New to site and dreading coumadin

[afraidofsurgery]

Hi, I'm new to the site and I have been followed for about 10 years by a great cardio at Rush Pres-St. Lukes in Chicago for aortic valve replacement - annual echos, biannual doctor visits. So far I continue to be asymptomatic but anticipate I can't put off surgery indefinately (I'm 43).

I have an active lifestyle and since I work in the med ed field I can read PI's and coumadin looks like a nightmare. But what I glean from your comments, it might not be as bad as it sounds. Reason I ask is I'm leaning towards a mechanical valve - I'm a "show me the data" kind of person and among other articles I recently read a 25-year study of St. Jude valve patients (Emery et al, Ann Thorac Surg 2005;79:776-83). I like the idea of a tissue valve but don't like the lack of longer term data. But of course coumadin introduces clotting/bleeding risks that you can see in the abovementioned study. Yuk.

In any case, will I really have to eat the same thing every day? What about travelling? Sex? Is coffee OK? I'm imagining my feet will bleed if I run, but I know my imagination's gotten carried away. Can anyone give me a "snapshot" of lifestyle changes post-coumadin and how frequent monitoring occurs?

Thanks,
Patty

 

[Bionic Valve Tim]

Welcome to the board, Patty.

I have to admit that my lifestyle hasn't changed a bit since my surgery. That's not to suggest that my lifestyle *shouldn't* change, but I think the people around me would confirm that it hasn't.

Right after the surgery, I was worried about bleeding to death from my razor, I fretted over the vit-K content of every meal, and I denied myself anything more than occasional alcohol.

Since then I've relaxed and stopped worrying about Coumadin. I'm hard-pressed to think of any substantial changes that are due to warfarin. I'm taking care to exercise more regularly and I've cut out a lot of junk food, but those decisions were made because of their overall health benefits, not any worries about my medication.

I played ice hockey until about a year before my surgery, and in another year or so I'd like to resume. However, the decision to stop playing was financial not medical/physical, and my decision to wait now is also financial.

For me, coumadin coumadin fears have been all light and no heat. That's just my experience, and I'm sure others will chime in with their thoughts.

Good luck with your decisions. It sounds like you're educating yourself, which is the most important step IMHO. Keep us posted when you make your choice.

Tim

 

[Guest]

In any case, will I really have to eat the same thing every day?

Nope!

What about travelling?

I didn't let coumadin stop my travels ... and I love road trips .

Sex?

Yes, please .

Seriously, while I wouldn't know what this is, I know it can be done...even on Coumadin.

Is coffee OK?

I wasn't told to avoid it....

I'm imagining my feet will bleed if I run, but I know my imagination's gotten carried away.

Yes, yes it has. When I was told I would need to be on Coumadin for a bit after my last open heart surgery, I envisioned cutting myself on a sharp part of one of my MCs while cleaning it...and bleeding to death in the driveway. That, of course, did not happen.

Can anyone give me a "snapshot" of lifestyle changes post-coumadin and how frequent monitoring occurs?

Monitoring occurs frequently/infrequently, depending on how easy you are to be regulated on the amount of Coumadin you need for the required INR levels, per your doctor.

BTW, I see you are in the Chicagoland area ... quite a few of us here . You just missed our gathering at Fermilab in Batavia IL on May 14....


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Raverlaw]

Coumadin/warfarin isn't that big of a deal, really. Take it every day, around the same time of the day. Eat sensibly. Take care of yourself. Don't binge eat or binge drink anything - but almost anything is Ok in reasonable quantities. That's it!

I decided to trade the certainty and long-term performance of a St. Judes (at age 49) for the minor inconvenience of warfarin. I'm certain I made the right decision for me. I have a good friend who got a tissue valve at age 57 about 5 weeks before me. He's happy with his decision, too.

 

[geebee]

Welcome to the site.

Coumadin is not a big deal providing you treat it with respect. Coumadin is kind of like the weather. You want to take it into consideration when planning your life but you don't let it interfere with anything really important.

The key word with coumadin is consistency. That does not mean eat the same thing every day but, you want to learn about Vit. K content in foods and avoid large quantities of those unless they are regular items on your "menu". In other words, if you like spinach salads, eat them regularly and the Vit. K content will be factored into your coumadin levels. Coumadin patients come to learn what affects their INR & what doesn't.

You won't bleed from running unless you run on glass or sharp rocks. You don't have to live in a plastic bubble. I travel all the time (auto, planes), sex is not an issue unless you are into S&M (sorry, you asked ), coffee is fine unless you have heart rhythm issues and alcohol is fine in consistent moderation (same as everyone else in the world - just not always followed ).

In short - NOT A BIG DEAL. This is coming from someone who has been on coumadin for almost 25 years. That being said, valve choice is so very personal and I would never presume to tell someone what to choose. However, I think it is very important for people to make choices based on fact and not rumors.

Best of luck to you whatever you decide.

