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

[T in YVR]

Hi,
I'm debating on whether to go mechanical vs. tissue (I'm 47 yrs old/waiting for AVR). Leaning towards mechanical, but unsure....I have read all about the pros and cons of each but had a few other questions with respect to the daily impact of taking blood thinners:

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?

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

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?

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?

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...

Sorry for the long post. Thanks for any insight you can share,
Tony

 

[ski girl]

Hi Tony-

I went tissue for my first valve (age 39) cos of fears of the impact warfarin would have on my life. Eleven months later I got a massive case of endocarditis and had no choice but to have an AVR redo with mechanical. The warfarin hasn't been anything like the issue I thought it would be. I'm not a fragile little flower. In answer to some of your questions:

1) My routine - live my life, pop a pill around 6pm. I'm totally slack about testing, I self-test about once every couple of months. My GP is totally slack about managing my warfarin so I do it myself. Others have warfarin clinics and are required to report results of self tests - I slipped through a lot of cracks I think!

2) I eat a fairly consistent and somewhat saintly diet. I eat whatever greens I want, but I did discover that I have to stay away from grapefruit juice - one week I washed down my warfarin with a big glass of grapefruit juice, the next week my INR was 8.0. Oops. However I had no signs that it was that high, such as blood in my urine, etc.

3) Side effects - nope. I do think I bruise more easily when I fall off my mountain bike (I do this a lot, I'm terrible at MTB) but I didn't really get into mountain biking until after I got my mechanical valve, so I'm not really sure. Basically I don't let warfarin get in the way of my activities although juggling chainsaws is not on my bucket list. Probably wouldn't have been anyway.

5) If you need surgery while on warfarin they take you off it and 'bridge' you on something called Lovenox - injections in the belly. Ouch. But effective.

Summary - now that I know what little impact warfarin has on me, if I was in your position and age I'd be choosing mechanical. I'm much more annoyed by the ticking sound of the valve than the warfarin! Hope that helps.

 

[canon4me]

Has anyone ever went from having a mechanical to getting a tissue on a reop?

 

[Duffey]

Has anyone ever went from having a mechanical to getting a tissue on a reop?

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.

 

[dick0236]

Hi Tony-

1) My routine - live my life, pop a pill around 6pm. I'm totally slack about testing, I self-test about once every couple of months. My GP is totally slack about managing my warfarin so I do it myself. Others have warfarin clinics and are required to report results of self tests - I slipped through a lot of cracks I think!

2) I eat a fairly consistent and somewhat saintly diet. I eat whatever greens I want, but I did discover that I have to stay away from grapefruit juice - one week I washed down my warfarin with a big glass of grapefruit juice, the next week my INR was 8.0. Oops. However I had no signs that it was that high, such as blood in my urine, etc.

3) Side effects - nope. I do think I bruise more easily when I fall off my mountain bike (I do this a lot, I'm terrible at MTB) but I didn't really get into mountain biking until after I got my mechanical valve, so I'm not really sure. Basically I don't let warfarin get in the way of my activities although juggling chainsaws is not on my bucket list. Probably wouldn't have been anyway.

5) If you need surgery while on warfarin they take you off it and 'bridge' you on something called Lovenox - injections in the belly. Ouch. But effective.

I, very much, agree with skigirl. When I found this forum several years ago, I was amazed at the unusual importance people where placing on "warfarin" when choosing valve type......especially younger people that are virtually guaranteed several reops with tissue valves. Warfarin ain't a big deal. Take the pill once a day(you will find that, as you age, several other "non-valve" meds will be added to your daily dosing), test routinely(weekly, bi-weekly, monthly...your choice), and live a normal life.....just don't do dumb things, like running with scissors LOL.

 

[Guyswell]

T

I chose the tissue valve at age 41 to avoid warfarin. That valve calcified after only 8 years and was replaced with a mechanical valve about a year ago. So far, being on warfarin has been no big deal. I go to the protime clinic once a month if my INR stays within range. About a month ago, I attended an out-of-town training class and stayed up late drinking too much beer with my co-workers. That caused my INR to go high. I've been testing weekly since then until we get it stable within range again. Other than needing to limit my alcohol intake, I haven't made too many changes. I still ride my bike (15 miles last night) but I don't ride in traffic anymore.

As for flying, being on warfarin should reduce your risk of DVT. I don't see a downside.

 

[tom in MO]

1. What's the typical routine for most people? I take my warfarin in the evening. I self-test every 2 weeks at home. My insurance company uses Allere to provide the monitor and supplies.

2. How much does being on blood thinners impact what you eat/drink? Can this sway the readings/blood clotting considerably? Has not affected me at all. I eat what I want irrespective of my INR. I do eat a balance diet, but would be doing this anyway. If you don't eat a balanced diet, you should.

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? No impact at all. If you have circulation problems, warfarin will actually help on those long trips.

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? No you cannot tell in advance. There is one participant in this board that could not tolerate warfarin, so it is possible, just not common. Warfarin is a common drug among older people. Many people in my family have been on it, but none for a heart valve.

