Any idea why ACT is so mismanaged
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Mike
Well-known member
I'm guessing: percentages
I'm guessing: percentages
Diana here. I've Type 1 diabetes for 45 years and have been through the medical mill. Since 95% of the diabetics in the US are Type 2 (and the only thing Type 1 and Type 2 share is elevated blood glucose levels---approach, treatment and expectations are quite different)---most medical people are in the dark about how to provide "care" for me.
Since you dear folks on rat poison (my beloved included) are in SUCH a minority, I expect you get about the same number of clueless health care providers. Not an excuse (a total rant is available here!)---just a possible reason.
I'm guessing: percentages
Diana here. I've Type 1 diabetes for 45 years and have been through the medical mill. Since 95% of the diabetics in the US are Type 2 (and the only thing Type 1 and Type 2 share is elevated blood glucose levels---approach, treatment and expectations are quite different)---most medical people are in the dark about how to provide "care" for me.
Since you dear folks on rat poison (my beloved included) are in SUCH a minority, I expect you get about the same number of clueless health care providers. Not an excuse (a total rant is available here!)---just a possible reason.
G
geebee
I started writing that I think the medical profession fears bleeding too much. However, that doesn't fully pan out when I remember all the incomplete information given out about green vegies (and other foods) causing the INR to go too low. I know they fear bleeding but they then caution about foods that "might" cause the INR to go too low and thus cause clotting. Granted the high Vit. K. foods can cause trouble if ingested in large quantities (on rare occasions) but, as we all know, when consumed regularly, are merely factored in to our doses.
I believe it is mostly because, apparently, very few studies have been done about "real" situations in the "real" world. They are still following antiquated information put out by the drug companies (and a few other sources as well, I am sure). They also react too quickly to high INRs and tell people to drop their doses which cause the yo-yo effect to start.
Why more studies have not been done is beyond me. Or, perhaps, recent studies have been done that are also contrary to what the member of this site have found to be true, and the information out there is still incorrect.
I am going to go ahead and post this reply but, in reading it over, I come to the conclusions that the answer might simply be, "Who knows for sure" or lack of time/interest in more education?
I believe it is mostly because, apparently, very few studies have been done about "real" situations in the "real" world. They are still following antiquated information put out by the drug companies (and a few other sources as well, I am sure). They also react too quickly to high INRs and tell people to drop their doses which cause the yo-yo effect to start.
Why more studies have not been done is beyond me. Or, perhaps, recent studies have been done that are also contrary to what the member of this site have found to be true, and the information out there is still incorrect.
I am going to go ahead and post this reply but, in reading it over, I come to the conclusions that the answer might simply be, "Who knows for sure" or lack of time/interest in more education?
jeffp
Well-known member
It's a lot of simple things put together.
1- There is not as much time spent on teaching ACT management as it really warrants. It's an old drug, not pushed through the sales rep chain, nor lots of continuing ed in the general medical community on ACT (though specialty offerings are available. Much more strongly emphasized in the pharmacy CE than general medical). Mainstream medical journals have few articles on ACT. I never heard of the Journal of Thombosis and Thrombolysis until I was already on the rat poison (almost every issue has something new with regard to ACT pharacology and management). I personally had very little training in cases with patients on coumadin. Never had any CE in the stuff (never saw any offered), and thought I was in for a lifetime of no veggies and horrendous bruises. Glad I was wrong about that. I give talks at local medical meetings in managing ACT in extremity surgical cases - hopefully the info will gradually spread.
2- Older instructors and practitioners are more likely to be familiar and comfortable with the older protocols.
3- Proper teaching of ACT to patients take time. With reimbursements down and patient loads up, doctors have an average of 4 minutes per patient face-to-face time. Physician assistants and office nurses are generally offered and encouraged to take continuing ed in the things that will boost patient throughput for the majority of cases. There's lots of patients on ACT, but overall they're older and not good at self-advocacy skills (we valvers are a small minority of coumadin takers).
