Coumadin

[Jordan64]

I had my AVR surgery on December 4th at Winthrop Hospital in Mineola NY. I was originally supposed to have a tissue valve (bovine) put in but when my doctor opened me up I needed aortic root repair and a mechanical (titanium) valve was put in. I also had 3 inches of my ascending aorta replaced. I ended up staying in the hospital for 9 days. The last 4 days they wouldn't release me until my coumadin level was over 2. I've been home for 2 weeks now and doing well. I have had two blood tests and the first my coumadin level was too low and then the second too high. How long did it take other patients to get to a consistant level week to week? I'm 45 years old and in good health. Thanks in advance for any help.

 

[terodac]

Months and mine took over a period of 18 months, it has been a lot better because I home test now. Good Luck, they just have to get your dose right along with your diet.

 

[Jkm7]

I have tissue valve but, as is common, my surgeon ordered three months of coumadin post op. In the end, he let me stop it at 2 1/2 months but I never got into therapeutic range. I am a very compliant patient, follow all orders but required huge dosage and still never got to 2.0 or higher. (When I quit, I was taking almost 100 mg per week and that still was not enough for me.)

Good luck. Many people stabalize much faster than that but it's good you know it wouldn't be hugely odd if it takes you that long.

 

[Freddie]

Hi Jordan and Welcome.
Each person is different and your still in the early stages of recovery, so don't be surprised that it takes you 6 weeks or more to find your happy - medium range.

There is a good possibility that as you recovery and your activity level increases, so will your dosage.

But for the time being, eat well and look after yourself and we're here to answer any questions you have.

 

[Ross]

Jordon, with our help, 4 to 6 weeks. If where your going doesn't know what their doing, which most don't, it could be months. If you continue to have problems, come back and post everything your taking, amount of excercise your getting, current dose of Coumadin, how often your tested and make sure your eating EVERYTHING that you want to eat as a normal diet, including high content Vit K items.

We can usually get you stable within 4 weeks.

 

[catwoman]

Jordan:

Where are you going for your tests? Are they doing a lab draw or finger-stick tests? Many medical professionals made too many changes too frequently, which has your INR yo-yoing. That's why some people's INR never get in range.

Like others have said, it does take some time because you haven't resumed your normal activity level or possibly resumed your normal eating habits yet. Also, your doctors may be adding, dropping, changing other medicines which can also affect your INR.

It was probably 2-3 months before I was in range fairly consistently. I got my first INR tester 5 months post-op.

 

[Bina]

Jordan, hello and welcome.
I stayed in hospital for 16 days getting my INR stable because they started me on a too high dose. By 3 weeks post op I was stable and have been since.
The problems some people encounter are usually due to the mismanagement of their dosing by nurses, clinics, docs, etc. We know what we eat daily, and how much we exercise, and so we find our correct dosing using our common sense and adjust accordingly.
Mark down your doses and INR results on a calendar or Agenda, and use a daily pill box to avoid skipping or double dosing.

 

[Jkm7]

For some people, it is hard to regulate them post op when they are new to coumadin as few will actually end up having the correct dose be in the 100mg per week range. That is an extremely high dose. (I understand about the business that whatever dose keeps each person in range is the correct dose but I hated taking that much. I hated it.)

For some of us, (and admittedly we are somewhat unique), the usual 5 mg dose that is customary to begin coumadin is a woefully too low.

If each week, they continue to up the dose the conservative amount suggested by all the knowledgeable folks here (10% range), it takes weeks to get the INR up to adequate for that patient.

Add to that, the fact the patient is recovering and becoming more active, has better appetite each week and is going back to their usual diet which, in my case, consists of a great many veggies daily. I eat soy, broccoli, spinach, cabbage etc etc and no one told me to stop. They knew my diet and said, Eat what you are accustomed to eating. (That does not sound like a stupid clinic to me.) That diet, of course, calls for higher doses.

