The real deal with 'blood thinners' please

[Rocky]

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

Ruby,

I believe that the decision for Mechanical or Tissue has to be between you and your surgeon.

That being said, I chose mechanical. My reasons where that I was not concerned about taking drugs for the rest of my life, and the blood tests did not concern me either. Also, if I chose tissue, I would probably be facing surgery again in my mid 70's and I did not like the prospect of that.

Now to Warfarin. My surgery was in Mid January. The surgery went very well, and I was back at work in 3 1/2 weeks, so you can see that I had a very quick recovery. There was a problem with the dosage. My INR was suppose to be 2.5 to 3.5. It was being monitored by a clinic. But the numbers came in to low. And this caused me to have two TIA's (mini-strokes). After the last one, I started being monitored by my family doctor and I have been fine. I am currently on 12 mg's one day, then 13 the next.

I have noticed no side effects at all with the exception of bleeding more than i use to, which is normal. So I am very careful when I shave or use sharp objects of any kind. I use a bicycle helmet when I ride one, and will be using a helmet when I go skiing this winter.

My surgeon told me that any kind of physical contact sport was out. So no kick boxing. He did say that if I have a head bump of any kind that I need to go the hospital immediately to check for bleeding.

I will not home test. I believe that testing and monitoring for this is the job of professionals. I had enough problem with it being done by someone who was suppose to know and then did not do their job correctly. It is just as easy to go to the clinic, get the blood work done, and then my doctor phones me the same day with the result. I also don't do my own dentistry, or cut my hair, or change the oil in my car.

I have set up a system to take the drugs so that it is easy. I bought one of those one week dispensers that has four times for each day. I then load up the 28 compartments with each days meds so I end up with almost a months worth. I set my phone to go off at 6 pm each day and then take the drugs at that time. I choose the evening because I do the blood work in the morning when I do it, and the doctor then phones me the same day before I take the drugs to change the dosage if it is needed. I also put in the phone a reminder for when I have to get the blood work.

I eat pretty much what I want but try and keep it balanced and not splurge on spinach and watch the Vitamin K.

I think surgery is a big deal, that taking medications is a big deal and that listening to a professional is also a big deal.

 

[ElectLive]

Ruby - As you probably already know, this is THE place for first hand experiences in valve replacement, for good and for bad. The good news is that you learn things here never found in textbooks or shared by doctors. The bad news is that many things shared here are isolated personal experiences, often with negligible relevance to any given member of the community at large. Anything and everything can and does happen to any one of us.

As an example, permanent pacemakers are a fairly uncommon complication of valve replacement surgery, statistically speaking. I've seen the risk indicated as anywhere between 1% to 5%. However, I can think of many members I see posting almost everyday here who have one, myself included. Is it a risk? Yes. Should you be worried? No.

I have no idea what percentage of valve replacement patients have problems with Warfarin, but I would assume, as many here do, that it's pretty low. The odds are definitely in your favor, if you go mechanical, that you will handle it generally free of issues. But some don't, some aren't so lucky. That doesn't make it the wrong decision for everyone else. It just means that there is no perfect decision for everyone.

It's pretty amazing the world of valve replacement surgery. World class surgeons with years of education, training, and experience asking their patients what type of valve to put in. Seriously? But that's the problem for all of us, pros and cons either way, no idea how either scenario will interact with us personally.

Diabetes and insulin have been mentioned a few times here. I have zero experience with Warfarin, but I do have 28 years experience with insulin, and I have no doubt that insulin places far more intense demands on the day to day life of a patient. How do I feel about insulin management, though? No big deal. 8 blood tests and 4 shots a day? No big deal. Insulin pump attached 24/7? No big deal. Constant risk of a bad decision that could cause a coma and lead to a trip to the ER? No big deal.

Perspective is everything. These are all very big deals to anyone with a choice. These are all very big deals to those first experiencing it. But whatever life deals us, we learn to handle it, and we reach a new normal. Warfarin is not something you choose to improve your life, it does have risks. But it is something you choose to help solve a medical problem, and it does that job well.

You seem to be doing the proactive thing, researching the process, the risks, and the impact. The next step of course is aligning that with your own comfort levels. The decision is easy for some, harder for others. You will make the right decision for you, though, however it happens. Best wishes.

