Does this sound right?

[Creed3]

Dr. Update!

Dr. Update!

I heard from my doctor today regarding the information I faxed him. He said that that is not the standard of care given. He told me to let my dentist decide whether to leave me on the coumadin. It also sounded like my doctor wanted to talk to me regarding this information, so I made an appt. to see him in one week to discuss this. We'll see where that goes. Does anyone have any comments that I should arm myself with next week? I hope he doesn't decide to bash this site because that would really really upset me and make me very angry. You never really know how doctors will react if they feel like they are being questioned about their care. My doctor has never given me any indication in the past that he would react in a negative manner, but you never know. He has always let me know when he thought something was over his head. I guess we'll see in a week.

Take Care!
Gail

 

[LUVMyBirman]

Hi Gail,

You wrote: "I hope he doesn't decide to bash this site because that would reallyrealy upset me and make me very angry."

I have a doctor that loves the fact I am involved with the group. So much that he would like me to speak to his post op patients after our conversation. Another said " stay off those boards and chat rooms".

If I want to be neutral.....I always use "a good friend of mine" that has a valve. That way it seems more personal to them. Actually, it was not stretching it too far as my former neighbor in TN was a valver herself. Small world.

I wouldn't stop taking my coumadin for general dental work. I have had a lot completed on the med. Including a root canal. No problem. Extraction's may require other measures. As I did come off and use Lovenox bridging. Now they don't want us doing that. FDA induced warning. But I hear extractions can be carried out on the Coumadin. Catch 22.

Let us know how it works out for you.
Take care

 

[Johnny Stephens]

Hrrm

Hrrm

Not the standard of care given? I wonder about that, because my dentist, doctor, and cardio who work in 3 different groups were all in synch on it. To take it even a step further, my anticogulation pharmacist called me at work to make sure I was clear on the instruction not to stop my coumadin before the dental work.

With regard to bashing the site, I like Gina's "a friend of mine" approach, because I've also had varying levels of acceptance on information that I present as coming from "an Internet group." Some of the docs (like my cardio) have been very supportive...he said he considers me to be an educated medical consumer because of what I've gleaned here. Other just seem to dismiss it out of hand, but luckily those seem to be in the minority .

If he does react angrily to simple questions like this, maybe it's time to go doctor shopping? Just my $.02

 

[Rich]

I think a lot of doctors are intimidated by the knowledge many of their patients have in this day and age.
Not many years back most of us would simply do what the doctor said without question.
For example my wife and I have done tons of research on statin drugs since she has had so many problems with them.
About a week ago at our cardiologist appt. he told her she knew a lot more about all this than he did..and he has been a heart doctor for a very long time.
Some accept this 'threat' very willingly but others get plain scared that they can't BS their patients any longer.

 

[Guest]

Gail, if your cardiologist gets too huffy ask what the standard of care is and where it is published.

Here is a tactic I was ready to use against the other side's expert witness when a lawsuit was settled out of court.

The attorney I was working with was going to question the expert doctor.

What professional body sets the standards for the use of warfarin?

Probable answer (I don't know).

What was the volume number of the standards that body had in place at the time the incident occurred?

Probable answer (I don't know).

What did those standards say about managing a situation like this?

Probable answer (I don't know)

You do not know who sets the standards, what standards were in effect, nor what the standards said yet you call yourself an expert in this field. I'd like to know how you got to be an expert but I'm afraid that it would be just wasting the court's time. I have no further questions.

What effect do you think that would have on a jury. He made his statement but we would have made it seem like he wasn't even worth cross examining him. Just blow him out of the tub.

That is where your doctor would be if he could not define his standard of care.

 

[Blanche]

Gail:
Doctors seem to automatically disregard information from the net, and sometimes with good reason. There is alot of junk floating about. But, the articles you provided him were reasearch articles, articles from experts in the field, and articles from medical practitioners. You might want to take a copy of the seven articles I sent. There are two research studies published in the Journal of the American Dental Association, two from State Dental Associations, one from an Australian Dental Association, one from practicing oral surgeons who are affiliated with 21 hospitals in the Atlanta Area, and one from the University of Michigan Health System's Anticoagulation Unit. This along with all of Al Lodwick's materials should convince anyone. By the way, when I first gave Albert's doctor materials from Lodwick, I included a copy of his Vita (resume), which certainly shows that Al Lodwick is a recognized expert with a National reputation.

Last week Albert visited a Urologist (one who says he welcomes pro-active patients) for the first time. When Albert mentioned dental work, the Doctor said, "You don't go off your Coumadin, do you?" This doctor knew about all the studies and reasons for staying on Coumadin.

Sorry you have to go through this. Good wishes.

