Do you have a coumadin horror story?

[Marty]

I have been interested in warfarin coumadin dosage since 2 weeks post op my left pleural cavity filled with blood and more than 4 liters had to be withdrawn by tapping the chest with a needle. My wonderful surgeon who works so hard to do everything right worries constantly about anticoagulant mismanagement of his patients. He told me when the surgical program started several years back valve patients were kept in the hospital 2 weeks or more and he could get their dose stabilized. Now valve patients go home as early as second postop day. I was discharged AM of fourth day. The discharged patients fan out to a variety of cardiologists, internists, and GP's for their anticoagulation management.For many of these busy doctors anticoagulation mangement is a very low priority and often is handled by ancillary personell of dubious qualification.At the AC Forum last month in DC Dr. Ansell read a couple of letters from patients relating how they had been screwed over. We are trying to get a handle on this. I will be giving a talk based on my personal experience and research of the literature to the staff at my surgeons hospital July 25. I'd like to embellish this talk with any of your experiences that you might feel are instructive. I will guarantee complete confidentiality. Let me know however if its OK to give your geographical location. Dr. Ansells horror stories were from New York and New Jersey. Marty

 

[strayze]

I wish you the best of luck in your venture. I don't want to add any more "horrors'" here; they are sprinkled around this site. I believe part of the problem with the busy gp or internist offices is that the reimbursement for anticoagulation monitoring is pretty meager for the amount of tracking work it takes to do a good job. Hence we get a robotic sloppy job from untrained staff. Coumadin Clinics have had a good track record, but they are few and far between in this part of the country (S MD), or are associated with particular practices one cannot get into. I'm eager to get on with an INR machine.

 

[Lisa at Home]

I'm getting good at disagreeing with the Coumadin nurse and adjusting myself. When my INR was high and they would tell me to hold for 2 days, my INR would hit bottom. I remind them of this when I'm high and they tell me to hold for 1 day. Instead, I take half my usual dose and it seems to work.

The main problem that I have is that they don't look back far enough to find what didn't work in the past. I now pay $15 a shot, and then they get less than $5 more from my insurance company. Pretty good pay for the few minutes of work that they do.

I also convinced them recently to give me two prescriptions - 6 mg and 1 mg - so I can be adjusted a mg at a time. They used to adjust 3 mg at a time, and I seem to be really sensitive to this large of an adjustment. I'm now at 6 mg 5 days and 7 mg 2 days. My last INR was 3.0!!!

 

[LUVMyBirman]

Marty

Marty

Hi Marty,

Hope all is well with you! Nice picture .

You are more than welcome to use my story any way you wish. All of the details are not in my personal story. Would have taken up pages and did not want to post all of the gory details. My first name and location would be appropriate.

Also, would be happy to answer any additional questions you or your colleagues may have. Feel free to email me at [email protected].

Gina in Memphis, TN

 

[arlice]

my coumadin story

my coumadin story

Marty,

I was on coumadin for several months due to atrial fibrillation. One day I noticed that I had some red spots on my toes and wondered what they were. One evening I decided to look at them under a good light with a magnifying glass. All of a sudden it hit me that when I had read about coumadin and the side effects that one of them was "purple toes syndrome". So I pulled up that info again and read it realizing that it was describing my toes and the way they looked. It also said to stop taking coumadin immediately. "Purple toes" is basically "Microembolisms of cholesterol" in the small capillaries of the toes or even other places.

The next day I called my cardiologist's office and talked to his nurse. In this office they have nurses who manage the protimes but I don't know if this nurse was one of those or not but she said "I have never heard of such a thing!" So I told her I found the info on www.coumadin.com. She also told me not to stop taking coumadin. But I persisted and so she checked with someone else. Finally, they did decide to have me stop taking it but wanted me to see my family practice doctor! He didn't manage my protime and wasn't the one who prescribed it but they want me to go to him. So I did and he asked me "Why did they send you here?" Anyway, he told me about two other things I could take. After reading about them, I decided I would rather take my chances with a stroke from not taking it as with a stroke and taking it.

