Risk of Stoke vs risk of bleeding to death Mech HVR

[raenderle]

I had my Aortic Valve & Root replaced by a St Jude bi-leaf in 2001 when I was 50 years old.. along with triple bi-pass. My target INR range with warfarin is low with this type valve 2-3 INR.
It never goes above 3 INR...and I try to keep it at no higher than 2 INR
That said however...
I still have had chronic GI bleeding problems of and on for years. Was hospitalized once. Have passed out twice. Blood in stools some times for weeks at a time. Sometimes have to take iron for months to keep pace with. I have had scans....scope tests...no apparent source of bleeding. I am currently very anemic on iron therapy and it limits my physical activity.
Aside from the fact that taking warfarin makes your vitamin K deficient..which bad for your health and has health risks like calcification of your arteries. The risk of death from other sources other than strokes seems to be at least the same if not greater than taking NO Warfarin.
After doing some research on what happens if a Mech. HVR patient takes not take blood thinner. The risk seems small compared to all the lifestyle changes and with include many health problems, bleeding risks and deaths.
In this article
http://chestjournal.chestpubs.org/content/119/2/478.full
Quote
"The incidence of major embolization in prosthetic heart valve patients is roughly 4% per patient-year in the absence of antithrombotic therapy, 2% per patient-year with antiplatelet therapy, and 1% per patient-year with warfarin therapy, emphasizing the beneficial effect of warfarin therapy.5 Although the risk of thromboembolism is present with all mechanical prostheses, mitral prostheses caged-ball valves, multiple valves, atrial fibrillation, and left ventricular dysfunction all increase the risk of systemic embolism.510 The incidence of bleeding increases with increasing age, comorbid conditions such as history of stroke or GI bleeding, and the intensity of anticoagulant therapy"

It in a nut shell the record says that out of 100 people with a Mech. HVR who stop taking Warfarin altogether OVER full years time 4% had a clot event.
Those who took warfarin still had a 1% chance.
It seems to me that that 3% extra risk factor could be narrowed down by taking heathy proven blood thinning supplements and diet like Omega 3 FishOil
Rather than a toxic health threating RX like warfarin
The real problem is NO doctor will recommend the stopping of Warfarin with an alternative treatment for fear of a law suit over the death of a single person.
But if they die of blood loss or clogged arteries...NO problem.
I am leaning towards an alternative to Warfarin.
also go to this link for a REAL eye opener about long term Vitamin K loss
http://www.prohealth.com/library/showarticle.cfm?libid=15421
Any feed back or advice or new info one HOW to get off this poison
would be deeply appreciated

Cheers
Richard E
El Sobrante ,California

 

[Duffey]

Did you find a risk breakdown based on which valve was replaced?

 

[raenderle]

All valves were in the post link
But I know Aortic are the least risky

 

[Lynlw]

I have to read it better, but I don't see where they got that 4% stat, none of the references I saw were on people who did NOT take any anticoagulation for long periods let alone a year, ( and I really can't imagine anyone stopping 100 or any amount of mech valve patients coumadin for any long period, just to see how many had strokes or did great) I did see out of their 2 patients who did not restart coum after their bleed, 1 died in a couple weeks, but no autopsy

 

[dick0236]

Any feed back or advice or new info one HOW to get off this poison
would be deeply appreciated

Going OFF warfarin, for only 3-5 days, by mistake while on a vacation, caused the ONLY problem I have had in 43+ years on warfarin. It caused a stroke that caused permanent partial blindness when I was 38 years old. While there is no way of being 100% certain that my stupidity and low INR caused the stroke....I have not missed any doses since, and have had NO additional problems for 35+ years. After having a life and career alterating stroke, I would not encourage what you are proposing. My range has always been 2.5-3.5 and I try too stay above 3. Your bleeding issues may pose a problem for you and you should work with your docs to minimize the problem. I think that before I went off warfarin, I would have the mechanical valve explanted and have a tissue valve implanted. Good luck and don't play "russian roulette" with warfarin......you will lose.