 

[John & Joann]

We MUST get in on this discussion. Joann has been on coumadin for 31+ years. She NEVER goes off coumadin when she has normal dental procedures done. We have a friend that went off coumadin for a sygmoid and had a massive stroke. 6 years in nursing home before death.

Make certain that you have EXPERT information before you go off coumadin!!!

Joann has survived with mechanical valves for 31 years because of her strong faith, expert advice from physicians, asking questions, and following directions.

Some dentists want you to go off coumadin for THEIR convenience. This recommendation should come from a medical specialist that knows valves and not a dentist or a general physician!

John for Joann
Clicking and freezing in Western Ohio
Florida soon!

 

[ShezaGirlie]

Hi Gail and others interested...

Hi Gail and others interested...

I just had a wisdom tooth pulled last week and did NOT go off Coumadin. I printed out information on www.warfarinfo.com and took it to my Dentist. He read it and was very interested as he doesn't have many patients on Coumadin. He actually asked me if he could keep the printout. Of course.

So, between my Cardiologist and Dentist I remained on Coumadin for the extraction taking the following doses. My normal dose is 10mg.

A rundown of my INR and dose of Coumadin follows:
Friday ---- INR = didn't test/Coumadin 7.5mg
Saturday - INR = 2.4/Coumadin 7.5mg
Sunday - - INR = 2.1/Coumadin 10mg
Monday -- INR = 1.8/Coumadin 10mg [day of extraction--bleeding
Tuesday - INR = 1.9/Coumadin 10mg -- bleeding
Wednes - INR = 2.9/Coumadin 10mg
Thurs ---- INR = didn't test/Coumadin 10mg
Friday --- INR = 3.7/Coumadin 7.5mg -- bleeding
The reason for the Friday dose at 7.5 was because I started bleeding again.....four days after extraction.
Saturday - INR = didn't test/Coumadin 7.5 -- bleeding
Sunday --- INR = 2.3/Coumadin 10mg
Monday -- INR = didn't test/Coumadin 10mg
Tuesday -- INR = 2.3/Coumadin 10mg [Wed & Thurs = 10mg]
Friday ----- INR = 2.4/Coumadin 10mg [I'm getting there]

Yes, it was a royal pain in the @$$ to keep up with all this and I don't get on well with all these 'health' issues as I never had any before OHS. Mine was emergency and I didn't have a choice of valves as the mechanical ones are the only types installed in my town.

So consider yourselves lucky to be able to study the situation from all avenues before you have to have surgery. That's why I'm sharing... and please listen to John and Joann...and Al because experience counts!

Now where's that bottle of red wine...

 

[Guest]

Sheza.. I like your handle. Whenever I teach a class I use the name Sheeza Notwell for my patient.

 

[Ross]

John for Joann
Clicking and freezing in Western Ohio

Updated 8 PM ET (1Z) 1/18/2003
Broken Clouds, Light Snow 85 %
8 °F WNW 6 mph

Ross clicking and freezing in N.E. Ohio!

 

[Creed3]

Here's the latest!

Here's the latest!

Hi Everyone!
I was able to talk to my PCP about the coumadin the other day. I had to take my little girl to the doc, so we discussed it while I was there. He said that he read over the information I sent him, but it is not the standard of care given for coumadin patients. He said that if he were to tell me to go off the coumadin and something happened, he would be in big trouble because they would come back to him and say that is not the standard of care given in these cases. He also told me that he knew of some cases where patients who went off their coumadin bled so much they bled to death or needed a transfusion. Well, anyway, we talked some more about it and he said that he thinks my situation is above and beyond his training and that my cardiologist should regulate my coumadin. He was very understanding about the whole thing. I talked to my cardiologist and they said that I should not stop taking my coumadin for a dental cleaning. They went on to tell me what some of the options were if I needed to have a procedure done. My cardiologist called my dentist and they are going to talk over what is the best thing for me and to find out what the dentist is comfortable working with. My cardiologist also said that if I were having a procedure, depending on the type of procedure, I may be able to stop coumadin for 3 days at the most, but that is not his preference. I would have to start my coumadin up right away after the procedure. His preference for a procedure (depending on what type) would be for me to stop coumadin but give myself two heparin shots a day. I think she said heparin, I know she didn't say lovenox. I don't remember when or how far in advance he would want me to stop the coumadin and start the shots. After the procedure I would then have to go right back on the coumadin right away.
The nurse at the cardiologist's office told me that I should definately question things that the doctors tell me. She said that this is my health we are dealing with and that my situation is not the norm. She told me that I shouldn't think that my PCP is a bad doctor, he just doesn't have the backround to deal with a special case like mine. Well, I'm going on and on here. I just wanted to let you all know what was happening. Let me know what you think.

