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coumadin dosage since 2 weeks post op my left pleural cavity filled with blood and more than 4 liters had to be withdrawn by tapping the chest with a needle.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]

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 Gonesth@aol.com.

Gina in Memphis, TN

[arlice]

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]

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]

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]

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.

[Bina]

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 :(

Hi JoJo, these seem to be regular accidents....any one of us would bruise in those situations.
For example:
My Dad once got his hand caught between a belt sander and a hard place; BIG swelling, nasty bruising, and NO Coumadin.
My Mom fell down some stairs; horrible bruises, swollen face, and NO Coumadin.
So, JoJo, I'm sorry but I really don't understand what you are talking about.

[Karlynn]

With the myth and lies that continue to be perpetuated by some in the medical community it's easy for people to attribute every adverse thing that happens to their body as a result of Coumadin. After all - we're told not to shave with regular razors still. People are led to believe that if they cut themselves that blood will pour out of them, or that they'll just start bleeding for the sake of bleeding.

The reality is that the additional bleeding in an injury resulting from an in-range INR is not going to be much more severe than in an injury for someone not on Coumadin.

[warrenr]

Marty,

You know you can use my father's.

Warren

[Marty]

Hi Warren, How are things? I think your dad's story is well known to all of us.
Tell us how the legal case is going if it is permissable. Warm regards Marty

[duncanjo]

With the myth and lies that continue to be perpetuated by some in the medical community it's easy for people to attribute every adverse thing that happens to their body as a result of Coumadin. After all - we're told not to shave with regular razors still. People are led to believe that if they cut themselves that blood will pour out of them, or that they'll just start bleeding for the sake of bleeding.

The reality is that the additional bleeding in an injury resulting from an in-range INR is not going to be much more severe than in an injury for someone not on Coumadin.

I started taking warfarin since my vavle replacement April/08 and I was told be careful when shaving your bound to bleed LOTS more.. and ya theres some misconception about warfarin/coumadin i found out. Becareful, don't cut yourself,bruising, etc..I found it's not much different, I've cut my self a couple time shaving I didn't bleed liters of blood or blood poured out of my eyes. Overall just have to take care of ur self a little more.

[jojofromct]

I am real sorry about posting about my dads warafin incidents, as the incidents that happened could have happened without being on the blood thinners also, I am truly sorry.

I am learning a lot on this board and all of you are much smarter than me and I apologize if I post things that dont make sence at times.

Once again, sorry about that

[Bina]

I am real sorry about posting about my dads warafin incidents, as the incidents that happened could have happened without being on the blood thinners also, I am truly sorry.

I am learning a lot on this board and all of you are much smarter than me and I apologize if I post things that dont make sence at times.

Once again, sorry about that

No apology necessary, and thanks for the clarification.:)
We are looking to share stories directly related to warfarin use or possible mismanagement.

[Karlynn]

I am real sorry about posting about my dads warafin incidents, as the incidents that happened could have happened without being on the blood thinners also, I am truly sorry.

I am learning a lot on this board and all of you are much smarter than me and I apologize if I post things that dont make sence at times.

Once again, sorry about that
No need to apologize. We all have to learn the truth from the fiction. The medical community in the US seems bound and determined to scare the heck out of anyone that might need to take Coumadin. It's no wonder that people attribute just about any medical problem they have to the drug, or the drug making it worse. There are true horror stories out there - most are from mismanagment, and yes - some are from the drug. We can't deny that.

What the medical community is slow to acknowledge is that aspirin therapy has it's own bleeding issues and it's affects on injuries, but because it's been OTC since - forever, it's thought to be a safe drug - which like Coumadin, it is when used as directed and managed correctly.

Your Dad is lucky to have such a caring daughter. (And I'm sure you feel lucky to have him.) Best wishes to you and your family.

[MandyMV]

I want to add to Karlynn said about aspirin and it having its own problems. I can no longer take any aspirin based medicines as I have suffered stomach bleeds and intestinal irritation from the prolong use of Ibuprofen and other prescribed NSAIDs. I wasn't an addict or anything but I had injuries from a car accident that caused chronic pain. Thanks to the doctor's telling me I could no longer use these drugs I have actually just figured out a better pain management treatment for my neck pain. However, I am always curious why everyone is so ready to condemn Coumadin when if you read studies on ibuprofen or aspirin they have their own side effects that are quite serious.

Also, when Ryan left the hospital they told him he could only take Tylenol for pain no NSAIDs or aspirin because of possible stomach bleeding yet there are many here taking both...I was just curious if this was another myth or the small amount they are taking is not harmful. Sorry this is a little off topic I guess but it has been on my mind.
Cheers,
Theresa

[Bina]

Many of us on ACT take low dose aspirin (81mg coated) .....I took it for 2 yrs and am glad to be off of it.
My stomach is very sensitive and I had nose bleeds from it.