4- There's the liability issue. As backward as it sounds, the general public "knows" that "blood thinners" cause bleeding. If a patient is injured or dies due to a bleed while on coumadin the family (and jury) knows the doctor did something wrong and should have taken them off that horrible dangerous drug. They also know that the patient is on the medication to reduce the risk of stroke. Plaintiff's attorneys have no trouble finding "experts" to attest to this. If they do have a stroke; well, they knew it was going to happen sometime, it was just fate and not the doctors fault. We here know that just the opposite is more than likely true (yeah, stuff happens regardless of how perfect the care is) but most folks like their facts short and simple - coumadin makes you bleed too much.
5- I think that as time goes on there will be a warfarin replacement for post-op patients, those with AFib, and other such things, but probably not for valvers at first. Ideally with less needing ACT management, there will be more time spent to educate patients still on the stuff, but I fear that the emphasis will be less rather than more.
<end of rant>
1- There is not as much time spent on teaching ACT management as it really warrants. It's an old drug, not pushed through the sales rep chain, nor lots of continuing ed in the general medical community on ACT (though specialty offerings are available. Much more strongly emphasized in the pharmacy CE than general medical). Mainstream medical journals have few articles on ACT. I never heard of the Journal of Thombosis and Thrombolysis until I was already on the rat poison (almost every issue has something new with regard to ACT pharacology and management). I personally had very little training in cases with patients on coumadin. Never had any CE in the stuff (never saw any offered), and thought I was in for a lifetime of no veggies and horrendous bruises. Glad I was wrong about that. I give talks at local medical meetings in managing ACT in extremity surgical cases - hopefully the info will gradually spread.
2- Older instructors and practitioners are more likely to be familiar and comfortable with the older protocols.
3- Proper teaching of ACT to patients take time. With reimbursements down and patient loads up, doctors have an average of 4 minutes per patient face-to-face time. Physician assistants and office nurses are generally offered and encouraged to take continuing ed in the things that will boost patient throughput for the majority of cases. There's lots of patients on ACT, but overall they're older and not good at self-advocacy skills (we valvers are a small minority of coumadin takers).
4- There's the liability issue. As backward as it sounds, the general public "knows" that "blood thinners" cause bleeding. If a patient is injured or dies due to a bleed while on coumadin the family (and jury) knows the doctor did something wrong and should have taken them off that horrible dangerous drug. They also know that the patient is on the medication to reduce the risk of stroke. Plaintiff's attorneys have no trouble finding "experts" to attest to this. If they do have a stroke; well, they knew it was going to happen sometime, it was just fate and not the doctors fault. We here know that just the opposite is more than likely true (yeah, stuff happens regardless of how perfect the care is) but most folks like their facts short and simple - coumadin makes you bleed too much.
5- I think that as time goes on there will be a warfarin replacement for post-op patients, those with AFib, and other such things, but probably not for valvers at first. Ideally with less needing ACT management, there will be more time spent to educate patients still on the stuff, but I fear that the emphasis will be less rather than more.
<end of rant>
K
Karlynn
What Jeff said.
I think because it's an "old drug" there are many doctors and other practitioners who still operate off of "old" protocol. And I think the liability issue is huge and it does relate to the whole "doctors fear bleeding" issue. For some reason, stroke isn't as big a concern.
I would hope that any person who has been told here that their doctor or clinic is mismanaging their Coumadin would be willing to direct them to Al's site in order to get more educated.
My mother-in-law was on Coumadin after her hip replacements and knee replacement. This last time I found out that she was going to a Coumadin clinic for her INR test and they were not calling until a week after the test. I about had a stroke - unrelated to Coumadin. So I called the clinic and read them the riot act - and this was a Coumadin clinic. However, they were so concerned about her that they told her she wasn't to eat any salads while on the drug. And I repeat - this was a Coumadin clinic!
I think because it's an "old drug" there are many doctors and other practitioners who still operate off of "old" protocol. And I think the liability issue is huge and it does relate to the whole "doctors fear bleeding" issue. For some reason, stroke isn't as big a concern.
I would hope that any person who has been told here that their doctor or clinic is mismanaging their Coumadin would be willing to direct them to Al's site in order to get more educated.