 

[Protimenow]

Warfarin does NOT make you Vitamin K deficient - it's a Vitamin K antagonist (which means that it fools the body that it's actually Vitamin K, but doesn't exert the anticoagulant effect of actual Vitamin K). As you probably know, warfarin does not 'thin' your blood -- it just makes it take longer to coagulate, and also helps reduce or prevent clots. The fact that something inside you (stomach?, intestines?, colon polyps?) is bleeding and not clotting as it might without warfarin is a problem, of course, but if you go off warfarin isn't it likely that those little bleeders will form clots that might find their way into your bloodstream (and kill or disable you even before a clot on your valve does)?

I'm really not sure of the assessed risk of stopping warfarin for any extended period of time. A considerable number of animal studies were performed to confirm that our bodies DO have the tendency to form clots around the valves.

If you DO go off warfarin, your bleeding problem may or may not resolve -- but it'll probably not matter for a particularly long time -- you may wind up dead or stroking out because of thrown clots. I don't mean to be an alarmist - but I'm not sure that you're interpreting the research appropriately. (Also - even if the risk of clotting IS only 3% more than risk without taking warfarin - that 'small' risk is still too high IF YOU HAPPEN TO BE ONE OF THE THREE PERCENT.)

Think carefully about stopping warfarin. (I know of a man who became depressed and suicidal -- all he had to do was stop his coumadin for a week or two, and he had a massive stroke - not massive enough to kill him, but big enough that he spent his last few months in a nursing home, depleting all his family's savings and, mercifully, dying while there was still some money left).

 

[ALCapshaw2]

OLD School Doctors still tell patients to avoid vitamin K in their diet.

New Studies have PROVEN that consuming a consistent amout of Vitamin K in the diet actually helps to maintain a more steady INR. All that is necessary is to determine what amount of Warfarin is needed to maintain your INR in range with your new level of Vitamin K intake. I eat something green everyday and my INR is quite stable with only a very small variation when the seasons change.

A Surgical Nurse friend told me that there was a study started years ago in Europe on Mechanical Valve Patients taking ONLY Aspirin and NO Coumadin/Warfarin. That study was abruptly STOPPED when several patients showed signs of Clot Formation (I'm guessing strokes or mini-Strokes / TIA's). Experience in South Africa with poorly controlled mechanical valve recipients showed that the On-X valve recipients had fewer 'complications' when poorly regulated than recipients of older valve designs. On-X is the only valve manufacturer authorized by the FDA to conduct Low/NO anti-coagulation studies in the USA on their valve recipients. This study is still on-going with good results to date.

ONE of our former members had a problem with Brain Bleeds and had her St. Jude Mechanical Valve Replaced with a Tissue Valve.
One Certified Anti-Coagulation Care Provider questioned whether her INR was being properly monitored and maintained.

I find it strange that your Doctor(s) have been unable to isolate the source of your GI bleeding.
Have you consulted with a Gastro-Enterologist? or had an Upper Endoscopy to examine your stomach?

There is a prescription drug (Carafate? which I think has a generic equivalent) that is sometimes prescribed to "coat the stomach" to prevent bleeding. You may want to discuss this with your Cardiologist and a GI Doctor.

I would urge you to explore these options and NOT consider discontinuation of your Warfarin.

'AL Capshaw'

 

[AgilityDog]

Lord, I wouldn't stop my warfarin.
My dad had A-fib, and in 1997 had to stop his warfarin to have a "whipple" procedure - very complicated, bloody, veinous surgery involving removal of the duodenum, part of stomach, part of small intestine, and pancreatic duct, as the result of metastatic renal cell carcenoma of the duodenum.
He could not re-start his warfarin for over 1 month while the surgical site healed. Approximately 1 month after the whipple, he had a massive stroke, and died 10 days later.

