Inr?

[Curtsmum]

Hi, i have wrote that my son will be having his valve replaced within the next 12 months. The consultant has told us it will be macanical. we know he will need medication for the rest of his life.I keep seeing inr. Will this affect my son? is it blood tests? do they need doing all the time? this may sound stupid.But we havn't been given any information yet and dont know much. PAULA

 

[geebee]

Paula,

No, your questions do not make you sound stupid. Always ask if you don't know.

INR is the term used for measuring coumadin levels in the blood. You will definitely be hearing it in regard to your son once he has his valve. There is a level range the cardio will shoot for depending on the patient and the type of valve. If the coumadin level in the blood is within range, no changes will need to be made to any current dose of coumadin (or warfarin - generic name).

The level is measured with blood tests. How the testing is done depends on where you have the test done. Some labs and coumadin clinics use finger stick blood monitors and some labs actually draw blood from the arm. You may also qualify for home testing but I do not know the requirements in the UK for that.

You should probably try to find a lab or clinic that use the finger stick testing method since it will be easier for your son.

Hope this helps.

 

[bvdr]

Hi Paula,

People who have mechanical valves need to be on an anti-coagulant because, if left untreated, mechanical valves are at a very high risk for clotting around the valve. The drug of choice for anti-coagulation in this setting is warfarin (coumadin is a popular brand name of warfarin).

Because each person's metabolism is different the dosage varies from person to person and even with the same person according to diet, activity, and many other factors. Too much of the drug can make one vulnerable to bruising and excessive bleeding should one get injured. Too little of the drug and the person is at a higher risk for developing a blood clot on the valve.

It therefore becomes necessary to regularily test the blood to make sure the level is within the parameters set for a patient. This level is called the INR (international normalized ratio) and can now be tested on home units. It is not something that has to be done daily, or several times a day, like a diabetic, but more like weekly or every other week. Some people who are very fortunate and rarely need dosage changes test monthly.

There is a lot of information on this site about this. However, there is much more on warfarinfo.com.

Welcome to this site!

 

[Barry]

If you have a mechanical valve, you need to take Warfarin (Coumadin) to keep from getting blood clots. INR is a clotting-value system - the higher the INR, the slower the blood clots. So folks with mechanical valves need to get their INR checked routinely and then adjust their Warfarin doses to keep within therapeutic range. It's a real pain in the butt, but no more than that, really.

Check out any post by our resident allodwick, and you'll find a link to his website where there's tons of info about Coumadin/Warfarin.

When your kid's on Warfarin, you need to be careful whenever new drugs are taken or when new levels of some foods are eaten. For example, if you never eat spinach but then sit down and eat a bushel or two, you'll get in trouble' eat about the same amount of spinach each day and there's no problem at all since your coumadin level can be adjusted accordingly.

Same deal comes up with drugs. A lot of drugs interact with Warfarin. If it's a drug you're gonna take every day, not that big of a deal because over time they can just adjust the warfarin level accordingly. But if you're gonna take it just every once in a while, then it's a mess (I'm on the lookout for a cheap sleeping pill that doesn't interact with Warfarn, so far looks like generic Elavil will be my best bet).

If your INR is too low, with a mechanical valve you're at risk of throwing clots and getting a stroke. If your INR is too high, you're at risk of bleeding out.

Now that I've inadvertently totally terrified you with the prospect of your child stroking or bleeding out, check out more threads and links in these forums and as you gain more info you'll feel better about the whole thing.

EDIT: As I think about it, I think the biggest problem with a kid on Warfarin/Coumadin is that the kid is going to have to learn to stay out of fights. If you're on Coumadin and get beaten up, that could be very very serious and a severe blow to the head can be lethal. Now, I'm kinda lucky in that I learned at a pretty young age that I was never going to win a fight, anyway, so I learned to stay out of them.

FYI, best line I picked up, has worked since probably 4th grade, is that when someone says, "I can kick your a___!" is to simply agree with them, since they're actually quite right in my case, and take it from there. So far the unexpected agreement has defused the situation.

 

[Curtsmum]

Thanks

Thanks

I am sure the doctors will give us all the necessary information, a little nearer the time.I would just like to say a big thankyou to you all. I have learnt a lot more from visiting this site,in the last thew days. Than i have from any of the hospitals and we knew he had a heart defect before he was born.Thank you all so much. Paula x

 

[Barry]

I am sure the doctors will give us all the necessary information, a little nearer the time....

Here's the short version: Don't count on it.

I've ranted a couple of times here...

My background is psych, and in psych the docs are exquitely good about informed consent - i.e. explaining in detail the desired therapeutic effects of a drug and the potential side effects of a drug, and then with that information having the patient decide whether or not to take the drug.

Only since my heart problems a couple of years ago have I had to deal with cardiologists and general practitioners, and as often as not they just say, "Take this.", and give you no info.

Pester your doc for info, and research stuff yourself. Remember, though, not to believe everything you read on the 'net - consider the source.

 

[Ross]

Paula I would highly advise you to see Al Lodwicks site for questions about Coumadin. The reason I say this is, not even the medical field is up to speed and most don't tell you a darn thing that you really need to know. They are busier scaring you to death with urban legends and unfounded nonsense. Please see his site for your own piece of mind. They'll make Coumadin sound like the next best thing to hell and it's just not true!

