If you have to stop warfarin

[Guest]

As warrenr pointed out there are guidelines for some procedures but they are not widely followed. Part of this reason is that the guidelines are based on opinion and not on good, scientifically-designed trials. Patient opinions can also influence how doctors make decisions.

I am going to be giving talks to some groups of doctors and I thought it would be useful to have the results of a poll.

I will incorproate your opinions into the talks.

 

[Karlynn]

Clotting - #1 - by a great majority
Wrecking my valve - #2 - a serious concern
Bleeding to the point of needing a transfusion - #3, have those bags ready, you can't undo a thrown clot.

 

[Ross]

For me, it was close between stroke and wrecking the valve, but stroke takes the vote as I don't want to be a living vegetable. If the valve is screwed, there's at least a remote chance that I might still make it.

 

[fyrfytr]

Same for me. A stroke is a big concern as is the wrecking of the valve.
Take Care

 

[tommy]

I'd rather bleed than clot

I'd rather bleed than clot

Since I can only vote for one, the fear of clotting has to get my vote. However, I get more concerned with bleeding when the procedure is internal where I can't inspect it.

Here was my test for answering the poll. This may be TMI, but here goes. Was my fear more relieved when I was allowed to resume anticoagulants after colonoscopy, or was I more relieved when my first stool was not bloody? Okay, you wise crakers, I'm talking about emotional relief here.

The answer is..............anticoagulants. Lovenox is the drug I love to hate. I was unprotected for 24 hours and was glad to be back on the sauce.

 

[Johnny Stephens]

Well considering I almost died after my surgery, this isn't a slam dunk; but I guess the idea of stroke is more terrifying than the very high risk I would have for a 2nd surgery.

 

[KristyW]

Like the others

#1 fear...having a clotting/stroke event.

#2 - wrecking my valve

#3 - bleeding

I've just had MAJOR go arounds with my PCP. I've started exercising regularly and eating VERY healthy, so my INR has really taken a nosedive. My PCP is the conservative type, and he didn't want to raise my dosage too much. After 4 weeks of 1/2 pill increase two days a week, then 3, then 4 days, I put my foot down and said "This is what I'm going to do." He was quite taken aback, but his little 2 1/2 mg increases per week weren't touching the situation. I'm finally back up to 2.1, but my guess is that I'll have one more increase before I'm done. What a headache.

I had to argue that by not stepping up and increasing my dose by 10-15%, they're putting me at risk for a stroke. I had to emphasize that I'm much more afraid of a stroke than a bleed. Basically, logic won out. When I asked, "What can you do for me if I throw a clot and stroke out?", "What can you do for me if my INR is over 7 and I cut myself?" When it dawned on him that there was treatment for the bleed, but not the stroke, he grudgingly agreed. UGH!

I firmly believe that Dr's are taught from the beginning, "Avoid bleeding at all costs." So many of them seem to be afraid of us "coumadiners" bleeding to death, that they'd rather put us at risk for stroke or another valve replacement than deal with a little more blood. :::shaking head:::

 

[Ross]

Well considering I almost died after my surgery, this isn't a slam dunk; but I guess the idea of stroke is more terrifying than the very high risk I would have for a 2nd surgery.

It certainly has a way of making you think for a moment what is more important doesn't it Johnny? I hesitated for a moment then figure I know I don't want to live as a vegetable, so stroking out is more important. We may or may not make it through another surgery, but we are at least afforded the chance.

 

[Karlynn]

I firmly believe that Dr's are taught from the beginning, "Avoid bleeding at all costs." So many of them seem to be afraid of us "coumadiners" bleeding to death, that they'd rather put us at risk for stroke or another valve replacement than deal with a little more blood. :::shaking head:::

I think you hit the nail on the head.

 

[Harpoon]

Perhaps I'm a little "under-educated" when it comes to anticoagulation therapy and it's risks....


Quite frankly, I never really got any kind of a "lecture" on warafin treatment before or after my surgery. I suspect that it kind of slipped through the gracks given all the OTHER stuff I went through, or maybe they DID give me the lecture but it was during that wonderful, drug-enduced, haze that I exsisted in during 5 weeks of my life that I simply do not remember ever living right after surgery....


Yeah. That's a REALLY good time to ask me if I understand what I'm being told, much less remember any of it.


Anyways. I don't remember being told anything about anticoagulation therapy other than I was on it for the rest of my natural life but even then I suspected I just knew that part.


Can I ask CCF for a refund for that? Maybe I can sue them for millions or something, failure to disclose serious health risks or something.

Nahhh.... They quite literally saved my life at least half a dozen times.


I know there's a risk of stroke. I know there's a risk of bleeding out, not neccesarily from an external wound, but internal bleeding that may be brought on as simply as screwing the INR up too much.

The risk of stroke seems most pressing, those can be REALLY hard to treat and even if you're not a vegetable afterwards, even minor impairment can be life altering. I had one life altering experience, I don't need any more thankyouverymuch!

As far as wrecking the valve... I think that's probably the least serious of the three, or at least tied with bleeding. I've got a fairly advanced design created after 30+ years of artificial heart valve research and use. I don't have other "associated" factors like high cholesterol or high blood pressure. I'm not an at risk patient, non-smoking, no alcohol or drug use. Most of my deceased family (on both sides) of advanced heart disease in their late 70's my mom's parents are both in their mid-ninties and are still reasonably self-sufficient, living at home. Granted, their home now is on my aunt's farm less than 100 yards from my aunt's house and they see eachother nearly every day, but they still maintain their own house, a garden. My grandfather still does some woodworking and still drives. They are far from being shut-in or one step from the nursing home.