Dad had to have the surgery, because the cancer was bleeding him out. He had a choice to (i) bleed out, (ii) stop the coumadin stop bleeding and wait for a stroke, or (iii) go for broke to remove the cancer and hope he healed enough to get back on the coumadin before he stroked out. He lost the bet, but damn, he tried. The saddest part is, if he'd had an ablation or a maze procedure, he might not have needed the warfarin at all, because he might have cured the a-fib. So he might have survived the cancer surgery.
And that's just A-fib, not a mechanical valve.


No way in HELL would I stop the warfarin with a mech valve, in any position. Not given the current lack of an alternative anticoagulant or completion of the On-x study if you have a On-x. Hell, I wouldn't even volunteer for that study if I were eligible!!

 

[raenderle]

Thanks for all the feedback...
I hope that everyone realize that this forum is a discussion only and that everyone is responsible for making their own choice.
But I think that is wise to think outside the box...ONE size does not fit all. Doctors go by studies and are scared to think outside the box....Studies are only funded by drug companies for profit . If it not patienable there is no profit so natural alternatives are not looked into.
I had all the Gastro scans ....Negative..
Its true if I stop Warfarin and use an alternative ..I MAY have a stroke..
On the other hand how many people have died from taking Warfarin? Not MAY have died but died....Thousands.
The goal in my mind is to find an alternative.
When I passed out last year walking down a ramp to my boat at a Marina...Because of Warfarin side effects...I could have drowned...luckily I came to on the ramp and had not fell off into the water. Dead from drowning or bleeding to death...or is no different that from a stroke.

There is a new drug called "Pradaxa" which thru Drug Co $$$ studies looks like hope for us who want to get off the Rat Poison.....no tests....no diet...less bleeding
Google "Pradaxa"
Thanks for the feed back....Every post is read with an open mind
Food for thought
go to
http://www.jesus-is-savior.com/Health_Concerns/doctors_are_third_leading_cause_of_death.htm
PS...it is not a Jesus site
Richard

 

[neil]

hi richard well i hope you get it all sorted out as am sure you will .......... sum on here say taking anti coags is just popping a tablet no problems,but there can be major problems for sum,hence a lot of us choose tissue, saying that most people get on just great with anti goags, good luck and as i said you will get it sorted am sure

 

[ALCapshaw2]

What makes you think that you passed out as a "side effect" of taking Warfarin?
Did a Certified Anticoagulation Care Provider give you that information?

I've NEVER heard of that in all the years I've been reading these Forums.

 

[raenderle]

No ..but Doctors did.
You have never heard of "blood loss" while taking Warfarin?? Its THE most common side effect and is VERY common.??When you are blood loss anemic what do you think the effect would be? You have less oxygen to the brain.
After passing out 6 years ago when walking I was Hospitalized for 3 days and was told by Doctors it was caused by blood loss. They stopped my Warfarin...black stools went away..I got better.Blood counts went up.
They did ALL the tests and found no source of bleeding.
It's a WELL know fact that Warfarin causes blood loss in a HIGH % of users...thats why they use it to KILL rats.
When you are really blood loss anemic...if you stand up too fast or move too fast from a sitting position you can pass out. Look up the symptoms of "blood loss"
With all the interactions to food...drink...OTC drugs....RX drugs ...which is problably my problem...its like walking in a mine field out there trying to live my life on this nasty drug.
That why I want to find an alternative to this 60 year old drug
maybe "Pradaxa" will be the awswer

What makes you think that you passed out as a "side effect" of taking Warfarin?
Did a Certified Anticoagulation Care Provider give you that information?

I've NEVER heard of that in all the years I've been reading these Forums.

 

[Philip B]

Bleeding & Stroking

Bleeding & Stroking

Sorry, I don't buy the notion that taking coumadin makes one vitamin K deficient and creates health risks like calcification of your arteries. I would think it would be worth the effort to pursue getting your internal bleeding issue resolved. Sure, you can discontinue coumadin use and take chances with clot issues, but do you really want to take those kinds of chances.

Like Al noted, I've never heard of anyone passing out due to taking coumadin. I've heard of people passing out due to blood pressure problems that weren't related to coumadin use.