Right now I am only taking one 325mg aspirin a day (I was taking that along with coumadin before) along with propranolol. As I have gotten older my heart rate when I do have afib has gotten slower but is still irregular. I don't have it all the time but can't always tell when I am in afib. That's why they put me on coumadin after 20 years with afib episodes.

You may use my story without my name but you may mention that I live in the Kansas City area (Kansas side).

 

[Diana]

Coumadin(Warfarin in UK)

Coumadin(Warfarin in UK)

Just been reading the posts and noticeded Arlice said she was taking aspirin AND coumadin at one time. I always understood that aspirin was an absolute no no for people on coumadin. I have been taking coumadin since last October and the packets I get from the pharmacy have printed warnings about aspirin.

On another point, one advantage with our Health Service is that we have clinics, normally in hospitals, where people on coumadin
are referred automatically for as many visits as is necessary to check their INR.

Diana

 

[cookie]

coumadin

coumadin

Marty.
It has been a year and my coumadin levels still fluctuate. I was recently switched to an anti-coagulation clinic. My PCP was originally doing the monitoring. The clinic has a pharmacist that has specialized in coumadin and is very knowledgeable. He answers andy and all questions no matter how stupid they may be and available by phone. My doc wasn't. The clinic also uses the finger prick method which is wonderful. I just recently asked him if one was more accurate than another and he said from recent studies there is a difference of only 99% between venal and finger pricking. I also asked him about baby aspirin. He considers aspirin overkill and asking for problems, but can't convince Cardios that it isn't really necessary. The only horror story I have is with the venal draw - if pressure isn't kept on that puppy you can really spook the people in the waiting room. I came out one time in the very beginning and blood started running down my arm and everyone just kind of backed away from me like I had the plague!
Good luck in your venture - I know from reading some posts on other sites that some people are really ill informed about coumadin.

 

[arlice]

coumadin stories

coumadin stories

To Diana:

Yes, I knew that I needed to be careful when taking both coumadin and aspirin and asked that question of the doctor but he said that the mechanisms of the two meds were different - coumadin interfers with the formation of thrombin and aspirin makes the platelets slick so they don't stick together. My husband (who has a St. Jude mitral valve [8 years] and that's why I check this site) is also on coumadin and in addition he takes one 83mg (baby) aspirin per day. Maybe that's why he is always chasing his INR. Because of info I learned about on this site, he now has the ProTime Microcoagulation unit to check his own protime. It's been better since he got that.

 

[Julie]

I have nearly died twice from coumadin. Both times were because when my PT level was low, my dose was raised. I became dizzy, and felt like I didn't know where I was. I bruised so badly even if I just touched something. (Removed email address for users safety-Ross)This is a dangerous drug, and doctors do not understand how important it is to keep on top of it.

Julie

 

[Cooker]

Sorry....no horror story....my ACT has been as smooth as silk

 

[Karlynn]

I have nearly died twice from coumadin. Both times were because when my PT level was low, my dose was raised. I became dizzy, and felt like I didn't know where I was. I bruised so badly even if I just touched something. Email address removed for user safety---Ross. This is a dangerous drug, and doctors do not understand how important it is to keep on top of it.

Julie

Do you know what your INR was after the dose was raised. It had to astronomical.

I do feel that I need to add that there are many many drugs that are dangerous drugs - when managed incorrectly. When Coumadin is managed properly - it is a safe drug. Before my VR I had 3 doctors and cardiologists prescribe antiarrhythmics that I found out later (by the cardio I finally found) should have been administered in the hospital in CICU. The first doctor had put me on a drug that, I found out later, the company specifically stated it should be used only in patients with life-threatening arrhythmia. This doctor kept increasing my dose when I was complaining about things that turned out to be symptoms from the drug itself. I almost died from that drug. 2 other cardios would send me home with sample packets of antiarrhythmics to try, not bothering to read that the companies specifically stated that they should be started in a closely monitored hospital setting.

If you'll notice - Marty started this thread 7 years ago. It really makes me sad to know that we are still seeing signs daily that tell us that many in the medical community in the US have made the choice to stay in the dark on the drug and this is the main reason we see horror stories. I think it's the unqualified people who are dangerous much more than the drug. Yes, there are some managers who know what they are doing. But it's my belief that Coumadin users need to use the mind set of most insulin diabetics. Know the drug we are taking and know how to test and, particularly, know how to dose ourselves. Even those who aren't comfortable in doing their own dosing - they should still learn the rules because it will allow them to recognize mismanagement.

