The real deal with 'blood thinners' please

[rubywhistle]

Hi all

I know it seems like I have a million question every time I log on!! - it is because I have been asked to make alot of choices in prep for my op! (MVR). They are after a preference plan A/B/C/D as far as I can tell

Dr has suggested Mch valve but partner and I did not get much info from the Drs and Nurses about warfarin and the effects/lifestyle alterations. I found somtimes reading text books doesn't give you the real picture. We just know the small bit of info we found googleing and thought who better to ask then the ppl on it.

I see alot of you guys are home testing is this similar process to diabeties testing? Lots of talk also about 'stable' what does this mean are some ppl 'unstable'? Did anyone 'react' to the meds and have to find alternative? Are their any higher risks for young folk who will be on them 50-60 years? And what is it like on day to day? Is their anything you 'cant' or shouldnt do? (other then having kids - this they did tell me last time) And what happens if you have a bad accident do they give you somthing so that it will clot then?

I just want a bit of info of what it is like and how it is different for you

Cheers

Ruby

 

[OldManEmu]

Ruby
I can't advise you on warfarin as I am not on it.
However keep in mind that home testing in Australia is at your own expense it is not covered by Medicare or insurance.
INR testing machines and consumables are far more expensive that diabetic equipment.
Medicare only covers INR testing by a pathology lab.

 

[JimL]

All good questions, Ruby. Keep reading and thinking and asking. The decision about what kind of valve is yours, although following whatever your surgeon says makes sense. I go once a week to a clinic for a finger stick, very similar to a diabetes test, and I have the results in minutes. I go weekly because the insurance has paid for it, although that is changing for me. I've been on it for nearly ten years now, and it's just a pill I take. Warfarin has been in use for a little more than fifty years now, and I'm not aware of any long-term side effects. I do anything I want to, eat anything I want to. There are some foods high in vitamin K, and there you need to be consistent: you do not need to stop eating them, but you need to be consistent in eating them. For example, a huge spinach salad will have a huge impact on your INR unless you regularly eat a huge spinach salad. I don't like spinach, so no problem there. Stable depends mostly on managing your dosage. Some managers will get easily excited and make large changes in your dosage; that always results in instability. Others learn how to relax and make small changes in dosage, which produces stability. The rule is to change no more than 10% per weekly dosage. I personally usually change no more than 1 or 2 mg per week. I did have a bleeding ulcer a few years ago, and I was given normal blood along with vitamin K, which brought my INR down very quickly. I hope all this helps, although it's a lot to handle at once, especially before you're on coumadin.

 

[dick0236]

I see alot of you guys are home testing is this similar process to diabeties testing? Lots of talk also about 'stable' what does this mean are some ppl 'unstable'? Did anyone 'react' to the meds and have to find alternative? Are their any higher risks for young folk who will be on them 50-60 years? And what is it like on day to day? Is their anything you 'cant' or shouldnt do? (other then having kids - this they did tell me last time) And what happens if you have a bad accident do they give you somthing so that it will clot then?
Ruby

a. It is very similar to diabetic testing, except done only once per week or month, depending on your stability. I test once per month at my docs office.
b. "Stability" is staying within a numerical "INR" range, usually 2-3 or 2.5-3.5, depending on valve type or doctor preference. My range is 2.5-3.5 and I have little problem staying within that range.
c. I have been on the drug since I was 31, now 75, and have had NO long term effects...as far as I know.
d. On a "day to day" basis, the drug interferes little with my life, diet or activities. I eat a normal diet, including some kind of vit K vegetable daily. It does not interfer with any of my normal daily activities....and never has.
e. I have been in a couple of pretty bad auto accidents with no lasting problems. I have had a few falls, etc. that requred "stitches" without problem. I have been fortunate not to have any surgeries that required reversal of my INR level, so I know little about INR procedures prior to needed surgery.
f. For me, warfarin has been a very predictable drug. I have had only one bad experience, a stroke in 1974, that was due to my own ignorance and misuse of the drug. I learned, the hard way, that this is one drug that must be taken as prescribed.

 

[hook]

For me taking the pill is no big deal, testing is no big deal, and I bleed no more than I did before. I still work out, cut grass, and work with sharp tools; all not an issue. My diet is well rounded, and I don't walk around with a food list and coumadin cook book. The only food I stay away from is grape fruit; I don't remember the exact interation, but I hate the stuff anyway.