About a year and a half ago someone hit me with a motor vehicle and left me on the side of the road for dead. When I woke-up, I was within inches of a moose bog. Geez, if circumstances had been different, I might have landed in that moose bog and drown. I guess there are lots of conclusions I could've drawn from that experience, but the most obvious one is that sharing the road with irresponsible idiots can be hazardous to one's health.

-Philip

 

[Freddie]

Just curious, have you had your bone marrow checked out?

 

[catwoman]

After passing out 6 years ago when walking I was Hospitalized for 3 days and was told by Doctors it was caused by blood loss. They stopped my Warfarin...black stools went away..I got better.Blood counts went up.
They did ALL the tests and found no source of bleeding.
It's a WELL know fact that Warfarin causes blood loss in a HIGH % of users...thats why they use it to KILL rats.
When you are really blood loss anemic...if you stand up too fast or move too fast from a sitting position you can pass out. Look up the symptoms of "blood loss"
With all the interactions to food...drink...OTC drugs....RX drugs ...which is problably my problem...its like walking in a mine field out there trying to live my life on this nasty drug.
That why I want to find an alternative to this 60 year old drug
maybe "Pradaxa" will be the awswer

I don't buy your comments.

Orthostatic hypotension causes you to pass out or feel faint when standing up abruptly when you've been lying down, sitting down, whatever. My husband suffers from that. He does NOT take warfarin. He did take warfarin from May 2007 to December 2007, but he had problems with orthostatic hypotension long before his MV repair & going on warfarin for post-op problems, and again since he stopped taking it.

2. It is apt to be a long time until Pradaxa is approved for mechanical valvers.

3. Educate yourself about warfarin -- find a CACP-certified medical professional (see www.acforum.org).

 

[Lynlw]

I don't buy your comments.

Orthostatic hypotension causes you to pass out or feel faint when standing up abruptly when you've been lying down, sitting down, whatever. My husband suffers from that. He does NOT take warfarin. He did take warfarin from May 2007 to December 2007, but he had problems with orthostatic hypotension long before his MV repair & going on warfarin for post-op problems, and again since he stopped taking it.

2. It is apt to be a long time until Pradaxa is approved for mechanical valvers.

3. Educate yourself about warfarin -- find a CACP-certified medical professional (see www.acforum.org).

Orthostatic hypotension CAN be caused by anemia caused by blood loss.

 

[Lily]

Hi Richard -

Welcome to the site. Sorry for your struggles. I HOPE the other members will offer helpful support, and NOT be UNPLEASANT in their replies.

Have any medical people ever mentioned this possibility to you: hemolytic anemia, from hemolysis? I read about that situation here on this site, that sometimes certain valves can excessively chop up the red blood cells, causing anemia, though I may not be describing what happens correctly. But I know there have been some members here who have struggled with it.

Anyway, I don't have any other suggestions for you other than I hope you don't make any changes without your doctors closely monitoring your situation. Best wishes

 

[toni]

our experience with warfin

our experience with warfin

I have done much research on Warfin and possible alternatives. See, in July of 2009 my husband, age 46 then, had his bicuspid aortic valve replaced - a mechanical valve. His therapeutic inr was 2.5-3.5; usually hovered around 2.5-2.7. On July 27th of this year, he suffered a major hemorraghic stroke - he was in a coma and vent dependent for 12 days. At the onset of the stroke, his warfin was immediately stopped, he required vitamin K and ffp. It wasn't until December 12th that his warfin was resumed, (4 and 1/2 months with no anticoagulation) and at a very low dose - we were aiming for a 1.5 level initially, due to the risk of bleed. His stroke required a craniotomy and he spent over a month in the hospitol. Prior to restarting, we researched alternatives. What we learned is that there are studies (outside the U.S.) where folks are using aspirin and Plavix instead of warfin, but there is not yet data to support this practice. We also found anecdotals of folks who survived for years with no anticoagulation and mechanical valves - these are very few in nature. Last week my husband stroked again - this time a "shower" - several tiny clots showered throughout the brain - a TEE found a clot on the valve. As I write, he is yet in surgery, almost 11 hours at this point, to replace his valve to a tissue valve. We're not out of the woods yet.