Because Mass General and my local coumadin manager are to up to date and current with the modern concept of 'dose the diet', no one told me to limit anything. They proceeded to 'dose my diet' and dose my continually increasing amount of exercise. My range was 2.0 to 3.0 and the highest I got was 1.8 or 1.9.... I don't remember which. Most of you would have approved of the continued conservative increase in my dosage each week. I was tested once a week and then two weeks between testing which was by finger stick. Considering I have a tissue valve, they were less concerned I was below range than if I had a mechancal. They didn't consider the .1 or .2 to be horrifyingly too much beneath my 2.0 range. They were sensible and practical. No hysteria.

I pray I never have to take coumadin again but if I do, I most assuredly would return to this coumadin clinic. They are knowledgeable, competent, calm and professional. They do what they do well.

The point of my message is that while some people have trouble getting regulated because of incompetent managers, that is NOT the case for all and it is a disservice IMO to blithely dismiss all people who are out of range as having poor coumadin management. That often is the case but it is cavalier to wave off the person who has good management, is compliant and still does not get to their range.

I educated myself about the drug I knew I would take temporarily (hopefully never again) and would not have tolerated stupidity or ignorance from anyone involved in my anti-coagulation therapy. I knew what they should be doing and I never once had to 'discuss' it with them. The choices and decisions they made were good.

Phew....... Really wanted to get that off my chest.

It is a message that should be shared from time to time as is relevant and important and should be kept in mind IMO.

 

[Ross]

The point of my message is that while some people have trouble getting regulated because of incompetent managers, that is NOT the case for all and it is a disservice IMO to blithely dismiss all people who are out of range as having poor coumadin management. That often is the case but it is cavalier to wave off the person who has good management, is compliant and still does not get to their range.

I educated myself about the drug I knew I would take temporarily (hopefully never again) and would not have tolerated stupidity or ignorance from anyone involved in my anti-coagulation therapy. I knew what they should be doing and I never once had to 'discuss' it with them. The choices and decisions they made were good.

Phew....... Really wanted to get that off my chest.

It is a message that should be shared from time to time as is relevant and important and should be kept in mind IMO.

But how many new people, especially those that set out to get a tissue valve and ended up with mechanical, know if they have a screwed up management team? Nothing Cavalier at all in teaching someone to do it the right way when most likely, at least the majority of clinics, are doing it wrong.

I'm willing to bet this person didn't educate themselves about Coumadin, because they didn't think they'd be on it. Another reason why every patient should educate themselves.

Everyone is basically educated to believe that the doctors and such are correct and never ever question it. Many are very surprised to find out how ridiculously easy dosing is, after they've been through the Jumanji of health care people that don't. What I'm saying is, how does one know if they've never been on Coumadin before, if their doctors and such are up to speed and on the same page?

 

[catwoman]

I agree with Ross.
Most people follow whatever their doctors say.
Some object to ANYTHING their doctors say.
And then there are some who do a lot of research and think about things. Sometimes they find their doctors are correct; somethings it's the reverse.

My husband is one case where our doctor's office -- NOT our doctor, since he is off on Wednesday afternoons, when John was going in for INR tests -- just couldn't increase John's dosage enough to get his INR in range after his MV repair. I started charting his INRs and dosage changes and saw we weren't getting there. So I called the office to speak to our PCP, who was on vacation, but I explained the situation to an office employee who knew I did my own testing.
I said the dosage increase was too low, and offered what I thought it should be.
I was told to have John go with my suggestion and our PCP would be notified.
John took a copy of Al Lodwick's algorithm dosing chart with him to his next INR test, and the MD on call sent back a copy of the dosing chart they were using.
Al's chart is much easier to follow than the chart the MD in our doctor's practice was using -- and it was getting John in range.
It used far too conservative of dosing increases to get him in range. His range was 2.0-3.0, and he was needing around 7mg to get there. My range is 2.5-3.5 and I was taking about 5-6mg. John is 4.5 years older than me; go figure.

Part of the reason that a lot of medical professionals "mismanage" warfarin patients is because they're just not interested in it. It's not something they do 100% of the time. And for many people, it's not an interesting subject. And they probably don't have a lot of in-depth training in it or have attended CE seminars on it.

