Coumadin separating myth from fact

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D

Doug

I am facing aortic valve replacement in about a month. I have yet to choose which type of valve I want as I have heard/read conflicting information about the lifestyle change once you start on Coumadin. I have heard that Coumadin leaves people lethargic, and that a minor fall can become life threatening. Can anyone tell me if that is true.

Some web-sites almost look like a commercial for a given product, which now has me confused. Until yesterday, I thought a mechanical valve was the way to go, but now I am not so sure.

I would greatly appreciate any information/experience that anyone may have.
 
Doug,

You've come to a good place for information. Lot's of folks have the perception that there is little life while on Coumadin. Far from it.

Lethargic? Haven't seen that one reported.
Minor fall - life threatening? Hardly.

Check out the "Active Lifestyles" forum in here and see runners, cyclists (with helmet), hikers, etc. The activities listed in your profile are all okay.

Sure, there are reasonable precautions you should take and some "contact" activities to avoid, but be sure to live life to the fullest on your second time around. :)
 
Al Lodwick is our special friend here. He is a Coumadin manager and certified expert on Coumadin. He helps many people out on the Anticoagulation forum. He has a terrific website and answers many of the myths.

http://warfarinfo.com/
 
Welcome Doug, I'm glad you found us. Do you mind telling us how old you are?

You are so correct in thinking there is a lot of misinformation that goes around about Coumadin (generic name: warfarin). It is a serious drug, that needs to be taken seriously. But it is a life saving drug. Unfortunately to hear what some people have to say, you'd think it was a life-ending drug. It is also not a life-style ending drug.

Coumadin does not make you feel lethargic. You eat what you want, and drink what you want (no binge drinking please) and then adjust your Coumadin dose accordingly. The key is consistancy, which most people really are. The average person doesn't really vary their diet all that much. You just wouldn't want to have a spinach salad every day for 2 weeks and then stop for 2 weeks. For the most part, you do what you want too, with a few exceptions. We have many members who are accomplished athletes who use Coumadin. You test your blood anywhere from 1 time a month, to 1 time a week.

Unfortunately there are still some in the medical community who think they know about Coumadin, but really don't have a clue. They operate off old information from 15 years ago and haven't bothered to update their knowledge.

We are so fortunate to have a warfarin expert as one of our members here. Al Lodwick is a pharmacist and anticoagulation expert who has his own site with tons of information. www.warfarinfo.com is a great place to get to know.

Welcome, make yourself at home here and feel free to ask any and all questions.
 
I agree with Tommy and Karlynn. This site has a large population of Coumadin (warfarin) users, and I have never seen a post or even a mention about Coumadin-induced lethargy. Sounds like someone was using it for an excuse, or was mixing it up with other medications they are taking, such as blood pressure prescriptions, which are famous for causing lethargy in some patients.

As far as Coumadin: Forget about bleeding to death while shaving. Forget about that minor fall hurtling you into the grave. Forget about never being able to eat vegetables again. Balderdash. Old wives' tales. Even some doctors, nurses,and receptionists still recite this ignorant liturgy, having never acquainted themselves with an actual user community like the one that visits here.

The bleeding concern is centered largely on intracranial and gastrointestinal bleeding. You have to hit your head pretty hard to do that much damage to your melon. You would likely be in somewhat more risk with a spleen injury from an auto accident. But it's likely that the difference in chances for a warfarin user vs. someone not on ACT (AntiCoagulation Therapy) is a much finer line than you'd suspect. We've had a few post here after a solid noggin thump, on their way to the ER, believing they might be typing out their last, only to be embarrassingly alive and healthy the next day.

Not that it's without its drawbacks. It does inflict some discipline on your life. It does mean being more regular with what you eat (not punitively, but some care to avoid a wandering INR), not missing your dose, having to wait at labs, blood testing, bridging therapy for some medical procedures, interactions with other drugs, the ignorance of dentists, and some concerns about poorly-trained medical personnel at the local ER.