My mother-in-law was on Coumadin after her hip replacements and knee replacement. This last time I found out that she was going to a Coumadin clinic for her INR test and they were not calling until a week after the test. I about had a stroke - unrelated to Coumadin.
So I called the clinic and read them the riot act - and this was a Coumadin clinic. However, they were so concerned about her that they told her she wasn't to eat any salads while on the drug. And I repeat - this was a Coumadin clinic!
Ross
Well-known member
What I want to know is why can't this Doctors take a good hard look at German physcians and ACT patients. Home testing to them is nothing and many have an absolute grasp of how to manage patients too. What is wrong with this picture?
Marty
Well-known member
A few years ago I discussed this with a German hematologist who has a lot of patients on ACT. I asked him if it helped him if they self tested but called the results in and asked him to manage.He said that didn't help him at all. He said he teaches his patients to self test - and then self dose. Works for me. My PCP loves me self dosing.
Ross
Well-known member
Just look at the ACForums, those folks overseas are light years ahead of our physicians in the ACT area and there really isn't any good excuse for it.
For another wealth of information, see this site:
http://www.ismaap.org/
We motivate patients to take control of their own oral anticoagulation therapy
More than 4.000.000 patients in Europe are living on long-term oral anticoagulation. ISMAAP activities are focussed around these anticoagulated patients to offer them a better quality of life.
This web site contains comprehensive information about this subject, as well as information about living with lifelong anticoagulation.
In the name of the authors, we would like to thank you for taking interest in these subjects. Managing Board of the ISMAAP, Geneva.
"Active, informed patients are natural partner in managing anticoagulation therapy efficiently"
For another wealth of information, see this site:
http://www.ismaap.org/
We motivate patients to take control of their own oral anticoagulation therapy
More than 4.000.000 patients in Europe are living on long-term oral anticoagulation. ISMAAP activities are focussed around these anticoagulated patients to offer them a better quality of life.
This web site contains comprehensive information about this subject, as well as information about living with lifelong anticoagulation.
In the name of the authors, we would like to thank you for taking interest in these subjects. Managing Board of the ISMAAP, Geneva.
"Active, informed patients are natural partner in managing anticoagulation therapy efficiently"
I am very lucky..that 5 years ago..I had a young Cardio..that signed off for me to home-test..I am lucky that my Protime that will be age 5 soon (bought from QAS)is still working great. No problems.I am lucky that my range stays pretty much the same. Sometimes a tad high (never low)..and I know I can lower that by eating more greens, V-8 juice, ect..No change in doseage....I am lucky that I have had the same Cardio's nurse..that scripts my warfarin..and when I call her once a month..she always calls me back. just now, more chit-chat..how are you? ect.. Just ends by saying, keep on the same doseage..5 mg. now for 5 years. ............Maybe the only down thing for me is that my Cardio still (after 5 years) wants to see me every 6 months. Once a year for echo...the other odd 6 month visit..more of a 5 minute joking visit.. the other thing is Ashley only scripts me for 4 months...so I leave a reminder for new script on her answering machine No problem. she always calls it in to drugstore.I asked her one time why she doesn't script me for at least 6 months. she said, they have so many elderly people on Coumadin that..most forget to come in for a draw, ect...(she wasn't talking about me )she said..that most people have to come in every 3 months to make sure they are in range to get another script. Makes sense to me..........Bonnie
............Maybe the only down thing for me is that my Cardio still (after 5 years) wants to see me every 6 months. Once a year for echo...the other odd 6 month visit..more of a 5 minute joking visit.. the other thing is Ashley only scripts me for 4 months...so I leave a reminder for new script on her answering machine No problem. she always calls it in to drugstore.I asked her one time why she doesn't script me for at least 6 months. she said, they have so many elderly people on Coumadin that..most forget to come in for a draw, ect...(she wasn't talking about me )she said..that most people have to come in every 3 months to make sure they are in range to get another script. Makes sense to me..........Bonnie
L
Lisa in Katy
My Very Long Winded Response!
