What is it like taking coumadin?

[Bill B]

The questions have been answered. I'll just add that I am a Coumadin novice, now out a month. Still getting stabilized, but getting close (last INR was 3.2, been as high as 3.7, which is not a big concern). I haven't had an ounce of trouble and I'm on baby aspirin too. That paralyzes the platelets while Coumadin inhibits the clotting factors. You'd think I might have some serious trouble with bleeding. I've seen no change with bleeding after venipunctures and when I scraped my hand helping my son change the oil on his motorcycle yesterday, the bleeding stopped just like normal. My gums don't bleed when I brush hard. Everything seems normal to me.

I'm not expecting any real problems with Coumadin and I'm extremely pleased I made the decision to go with the mechanical valve at my age with my LONG life expectancy. In a few weeks I will be off restrictions and will be taking up marathon running again and weight lifting with no restictions. I'm a VERY happy man.

 

[CThrock]

Coumadin, just becomes part of life.
Take it daily, home test once a week.
Eat what I want and enjoy life fully!!

 

[Ross]

To put things into perspective, a normal persons blood begins to clot in about 10 seconds. Someone that is therapeutic on Coumadin will be anywhere from 20 to 35 seconds. Not a whole lot of difference.

 

[Bill B]

To put things into perspective, a normal persons blood begins to clot in about 10 seconds. Someone that is therapeutic on Coumadin will be anywhere from 20 to 35 seconds. Not a whole lot of difference.

Good example, Ross.

 

[ctyguy]

1. How often do you take coumadin? Daily for 18 months now
2. How is your diet effected? Hasn't, I eat what I have always eaten. Can you eat spinach and lettuce? Yep, Spinach Salad with chicken a few times a week
3. How often do you check your levels? Monthly Is taking coumadin similar to being a diabetic? No, there is no connection.
4. What are the physical side effects? None that I know of.
5. How long did it take you to determine appropriate levels? Took me about 6 months to get stable
6. On a scale of 1 to 10, how big of an impact does it have on your life? 2 (it would be a 1 except I do watch my alcohol more closely and I have to be a bit more careful with sports).
7. Aside from bleeding, what are coumadin complications? Makes any future surgeries slightly more complicated but I can't think of anything else to worry about.

 

[torreypines]

Thanks so much to all of you who have shared your personal stories. You've shown us that life can go on in a very normal way when taking coumandin. This is not what we were expecting when we first heard the surgeon mention "mechanical valve." After a lot of thought and consideration, we have decided to go with surgeon's recommendation, the On-X valve. We think it will give us the quality of life we're looking for and allow us to adjust to a slightly new normal. I can't thank you all enough for your generosity and willingness to share your experiences.
~Christine

 

[kfay]

Christine, I'm glad that the two have you have come to a decision about a valve that fits your life. I'm sure your husband will do fine and make whatever adjustments he may need to make very easily.

Kim

 

[Philip B]

Echoing good advice

Echoing good advice

Like others have mentioned in their posts...

1. Coumadin typically requires taking a pill or two daily. How much I take depends on my metabolic rate. This can vary due to my activity level.

2. My diet is totally unaffected. I eat what I want, when I want. Yes, sometimes spinach and lettuce are on my menu.

3. I check my INR on a weekly basis. I do the home testing thing once a week. Testing for me is much less intensive than that the diabetics I know have to do. My neighbor has to test his blood sugar three to five times a day.

4. Other than bruising more when I bounce off something (I seem to do that fairly often) and taking longer to clot when I cut myself, I really haven't noticed any physical side effects.

5. I'm not really sure what you're after with the question about determining approriate levels. I wasn't quite in range when I was released from the hospital, but I got there pretty quickly. I tend to fluctuate and some times find myself a little high or a little low. I don't find doing adjustment stuff to be rocket science; it's pretty easy.

6. With 1 being on the low end of impact on my life, I'd rate the impact as a 2on me personally. The only thing I find challenging is remembering that I need to take my meds. I've never missed a dose, but I feel so normal that I don't even think about taking my coumadin.