My new cardiologist & I have discussed this. He's impressed with my knowledge & ability to manage my INR testing and warfarin dosages. His practice -- one of the largest in Fort Worth TX -- has a Coumadin clinic listed at www.acforum.org. So I would assume (but remember what ASSUME means) that someone there is smarter than the average bear at managing warfarin patients.

 

[Marty]

Offices getting better.

Offices getting better.

I have been impressed by the improvement in warfarin management by the offices around here. Alice's cardiology group at Virginia Hospital Center has special warfarin nurses who she must report to. I have monitored their management and they are good. They show a knowledge of how warfarin works. They approve of home test monitors and I sense they favor the INRatio. This is quite a change from 11 years ago when I had to use this same office. They were so mis informed then that when I related my problem to my cardiologist he told me to self dose and call him personally with any problems. My Kaiser clinic also is very good now run by PhD pharmacists who also favor home monitors and will pay for them. I don't have to do it with my private practise PCP but both the cardiologists and the Kaiser group want all test results called in for medicolegal reasons. The cardiologists also like the monitors checked against an arm stick every six months. Kaiser asks for an arm stick for readings over 4.5. Definite improvement over eleven years ago.

 

[Jkm7]

But how many new people, especially those that set out to get a tissue valve and ended up with mechanical, know if they have a screwed up management team? Nothing Cavalier at all in teaching someone to do it the right way when most likely, at least the majority of clinics, are doing it wrong.

I'm willing to bet this person didn't educate themselves about Coumadin, because they didn't think they'd be on it. Another reason why every patient should educate themselves.

Everyone is basically educated to believe that the doctors and such are correct and never ever question it. Many are very surprised to find out how ridiculously easy dosing is, after they've been through the Jumanji of health care people that don't. What I'm saying is, how does one know if they've never been on Coumadin before, if their doctors and such are up to speed and on the same page?

Ross,
My reference to blithely and cavlier is in response to the dismissive way some posts above referenced that most people who are not in range are out of range due to poor coumadin management. While that is sometimes (often) the case, I wished to point out that is not always the case. I felt those references should be counter balanced with other 'viable' explanation for lack of quickly reaching desired INR range.

It would be easy for someone with a new valve to read those posts and say to themselves...... Hmmm, my coumadin clinic must be stupid because I'm not in range. In fact, my clinic was top notch and I was not in range for the reasons I explained. I never like to read only one explanation for any issues when there is more than one very real reason.

It sometimes happens that someone expects to get a tissue valve and is surprised to awaken to the click of a mechanical valve in their chest. They need then to learn about this new drug they will take for life. But, keep in mind, many surgeons prescribe a three month course of coumadin for their tissue valvers, such as me. I did my research and reading prior to my surgery because I expected to either have a repair or tissue replacement but had been advised I would take coumadin at least briefly.

 

[Jkm7]

I agree with Ross.
Most people follow whatever their doctors say.
Some object to ANYTHING their doctors say.
And then there are some who do a lot of research and think about things. Sometimes they find their doctors are correct; somethings it's the reverse.

My husband is one case where our doctor's office -- NOT our doctor, since he is off on Wednesday afternoons, when John was going in for INR tests -- just couldn't increase John's dosage enough to get his INR in range after his MV repair. I started charting his INRs and dosage changes and saw we weren't getting there. So I called the office to speak to our PCP, who was on vacation, but I explained the situation to an office employee who knew I did my own testing.
I said the dosage increase was too low, and offered what I thought it should be.
I was told to have John go with my suggestion and our PCP would be notified.
John took a copy of Al Lodwick's algorithm dosing chart with him to his next INR test, and the MD on call sent back a copy of the dosing chart they were using.
Al's chart is much easier to follow than the chart the MD in our doctor's practice was using -- and it was getting John in range.
It used far too conservative of dosing increases to get him in range. His range was 2.0-3.0, and he was needing around 7mg to get there. My range is 2.5-3.5 and I was taking about 5-6mg. John is 4.5 years older than me; go figure.

