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

[Superman]

I've been on warfarin since I just turned 18. I'm 40 now and still have all of my hair.

Am I the only one that takes my dose in the morning? Always seemed to fit my routine better. I test weekly per the rules of my lab. I don't worry about diet, never really have. Hasn't changed lifestyle either, other than more freedom with a properly functioning valve. Was a pretty regular mountain biker in my 20's. Coach youth baseball, and have been drilled by the occasional line drive in coach pitch.

I'm in range pretty much every test. On the rare occasion that I'm out of range, I let the clinic think they've given me corrective advise, but then do what I think is right and get back in range.

I think some of those that have a lot of trouble finding a proper dose are sometimes victims of mismanagement by their doctors as much as any unique metabolic circumstances. A bad warfarin manager can get the INR yo-yo started and can't find a way to stop it. They over correct, mess with your diet, and from one test to the next it's too high, then too low, etc.

It's okay to fire your manager. Find a different cardio, clinic, or turn it over to your primary care. Eventually people get comfortable enough with their own bodies response to dosing changes that the clinic really is just there for documentation purposes. Many long timers are self-managing.

 

[ElectLive]

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?

Historically speaking, mechanical and tissue valves are equally prone to endocarditis, according to FDA data here in the US, based on previously approved prosthetic valves. Medical consensus is another matter, though. On a related note, homografts are often (but certainly not always) recommended as the best way to avoid recurrent endocarditis.

 

[dick0236]

......I've been on warfarin since I just turned 18. I'm 40 now and still have all of my hair.

Am I the only one that takes my dose in the morning.

I've been on warfarin since my surgery in 1967 and still have virtually ALL of my hair...but a lot of it is now gray.....in fact, I'm going for my monthly haircut(burr) this afternoon.

Superman, I have always taken my warfarin with my other pills in the morning.....so there are at least two of us, but I don't think it makes any differece....except to be consistent, morning, noon, or nite.

 

[Superman]

Superman, I have always taken my warfarin with my other pills in the morning.....so there are at least two of us, but I don't think it makes any differece....except to be consistent, morning, noon, or nite.

For some reason I think they default to recommending evening dosing. I'm not sure why. All I know is that very early on I had a difficult time being consistent with evening dosing. Telling a teenager.twenty something who works second/third shift a lot and is out having fun with friends otherwise to remember to take a pill every evening doesn't lend itself to consistency.

 

[Luana]

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.

"What if they aren't," pretty much sealed the deal for me to choose a mechanical valve. Even if (and I do mean if) they become the more common method of VR in years to come, there's no guaranty you will be a suitable candidate.

I didn't want additional surgeries and I certainly did not want to make a decision on an "if."

Warfarin has no impact on what I eat. I have never met a vegetable I don't like. I freely eat vegetables and salad greens. No problems. Dose is adjusted to diet. No need to restrict diet.

 

[BarbATS]

I'll add my voice about daily impact of blood thinners. Having a mechanical ATS mitral valve for 13 years now, and taking warfarin from the start, it has been quite the "non-issue" in my life! After that initial post-op tweaking for a short while, things have been routine. I have been testing once a month, first at doc's office, then for the past 18 months, at home. On maybe two occurrences when level was out of range and an adjustment was made, I'd retest more often--
instead of monthly, in two weeks, for example. All in all, the experience of living with anti-coagulation as a part of my day-to-day life has been NO BIG DEAL.
I was 55 when I got my valve and am TOTALLY SATISFIED with my situation. I know for sure I would NOT want to be envisioning another surgery at this
point in my life! As healthy and strong as I feel right now (better than I have felt ever, thank you!), undergoing major surgery is not something easily
candy-coated. I can live in uninterrupted serenity as I approach my 68th birthday and 45th wedding anniversary with my sweet FreddyB!

 

[Freddie]

To be honest.........it did for almost the first 2 years being on warfarin.
But NOT anymore! It's my life, not the warfarin's.

Thinking of going to N.Van to visit my brother who is only 2 maybe 3 very steep blocks from Lonsdale Quay Market - talk about a hike going up with suitcases....yikes x 10!

 

[kimcdougc]

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.

I think my problem is that I don't eat the same amount of salad per week per say. I don't really like any of the other things like spinach, broccoli, kale etc. To eat salad when I want and be consistent is not in my diet. So, I eat lettuce on my sandwich and that's about it. Don't miss the salad thing much. I am only in week (5) of my Coumadin journey so we shall see where I end up at. Thanks for your input. I appreciate it. Kim

 

[pellicle]

Hi Kim

I've edited this post (for any who may have seen it and wondered) as I just noticed at the end of your post:

I am only in week (5) of my Coumadin journey so we shall see where I end up at. Thanks for your input. I appreciate it. Kim

that changes things a little.

First if you've been on it only since your surgery, then I implore you to let your body settle down ... your metabolism reacts to things with variations as much as your emotions do. Blood pressure IS part of your metabolism (as is heart rate) and you would be surprised to find that invariant.