7. Others may disagree on this point, but I really don't see bleeding as a complication. I got injuries involving bleeding long before I had AVR surery and started taking coumadin. Frankly, I got injuries that resulted in more blood loss long before I started taking coumadin. This doesn't mean I'm not concerned about injuries and potential bleeding. I got a lot more serious about wearing my bicycle helmet after AVR surgery (it undoubtedly saved my life last summer). I also started wearing a helmet when skiing. These kinds of practices are common sense for everyone who cycles or skis.

I don't think any perscription meds are something folks should "mess" with. Coumadin is simply a perscription drug I take every night. Sure, it's probably wise to get into a routine. I take my coumadin around 8:00 p.m every night. My wife has a habit of asking me if I've taken my meds around 8:00 p.m. nightly.

Valve replacement surgery is a big deal and you guys need to pursue answers to your questions. Valve choice is one of those decisions you need to be comfortable with.

-Philip

 

[terodac]

It scares you at first the Coumadin word"! I see no difference in anything other than bruising easly. Might take a while to get it at a stable dose, they just changed mine after three years. Home testing is a blessing if you are able to let your doctor approve it. Falls are the main thing my doctor has warned me about like where you hit your head things like that! Good Luck!

 

[Ross]

Just a word on knocking the noggin. It doesn't matter if your on Coumadin or not, if you hit your head hard enough, your going to have a brain bleed and it could be fatal. Coumadin doesn't lessen the chance nor increase it. An accident is an accident, but should you slam into a tree, smack your noggin on concrete or similiar without a helmet of some sort of protection, it's pretty darn serious no matter who you are or what your taking.

Take Natasha Richardson as an example:

http://www.bild.de/BILD/news/bild-e...-home-to-new-york-to-die-after-ski-crash.html

 

[Philip B]

On-X

On-X

On-X seems to be an increasingly popular choice among members here. It was an option I considered and discussed at length with my surgeon.

A St. Jude with a factory installed aortic conduit was a better choice for my particular situation, but the On-X certainly had some attractive features. I particularly liked the research concerning damage to red blood cells. The On-X appears to do less damage to red blood cells than other valves.

Pursuit of an active lifestyle was another major topic of conversation when I discussed valve choice with my surgeon. He really pressed me on the topic of whether or not I was willing to take coumadin.

The only poor choice in your husband's situation is to do nothing to get his bad valve replaced.

-Philip

 

[witzkeyman]

I'm 45, and had my surgery 2 years ago. I was freaking out that my hair would fall out. A couple of months when it didn't happen, I felt great. As soon as I went home from the hospital, I ordered an electric razor. I haven't used it once. I thought I would bleed like water if I cut myself. That never happened. I eat more vegetable than I ever ate. I eat a package of frozen lima beans or peas a day, and my INR is always pretty stable (I test every couple of weeks). I think I do feel more light headed, and get dizzy when I bend down to look down, but I do try to avoid that. The worst thing that happened from being on Coumadin is when I fell off a chair while changing water in a fish tank. My entire arm was red and purple for an entire month. That did freak me out.
Before surgery, I don't think I could make it another day though. The day after surgery, I felt like a new man.

 

[jeffp]

My experiences are much like the majority here. One thing I'll add...Healing takes a bit longer than without coumadin. The drug blocks vitamin K and Vit K is used not only in clotting, but also for collagen synthesis. Deep scratches, gouges and scrapes (the stuff of daily life) are slower to heal and leave a bit more of a scar; but I've not seen any significant increase in bruising.
I also want to echo the need for a system to remind me to take the pills. I use the weekly pill box and often I won't recall if I took it and have to check if the day's compartment is empty or not. It's not related to the coumadin, it's just so routine that my recollection could be from today or maybe yesterday and I'll have to check.

 

[Dexter Bob]

Wow, great info you guyz! I went to the Cardiac Home Care Class that the hospital requires for caregivers of OHS patients. Everyone said that it was a hoot that the actual patient would attend before surgery!

Anyway, the nurse said they might keep an AVR patient "in custody" for a little while longer getting their INR to a "thereputic" range before discharge. Did anyone get held up after surgery because of that? How often after discharge did you have to test before you get to that "once a month" schedule?

Bob
AVR scheduled for Jan 07, 2010

 

[Ross]

Wow, great info you guyz! I went to the Cardiac Home Care Class that the hospital requires for caregivers of OHS patients. Everyone said that it was a hoot that the actual patient would attend before surgery!