I share, because I believe that there are no absolutes; there are real people behind the numbers and any decisions must be made on an individual basis with qualified professionals whom you trust.

 

[Lynlw]

I have done much research on Warfin and possible alternatives. See, in July of 2009 my husband, age 46 then, had his bicuspid aortic valve replaced - a mechanical valve. His therapeutic inr was 2.5-3.5; usually hovered around 2.5-2.7. On July 27th of this year, he suffered a major hemorraghic stroke - he was in a coma and vent dependent for 12 days. At the onset of the stroke, his warfin was immediately stopped, he required vitamin K and ffp. It wasn't until December 12th that his warfin was resumed, (4 and 1/2 months with no anticoagulation) and at a very low dose - we were aiming for a 1.5 level initially, due to the risk of bleed. His stroke required a craniotomy and he spent over a month in the hospitol. Prior to restarting, we researched alternatives. What we learned is that there are studies (outside the U.S.) where folks are using aspirin and Plavix instead of warfin, but there is not yet data to support this practice. We also found anecdotals of folks who survived for years with no anticoagulation and mechanical valves - these are very few in nature. Last week my husband stroked again - this time a "shower" - several tiny clots showered throughout the brain - a TEE found a clot on the valve. As I write, he is yet in surgery, almost 11 hours at this point, to replace his valve to a tissue valve. We're not out of the woods yet.

I share, because I believe that there are no absolutes; there are real people behind the numbers and any decisions must be made on an individual basis with qualified professionals whom you trust.

I am SOO sorry to hear this. I will pray for your husband and you

 

[ALCapshaw2]

No ..but Doctors did.
You have never heard of "blood loss" while taking Warfarin?? Its THE most common side effect and is VERY common.??When you are blood loss anemic what do you think the effect would be? You have less oxygen to the brain.
After passing out 6 years ago when walking I was Hospitalized for 3 days and was told by Doctors it was caused by blood loss. They stopped my Warfarin...black stools went away..I got better.Blood counts went up.
They did ALL the tests and found no source of bleeding.
It's a WELL know fact that Warfarin causes blood loss in a HIGH % of users...thats why they use it to KILL rats.
When you are really blood loss anemic...if you stand up too fast or move too fast from a sitting position you can pass out. Look up the symptoms of "blood loss"
With all the interactions to food...drink...OTC drugs....RX drugs ...which is problably my problem...its like walking in a mine field out there trying to live my life on this nasty drug.
That why I want to find an alternative to this 60 year old drug
maybe "Pradaxa" will be the awswer

I've been reading these Forums for MANY Years and have NEVER heard of excessive blood loss from taking Warfarin. I've NEVER heard of anyone reporting problems similar to those you report on these forums. I also find it hard to believe that if you truly were loosing blood in your stools that a source of the problem could not be found. I have to wonder about how well your INR was managed. BTW, THE Most Common "side effect" of taking Coumadin / Warfarin that I am aware of is BRUISING, and NOT Blood Loss. I'll ask my (very knowledgable and well trained) Coumadin Clinic Nurse Practicioneers about your claims.

It IS a fact that Coumadin / Warfarin has a Narrow Theraputic Range which is why it is monitored regularly. KNOWLEDGABLE Anticoagulation Care Providers (or self testers /dosers with appropriate dosing guides) are able to maintain stable INR's in the Vast Majority of Cases. Rat Poison uses the same basic drug in MUCH HIGHER CONCENTRATION than is used for anti-coagulation control in humans. To associate the two purposes distorts their relationship and promotes FEAR. Is that your goal for this thread?

OLD School Doctors and Nurses whose anticoagulation training is Way Out of Date are OFTEN the cause of anticoagulation 'mishaps' due to POOR MANAGEMENT, typically over-reacting to slightly out-of-range results resulting in dosing recommendations that end up causing the notorious Roller-Coaster Effect.