The only down side is needing an unrelated surgery and watch the surgeons freak out over the risk.

For me, the mech valve was the right choice with the options I had. I feel better than I have in years, and life looks good again.:thumbup:

 

[Megan]

Hi Ruby-Ive been on it now for about 2 years and I know how you feel. there is alot of negative "press" on being on coumadin and when I was decing what type of valve (avr though) it was troublsome but I overcame my fears and now its not a big deal for me at all and I cant understand what all the fuss was about.. i still eat and drink whatever I want and just keep an eye on how many green foods i eat!...sometimes I have blips-like this week- went to dentist and took my premeds and my inr went up- so then I ate too much cauliflower and kale and now its too low- so its an annoyance somtimes. but this is only the second or third blip in 2.5 years. and I test about every two weeks but sometimes even let a month go by by accident because ive been pretty steady all along. Hope this helps.

megan

 

[scott.eitman]

All of the above said it well. I will just add:
I asked an ER doctor friend what to worry about and all she said was "if a little old lady, on comadin, falls in her kitchen they would treat it as a truama". I had no idea what she meant at the time. What I now believe is that they worry a lot about internal bleeding, especially in the head where there is no way to relieve the pressure. I have a friend on Coumadin who fell from a roof. He did not hit his head, but they life flighted him to a major truama hospital just in case.

With all that said, I am an avid bicyclist and am not about to stop. I expect to go down sometime and expect to be tied up in a hospital while they figure out if I am OK.

I get nervous about external bleeding, but I do not exactly know why. The smaller cuts and scraps so far have not been to bad. The funny thing to me is that scraps seem to take a lot longer to scab, they do not drip blood very long, and eventually scab. I carry bandaids in my wallet just in case.

Scott

 

[Jkm7]

I only had a brief course of coumadin (under 3 months) following my valve replacement with tissue valve.
I did a lot of reading and learning and in the end was absolutely thrilled for ME I chose a tissue valve. There was no way for me to know in advance, I would require upwards of 100 mg per week in order to stay in my prescribed range. Because it is common for valvers newly beginning coumadin post op to require increasing amounts of coumadin to maintain their range as they become more active post op, exercise more, eat more etc, though my coumadin managers (who unlike many happened to be competent and current in their knowledge of the drug), I never ever reached my range when my surgeon told me to stop. He did not like I was on such a huge dose. If I hads to take that much the rest of my life, there is no way anyone can convince me it wouldn't be a 'big deal'. I could not have known ahead of time I would settle on needing over 100 mg per week.

My other fear about coumadin is not so much everyday life and activity but those times when I might need a medical or dental procedure that could involve bleeding. Seems the most problems people on coumadin have with that drug is when they have to 'bridge' while having a surgery or procedure and then getting back in their range. So many health care professionals are clueless and scared silly about this drug that unreasonable demands seem to be made on patients to stop it for excessive lengths of time. That puts the patient at risk for stroke but some doctors/dentists will not do the procedure if you don't comply. I did not want to have to deal with that mind set and risk the rest of my life.

No one can ever think to tell another person which valve to choose for themselves. This is one of those times in life when you must do the reading, you must educate yourself and you must make the choice.

My valve replacement was my second OHS, my first was not valve related and was only four years prior. I certainly knew what to expect the surgery to be like but was firm in my choice for tissue valve. I thank myself daily for having made the choice I did as it was the right one for me..... it might not be for you or someone else.

Another reason was to not take a chance on a loudly ticking valve. My surgeon said he could never predict who would have a loud one and who would not as it is unrelated to body shape/size. Tiny little ladies can have very quiet valves while big, barrel chested men can tick loudly.

The only bad choice you can make is to choose to not have the surgery. Whichever valve you select, don't look back. It will be your right choice.

(BTW, if you want babies, you can have them with tissue valve. Much, much, much riskier with mechanical valve and almost never recommended though we have seen successful pregnancies here with excellent high risk care.)

 

[Julian]

Because it is common for valvers newly beginning coumadin post op to require increasing amounts of coumadin to maintain their range as they become more active post op, exercise more, eat more etc, though my coumadin managers (who unlike many happened to be competent and current in their knowledge of the drug), I never ever reached my range when my surgeon told me to stop. He did not like I was on such a huge dose.