 

[Ross]

There is so much disinformation, urban legends, tall tales, etc about Coumadin that it's beyond ridiculous. Coumadin simply and when properly managed, prevents your blood from clotting on the valve. The first scare is what you hear. 98% is pure B.S., the second is, it's hard to find a place that really can manage Coumadin patients. They are out there, but you may have to go to a few to find the best.

I have not stopped one thing that I like to do while on Coumadin. I still work on cars and cut my hands to pieces. Shave and nick my face apart, get scraps and bruises like a little kid and none of them has killed me yet. Now you may not want to do such things as sword fighting, Russian Roulette, or extremely dangerous things, but there is no reason why you cannot go on and enjoy life to the fullest. Your having this surgery to save your life and live it, not to restrict and destroy it.

See our resident experts site for all of your Coumadin Questions at www.warfarinfo.com Al Lodwick can also be found here in the anticoagulation forum.

 

[Ross]

In any case, will I really have to eat the same thing every day? What about travelling? Sex? Is coffee OK? I'm imagining my feet will bleed if I run, but I know my imagination's gotten carried away. Can anyone give me a "snapshot" of lifestyle changes post-coumadin and how frequent monitoring occurs?

Thanks,
Patty

Eat what you want and dose around the diet, don't diet the dose! This include dark green vegetables and other things high in vitamin K that you've probably been told you can no longer have. Pure Nonsense!

Sex-Hey I'd take all I can get and then some. I guess some folks still have sex life.

Traveling-What does blood clotting have to do with traveling? Nothing at all. Go and have fun!

Coffee-I'm probably one of the biggest coffee freaks on this board. Don't know how many gallons I've drank now, but I'm not about to stop!

Now your feet may bleed if you happen to be running on shards of glass. This is not advisable, but can be dealt with.

Bottom line is, you simply bleed a little longer then a normal person. No big deal if your managed correctly and stay within your therapeutic range. Takes some practice, but if all of us can do it, you sure can too!.

 

[Marguerite53]

Hello

Hello

Hello Patty,

There are several of us in the long term waiting room, here. You have come to a very good place. This community will help you quell your fears. Keep asking questions, do not be reluctant. You will get information or be led to information that will help ease your concerns and assist you, in caring ways, to make a good decision for yourself.

When my 3 kids were teenagers (one left, almost 18!) they would moan if I went on and on about something. TMI !! Too Much Information!! I don't think that can happen here. Every dose of information you get is beneficial. And you get it here with so much genuine care and support.

Welcome. Visit often.

Marguerite

 

[Mary]

I'll chime in behind Marguerte and extend a warm welcome .

As she stated, there is a wealth of information on the site.

If you read Al' Lodwick's site, and check the posts on both the anti coagulation and post surgery forum, you'll see for yourself what coumadin involves.

I do know that your feet won't start bleeding while running!

 

[Guest]

Patty,

Ask and ER doc or nurse if they ever have seen a patient who bled to death from a cut to the arms, legs or torso. They will all tell you about crush injuries in car accidents that probably would have died anyway but I have never found one who could give me an exapmle of a fatal cut.

 

[Karlynn]

Most of what you read or hear that's scary about Coumadin falls under the Old Wives Tales catagory. For instance, some "old wives" would freak out if they knew I spent all of Memorial Day in my back yard with a chain saw. We've heard silly things like - make sure all your kitchen knives are dull. In the 13.5 years I've been on Coumadin, I've tried many times to slice off a knuckle or a finger while chopping vegetables. I may have bled a little bit longer, but I certainly didn't bleed to death.

Al Lodwick will be your best "go to" man for any information involving Coumadin (warfarin). He is a registered anti-coagulation specialist with his own clinic and has a web site just chock full of information www.warfarinfo.com I rest easy knowing that Al "has my back". He travels world-wide speaking to medical professionals about anticoagulation treatment.

Many of us home test. I test once a week, some test once a month. It just depends on how stable you are.

I've traveled to Italy, Greece, Turkey and France while on Coumadin - and had a blast! I drink wine regularly and have an occasional Cosmopolitan or other cocktail. I'm not terribly athletic, but I do workout regularly. We have many serious athletes here who are Coumadin users. I will admit that I don't really understand how an active lifestyle is a contraindication for Coumadin. But this is a concern we always hear. There, in reality, aren't too many activities where you shouldn't be on Coumadin. I was told I shouldn't ever ski. And I don't. But that is because I was a horrible, just plain awefull skier before my surgery. If I'd been good, I'd probably ski. I used to rollerblade with my kids when they were younger. But I always wore the knee and hand guards.

I will be very honest and say that the thing that does scare me about Coumadin isn't really what my body does on Coumadin, but what it does when I'm NOT on Coumadin. I have yet to have a procedure where I'm required to stop my Coumadin. But I'm reassured by the many members here who have done so successfully. the tragedy we hear about here, are from those who were told to stop Coumadin for procedures that didn't require it being stopped, or were stopped and not given bridging therapy.
The saying we all like is "It's easier to replace blood cells than brain cells."