I think my problem is that I don't eat the same amount of salad per week per say. I don't really like any of the other things like spinach, broccoli, kale etc.

well perhaps, but its not really a big issue. Salads aren't as high in things which alter the balancing act of Vitamin K and warfarin interactions (which is in the recycling of vitamin K).

Let me ask you ... do you expect your INR to be ROCK STEADY ... like vary no more than 0.2 from measurement to measurement, week in week out? If you do, then that's simply not going to happen. I don't think it happens for anyone.

I consider my INR to be stable and mine looks more like this (since the beginning of the year):

and as you can see there are some ups and downs. I'm not bothered by them (although some managers are) as there is enough research to indicate that such variations are expected and will not cause you as much trouble as being high or low from over steering the dose.

To eat salad when I want and be consistent is not in my diet.

so don't worry and eat what you want when you want

The whole thing is "RANGE" you have a range to be within. Think of it as like driving your car. You have a lane to drive in, that's your "range". you don't try to stay within 6 inches of the white line at all times do you? Sometimes you even cross the white line, but you know you'll be heading back again soon, so its not a problem.

Its only when you head out of range and continue to head out of range with no sign of heading back that its a problem.

Some decades ago people on warfarin just took a dose. Measurement was infrequent and thus people had problems with the drug / body interaction. Now we have great tools to measure it, and accordingly the literature suggests that 'in range' patients have far less problems (and who knows if the problems they have are from the warfarin or from other aspects of their life/health).

Just eat as you wish and "keep a steady hand on the tiller".

 

[John & Joann]

Joann has been on warfarin for 41.5 years. She can not remember life without the drug. Testing at the Coumadin clinic is SO much better than doctor management. No colon exams because she refused to go off Coumadin for ANY REASON!!! Dentist and Coumadin is not a problem. Pacemaker replacement and Coumadin is not a problem at Cleveland Clinic. 2.5 to 3.5 is Joann's required level. 2 mechanical valves, 3 bypass, and a dual chamber pacemaker.

 

[pellicle]

Joann has been on warfarin for 41.5 years..... Testing at the Coumadin clinic is SO much better than doctor management. No colon exams because she refused to go off Coumadin for ANY REASON!!!

This about sums up the charging rates of the USA medical system as it appears from over down under

;-)

 

[tom in MO]

The most recent advisories for colonoscopies for people on coumandin state you do not need to go off coumadin for a colonoscopy. More than one person on this board has been mistakenly told otherwise.

I had my mechanical put in last February and before surgery, since I have hemrhoid problems, I talked to my new colorectal surgeon. My young fresh doctor told me that colonoscopies are OK on coumadin. However, if they find anything, they have to do a second colonoscopy w/o coumadin to remove the polyp, etc. I also found two literature references that backed him up.

 

[njean]

I was one of those persons that refused to have a colonoscopy exam because the doctors here wanted to take me off Coumadin to perform it. I was totally against it and kept ignoring my PCP's request to have one. Then last year I had to go into the hospital for a few days because I was battling a bad respiratory infection along with a slight case of pneumonia. Well during my hospital stay, I started having bloody stools and the doctors panicked.

Lucky for me, a new doctor in town, said he had performed many colonoscopies without taking the patient off Coumadin. This was the man! YES!!!! So while I was there, he did the exam and he did not find any polyps, nothing. "I was clean as a whistle, he said!". Doctors came to the conclusion that some of the antibiotics I was on were causing the bloody stools. Sure enough, as soon as they changed my meds, the problem went away!

So now I know that there are doctors out there that will perform colonoscopies without taking you off the anticoagulants! So stand your ground if you don't feel right about getting off the Coumadin and hopefully you'll win out!

Good luck!

P.S. BTW, I've been on Coumadin for 38 years!

 

[MarkU]

The most recent advisories for colonoscopies for people on coumandin state you do not need to go off coumadin for a colonoscopy. More than one person on this board has been mistakenly told otherwise.

I had my mechanical put in last February and before surgery, since I have hemrhoid problems, I talked to my new colorectal surgeon. My young fresh doctor told me that colonoscopies are OK on coumadin. However, if they find anything, they have to do a second colonoscopy w/o coumadin to remove the polyp, etc. I also found two literature references that backed him up.

The issue here is not so much that you can perform a colonoscopy without going off Coumadin, but that if any bad polyps are found it requires a second invasive procedure with the associated risks and costs, not to mention the fun "prep" beforehand.

I'm susceptible to developing pre-cancerous polyps and have had five colonoscopies/polypectomies in the past ten years. Personally, I prefer that they take care of things while they're in there, rather than having to go back in again. I've done a Lovenox bridge every time; no big deal after you get some practice giving yourself the injections.

Mark

 

[tom in MO]

I agree; if I were you, I'd do the same.

If I ever had to repeat one for a biopsy or polyp removal, from then on, I'd go off warfarion for them.