 

[Ross]

I have nearly died twice from coumadin. Both times were because when my PT level was low, my dose was raised. I became dizzy, and felt like I didn't know where I was. I bruised so badly even if I just touched something. Email address removed for user safety---Ross. This is a dangerous drug, and doctors do not understand how important it is to keep on top of it.

Julie

It would be very interesting to know how much your dose was raised and what INR's you had that you thought to be high. Could you post your complete dosing schedule? I've never ever, in many years, heard of Coumadin causing one to be dizzy and out of it.

Tell us the story. You almost died twice from ? clots?

 

[Jkm7]

Just been reading the posts and noticeded Arlice said she was taking aspirin AND coumadin at one time. I always understood that aspirin was an absolute no no for people on coumadin. I have been taking coumadin since last October and the packets I get from the pharmacy have printed warnings about aspirin.
.....

Diana

Prior to my VR, I took 325 mg coated aspirin per day. As I have a bovine valve, I was briefly on coumadin post op (2 1/2 months). During that time period, they reduced my aspirin to 81 mg. As soon as I stopped coumadin, they increased me back to 325 mg. My cardio, two cardios in MGH, my surgeon and my PCP all agreed with that course. I had no problems but, again, it was only 2 1/2 months.

 

[Ross]

The asprin thing really is kind of weird. Some Doctors have their patients taking both Coumadin and 325mg Asprin and others 81mg. There's even been the question arise asking if there is really any benefit at all to taking an asprin regimen and once again, everyone is split on it with different theories.

 

[marie]

The asprin thing really is kind of weird. Some Doctors have their patients taking both Coumadin and 325mg Asprin and others 81mg. There's even been the question arise asking if there is really any benefit at all to taking an asprin regimen and once again, everyone is split on it with different theories.

I have a tissue valve and asprin can cause me to have stomach ulcers. After discussing with my doctor he felt that I should forgo the asprin and I never took coumadin. I guess only time will tell if I did the right thing. I will be six months post op on the 22nd.
Earline

 

[Jkm7]

I have a tissue valve and asprin can cause me to have stomach ulcers. After discussing with my doctor he felt that I should forgo the asprin and I never took coumadin. I guess only time will tell if I did the right thing. I will be six months post op on the 22nd.
Earline

Makes me wonder if it varies according to which valve we have replaced? Is that a ridiculous question?

I have mitral tissue. Maybe it is different for AV?

 

[Bina]

I take coumadin and for 2 yrs post op my cardio had me take 81mg aspirin also.
Since I stopped the aspirin, no more problems with nose bleeds!!

 

[Bina]

Makes me wonder if it varies according to which valve we have replaced? Is that a ridiculous question?

I have mitral tissue. Maybe it is different for AV?

A while back someone wrote that the mitral valve mechs have a slightly higher chance of getting a clot. The aortic valve has higher pressure and so it may be less susceptible to form a clot.
This is why the ACT ranges can be different. Also every surgeon has his own opinion.

 

[jojofromct]

My father has been on Warafin for 12 years, from a mild stroke years ago, he has a blood condition. Anyway, he cut himself shaving once, I took him to ER for a stich, he also had HUGE pallets fall on his legs, he was out of work for the summer that year, ummm...he got his hand stuck in a machine at work a a few months ago, his hand swelled up...umm...oh yeah this past Feb he fell on ice and was bruised from the butt to the leg it was horrible, and oh last Feb 2007 he had a car accident, and the air bag hit is face, he was a little swollen, those are some stories of Warafin for my dad...

and might be going for a valve replacement in the near future

 

[Ross]

People please, if your going to post horror stories, include information like what was the INR around the time of the incident. It's easy to blame Coumadin for things, but more often then not, it's because someone wasn't managed properly. Include details that show it's a direct result of the drug and nothing else. If there is a blood disorder, what is it? Please be specific.

It makes little sense to say I cut my arm off and coumadin made me bleed. I'm fairly sure that if anyone cuts their arm off, there going to bleed and bleed alot.