So welcome, from another Chicagolander. Make yourself at home and let us help you decrease you anxiety over you upcoming procedure.

 

[bvdr]

Patty,

Ask and ER doc or nurse if they ever have seen a patient who bled to death from a cut to the arms, legs or torso. They will all tell you about crush injuries in car accidents that probably would have died anyway but I have never found one who could give me an example of a fatal cut.

Al, the only patient I ever saw bleed to death from a cut to the torso was a young man who had crawled inside of a lumberjack's saw to unstick something. One of the other loggers didn't know he was in it and turned it back on. He was almost cut in half. Other than that, even with traumatic amputations to limbs, I've never seen anyone with injuries to those areas bleed out.

Patty,
Warfarin presents challenges but it is truly manageable.
You may obsess about it at first but it soon finds it's own little corner in your life. Also...welcome to this site!

 

[Ross]

I've tried many times to slice off a knuckle or a finger while chopping vegetables.

Ah but zest of knuckle or finger is often one of the most tastiest secret ingredients in any recipe!

 

[Nancy]

Hi Patty-

You sited a 25 year study of Coumadin. Let me site a 28 year study of Coumadin, my husband's. That's how long he's been on it.

As you can imagine, over those 28 years, he's had every sort of thing happen, and in spite of him having MAJOR, MAJOR medical problems, he's still here. And in his youth, he was a very active man. He's almost 74 now.

The only pain in the a-- that I can see is if invasive procedures or surgery is suggested. Then you have to use bridge therapy. But even that is doable.

I can tell you that my husband is on 14-16 meds a day, and Coumadin is the LEAST problematic one.

Don't let the unreasonable fear of Coumadin cloud your thinking. Think of it as just another pill that you take.

 

[Mary]

Ah but zest of knuckle or finger is often one of the most tastiest secret ingredients in any recipe!

You are truly a SICK man, Ross!
I'm glad SICK doesn't bother me!

 

[ccrawford]

Patty - By now you're beginning to get the idea that Coumadin isn't the terrible dragon that some might imagine. Keep hanging around the site and focus on the various threads dealing with Coumadin, and your comfort level will begin to get better. Coumadin indeed is a drug that interacts with many other drugs and herbs, but all of this can be managed, especially if you devote sufficient time to understand this issues. Chris

 

[catwoman]

Patty:
I don't eat exactly the SAME exact thing every day -- that would be boring! I eat something with vitamin K every day -- a nice salad, a broccoli-chicken stir fry, some tender asparagus, spinach salad, some cole slaw, etc.
Last Saturday we were in Texarkana TX and ate at a great cafeteria. I had veggies and splurged with some turnip greens. I usually don't eat greens or spinach, because they have a lot of vitamin K -- more than a typical salad with iceburg lettuce. But every once in a while, it's a change and a treat.

When I'm traveling, I do have to make a point to get that vitamin K in. It's easier to control your diet at home than away from home. I try to determine if lunch arrangements can include a salad or where we will eat on Saturday night. I'm going to a convention in Atlantic City in 2 weeks. I fly there (to Philly) on Thursday 6/16. I'll eat a salad that afternoon before our cat show judges' workshop. I think there's salad the next day at lunch; if not, I'll eat one before running back to PHL at 7 p.m. to pick up a friend from DFW. On Saturday, we have a luncheon (with salad, I'm sure) and a formal awards dinner. I selected a "vegetable Wellington" and I'm sure it will come with some sort of salad.

I have a Trek bike and I also walk, do some jogging. My husband and I used to do a lot of tent-camping & day-hiking, nothing strenuous.

I would think someone on warfarin could do pretty much what they did B.C. (Before Coumadin) -- except use a helmet when biking or motorcycling. You would still suffer injuries if you weren't on warfarin; you just become a little more cautious, not a bad idea.

 

[afraidofsurgery]

Thanks for putting me at ease!

Thanks for putting me at ease!

Thanks everyone for putting me at ease. I won't tell my cardio that he was right - that the coumadin is manageable and not a big deal - he might wonder if I'm OK. I really appreciate all your comments and am glad I found the website!
Warm regards,
Patty

 

[hayden]

I have had no problems with coumadin, but I have only been on it since August 2004......I was told no salads and have not had one since August......did not know that I could.......look out Ponderosa, here I come.....my inr last week was 1.8 and it is 3.0 today.......

 

[Phyllis Jean]

Coumadin and Mechanical valve

Coumadin and Mechanical valve

I can certainly relate to your fears of taking coumadin. I was so uneducated about it until I started reading information on this site. I have taken the dosage every day now since October of 2004 and have my blood checked every month. I haven't noticed anything out of the ordinary as far as bleeding more than usual etc.. I just take it along with the rest of my medication (just another pill). I still eat green vegetables, drink coffee, but not in excess. It isn't as bad as I thought it would be. I, like you, was terrified. I was scared to death that if I cut myself while shaving my legs, I might bleed to death. Not so. Best wishes always.