Do you have a coumadin horror story?

[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]

horror stories

horror stories

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 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

 

[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 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

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.

zipper2

 

[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.

I missed your post, sorry. My number was 10.2!!! I'm darn lucky to be alive I know. Coumadin is a horrible, but necessary drug! It's not only the danger of bleeding to death (my late husband did after surgery), but it's the tiredness, hair loss, capillary bleeding, etc. that makes it even more horrible to live with. I tried going off it once, and paid a price for it, and so I live with the horrid side effects and danger. I am anxiously awaiting for a SAFE alternative!!!