However, one of the things it does do is allow the use of a permanent pyrolytic carbon valve, which will greatly reduce your likelihood of having another heart surgery. In fact, if your only heart issue is an aortic or mitral valve problem, you will probably never need OHS again.

Take some time to read through the Coumadin forum to familiarize yourself with the pros and cons. There are people here who've taken it for decades, and they live normal lives. Generally speaking, the life expectancy is about the same over time for mechanical and tissue valves, being improved for carbon (mechanical) valves in younger people, and being slightly better for tissue valves (xenografts) in the retirement crowd.

Best wishes,
 
Doug

Doug

Will try to make a long story short.:p I have been on Warfarin for 4 years..Age 65...NEVER bruise or bleed..:) ..I am a very active Granbonny that runs, jumps, get knock down, ect..by an age 13 year old Grandson..and an age 4 year old Grandson and an age 2 year old Granddaughter.:p :p :p .when they run and jump on me..the only thing I feel..the next day..is muscle soreness.:D :D :D NEVER a bruise..:) the last time I notice a slight bleed was when Ross(Our moderator) and I got a kitten 4 years ago.:D :D the same time. Seems like they liked to climb our legs.:D Now, mine is age 4...Don't know what Ross did with his?:D Was sunbathing today...Looked at my Bod..:D Nothing there..no brusies, ect.....Lethargic?No way...:D Taking our motorhome down to local lake for long Easter weekend.Where my Grandkids will be with us for 3 days.:) Bonnie
 
PS-:)

If you decide to choose mechanical, I would highly recommend having a doctor who would support you home testing ASAP after surgery. It's much more freeing than having to go to a Coumadin Clinic or lab to get your INR tested. It's very similar to the way diabetics test their blood sugar. You stick your finger and put a drop of blood on a strip and put it into a machine. A few minutes later you have your INR. You would then call in the number to your doctor and he/she would make changes if necessary. After a while, you'll most likely learn how to dose yourself as many of us do.
 
Welcome Doug.
I have been on coumadin for over 25 years. Have raced sailboats, rode dirtbikes on back road trails, scuba dive, use sharp knives, electric slicers, eat what I want, drink occasionally, have had 2 OHS & a hysterectomy after going on coumadin, etc., etc., etc. I do more than my 2 "healthy" sisters combined.
Don't mean to imply it's no big deal but it is not life altering other than the fact that it keeps me alive.
As far as falls, unless you are planning on falling off a 10 story building, there is little danger. Bruising can be interesting and quite colorful but, as Bonnie mentioned, some people don't even bruise much.
Please don't listen to the horror stories. Make your decisions based on your lifestyle and, unless you do things like skydiving, body slam wrestling or professional football, you should be fine on coumadin. To say nothing of the real possibility of the first OHS being your last.
 
Lethargic????

Lethargic????

Lethargic????? Oh my, if only Nathan WAS a little lethargic, my life may be a whole lot less stressful.

My husband is 6+ months post AVR w/mechanical valve. He is 34 and is a very busy guy....spent the winter snowmobiling, every weekend. We just purchased new helmets for the Harley today (MATCHING even!!) and this is just the tip of the ice berg. Do you research. Coumadin is something you need to think about ever day, and yes...there is risk. He did have a pretty big fall at work, and he is lucky he didn't hit his head on ice. Home monitoring has been a blessing, and we both are so thankful for the folks here who helped us down that road. Look into the new On-X valve, with a potential for lower anticoagulation needs. Good luck with your research!

Ann
 
Hi Doug,
I am not on coumadin yet. I am going for surgery in July. Unlike many others I didn't know about coumadin until I found this website so had no bias against it. I have learned quite a bit about it in my time here. I would prefer to not take it but then again I would prefer that I not have sugery. I have reasons for not wanting to take it:
1) I don't like needles so don't like the idea of self testing ( although that is what I would prefer if I had to do it).
2) I am horrible about taking medication everyday and would prefer not to take any.
3) the idea of bridging therapy doesn't thrill me.

