heck people mean. (Put that in the Eskie would you mate? Or, Just Hoover that up would you? Soon as I get these on the Barbie.) I'm with you on the way to deal with arrogance and ignorance. Smile, shake hands and then go back to whatever it is makes you happy, leaving them to pat themselves on the back for a job well done.

 

[pellicle]

To Pellicle: among surfers, skaters, boarders, BMXers and the very large crowd who live to burn gas (I think that's

grew up in "Surfers Paradise" 2km from the beach, been a bike nut since 9

http://home.people.net.au/~cjeastwd/parade.htm

(shh don't tell people I ride a scooter atm)

Put that in the Eskie would you mate? Or, Just Hoover that up would you? Soon as I get these on the Barbie.

first trip to Canada we didn't need no esky in Alberta mate

;-)

just as long as Barbie is cute ....

 

[pellicle]

a brief divergence if you will indulge me

who live to burn gas (I think that's petrol to you?)

at the local servo and a fella is struggling with the "LPG GAS" outlet. Goes into the shop and asks the guy behind the counter <thickAmericanAccant>say, do you have GAS here? I want gas</thickAmericanAccant>

fella behind the counter says "yeah, sure mate, that's the right pump for gas" (grinning)

guy goes back out and struggles with the pump. Sees me and asks "hey buddy, can I get GAS from this pump" ... I said "sure ya can mate"

I'm guessing he wanted unleaded ;-)