 

[neil]

i have never ever called anyone stupid for picking any valve mech or tissue and never will,i find it hurtful that anybody thinks that,i am only pointing out theres risks on both sides and neither should be swept under the carpet, lets just leave it at that,

 

[catwoman]

EL:
Very nicely worded post.
After my OHS, a few people blurted out: "Oooh! I could never go through that!" Those people apparently have never faced a life-of-death experience or life-threatening condition.
Most people will find they have more courage than they imagined.
Everyone who has had heart surgery is brave, a "hero," you might say. You have a sense of pride in what you have overcome.

BTW, grandson of some of my friends, age 16 and a diabetic since age 11, just switched from an insulin pump to an OmniPod. He is excited about playing football this fall.

 

[Bina]

The only reason that I even had the heart surgery was for my husband and daughter, without them I wouldn't have
done it. Weird to some, but that's how I felt about it.
My son in law is a Type 1 diabetic and I find that much scarier than my little pill a day and test every 2 weeks.
Oh, and I also cut hair....and I can change my car oil, AND keep my INR perfectly dosed and in range,
so I guess that I am super talented. Hee Hee

 

[Rocky]

The only reason that I even had the heart surgery was for my husband and daughter, without them I wouldn't have
done it. Weird to some, but that's how I felt about it.
My son in law is a Type 1 diabetic and I find that much scarier than my little pill a day and test every 2 weeks.
Oh, and I also cut hair....and I can change my car oil, AND keep my INR perfectly dosed and in range,
so I guess that I am super talented. Hee Hee

Or an incredible risk taker, I guess it all depends on ones perspective.

 

[JimL]

Is there a risk in changing oil?

 

[Bina]

Or an incredible risk taker, I guess it all depends on ones perspective.

Oh yes, I do realize that I could mortally stab myself with scissors, but they remain in the house anyway.

 

[Rocky]

Oh yes, I do realize that I could mortally stab myself with scissors, but they remain in the house anyway.

Stabbing your self is one thing. But counseling someone on how to use scissors, if you are not trained in their correct use, is another.

Yes there is risk in changing oil. If the oil is to hot, you could seriously burn yourself. If you have not prepared the vehicles safety correctly, it could fall on you.

My point is, there are some things that should be left to professionals. And only professionals should counsel people on how to do those things.

As a professional Driving Instructor with many, many years of experience, I see the carnage of drivers who have not been properly trained and then take someones advice who has no background to give that advice.

And that is the single biggest issue I have with some of the "advice" is see on this forum. People giving advice to others based only on their own experience.

I think that is reckless and the results could be tragic.

 

[Julian]

Stabbing your self is one thing. But counseling someone on how to use scissors, if you are not trained in their correct use, is another.

Yes there is risk in changing oil. If the oil is to hot, you could seriously burn yourself. If you have not prepared the vehicles safety correctly, it could fall on you.

My point is, there are some things that should be left to professionals. And only professionals should counsel people on how to do those things.

As a professional Driving Instructor with many, many years of experience, I see the carnage of drivers who have not been properly trained and then take someones advice who has no background to give that advice.

And that is the single biggest issue I have with some of the "advice" is see on this forum. People giving advice to others based only on their own experience.

I think that is reckless and the results could be tragic.

I hear what your saying Rocky, seriously. I've found myself on here spouting off of what I think is best for me and then spouting it off to others. I think we all do that here to some extent.

At the same time, each person that takes "advice" on this forum has to take into consideration that medicine is a practice and yes even the worlds top doctors are still practicing. What I'm trying to say is that not even the pros know all the answers and that's why we come on here to find out what others think that have been through it first hand. Doesn't mean that we bet the farm on the "advice" we get on here but its worth considering along with what your healthcare professional has said or recommended.

In the end we make the final choice to take the pill or let them cut if we're still conscious. Even though they are the pros we are still in control of our own care and we should understand the gist of how the machine works so we can make executive decisions if necessary and take control if necessary.

There's an old saying "your better off not knowing sometimes". And in certain situations in life sometimes your better off not knowing certain things, but I personally think in healthcare matters I'm better off knowing the "gist" because ultimately I'm responsible for me and my care while I'm still conscious.

 

[dick0236]

And that is the single biggest issue I have with some of the "advice" is see on this forum. People giving advice to others based only on their own experience.

I consider this is a forum for information and not a social site. People who come to the site are looking for info, support and advice. You will seldom see postings by professionals, usually for legal reasons, and all of the advice given should be taken as based on personal experience or authenticated sources. It is up to the reader to "take what they want and leave the rest". Personally, I've found 97% of the postings to be beneficial...some more than others. There is a small triangle at the bottom of each post to report an untrue or "out of bounds" posting.