Thanks & Take Care!
Gail

 

[djacq]

Gail,
I am experiencing some of your concerns also.
I respect your PCP acknowledging the need for someone else to manage your Comadin. So many Docs won't acknowledge or are aware of the management for valves.

My cardio is willing to act as a consultant but my PCP is managing my comadin and I am so fearful that very few Docs are familiar with managing anticoag for valve replacement.
It is so hard and I even wonder if cardios' know how to manage valve patients. How many of us are there in the scheme of things?

I am becoming more anal about this everyday but I truly believe it is because I don't have confidence in anyone (except Allodwick) to deal with this. I wish I could go to Allodwick's Clinic!!!!!!!

I am very interested in your progress with this. Good luck.

Donna

 

[Blanche]

Gail:
You should be so very proud of yourself. You have become a proactive patient by asking questions, obtaining reliable information, and not accepting directions that you know are not correct. I'm sure your doctor is very good at what he does, but he definately should not be regulating anticoagulation because he obviously is over his head. I can not believe that in the face of research evidence and accepted practice he still maintains that going off coumadin is the standard of care. What did he say when you asked him about the articles you provided? Did he tell you where that "standard of care" is published and who developed it and when? Patients bleeding to death and needing transfusions....that is horse puck at the worst or urban legend at best. I can't wait to hear what Al Lodwick has to say about that. I hope you told him that you had research evidence about people who died when they went off coumadin. But all is well now. You have a cardiologist who seems to know what he/she is doing. You will probably be alot better off now that you can be confident in the directions you get. You should probably send your dentist copies of the materials that you have, if you haven't already done so. Three cheers for you, you've done well.
Blanche

 

[Guest]

I respect your PCP for saying that he was in over his head. In my experience, the patients who get into the most trouble are those whose doctors do not know when (or are too stubborn) to ask for help.

The other patients who do not get good care are those whose doctors are sarcastic to, or yell at nurses. I remember one incident where a doc was at the hospital before 7AM. One doc asked another, "John, what are you doing here so early?" "Well the nurse called me at 3 AM to tell me a patient was dying, so Idecided to get up early to come see her. But they did not call me back to tell me she actually died." (Sounds noble, eh?) When Dr. John was out of earshot the night nurse said, "When I called him at 3AM he asked, 'What do you want me to do, come down and resurrect her?' There was no way I was going to call him again to tell him that she died and set myself up for more abuse."

Remember, it is not the degree or the specialty that make a person a competent warfarin manager. One cardiologist told me, "I did not not go to med school, residency and do a fellowship in cardiology to be a Coumadin doser. That is the primary care docs job. Unfortunately most of them fail at it." (He is no longer practicing in the same state -- I also heard him yell at a nurse once)

Warfarin has been on the market for about 50 years and there is still about one medical journal article daily about it. Every day we literally learn more about its management and care of patients taking it.

 

[John & Joann]

P.S.

Joann also uses a Coumadin Clinic. A pharmacist manages her coumadin under the supervision of a cardiologist. He does not have any direct contact.

We are able to do it without supervision, but MUCH prefer this arrangement. Obviously, we will both speak up if something is not correct. This has only happened once in 31 years.

John for Joann
Brrrrrrr in Western Ohio

 

[Granbonny]

John.

John.

How often does Joann test? Is she ever out of range? BonnieFreezing in the deep south too

 

[Creed3]

Hi Blanche!

Hi Blanche!

I really didn't get into a real deep discussion with my PCP. My daughter is the one who had the appt. with him. We talked about the articles I gave him, but he kept saying that was not the normal standard of care usually given. I didn't really get into asking him about showing me documentation on what the standard of care is because he pretty much had already told me he thought this was out of his league. He said that I could continue to get my blood drawn at his office or the hospital and then just have the results sent to UVA for my cardiologist to regulate everything. The nurse at my cardiologist's office said that they don't regulate too many patients who are on coumadin, but the nurse says that I sound pretty proactive and she trusts that I will be very involved in my regulation. I can't imagine not being completely aware and involved. She told me that they had regulated some patients who just wouldn't listen to them at all. When they would tell the patients to go get their INR checked, the patients would just ignore them and get it tested whenever they felt like it. The nurse just wanted to make sure that if she said to get tested, that I go to get tested. She just kept stressing how important it is to keep my INR within the correct range. She also agreed with me when I said that my flu shot threw off my INR levels. My PCP didn't believe me at all when I told him that. I know my cardiologist doesn't feel it is necessary to test at home but I don't think he is totally against it. I think that decision will come with time.

Take Care!
Gail