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... As stated above, many on this board have had surgeries and successfully either went off warfarin or bridged with other drugs.

The only down side to warfarin in my life is the inability to take nonsteroidal anti-inflamatories like ipubrofen. I have arthritis and I know in the future I will want them. However, my mother took them on top of warfarin, she believed the bleeding risk was worth it. She died at 87, long enough life for me

 

[scott.eitman]

Hi Tony-

...

I agree with Ski Girl...except I prefer road bikes. It is about a need for speed.

Stay well
Scott

 

[Gail in Ca]

I've been on warfarin since my 2nd surgery, 2000.
1. I take my warfarin after dinner, and test weekly with my own Coaguchek XS. In the past 30 weeks I've only been out of range twice, at 1.9, 3.4! Not bad!
2. It doesn't impact what I eat, and I do drink less alcoholic drinks than I used to, but that's just for my health, not necessarily because I'm on blood thinners. However, nurses have told me it's hard on the liver to take warfarin and drink much.
3. I have only had bad side effects when I got bacterial endocarditis in '08. The bacteria caused my INR to skyrocket to 9. I did have blood in my urine at 6.7 and a brain bleed between 6.7 and 9. Got vit K shots in ER.
I have traveled to Mexico, Florida, Hawaii, with no problems. I did stop snow/water skiing cause I wasn't that good at it and didn't want to risk a bad contusion. I would still do it If I was really good at it, I think.
4. I think you could probably try warfarin for a few doses to see what it does to you. Not sure on this, as our cardios don't seem to do this ahead of surgery. I heard of a guy who was allergic to heparin after he was on the operating table, but he came thru.
5. I have had wire removal, another OHS, and teeth crowned, also tests like colonoscopy, TEE, with no issues. I follow my surgeon, or other doctor's recommendation for pre-surgery instructions.
With repeat surgeries, the major risk according to my surgeon was the excessive scarring from previous surgeries. With each surgery, it was riskier,longer and more complicated for me.

 

[pellicle]

Hi

Hi,
I'm debating on whether to go mechanical vs. tissue (I'm 47 yrs old/waiting for AVR). Leaning towards mechanical, but unsure....

I wish I'd known what I know now in the past. I would have pushed for a mechanical then ... still, aneurysm may have forced another surgery .... who knows ... now I have a graft too, so that should about do me

I have read all about the pros and cons of each but had a few other questions with respect to the daily impact of taking blood thinners:

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 do mine in the evening. I test with a Coaguchek XS weekly. I test on Saturday morning and based on that alter my dose as needed (if needed). It takes me about 10 min from "reach for my coaguchek" to "close and save the spreadsheet". I was initially disheartened by the difficulties I had in obtaining a sample, but some perseverance (and technique) solved that. Now I'm a happy self tester.

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

nothing that I can observe. I understood that the main reason for advise against drinking is based on increased risk of falling down. I've gotten 5h1tfaced on 2 or 3 bottles of red wine (all in the interests of science of course) and measured my INR the next morning (well after 11am) and and again the next day and found no significant change.

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?

The major side effect is that it will increase your chances of dying of old age. This is quite a horrible way to go for many. I'd prefer to slam into a tree on my bike (motor bike, which I ride a lot).

I travel a lot too, and will be travelling (again) to Finland in a few months (from Australia). So far it has all been good.

Heck I thought that warfarin was prescribed for DVT. So we're already one up on that ...

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?

Initially my advice would be to take a trial. However some genetic testing may also assist.

There are some genetic markers which if you could get tested for may assist you in identification of likelihood of problems.
VKORC1 and CYP2C9. The following study suggests:

The researchers found a strong association between one gene variant known as rs12777823 on chromosome 10 and warfarin dose. This finding was corroborated in a second independent cohort of 432 additional African-American patients.

From MIMS:

a meta-analysis of nine qualified studies including 2,775 patients (99% Causasian) was perfromed to examine the clinical outcomes assoicated with CYP2C9 gene variants in the wafrarin treated patients. In this meta-analysis three studies assessed bleeding risks and eight studies assessed daily dose requirements. The analysis suggested tn increased bleeding risk for patients carrying either the CYP2C9*2 or CYP2C9*3 alleles.

Patients carrying at least one copy of the CYP2C9*2 allele required a mean daily warfarin dose that was 17% less than the mean daily dose for those patients with the CYP2C9*1 allele. For patients carrying the CYP2C9*3 allele the mean daily warfarin dose was nearly 37% less.

so essentially you need a clinic which has a clue (most don't seem to) and or, start testing yourself and getting used to it. It takes a few weeks to learn, but after that you're on your way.

I keep a spreadsheet of the results and that helps me to learn. Graphing my results helps me more (and excel makes that easy).

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...

Vitamin K is routinely administered and is also a quickly available and safe reversal of the anticoagulation effects of Warfarin. Warfarin as I understand it simply interferes with the recycling of Vitamin K in the body and thus causes its more than normal losses. This then causes problems with the clotting reaction (or in other words keeps us from having clotting issues)

Sorry for the long post. Thanks for any insight you can share,
Tony

not at all ... glad to help hope you didn't mind my long answer

 

[ski girl]

'The major side effect is that it will increase your chances of dying of old age. This is quite a horrible way to go for many.'