[jojofromct]

I just wanted to add my dad takes an aspirin a day as well as his coumidin - for 12 years now. He does have his INR checked I believe bi-weekly, but when the numbers are off its checked weekly.

[Karlynn]

I just wanted to add my dad takes an aspirin a day as well as his coumidin - for 12 years now. He does have his INR checked I believe bi-weekly, but when the numbers are off its checked weekly.
Just wanted to make sure that you and your Dad know that the anticogulative properties of aspirin are not measured in the INR and do not affect his INR number.

[catwoman]

Also, when Ryan left the hospital they told him he could only take Tylenol for pain no NSAIDs or aspirin because of possible stomach bleeding yet there are many here taking both...I was just curious if this was another myth or the small amount they are taking is not harmful. Sorry this is a little off topic I guess but it has been on my mind.

Theresa:

Aspirin works on platelets; warfarin acts by inhibiting synthesis of clotting factors.

I am on 81mg of aspirin. I have been told NOT to take NSAIDs, but I have once or twice, for really bad back pain. Advil did the trick, so I bought a bottle for those rare situations when Tylenol doesn't help.

[Dina]

I have been unlucky with coumadin. First it took my doctors a week&1/2
just to get my INR at 1.8(target was 2-3),but When I got home it fluctuated
from 1.4-4.8 , all while taking the same amount of coumadin(10MG).
I also had bleeding(gums) and bruising when I was barely in a therapeutic range such as 2.0. Then a couple weeks later I begin to lose my hair--
pretty fair amounts too. At this point I began looking up herbal anticoagulants:o and found that while there were several promising herbs
none had been studied well.
I don't blame the drug for this , but more , I blame my own system and
chemistry. Most of my doctors think the same, that I am one of the VERY few
who doesn t react to coumadin in a stable or predictable way.And in addition
I get all of the rare side effects.
I know someday I may need this medicine, I am hoping that by then there may be more options for ACT, since I know my doc wont be pleased if I tell
him that I will be taking a homemade mixture of cloves ,ginger and garlic in
place of the coumadin:D

[Bina]

I have been unlucky with coumadin. First it took my doctors a week&1/2
just to get my INR at 1.8(target was 2-3),but When I got home it fluctuated
from 1.4-4.8 , all while taking the same amount of coumadin(10MG).
I also had bleeding(gums) and bruising when I was barely in a therapeutic range such as 2.0. Then a couple weeks later I begin to lose my hair--
pretty fair amounts too. At this point I began looking up herbal anticoagulants:o and found that while there were several promising herbs
none had been studied well.
I don't blame the drug for this , but more , I blame my own system and
chemistry. Most of my doctors think the same, that I am one of the VERY few
who doesn t react to coumadin in a stable or predictable way.And in addition
I get all of the rare side effects.
I know someday I may need this medicine, I am hoping that by then there may be more options for ACT, since I know my doc wont be pleased if I tell
him that I will be taking a homemade mixture of cloves ,ginger and garlic in
place of the coumadin:D

Dina, what you experienced is not necessarily due to coumadin.
My hospital stay was 16 days since docs were having trouble keeping my INR in range. I got home, the INR dropped to 1.9 and every day I seemed to lose more and more hair. I also blamed the meds, but it is more of a cumulative effect from the trauma of surgery and being on by pass machines.
I can say this because I am now in my third year on coumadin, have a full head of hair and feel fine.:)

[Dina]

Dina, what you experienced is not necessarily due to coumadin.
My hospital stay was 16 days since docs were having trouble keeping my INR in range. I got home, the INR dropped to 1.9 and every day I seemed to lose more and more hair. I also blamed the meds, but it is more of a cumulative effect from the trauma of surgery and being on by pass machines.
I can say this because I am now in my third year on coumadin, have a full head of hair and feel fine.:)
Thanks ! This is good to know in case I do need to go back on it.
I have a tissue valve , but I also have a history of arrhythmias(A.Flutter),
so who knows if I will stay in sinus rhythm, but I'm hoping:)

[Bina]

dina, I also hope that you stay in rhythm.....I have not, so the Coumadin is a bonus for me.

[LUVMyBirman]

This is an oldie and a goodie;) Great to see an topic from almost 'day one' come to the top!;) Though, I am very happy not to be living my prior 'horror' story!

[zipper2]

Marty;
It'd be a broken record on her if i wrote bout it again
somewhere in my posts triple times,but i don't know as
Ross requested to put in what the inr were at the time,
I never cared to find out i was trying to get outta there
so as to stay alive.:eek:

zipper2