Part of the reason that a lot of medical professionals "mismanage" warfarin patients is because they're just not interested in it. It's not something they do 100% of the time. And for many people, it's not an interesting subject. And they probably don't have a lot of in-depth training in it or have attended CE seminars on it.

My new cardiologist & I have discussed this. He's impressed with my knowledge & ability to manage my INR testing and warfarin dosages. His practice -- one of the largest in Fort Worth TX -- has a Coumadin clinic listed at www.acforum.org. So I would assume (but remember what ASSUME means) that someone there is smarter than the average bear at managing warfarin patients.

Marsha,

Your John is to be on coumadin for life. In the end, I was only on it for 2 1/2 months. I have a tissue valve and they weren't upset with me being .1 or .2 below the desired 2.0 to 3.0 range. Many here have stated repeatedly there is little difference between a 1.9 and 2.0.

The small, local clinic I used is staffed by permanent, full time coumadin manager. It is a part of a small to mid size lab. She is very knowledgeable, well trained and does her job well. Her 'boss' is nearby if she should require assistance. I never witnessed any situation she couldn't/didn't handle competently. My cardio was delighted when I agreed to go there and his practice has their own clinic but it's location is far less convenient for me. He started the 'coumadin discussion' with me and I demonstrated to him I had done my reading. He was well satisfied with my understanding and smiled widely when he realized I truly did understand it better than some of his patients who have taken coumadin for 20+ years.

Let's not play the mine is smarter than yours game. Nothing too stupid about many (most) of the doctors and support staff at Mass General Cardiac Care. They get great ratings for a reason.

 

[Bridgette]

Back to the original posters question!
Jordan, it took me about 2 weeks to get in range following surgery. Then, after I ceased taking Amiodarone (which affects the INR) 1 month post op, it took about another 2 weeks to get back in range. I'm an average person who tolerates most meds well, not especially sensitive to them etc so maybe I was just lucky due to that.

JKM7, with all due respect, and don't take this the wrong way etc, but maybe you should have addressed your concerns by PM to Ross. That reduces the chances of a thread being sabotaged.

Thanks
Bridgette

 

[mac]

Hey!!

As you can see there are alot of people here that have a world of knowledge when it comes to coumadin management. I am alittle over 5 weeks post op. Since my discharge I have been taking 4.5 mg daily. 1 after discharge was a 2.2 inr , week 2 , 2.8
week 3, 2.6, week 4, 2.4. I am not scheduled for another test for another week and am curious if I am still going to test lower. I am sticking with the 4.5mg until I see my numbers next week. If I come in at 2.1 or 2.2, I may consider the schedule a gal set up for me on a post I made earlier in regard to fluctuation in inr readings. I think all in all my readings are pretty good for post op. I don't over do it on vit. K foods, I do enjoy acouple beers now and agin, but that doesn't seem affect my numbers. I think you will find that they level out pretty fast.
Really wondering why you wanted a tissue valve at 45, only to get opened up again at 55 or 60. I am 56 and was considering going in that direction, but now I am glad I didn't. No more surgery later on in life for valve replacement. My recovery has been alright, still have numbness in my little finger and arm, which they say will go away, but I NEVER!!, want to do this again, once was enough. Good luck on your recovery and management.

Mac
AVR, single by-pass 11/19/09
carbo medics mechanical
Dr. Suri
Mayo Clinic

 

[Jkm7]

Back to the original posters question!
Jordan, it took me about 2 weeks to get in range following surgery. Then, after I ceased taking Amiodarone (which affects the INR) 1 month post op, it took about another 2 weeks to get back in range. I'm an average person who tolerates most meds well, not especially sensitive to them etc so maybe I was just lucky due to that.

JKM7, with all due respect, and don't take this the wrong way etc, but maybe you should have addressed your concerns by PM to Ross. That reduces the chances of a thread being sabotaged.

Thanks
Bridgette

Sorry, Bridgette.
I hoped something of what I wrote could be of interest to people just starting out on coumadin. It was my personal experience and didn't think it had to be kept private. I was hoping to be helpful.