Anyway, the nurse said they might keep an AVR patient "in custody" for a little while longer getting their INR to a "therapeutic" range before discharge. Did anyone get held up after surgery because of that? How often after discharge did you have to test before you get to that "once a month" schedule?

Bob
AVR scheduled for Jan 07, 2010

Bob that's pretty much the standard policy at any hospital. IF they know what they're doing, it shouldn't take more then 5 days, perhaps 7. You'll soon realize that most INR managers DO NOT KNOW how to manage a patient properly and it may take longer because they aren't being aggressive enough. They fear bleeding. You can replace blood cells, you cannot replace brain cells if you have stroke from your INR being too low. They should start you out on 5mg and go from there. They'll test you everyday in the hospital, which is overkill because it takes 3 days for the full effect of the first dose to show up in a test. If they start changing doses more then twice in a week, you have a yo yo managing you and that's exactly what will happen. Your INR will go up and down. Testing more then twice a week is a total waste.

After you get out, it depends on how fast you recover and how active you are. Eat like you always have. Do not let them try to tell you that you cannot. With Coumadin, you dose the diet, you don't diet the dose. Again, if you Coumadin manager is worth their weight, you should be stable within 1 months time. There are occasions that it takes a little longer, but if you stick with us, let us know whats going on with you and all the details, we will make it a whole lot faster. We get it! Most of them don't.

 

[catwoman]

Wow, great info you guyz! I went to the Cardiac Home Care Class that the hospital requires for caregivers of OHS patients. Everyone said that it was a hoot that the actual patient would attend before surgery!

Anyway, the nurse said they might keep an AVR patient "in custody" for a little while longer getting their INR to a "thereputic" range before discharge. Did anyone get held up after surgery because of that? How often after discharge did you have to test before you get to that "once a month" schedule?

Actually, it's any patient with a mechanical who should be kept in the hospital until they are in therapeutic range for that valve position. My surgery was on a Tuesday and I went home on Monday.

I'm not sure if I've ever done once-monthly tests. I got my home tester 5 months post-op. I generally test weekly, but am stretching out my tests to every 2 weeks. Will recorder strips come January, since I file on my FSA and it's wiped out for 2009.

 

[bunker395]

Everyone has covered this subject very well however one of the best tips I read on this site had to do with taking multi vitamin with a small amount of vitamin K every day. As soon as I started taking the Multi vitamin my levels stabilized I eat anything I want without any big swings in my INR.

 

[Joe Cool]

I appreciate your concern. It is a scary step to take into the unknown. It has been my experience that most "medical" people will know less than you do about being on anticoagulants after you have been managing them for awhile. Lots of misinformation amongst that group. Here are my answers to your questions:


1. I take warfarin (generic) once a day.

2. As the rest have said, you don't change your diet, just eat a consistant well balanced diet. Remember "dose the diet".

3. I was fortunate to have my insurance pay for 80% of my InRatio monitor. That is the only way to go. I test once a week and wouldn't have it any other way, but I know of people testing once a month without any problems. It is kind of being like a diabetic except most Doctors won't let you adjust on your own. I do occasionally and my doc is OK with it.

4. You really don't notice it at all. My only problem is that I always have had a problem with nosebleeds. So I have had to deal with that. I don't get them more frequently, but they are a little more difficult to stop. As far as I know though, nobody has bleed to death through the nose .

5. Actually, my doc calls it a "crap shoot" to find the right level, but he nailed it right away. But, you will be adjusting occasionally with changes in diet and metabolism.

6. I am with Ross, about a 2. I do all the things that I did before the surgery. I snowboard, body board, backpack, etc. It is not a good idea to take up new high impact activities, but I have had no problem with these.

7. I don't know of any other complications and haven't experienced any.

I hope that this helps you in your decision.

 

[Luana]

So far, I have had a few problems, but I'm only 3 weeks post-op, and think this should be resolved soon. I'm new to this, but would like to chime in for question 3.

I am a type 2 diabetic and I check blood sugar 5 - 6 times daily. Because I don't take insulin, I have to rely on diet to keep my blood sugar as close to normal ranges as possible. For me this is not difficult, but it requires more attention than the Coumadin. It's not been difficult to give up starches and carbs for the diabtetes; however, I will not give up green veggies and salads for the Coumadin.
Luana