Daily impact to your life from being on blood thinners...?

[clay_from_nj]

"Daily impact to your life from being on blood thinners...?" Aside from taking pills? None at all.

1. Typical routine? Pills every day, get tested every 2-4 weeks.

2. Food drink? Eat what I want, in my case, pretty healthy - heavy on the protein and veggies (LOVE fresh spinach) and light on the carbs and sugar. I like a good beer or glass of wine now and then (less than once a month).

3. Side effects? Travel? I always wear a helmet on my motorcycle and bicycle. (Always wore a motorcycle helmet anyway.)

4. Tolerance? Never heard of any issues in that regard.

5. Unexpected surgery? If it's an emergency, they can get your clotting back up with a shot of vitamin K. If you're bleeding a LOT, it would be a problem anyway, even without warfarin. More routine surgery wouldn't be a problem at all.

ASD repair at age 10, Deborah Heart and Lung.
AVR with ATS Open Pivot, 9/21/12, St. Joseph, Denver.

47 years old and still ticking (except for the PVC missed beats).

 

[pellicle]

My Coumadin level yesterday was 4.06 so I was told to eat a large dark green salad. I thought I was done with salad...you can have salad but you need to eat the same amount everyday. It is a learning process and once you are stabilized shouldn't really impact your life unless you let it. Mind over matter I say.

I'm guessing that you mean your INR .

Twice a week monitoring. Hmm personally I'd be taking my own notes from their data and starting to look for trends myself. I feel unhappy with people who's competence I question monitoring my health. Feel free to ask questions here. Start a thread. It you provide INR and daily doses in mg I'm sure with some data people can offer assistance.

 

[Luana]

1. What's the typical routine for most people? Wake up, pop a pill and monitor your blood level 1x/day using the INR machine?

I doubt that anyone monitors INR every day; there is no need to.

Yes, they have. It most commonly occurs after a case of endocarditis. We've had members develop it on their mechanical valve, have to replace the mechanical, and on the advice of the surgeon, go with a tissue valve. Tissue valves seem less likely to sucumb to the bacteria.

Never heard of such a thing. I had endocarditis before I ever had a valve replacement. The germs seemed to like my native aortic valve just fine.

 

[Duffey]

Never heard of such a thing. I had endocarditis before I ever had a valve replacement. The germs seemed to like my native aortic valve just fine.

I was thinking about member Robyn and Randy, but when I looked back, after he developed BE following mechanical valve replacement, CC recommended a homograft for replacing the mechanical, not a tissue.

 

[Jkm7]

Kimcdougc, per "you can have salad but you need to eat the same amount everyday" that was not what I was told nor my experience. I eat a salad when I want, often during times like now when it is fresh and local, but only about a few times a week during the off season. If you are like me, my INR was variable for about the first 6 months but has now settled down with this eating style. I try for a balance diet but eat more of what's in season.

Per "My Coumadin level yesterday was 4.06 so I was told to eat a large dark green salad" this does not agree with what I was taught or what my coumadin clinic has done for the last 18 months. I was told the modern concept is to "dose the diet", not "diet the dose." If my INR is high, my clinic has me drop my dose slightly, they have never suggested eating more salad or K containing food. From what I was told in the hospital, rehab and by my cardio, this is the "modern" methodology of "dosing the diet".

The old way was to give you a list of foods that would affect your INR and tell you to watch them and don't eat too much K containing food. This is called "diet the dose." This was found to be counterproductive to both good nutrition and an INR within range. Now they "dose the diet" with the only request is that you eat a balanced diet. Nowadays a balanced diet has a mix of protien, vegtables, grains, etc. but also a mix of colors, red, green, yellow, etc.

The ONLY thing dieting the dose does is put the onus on the patient to prove the coumadin right in what dose they prescribed. Any competent coumadin manager doses the diet. If they don't understand that concept, they probably could profit from some current, up to date training.