My Very Long Winded Response!
It's very different to think about something every now and then and to actually live with it everyday. We are an informed society, and as such, we have become experts on many things that affect us personally. In our cases, that's heart valve and ACT issues. Our doctors and other healthcare providers, although educated, don't focus on ACT. It is not in the forefront of their thoughts like it is ours. They aren't nearly as informed about it as we are. That's why Coumadin Clinics, such as Al's, are such great things.
We all have parts of our jobs that we think about on a regular basis, and then there are those things that we only do every now and then. In my case, report cards are done every 6 weeks. Every time I do them, I have to think for a few minutes about all the different things that are required - grades of course, explanation sheets for low grades, explanation sheets for poor work habits, modification and accommodation sheets, speech reports, ESL reports, etc. I have a checklist that I can refer to, but I don't always because I am in a hurry. Granted, this isn't a matter of life and death, but it helps me to understand why healthcare people who deal with hundreds of different problems aren't experts at my particular problem.
That is why WE have to be the experts! Educate yourself and don't let them mismanage you. I was talking to a coworker recently who is on Coumadin, Lovenox, and a newer anticoagulant (can't remember the name) for a stroke issue. She wasn't aware that Lovenox doesn't show up in the INR. She wasn't aware that Coumadin and Warfarin are the same drug. Her INR is bouncing and her doctor is changing her daily dose from 12 to 5 to 10.... I told her about Al's 10% guideline and how too many and too large adjustments always puts you behind the bouncing ball. I gave her Al's website and told her to get herself educated and then help her doctor with her treatment. I hope she pays attention to me. I spoke with another lady recently who has phlebitis and is on Coumadin. She told me that the thing that upsets her the most is never getting to eat broccoli or salad and not getting to enjoy an occasional margarita. She asked how I dealt with it and I told her about moderation and consistency. My advice was the same as above.
My Very Long Winded Response!
It's very different to think about something every now and then and to actually live with it everyday. We are an informed society, and as such, we have become experts on many things that affect us personally. In our cases, that's heart valve and ACT issues. Our doctors and other healthcare providers, although educated, don't focus on ACT. It is not in the forefront of their thoughts like it is ours. They aren't nearly as informed about it as we are. That's why Coumadin Clinics, such as Al's, are such great things.
We all have parts of our jobs that we think about on a regular basis, and then there are those things that we only do every now and then. In my case, report cards are done every 6 weeks. Every time I do them, I have to think for a few minutes about all the different things that are required - grades of course, explanation sheets for low grades, explanation sheets for poor work habits, modification and accommodation sheets, speech reports, ESL reports, etc. I have a checklist that I can refer to, but I don't always because I am in a hurry. Granted, this isn't a matter of life and death, but it helps me to understand why healthcare people who deal with hundreds of different problems aren't experts at my particular problem.
That is why WE have to be the experts! Educate yourself and don't let them mismanage you. I was talking to a coworker recently who is on Coumadin, Lovenox, and a newer anticoagulant (can't remember the name) for a stroke issue. She wasn't aware that Lovenox doesn't show up in the INR. She wasn't aware that Coumadin and Warfarin are the same drug. Her INR is bouncing and her doctor is changing her daily dose from 12 to 5 to 10.... I told her about Al's 10% guideline and how too many and too large adjustments always puts you behind the bouncing ball. I gave her Al's website and told her to get herself educated and then help her doctor with her treatment. I hope she pays attention to me. I spoke with another lady recently who has phlebitis and is on Coumadin. She told me that the thing that upsets her the most is never getting to eat broccoli or salad and not getting to enjoy an occasional margarita. She asked how I dealt with it and I told her about moderation and consistency. My advice was the same as above.
Thoughts about explanations
Thoughts about explanations
It seems there is no easy explanation why ACT is so badly mismanaged when "the experts" themselves aren't aware of their own shortcomings. When ignorance is bliss 'tis folly to be wise. May be they have reason to prefer it that way or may be they are just passing the buck to some other speciality.