Ha ha pellicle!!! ;-)

 

[pellicle]

Hi

Ha ha pellicle!!! ;-)

well its only half jokingly said. I once had a Dr friend of our family say that "old age is the worst thing to die of". After I spent some years as an electronics tech in a company who provided nurse call systems to (among other clients) nursing homes I got to understand what he meant.

As Spock would say "live long and prosper"

 

[gerrychuck]

Has anyone ever went from having a mechanical to getting a tissue on a reop?

I have a friend who did. He received a mechanical mitral valve originally for all the usual reasons (age, not wanting second or third OHS, etc), but for some reason was not able to successfully manage his INR on warfarin. After less than a year he had to go back in and have a tissue valve put in to avoid the problem. He was not happy, but has managed very well since. Very unusual circumstance.

 

[T in YVR]

Thanks for all the answers guys! Very helpful....I have a feeling the Dr. will push for mechanical and try to get me to die of old age .
Cheers,
T

 

[sood]

Hi,
I'm debating on whether to go mechanical vs. tissue (I'm 47 yrs old/waiting for AVR). Leaning towards mechanical, but unsure....I have read all about the pros and cons of each but had a few other questions with respect to the daily impact of taking blood thinners:

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 am new to warfarin, had surgery less than 5 weeks ago. I usually take a pill and a half in the evening. Currently testing weekly at the doc's office, will get a home monitor after everything stabilizes in a few weeks.

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

I must say that I am a worry wart and that mentally it has impacted me a little. Before eating anything different now I try to research if it interacts with warfarin. Perhaps this is part of my learning phase. I have been eating a steady supply of salads and my INR is within range the past couple weeks. But I must say that I've probably shied away from having even more salad recently. Perhaps I will get over the worry, but I've been eating pretty much anything I was eating pre-surgery.

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?

No side effects.

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?

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...

Sorry for the long post. Thanks for any insight you can share,
Tony

 

[pellicle]

Thanks for all the answers guys! Very helpful....I have a feeling the Dr. will push for mechanical and try to get me to die of old age .

well I'd say (after you test with warfarin first {to be sure to be sure to be sure}) get the mechanical and : live long and prosper

the surgery is a life altering experience. Accept that your life will alter and make the most out of your new gift of extended life. Accept there will be changes.

I wish you the serenity to accept the things you cannot change,
The courage to change the things you can,
And wisdom to know the difference

 

[kimcdougc]

I am like sood, in the learning phase of Coumadin. They are still trying to figure out my perfect number. Get to go to the lab twice a week right now. Hopefully will all resolve itself soon. The worst part for me so far is hoping I can get someone good to get the blood sample! So far, so good. 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.

 

[Oilman]

Hi Tony, I had my mechanical implanted 6 months ago, all is well. We are close to the same age, like you all my medical team leaned towards mechanical for me, I'm thinking they considered my age and the fact that I suffered a TIA 2.5 years prior to valve replacement and was on warfarin from that point with no problem. I was able to maintain my dose and testing myself and never dropped below a INR of 2.0 or above 3.4, so I don't worry too much about that.

As for my routine, I just recently switched my heart protection to a once a day Bisoprolol, so I take my three pills at 10pm just before bed, use my alarm on phone for a reminder. I self test at home once a week and that takes a whole 3 minutes, so I don't find it time consuming at all. As far as food, I eat a balanced diet, eat and drink anything I want,don't even think about the conflicting foods. I don't drink any alcohol so that does get a chance to alter my INR. As far as a major surgery down the road, I don't worry about that at all, if and when that time comes, the professional will help with any bridging that will be needed.

Like Pellicle mentioned, I have the strength to except the things I cannot change. If taking 2 minutes out of my day to takes meds is what i need to do to be safe, so be it. I too, am counting on the side effect of blood thinners killing me of old age.

 

[tom in MO]

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.

 

[TheGymGuy]

1. 10pm every night, alarm goes off on my phone and I take my vitamins and 1 warfarin pill. TBH, the alarm is for Vitamins, I always know to take Warfarin. When traveling I take it 10pm EST, this way I do not need to time-shift when I go back home.

2. I have to avoid some collard greens and spinach, but I still eat lots of greenbeans and broccolli, and salads here and there. I test weekly, so it's easy to monitor. If I happen to want a drink I make sure to have more salad - lol.

3. I travel some too, and just bring my stash of pills and INR tester with me. So far no problems.

4. Pellicle answered this nicely above.

5. For minor things like teeth, small incisions, etc., if your INR is closer to 2.0 than it is to 2.5 or 3.0 you just need to pop amixicilin or whatever your doc says, for big things its Lovenox shots in the hospital. Either way, no biggie. From what I recall, any big surgery has you on pain-killers so lovenox shots will not feel that bad.

Ski Girl, ****, Scott, Gail and others have added some really good info. Don't sweat it too much.