 

[yotphix]

Hey Tony,
I think this has been covered, but I'd just like to reiterate that being on warfarin does not in any way preclude or prevent being active. It's definitely something that you need to be consistent about, but if you're ok with the most minimal of routines, you won't have any trouble. My life is all over the map literally and figuratively, and for me it's a simple matter of taking a pill before I go to bed, and testing about once every second week, more if I'm at all concerned, less if I'm in a relatively stable period. I do everything I did before surgery and then some.
I have a friend who was on warfarin for a bit though, who is completely scatterbrained. Seriously, a talented carpenter but the most forgetful person I've ever met. Thankfully, it was a temporary situation for him, and he is on plavix and aspirin now (not a valve problem at all). He missed at least one dose per week, and kept forgetting to go for testing. He never got stable, but really it was for lack of trying.
p

 

[T in YVR]

Thanks for everyone's input - its very helpful....
I saw my surgeon the other day and he was recommending the On-X. He also reiterated the same sort of thing re: taking warfarin. I lead a very active, healthy lifestyle and am not too bothered by the routine it may add. From what I gather it won't have too much impact on what I eat, do etc. Mechanical it is!...now just need the surgery....sounds like late summer for me.
Tony

 

[DannaT]

Hi all, this is my very first reply to a post and it is my exact question! I am a 50 year old female scheduled for surgery on July 9 to repair an ascending aortic aneurysm and a faulty aortic valve. I have researched the advantages/disadvantages of both and am still stuck making my decision. Surgeon recommends tissue and cardiologist recommends mechanical...so now it's up to me to figure out what is best for me. I really Coumadin ... Heard a lot of horror stories ... But not entirely sold on the supposed future procedures to replace the tissue valve thru a catheter either! I really appreciate the patience you all have with those of us still in the decision phase...you guys are great!

 

[Sten Osis]

DannaT, we're practically neighbors!

I chose mechanical because I was told, with my very active lifestyle, the bio-prosthetic valve might not last 10 years. So, my first thought was, in 10 years they'll be doing everyone with a catheter. My second thought was, what if they aren't? I settled on the mechanical and I'm not worried about coumadin after reading
a lot about it on this forum.

 

[dick0236]

...so now it's up to me to figure out what is best for me. I really Coumadin ... Heard a lot of horror stories ... !

Welcome DannaT. Yep, it's up to you and your docs to decide what is best for you. In that decision, Warfarin does need to be considered.....but, in my opinion, after a long time on the drug, it should not, normally, play a dominant role in the decision. If you can follow a simple regimen of taking a pill daily and testing periodically and prefer not to, hopefully, go thru surgery again, you may want to consider a valve designed for the "long haul". Many, if not most, warfarin horror stories are due to patient ignorance or patient mismangement....been there, done that, a long time ago when good INR management and education was not available. Even today, docs do a woeful job in educating their patients regarding the proper management of warfarin. Most of their warfarin patients are older/elderly and on the drug for many reasons other than heart surgery. Younger valve patients represent only a tiny percentage of the total warfarin users and normally find warfarin a "non-issue".....as you will find on the anti-coagulation posts of this forum.

 

[pellicle]

. My second thought was, what if they aren't?.

One of the wisest posts if seen here for a while.

Even if they are they won't have them for as many as the options are now for mechanical or tissue. You can be sure that there will be a contraindicated group.

 

[pellicle]

Dianna

Welcome from de-lurking

. I really Coumadin ... Heard a lot of horror stories ...

If I listened to the news then my view of the USA would be that it is a hateful place filled with murders, rapes, mass shootings , bombings, road rage, corruption , environmental disasters and death.

Yet I am quite sure the horror movies of television news are nit the experience of anything like the majority.

Consider that when considering the "horror stories" of warfarin.

I speak as a convert, one who feared the unknown but when forced into the water found it to be fine

Life is about change. Those who refuse to accept change find they hate the agents which represent that change.

 

[Protimenow]

I've been taking warfarin for more than 21 years. I take my warfarin just before bedtime. This schedule works for me.

I've seen some on this thread talk about testing if their 'INR is stable' every few months. This is a dangerous way to approach anticoagulation management.

What 'stable' tests taken every month, or every few months, tell us is that AT THE TIME THAT THE BLOOD WAS DRAWN, our INRs were the same. It doesn't take into account possible fluctuations BETWEEN tests. It's possible that, even if we don't change diets, habits, or doses, our INRs may fluctuate from a 'stable' value.

In the past, I've gone longer periods between tests -- but at this time, for me at least, I like to test weekly. There IS a slight variation in weekly values, and in some cases, I've detected INRs that are out of range, even without having an obvious reason for this. These 'out of range' events would be missed if I only get tested once a month (or less frequently).

I don't work for the meter manufacturers. I have no financial interest in any of the companies related to the meters or the supplies. However, I strongly suggest that testing should be done once a week - and more often if you change diet or add medications to the mix.