Anticoagulation clinics give out bad advice too. They should be invited to walk a mile in our mocassins and see how they like what they're doing.
This drug isn't the new kid on the block--it's been around for 50+ years. Maybe that's the problem--it's become as common as aspirin and is being treated as such.
Thoughts about explanations
It seems there is no easy explanation why ACT is so badly mismanaged when "the experts" themselves aren't aware of their own shortcomings. When ignorance is bliss 'tis folly to be wise. May be they have reason to prefer it that way or may be they are just passing the buck to some other speciality.
Anticoagulation clinics give out bad advice too. They should be invited to walk a mile in our mocassins and see how they like what they're doing.
This drug isn't the new kid on the block--it's been around for 50+ years. Maybe that's the problem--it's become as common as aspirin and is being treated as such.
Just because a clinic has a Coagucheck or does lab draws & sends them out doesn't mean the medical professional understands anticoagulation therapy.
It's like comparing a bookkeeper to an accountant (certified professional accountant).
It's like comparing a bookkeeper to an accountant (certified professional accountant).
Marty
Well-known member
The Oracle at Delphi said "Know thyself...Nothing in excess!"
G
geebee
I don't know about that, Marsha. I have met many bookkeepers who know more than some accoutants. Although the accountants might have those degrees, practice makes perfect and the day-to-day stuff the bookkeepers do can make them the experts. Or is that what you meant?catwoman said:
K
Karlynn
We find out new things about aspirin all the time. But it sure seems the medical community pays much better attention, since many more people take it.
G
Guest
I tried to do my part. I had 95 people at my warfarin management seminars this week.
geebee said:I don't know about that, Marsha. I have met many bookkeepers who know more than some accoutants. Although the accountants might have those degrees, practice makes perfect and the day-to-day stuff the bookkeepers do can make them the experts. Or is that what you meant?
I'm referring to more in-depth knowledge of the complexities of accounting, laws, etc.
My FIL never used an accountant; a bookkeeper did his taxes. An accountant would have been able to make suggestions on improving his situation.
allodwick said:
That's great! Many patients will benefit from the seminars & your experience.
S
Susan BAV
Regarding the original question, I don't know. I wasn't in range (maybe once) for the three post-op months I was on it and I very carefully tried to do everything correctly.
But some of the replies here reminded me of a recent experience, that continues to bother me, when I was in a nearby hospital overnight following a surgery this past December and they gave me a roommate who was very ill. She'd had some form of surgical heart ablation, I believe about a week or two before, and she was put on Coumadin post-op and she was sent home and given instructions to give herself [I think she said] eight Lovenox injections over a three day period and her thigh swelled shockingly and tremendously and then her femoral artery herniated and/or exploded or something and she nearly bled to death. She was in such a delicate situation, just out of ICU when she came to my room, that I was frightened for her. But she thought all of her doctors were wonderful and had done everything right for her--a typical immediate response, I think, when you have just faced death and survived.
No doubt in my mind that at some point her situation had become terribly and nearly fatally, mismanaged.
But some of the replies here reminded me of a recent experience, that continues to bother me, when I was in a nearby hospital overnight following a surgery this past December and they gave me a roommate who was very ill. She'd had some form of surgical heart ablation, I believe about a week or two before, and she was put on Coumadin post-op and she was sent home and given instructions to give herself [I think she said] eight Lovenox injections over a three day period and her thigh swelled shockingly and tremendously and then her femoral artery herniated and/or exploded or something and she nearly bled to death. She was in such a delicate situation, just out of ICU when she came to my room, that I was frightened for her. But she thought all of her doctors were wonderful and had done everything right for her--a typical immediate response, I think, when you have just faced death and survived.
No doubt in my mind that at some point her situation had become terribly and nearly fatally, mismanaged.
G
Guest
I am reading the book Blink. There is a section about medical malpractice. The doctors most likely to be sued are those who have a domineering manner even if they do everything correct. The doctors who are pleasant and involve patients in the decisions can have things go horribly wrong but rarely get sued because the patients like them. The decision to like or dislike someone is usually made within seconds after the first meeting.