I've been taking 5mg a day of warfarin for 3 and a half weeks. I'm 4 and a half weeks post op. The last two weeks I've been in perfect range. On the other hand I'm aware that in several months as I eat more and I'm way more active with work and getting back in life my INR may change a lot.

That's one risk you have to take when getting a mechanical valve at this point in history, you don't know how your body will react to the drug 5 years from now. Most of the people in the world report having few problems with the drug but its the minority that have issues staying in range and having WEIRD AND HORRIBLE side effects to it, IE some people just cant take this drug and are left running naked. I don't mean to scare you or myself but this is something you must consider.

On a side note with tissue valves if your under 70 years old your probably going to HAVE TO endure at LEAST one more surgery. You won't know how well you handle a surgery like this until you go through it. For me I DON'T want to have to go through the trauma of the surgery again, the recovery is hard for ME physically and mentally. I'm serious about this, so much so that it out weighs the risk and worry of taking the coumadin. In other words I would rather risk the coumadin than going through another surgery.

Doctors and people say I'm doing and looking great for just 4 weeks post op but sometimes I feel like I'm barley getting through the days. DON'T GET ME WRONG, I HATE HAVING TO TAKE THE COUMADIN AND THE UNCERTAINTY OF MY FUTURE WITH IT BUT I KNOW I WOULD HATE EVEN MORE KNOWING FOR SURE THAT I WILL NEED ANOTHER SURGERY IN 10 TO 20 YEARS ALMOST GUARANTEED WITH A TISSUE VALVE. At least with my On-X valve I have a hope that I MAY never need another heart surgery in my life. BTW I'm 28 years old.

I guess you can say with coumadin you have a little worry everyday and with a tissue valve you have no worry everyday but HUGE worry at some point in the future. Choose your poison, your going to have to take your dose weather you like it or not, it's either going to be a little everyday or a huge dose all at once... You decide :tongue2:

 

[Duff Man]

Hi all

I know it seems like I have a million question every time I log on!! - it is because I have been asked to make alot of choices in prep for my op! (MVR). They are after a preference plan A/B/C/D as far as I can tell

Dr has suggested Mch valve but partner and I did not get much info from the Drs and Nurses about warfarin and the effects/lifestyle alterations. I found somtimes reading text books doesn't give you the real picture. We just know the small bit of info we found googleing and thought who better to ask then the ppl on it.

I see alot of you guys are home testing is this similar process to diabeties testing? Lots of talk also about 'stable' what does this mean are some ppl 'unstable'? Did anyone 'react' to the meds and have to find alternative? Are their any higher risks for young folk who will be on them 50-60 years? And what is it like on day to day? Is their anything you 'cant' or shouldnt do? (other then having kids - this they did tell me last time) And what happens if you have a bad accident do they give you somthing so that it will clot then?

I just want a bit of info of what it is like and how it is different for you

Cheers

Ruby

I think everything Dick said is pretty much right on. I don't have a prosthetic valve yet, but I did have a pulmonary embolism and genetic clotting disorders which now requires me to have ACT for (probably) life.

Home testing is a godsend and it's actually proven to reduce some of the risks of using coumadin. AFAIK, it's very uncommon to have a serious adverse reaction to the medication, but this is still a concern I had when I first found out that I'd be needing a replacement valve. There are some alternatives in the pipeline now though that aren't yet approved for use with a mechanical valve - afaik.

At the end of the day, it's really not as scary as some make it out to be. The drug should be respected, certainly, but not feared. Life for me has been pretty much the same with it as without it with the exception of testing for INR at home... which is easy.

 

[neil]

julian agree with you on it totally, choose your poison, you sound like that bloke of saw lol, you decide, thats what he said, anyway back to the serious stuff, as julian said pick you choice as there both got tradeoffs, as i read coumadin after insulin is the 2nd biggest common drug implicated in er visits, 43,000 in the usa alone,thats not a risk i like, tissue on the other hand is re op country,again not something you would like, but thats the choice, thats the bad news, the good news is its gonna save your life, and as many people on here will tell you they manage coumadin fine,also re ops are again usually done absol fine, so good luck with whatever you pick and am sure you will do just great

 

[lance]