There were earlier references to 'poor coumadin management' so I thought my posts on point and pertinent to the subject of the thread.

 

[dick0236]

Jordan, you are only 3+ weeks post surgery. As your activity, diet, etc. improves, you will need to adjust your warfarin for these factors. Changes in meds will also affect your INR. You should begin to "level out" in the next couple weeks. Once you get "leveled out", it's not difficult to stay in your range.....at least that is my experience and I've been on this stuff for awhile.

Here are a couple tips that work for me.

1. Do not try to hit a magic number. You are ok with any reading between the low limit and high limit they gave you. Mine is 2.5 to 3.5 and any number within those numbers is "in range". Even numbers a little above or below my range cause little concern.

2. Encourage your "coumadin/warfarin manager" to make small dosage adjustments in increasing or decreasing your INR numbers. Large changes cause a yo-yo effect. It is in your best interest to learn about how you respond to warfarin. I keep a spreadsheet with date, dosage, INR and note any external factors that might affect my INR....impresses the hell out of my PCP. As you become knowledgable, your doc should allow you to participate in your management.

3. After you have been on the drug for 90 days, talk to you doc about "home testing". After you gain a little experience you will be a better manager than any "coumadin clinic" or office nurse.....or, unfortunately, many docs.

4. Managing ACT does not require "rocket science". If you can understand hedge funds, you sure as hell can understand and manage a simple INR range.

5. DO NOT screw around with this drug. If you take it as prescribed and test periodically, you should have no problem. If you don't, it probably will bite you in the Ass......been there, done that and it was ALL my fault.

 

[terodac]

Months and mine took over a period of 18 months, it has been a lot better because I home test now. Good Luck, they just have to get your dose right along with your diet.

Also, I must add that my person that was suppose to quote "manage my doses and range" was and is not the sharpest tack in the box, and I still have to watch what she tells me. Sometimes I just laugh and dose myself, a lot of nurses and NP along with some doctors do not know about this drug like they should, I learned that real quick. I suggest you order the chart, Ross has the web page it really helps also.

 

[Bridgette]

Sorry, Bridgette.
I hoped something of what I wrote could be of interest to people just starting out on coumadin. It was my personal experience and didn't think it had to be kept private. I was hoping to be helpful.

There were earlier references to 'poor coumadin management' so I thought my posts on point and pertinent to the subject of the thread.

Oh yeah, of course your personal experience is valid and should be in the public forum if that's what you wish. I was only concerned that the thread was starting to veer a wee bit off track, that's all.
Sorry if you took offence.

 

[Jordan64]

Coumadin

I appreciate everyone's input. I understand that since I am only 3 weeks post-op my levels will fluctuate and that it will take time. I am having my blood drawn at a local lab and the results sent to my cardiologist, who I trust with my life (literally). I was told that my target range is 2.0 to 3.0 with closer to 3.0 being more suitable. I am fairly active and I used to eat everything. I am a little confused about the whole diet interaction but from what I have read here it seems that my dosage can be adjusted to my diet and vice versa. I am taking 4 mg a day right now. When I left the hospital I was at 2.14 INR and taking 4 mg daily. The next week my INR dropped to 1.8 and my dose was upped to 6 mg for 2 days and then 6 mg every other day, alternating with 4 mg. My INR shot to 3.5 and now I'm back to 4 mg a day. I have been avoiding broccoli, which I used to eat a lot of, and no booze. I used to enjoy a glass of wine or two or a beer now and then but nothing on a steady basis. I am planning on becoming active again, once my chest heals and I gain my strength. I coach all 3 of my kid's soccer teams and used to bike. I'll keep reading and posting as I get closer to these activities and see how it all fits in with my dosage. I know I have to be on this drug for the rest of my life so I will not screw around with it. My doctors have gotten me this far and I'll keep listening to them and to the people on this board who have been through what I am going to be going through. Experience is a great teacher if you listen ans I plan on listening. Thanks again to everyone. I have been reading this board for years since I was first diagnosed with aortic regurgitation and I think it is a wonderful place to exchange our experiences, fears, hopes and dreams.