The valve could either "throw a clot" or succumb to calcification. Both of those involve having poorer cholesterol and diets/lifestyles than I have.

It's a risk, all three are, walking across the street is a risk, jumping into the shower during a thunderstorm is a risk.

How big of a risk is it? I think that's what a lot of people, including doctors, have to sort out for themselves (or their patients.)

 

[Nancy]

This is a tough choice for friend Joe, so I couldn't vote.

He's already had a bleeding incident requiring 33 units of blood products post-surgery for his gallbladder. He was on Lovenox bridge therapy for that. But the bleed was no doubt a combo of "other things happening" and the Lovenox bridge therapy.

If he were to have a stroke, it would be absolutely devastating for him and for me. And he would probably lose his life, if not immediately, then shortly after. He has too many serious medical problems.

Wrecking his valve would be equally disastrous. He is extremely high-risk for surgery, and he would probably have to go to a place like CCF to get it done, if it could be done at all.

It is absolutely essential that any bridge therapy that is done is the least likely to cause any kind of event, and that would be a Heparin drip and a hospital stay, as inconvenient as that is. We have both discussed it at length, and agree that this is the only option for him. AND we will both be very proactive with this scenario. No other choices for him.

 

[Gisele]

Coming from someone who has bled multiple times and had a stroke, I would take my chances with the stroke. I used to think that bleeding would be a better option than stroking because at least the bleeding could be controlled, but what I have learned the hard way is that bleeding can cause a lot of damage before they get it under control. Also it is very painful.

As far as the Lovenox, I bled in my hip with that once, and I was on Lovenox for a low INR the week before my second subdural hematoma. I think that the Lovenox got the ball started with that bleed.

I think that there is no easy way out with problems that arise with being a Coumadin patient. All I can now say is "good luck"...............

 

[catwoman]

1. Stroke/clot
2. valve going out
3. bleeding

 

[Rich]

Have to agree with Ross.
A stroke scares me more than death itself.
I have seen people who suffered devastating strokes and it wasn't pretty.
Even those whose brain function survived were locked in a body who couldn't walk or talk. You could just read the grief and frustration in their eyes.

 

[Ross]

Have to agree with Ross.
A stroke scares me more than death itself.
I have seen people who suffered devastating strokes and it wasn't pretty.
Even those whose brain function survived were locked in a body who couldn't walk or talk. You could just read the grief and frustration in their eyes.

Exactly! If I'm ever found like that, shoot me. I do not want to live like that.

 

[John & Joann]

This is also difficult for our home. Joann is alergic to Heaperin, has had a stroke, and has faced this issue several times.

1. fear of stroke
2. valve failure
3. bleeding issues

If in doubt, I would rather bleed that EITHER of the first 2. Changed dentist because of this issue. Cleveland Clinic STRONLY supports my position.

Still clicking since 1971!!!!!!

 

[Sherry]

1. stroke/clot
2. internal bleeding
3. valve going out

I, like many of the others, fear stroke more than anything. Also, Kristi made some very good points about the management of our INRs. I'm so lucky in that I've found a Coumadin clinic in which the nurse and I BOTH make decisions on my dosage. She honestly listens to my concerns and what I have to say about dosing changes. I've been on this drug for seven years, and she knows that I am very in tune with my fluctuations. No point in this rambling other than to give her a thumbs up

 

[Gisele]

I don't think a patient has a choice in whether or not a bleed or a stroke will occur. All you can do is try to keep your INR in range and to try to avoid a too high or too low INR so that no damage will occur. My bleed came while my INR was in range. You just have to be careful and be aware of all the signs of stroke and of bleeding so that you can get treatment quickly.

Stopped ticking in 2004!!

 

[Raverlaw]

I have to agree with the majority, even though I'm relatively new to this game. Kristy makes an excellent point, and I had that discussion with my PCP when I switched my coagulation management to him. I told him I prefer to keep my INR at the high end of the range (over 3) so that exercise, diet, etc. are less likely to cause it to fall suddenly to the dangerous range.

Bleeding I can deal with, and I don't lead a particularly dangerous life (other than getting into a car every day!) but the thought of being vegetable-ized and the burden that would bring to my family is more than I can bear. If the valve goes or I have a serious bleeding event, I'll put my faith in the doctors - if they can save me, great If they can't, then it's over . But I'd much prefer death to lingering on in a body that won't function for you. As Ross said, just shoot me if you find me that way one morning.

 

[ticktock]

Old topic, but to throw in my 2cents.....
stroke
bleed
valve failure ( too late!! already did)

I have had 2 abdominal surgeries due to bleeds, both emergency. BOTH times, my INR was in "range". So.... what does that say?? I dunno.

I have had 2 strokes, and have TIA's pretty regularly. The strokes stink. You never know what you are gonna lose. So far I have not lost my bridge playing ability, my unbelievable fishing skills, or my sense of humor. I'm LUCKY! Bad thing about that is that luck eventually runs out. 26 years on Coumadin, keep your fingers crossed!