The biggest disadvantage to being anti-coagulated is finding the professionals that know and understand the drug and how to manage it.
I've been on it for years, home test, am usually in range and have learned much information about warfarin. Actually more than a lot of professionals I've come in contact with. e.g. last week the nurse practitioner warned me about drinking cranberry juice and how asparagus would alter my INR. There, of course, wasn't any answer to my question how much over how many days because it doesn't really matter. That's why INR levels are checked.
The worst experience occurred when I developed what turned out to be A-Fib. My hear rate was astronomical and my spouse insisted I go to the ER. This was a morning I checked my INR at 4.2, my manager had adjusted the dose for the following week everything under control.
The ER doc, of course, needed to check my blood. When my INR tested venously at 4.1 the doc immediately told my to drop two days warfarin and reduce my daily intake by 10%. This was shocking because the appropriate adjustment was a 2 mg drop for one day and resume my daily dose for the rest of the week as advised by my manager. My range at the time was 3.5-4.0 something he hadn't asked. Had I been unconscious I hate to think.
So you need to learn when you are receiving bad advice, for bad advice will be given, and be confident enough to stand up to professionals when they are wrong.
I don't particularly like warfarin but there you have it.
Sometimes following surgery some patients develop A-Fib that requires anti-coagulation even if the valve is tissue.

 

[catwoman]

Another reason was to not take a chance on a loudly ticking valve. My surgeon said he could never predict who would have a loud one and who would not as it is unrelated to body shape/size. Tiny little ladies can have very quiet valves while big, barrel chested men can tick loudly.

Over the last 8 years, I have noticed that if I do hear my valve ticking (usually while in bed), I can turn my body just a little and then I can't hear the valve.

 

[Jkm7]

IMO, This is one of those situations in life where there is no right or wrong choice. What is right for one person may not be right for another though their pertinent description may well be similar. This is one of those few times when world renowned surgeons have their patients make the choice. Yes, they educate and guide their patients and always reserve the need to possibly make a different choice while in the midst of the surgery but for the most part, the majority of us get the valve we select..... or least the valve type (tissue or mechanical) with few exceptions.

(I can't speak for patients other than in U.S. I've read here where some folks with national health do not necessarily get as much choice as we do in U.S.)

 

[neil]

very well put jkm, well am from the uk and i had a choice, the surgeon even told me i could change my mind when i got in the op room lol,

 

[Luana]

The real deal is that it is no big deal at all. I freely eat whatever vegetables and salads I want. I've never restricted diet. It's almost 2 years now for me, and, except for one bump in the road early after surgery, I've had no trouble maintaining a stable INR.

 

[Jkm7]

It's no big deal except for those of us to whom it is a big deal.
Most, I daresay, the vast majority handle coumadin well if they have competent professionals managing/overseeing their coumadin therapy, for the most part they do fine.

Then there are those of us for whom it isn't 'no big deal'. It's a reality that cannot and should not be ignored. It does a disservice to people learning and making critical choices.

I 'get it' that the right dose for each is that amount that keeps us in range but when that dose is climbing well over 100 mg a week, it makes one pause..... it made my very respected Mass General surgeon 'take note'.

 

[LeakyUK]

I chose Mech at 58 and am just over 3 months out. Testing is at GP surgery and results are instant. I was steady at 4.5 mg/day for 6 weeks, then my INR fell to 1.7 (and has stayed there after an increase in Warfarin). I am back on twice weekly testing. Possibly because I have significantly increased my fruit intake, and enjoyed an odd glass of red wine. I am on various meds, so I make up a pill box to last either a week, or my next test. It then only takes a few secs to take my daily tablets.

 

[neil]

i think jkm hit in on the head,by saying its just a pill you take everyday and its no big deal is very misleading,its like saying a re op is no big deal, as i said earlier 43.000 thousand people admitted to er with problems concerning anti coags is no joke, and to give the impression otherwise is niave at best,saying that before someone jumps down my throat most people do fine,its a very hard choice and am sure one which we all would like not to take,

 

[catwoman]

That's why choice of valves is so personal.
I respect someone else's decision as long as they don't tell me that I'm stupid for choosing a mechanical. It's my life and I have no problems accepting the consequences of my decision, which was not made lightly.
I won't diss someone else who has chosen a tissue valve to avoid warfarin and is willing to face the consequences of that decision, of another surgery on down the road.

Let's say many of us agree to disagree on some things here.