Honest to God, people who take Coumadin know more about it then the medical professionals know. That is no lie!

http://www.warfarinfo.com/warfarinfo.com2.htm

See specifically this thread:
http://www.warfarinfo.com/pediatrics.htm

 

[Karlynn]

Paula,
Keep using this site and refer to Al Lodwick's site often. Ross is very correct, there are a lot of medical professionals that will not give you accurate information on Coumadin (warfarin) management.

Don't hesitate to ask any questions. I would also recommend, once your son has his replacement, that you write about the doctor's instructions regarding Coumadin management for your son. Our members here will be able to let you know right away if your son's doctor is following correct protocol. Think of us as a safe-guard.

 

[Curtsmum]

Thanks again

Thanks again

Been on Al Lodwicks site.Seems alot to take in but was worth looking at.

 

[Karlynn]

Been on Al Lodwicks site.Seems alot to take in but was worth looking at.

You'll be able to digest it in pieces. I would recommend to read the Coumadin Forum posts. It will give you an idea of who we live with Coumadin and questions that arise. I've been on it for 13 years with no ill effects.

 

[Cliff]

Inr

Inr

Hi, i have wrote that my son will be having his valve replaced within the next 12 months. The consultant has told us it will be macanical. we know he will need medication for the rest of his life.I keep seeing inr. Will this affect my son? is it blood tests? do they need doing all the time? this may sound stupid.But we havn't been given any information yet and dont know much. PAULA

Paula,
With all mechanical valves, and approximately 60% of biological valves, patients must take Coumadin to prevent clots from forming. The On-X valve seems to be more forgiving than other valves, and indeed is going through an aspirin-only clinical trial in Germany that seems to be going swimmingly so far (after 18 months).

If you can get a home INR monitor, it will be the best thing you can do to insure that your son is appropriately anticoagulated all the time. There is NO REASON that he cannot enjoy a full, active life from here on out...no matter what else you may hear!!

 

[Gemma]

Hi Paula,
Basically INR is a multiple of the time normal un-anticoagulated blood takes to clot. So a person not taking warfarin would have an INR of about 1. With a mechanical aortic valve it has to be 2-3 (or 2.5-3.5 depending on your doctor!) and a bit higher for mitral valves.
The only real lifestyle issue your son will have as he gets older with taking warfarin is that he won't be able to drink more than a couple of units of alcohol a day. My boyfriend Jim had already reached the age where getting drunk wasn't fun anymore when he had his valve replaced (at age 26), so it isn't really an issue. Assuming your son's friends don't give him a hard time about it, he should be fine. On the plus side you won't get him waking you up when he stumbles in from the pub .
There is a member here, Emma Cornish, whose daughter has an On-X valve and a home INR monitor (Coaguchek S - the one used by most hospitals in the UK and you can get the test strips on prescription). Maybe she'll see this thread and write you a reply, or you could PM her.
Gemma.

 

[Gemma]

P.S. In the UK you may never hear the word coumadin. It's a brand name for warfarin, but exactly the same thing. Jim gets whichever brand of warfarin his pharmacist has in stock and has had no problems keeping his INR in range.

 

[Barry]

What they said...

Not only will you child not be able to pursue a career a drunk, he will not be able to routinely get in knife and fist fights. He is doomed to a bleak and empty life devoid of alcoholism and bloody violence.

If your kid is given to getting into fights, you've got 12 months for him to learn another way of dealing with things, perhaps have him see a counselor. I was fortunate, in that I'd learned by 3rd grade that fighting just was not my game - I've never won a fight in my life, and learned other ways of dealing with stuff.

 

[Emma]

Hi Paula, sorry i haven't mailed you back yet - it's been really busy here - trying to get my class ready for end of easter term and all that! I will reply really soon with Chloe's story for you.
Just to reply to this one quickly though, as i hope i can set your mind at rest somewhat - and perhaps from the UK point of view too, as things work slightly differently over here as regards to getting coaguchek etc.
I think you've had it explained that coaguchek is the machine to check INR rather than a load of venus blood tests! Chloe has had the machine for 3 years and its a godsend! I love it! You just do a little finger prick and have the result in less than 2 minutes!

Warfarin really isn't as bad as some doctors would make it our to be! Well - Chloes doctors did anyway. I was scared out of my mind when they described life with a child on warfarin to me!! All i can say is, they obviously have NOT lived with such a child!!

And the others are very right too - don't go too much on the cardiologists opinions on warfarin and advice on it - they are not always right! In fact, in my 4 years of experience of warfarin - they are RARELY right about it and you do get to be the expert in this.

I've found that Chloe bruises like a peach and i worry my little head off if she takes a bad fall but other than that - and the fact she avoids contact sports, the mouth cuts/endocarditis worries of a CHD child anyway - iwarfarin is (the majority of the time) not the monster it's made out to be (plus i have discovered some drugs that actually don't interefere with her INR which i could tell you about later too, so as not to overwhelm you with information too early on).

To be honest - i have been through my times of stressing over the effect it has on Chloe and the way i see it now, is yes, warfarin is a pain in the bum - but without the artificial valve and warfarin, Chloe wouldn't be here, so i can put up with a bit of extra stress for that reason alone!!!

So, just to finish on and hopefully reassure you, your son will be able to lead a full (if perhaps not in rough, contact sporty way! lol), happy, NORMAL childhood and life - I make it my main aim to ensure Chloe has just this kind of life. Chloe is NOT the sort of child to sit and watch others and she does near enough everything her friends do and although she's aware of warfarin (and its limitations on some things) and her valve now, she lives life to the fullest - and noisiest! And is the happiest, brightest child you could meet and definately the best advert for a valve replacement there could be.

Emma
xxx