I live a very active life, some of my activities I feel would be safer without coumadin, for example I enjoy solo backpacking trips. I am not concerned I will die but I am concerned that if I have some injury it will complicate my getting off the trail. the same thing with mountain biking, after the surgery I will wear freeride gear to protect myself. Again, it's not from a fear of death from injuries but more a convenient excuse to wear extra protection since I don't like to get hurt anyway.

At my age the choice between tissue and mechanical was fairly easy. If I went with a tissue I would be looking at a reop while my kids were teenagers. The mechanical will last for, what, my life span? I would rather deal with coumadin then a reop that would take me from my kids.

As the others have said, go have a look at Al's website.
 
Hi Doug and Welcome! I've been on Coumadin for 25 years this coming August following a mitral valve replacement with a St. Jude mechanical. I was 29 at the time, and our children were ages 5, 3, and 3. I was so busy running after my 5 year old daughter and 3 year old twin sons that I rarely thought about my Coumadin. I didn't take it lightly, but it certainly didn't rule my life. I had my blood tested and took my Coumadin as I do today. I home test now, and it's so easy. I had one bad bleeding episode, but it was right after the valve was put in, and the testing of Coumadin back then was not as efficient as it is now. I rarely think about what I eat. I play tennis, ride my bike, snow ski, climb ladders, etc. I agree with what others here have said about the ignorance of some people in the medical profession concerning Coumadin. I once had a nurse in the hospital tell me not to shave my legs. That was about three years ago. I really had to stiffle myself when I heard that one. Of course, I've always shaved my legs and haven't bled to death yet! I also use the knives in the kitchen and clean up broken glass. The only thing my doctor told me when I started on Coumadin was...don't play football, and don't skydive. That was OK with me. Everyone has their own reasons for the type of valve they choose. I know it can be a hard decision. My surgeon didn't ask me so I guess it was easy for me. Anyway, I feel the doc made the right decision for me as it's been almost 25 years since my last OHS. Get all the info you can on the different valves and ask lots of questions. The people on this site are really helpful and have many experiences to share with you. I learn something new here everyday. Keep us posted on how you're doing. LINDA
 
Thank you so much for sharing your support and experience

Thank you so much for sharing your support and experience

I would like to thank everyone for sharing your experiences with me. I know now that I have a place I can come to get good information that will help me to make an informed decision. The information you all have shared already has be breathing a big sigh of relief.


I apologize for taking so long to get back to you, but I am not very well versed in the internet and am trying to learn how to navigate the web-site. However, I am hoping to spend enough time here to become an expert.

Thank you all again so very much, it means a lot to have this great support network.
 
Doug said:
However, I am hoping to spend enough time here to become an expert.

You better, we count on it! All we ask is that when you've had your surgery, you come back and offer your experience to other new comers that are just as scared and befuddled as you are now. ;) :)
 
Joann has been on Coumadin for 34.5 years. Still doing very well. There are issues that you learn to live with every year. She does not do active sports, but we live an ACTIVE lifestyle.

We both believe that it is more of an issue if you need repeat surgery or surgery for other medical issues.

Joann eats a normal diet and her PT remains fairly constant. We believe in the coumadin clinic and do not believe the a GP or his nurse should manage the coumadin. We both know enough to do it ourself, but we prefer the assistance of the pharmacist. She also watches for other issues every month.

Hope that this helps!
 
maybe I'm changing m mind

maybe I'm changing m mind

I have to admit that after my first surgery I had those misconceptions about Warfarin. I'm 55 and don't relish a third surgery. this site is begining to reverse those misconceptions. Maybe a mech valve is ok??
this choice will only have to be made if Dr. Werner can't repair the repair.
thanks for the info

this site is a great comfort.
 
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