My experience as a "newbie" began at a time when information on the problem or the solution was nowhere to be found except in a doctor office, assuming he knew......which meant that most of my questions went unanswered......I might not have had an unnessary stroke, had this forum been around.

 

[Rocky]

I agree with both of your postings. My concern is when someone makes bold statements based only on their own personal experience, and then someone who is not so critical in their thinking puts the same thing into practice. It is the bold statements that bother me especially when they counsel someone to go out side of the advice of their medical practitioner either by direct statement, or by implying it.

Never mind that when they need good information and good advice they are in a most vulnerable state of mind.

I wish I had found this site sooner than I had. It has been most helpful. And especially with contributors like you Dick. Your wealth of knowledge, experience and how well you have done since your surgery in 1967 is an inspiration to all. But most of all, I respect your even handed contributions.

 

[Rocky]

Back to the original post. I had my Blood work done two days ago on Thursday. My target range is 2.5 to 3.5. My doctor just called me and talked with me about my dosage, I tested at 3.6. I was taking 12 and 13, then 12 and 13, etc. He said that he felt it was a bit to high so told me to go onto 12, 12, 13, 12, 12, 13. etc, and then recheck in a week. Oh ya, did I mention that my Doctor called me on Saturday (of a long weekend)?

As a side bar, I got a pretty good bruise out of the needle on Thursday, the worse I have seen yet. It is about the size of a dime with a nice red center and a dark purple outer ring. One of the side effects of Warfarin.

 

[Freddie]

This all sounds too similar to me. My doctor used to say the same thing to me, "3.6 is a little high, lets adjust your dosage" A 3.6 is nothing to make adjustments for. One must keep in mind that the lab takes 3 different sample from your blood draw and averages the results allowing a .2 variance.

Your making a very small adjustment. As I see it, for one week (7 days) you were taking 87mg and now asked to take 86mg, chances are on your next text you'll still be around 3.2 range, so really, either way it's nothing to fret about.

As for the bruising, (as I have learned) you weren't pressing hard enough and that's just blood that has oosed out due to the lack of pressure. If the dime size grows, apply some ice.

 

[Rocky]

This all sounds too similar to me. My doctor used to say the same thing to me, "3.6 is a little high, lets adjust your dosage" A 3.6 is nothing to make adjustments for. One must keep in mind that the lab takes 3 different sample from your blood draw and averages the results allowing a .2 variance.

Your making a very small adjustment. As I see it, for one week (7 days) you were taking 87mg and now asked to take 86mg, chances are on your next text you'll still be around 3.2 range, so really, either way it's nothing to fret about.

As for the bruising, (as I have learned) you weren't pressing hard enough and that's just blood that has oosed out due to the lack of pressure. If the dime size grows, apply some ice.

I am not concerned with the 3.6 or the bruising.

 

[Freddie]

Sorry Rocky. Hope I didn't cause any hard feelings.

 

[Rocky]

No hard feelings. It was just a post to the question by the OP pertaining to the day in, day out use of blood thinners. I appreciate your response. I think there is some value to working on the dosages to see the variables. In my case, being off, caused me two TIA's and a visit to the hospital for several days.

 

[rubywhistle]

For me I am not after advice in this thread I am after the personal experiences (and I know that I may have similar ones to some people or completely different experiences if I was on warfarin). But I have liked to read peoples stories about their own ways of dealing with it – the way they take it/ test it/ what they do and don’t do because of it… it helps me and I can see how it would fit in or maybe stick out my own life.

I know that when Drs talk about low risks of this and that or unusual side effects they are talking about people not percents.

 

[Rocky]

I know that when Drs talk about low risks of this and that or unusual side effects they are talking about people not percents.

I think that is a very healthy way to look at it.

 

[lance]

Rocky
Where ACT is concerned the best advice anyone can take is to learn everything their mind will absorb and understand about warfarin.
ACT patients will receive bad advice from their professional caregivers--this is not just my experience by any means. I wish it were.
ACT patients need to recognize when they are being given bad advice and be confident enough to stand their ground.
ACT therapy is NOT rocket science--anyone willing to do so will learn.

I too wish I had found this site sooner than I did. Here is where I learned a lot about ACT therapy.