(I just added some over-the-counter drugs to my regimen, based on the suggestions of a medical professional who reviewed a recent blood test, and I'll be testing every few days until I know what, if any, effect these new medications may have on my INR. I'll make minimal adjustments to my warfarin dosing, if necessary, until I 'stablize' on my weekly tests.)

 

[totheticktock]

Hi Tony,

I had a mechanical AVR + aortic graft put in just over a year ago, at the age of 37. After surgery, I was overwhelmed with the unknowns about anti-coagulation. Reading this forum helped put my mind at ease. I'm 100% happy with the fact I went mechanical. Being on Warfarin is just part of my routine now and does not detract from my quality of life.

1. What's the typical routine for most people? Wake up, pop a pill and monitor your blood level 1x/day using the INR machine? More hands on monitoring with a doctor in person only if there are problems?Or? How time consuming is it?

I take my Warfarin before bed, along with my daily baby aspirin. These are the only meds I take, and I portion them out once a week in a simple Sun-Sat pill box. My doctor is not involved in my regular monitoring.

My testing routine is as such: go to Quest Diagnostics for a blood draw in the morning before work, get a call later that day from the nurse at my cardiologist's Coumadin Clinic. I test every 2-4 weeks, depending on the nurse's request. She likes to see a stable INR for two tests in a row before stretching it out to four weeks.

2. How much does being on blood thinners impact what you eat/drink? Can this sway the readings/blood clotting considerably?

I am a vegetarian, so cutting out greens was out of the question for me. I eat a consistent amount of kale on a near-daily basis (2-3 big leaves). If other greens are in season, I eat those instead. After my surgery, it took four weeks for my INR to get up into a therapeutic range. Since then I have fluctuated up and down, but always within range. Activity level seems to play the biggest role in my INR levels.

Since I am 'dosing the diet', my dose is on the high side. I am a 117 lb woman and I take 10-12.5 mg a day.

I enjoy good craft beer, but never have more than one a day. :thumbup:

3. Are there any side effects people have experienced? I am quite active and very much live my life 'on the go'. I also fly about 100k miles a year and not sure if blood thinners have any impact with that kind of travel?

Before surgery, I was an amateur elite bike racer. I don't race any more because of the risk of head injury, but I'm still very active. Right after 'graduation' from Cardiac Rehab, I went on a wilderness backpacking trip in New Hampshire. Intense hiking for three days with a 40 lb pack. It was awesome. I've also done several 5k's, ride my bike on the regular, and hike quite often.

Several months ago, I fell backwards pretty hard down some metal steps. My doctor told me to go to the ER to make sure I didn't have any internal bleeding. It turns out I fractured a rib in multiple places, but had no internal bleeding at all. I didn't even have bruises on my ribs.

I don't fly very often, but have not noticed any difference on Warfarin.

4. I have read about instances where some people have a hard time tolerating blood thinners. Is there any way to tell in advance? Any tests they can run on your blood to determine if you may be more problematic or not?

Sorry - don't know the answer to that one.

5. The other thing I think about is what happens if you require some other unexpected major (unrelated) surgery down the road...suddenly you become a higher risk situation when compared to someone with a tissue valve and no blood thinners? Going tissue guarantees another major surgery though...

No experience with this one yet.

 

[Cooker]

Daily impact for me is taking one little pill. I test once a month, INR has been in range from day one.

 

[CadenJohn]

Coumadin is no big deal at all to my lifestyle. I work hard and play hard with young and energetic kids. I live no differently before vs. after. To me, it's just like taking a multi-vitamin each day.

 

[Agian]

Ski Girl had a tissue valve and got endocarditis. They replaced it with a mechanical. Someone else got endocarditis with a mechanical and they replaced it with a tissue valve. So which type is more prone to endocarditis?

I read somewhere people claiming to have experienced hair-loss on Warfarin. I suspect any hair-loss may have been in relation to the trauma of surgery. Any thoughts?

 

[pellicle]

I read somewhere people claiming to have experienced hair-loss on Warfarin. I suspect any hair-loss may have been in relation to the trauma of surgery. Any thoughts?

probably a rumor started by a hair treatment clinic ... these places prey upon people's misplaced insecurities about hair.

I'm losing my hair ... and I couldn't give a rats

more worried about my actual health.

Warfarin hasn't stopped me doing stupid stuff that's fun:

or going to great places on my own two skiis

nor has hair loss

 

[ski girl]

I still have all of my hair. Although when I get it cut I do lose some. But I don't think that's due to warfarin, more the hazards of scissors.

 

[Agian]

And fair enough pellicle.