Seems there are no good choices at 34yo

[Karlynn]

Boomer,
Sounds like you are a great candidate for home testing - or "road testing"

Some insurance companies will pay for all or part of the machine. I haven't actually seen the new INRatio machine, but it looks like it would be easy to pack. QAS will help you check with your insurance for approval. You'd just need a doctor's Rx to get it started.

 

[Eowyn Rose]

Welcome

I had a bicuspid aortic valve which i got replaced with a mechanical St. Jude 10 weeks ago. I am 42 years old and was really not keen on taking anticoagulation medication. Actually i was not keen on doing anything. I just wanted it to go away by itsself. I did what the doctors ordered. I tried to figure out everything by myself and got as much information as i could. But at the end of the day, they are the professionals how could i possible get that experience in a few weeks to make such a big desision. With a leap of faith, scared worried and hobeing they are not losing me on the operation table i signd the consent form.
I made it like the most do. It does not matter how you do it, how much help you need, you will just climbe that mountain and enjoy the view on the other side. I am different now but I am not feeling i am a patient. I hardly took any medication. I strongly opposed anything pharmacutical. But i took to Warfarin. I still need to work on the dosage but no big deal.
I am sure you find heaps of support on this site, you will be crusing.
All the best
Eowyn Rose
Bye the way I love the ticking of my valve.

 

[RCB]

Not so fast- A-fib is much more tricky to solve then that. If the atrium
is enlarge, many A-fib cures don't work. My Maze Procedure(the gold standard) didn't work for me and you just need to spend a little time on Maze and A-fib forums to realize how complicated A-fib can be. Many people go through several procedures trying to get it cured. The statistics don't tell the whole story either- CC lists a 95% cure rate for the Maze, what they told me after surgery was that was for Lone A-fib( a type of A-fib that occurs with out any other heart problems). If an AVR is envolved it is more difficult
problem to solve. If it is a MVR or multible valves, it is even more difficult.
As far as INR rates for A-fib:
ACC recommendeds ............. 2.0 to 3.0
for valves:
ACC recommendeds ............. 2.5 to 3.5

Now I hate to speak for all those people who actually have experience with
taking the medicine, but I will tell you that as a 44 year user of warfarin, only a test can tell you the differnce in the above dosage. If a person takes it for A-fib or valves, you still take the pill every day, you have to test for it and if you have a tissue valve you can still have a stroke. From the stand point of a person taking warfarin, there is no practical difference, ergo no advantage
to a tissue valve if you have A-fib. CCF told me exact that 7 month ago when I had my surgery and Spillo tried to have me go tissue.

Sheyla For somebody who has never had surgery or been on warfarin, you are so quick to poo-poo the risks and misstate the case for tissue valves. Of course what can you expect from a "special agent" would would dare to compare OHS to a tonsilletomy.

 

[RCB]

sheyla...SHEYLA(like Marlon B's "Stella..STELLA!"

sheyla...SHEYLA(like Marlon B's "Stella..STELLA!"

"It is much easier to be critical than to be correct." Benjamin Disraeli

I merely am one voice, a person who leans toward what the data say. It does not mean there are no exceptions. It never did.

;-)

ST

"Cleanliness is next to Godliness."
John Wesley

Sheyla you are neither


Don't give me that pap. Your replies always come back with the same sort of 'special agent" garbage, while you always pretending to be above the rest of us and always having the inside ear. Who do you think you are Joan of Arc? If so, will someone please get me a torch! You and the other professional tissue sales types have got to be burned. Where is your pal and bosum buddy ADonis67(AKA pretty boy- watch out for the pig!), you always seemed to play off each other. Tell us if you know- where is ADonis67- don't dodge the question.

You have as much right to post here as anyone else as long as you are honest in your posts and reasonable in your asssumption. Unless you have been on warfarin for a few years and done the test, stop preaching to us
about being "managed much lower" on tissue. 2.0 to 3.0 vs 2.5 to 3.5 is only detectable by a lab test-PERIOD!
I would be really curious if anyone on this board can tell the difference of .5 INR with out a test. Can someone who actually takes warfarin answer this question(not some model who plays a heart valve pt on TV.)?

 

[tnboomer1013]

got your message

got your message

Boomer,
Sounds like you are a great candidate for home testing - or "road testing"

Some insurance companies will pay for all or part of the machine. I haven't actually seen the new INRatio machine, but it looks like it would be easy to pack. QAS will help you check with your insurance for approval. You'd just need a doctor's Rx to get it started.

Already checked into that a month or so after the knife. My ins would not go for it at all. Even after an appeal. So it is the lab every 2 weeks. Thanks anyway.

 

[geebee]

RCB,
I really have little clue as to where my INR is unless I test. I bruise just as easily at 2.0 as 5.5.
I have been in constant Afib for over a year. I am hypersensitive to medication so my cardio and I have made the decision to treat only the potential danger of Afib (i.e. clots and strokes) by closely managing my INR which is why I have started home testing.
I agree that a .5 difference in INR is NOT detectable other than by testing.

 

[tobagotwo]

I respect your knowledge of living with warfarin. I have often brought up that many people on this site use it without issues.

However, the difference between taking warfarin for atrial fibrilation and using it to combat the thrombotic tendencies of a mechanical valve is that the incidence of stoke from Afib is lower than that from the valves, one of the reasons for the lower, although overlapping range requirements for INR.

Granted, it is the same pills and the same testing, but the possibility of bleeds and bruising is reduced because the amount is reduced, and the risks of poor compliance to the low INR side are also less. If the risk profiles were the same at the higher INR, there would be no reason for the doctors to prescribe a different, lower INR for Afib sufferers with original and xenograft valves than that prescribed for mechanical valve owners.

Further, there are more methods for treating Afib than there were even a few years ago, so the use of warfarin for that purpose is beginning to decline. It is not a very high risk to take an Afib patient off his ACT meds for a few days or a week, and bridging is not usually mandated for it.

However, it is a big deal when a mechanical valve user doesn't follow the proper ACT regimen, and bridging is certainly appropriate whenever possible. A mechanical valve patient is at greater risk when separated from his or her meds by an uninformed physician for emergency treatment, dental work, or testing. There are hundreds of posts on this site that validate both that risk and the justifiable fear that it causes in those patients.

I'm sure you know that, though. The difference is in the danger level associated with not doing it. And that can only be figured out by finding out how many people have bad results (such as stroke or death) if they don't do it. That is where studies can be useful for understanding.

Best wishes,

 

[Ross]

Yeah but Bob, your only talking a mear 5 seconds or so difference in clotting times. There is virtually little difference in INR of 2 to 3 vs 2.5 to 3.5.

 

[RCB]

A-fib or valves

A-fib or valves

Lower chances of stroke for A-fib vs valves does not mean ZERO! You are really splitting hairs here. Warfarin is still the prefered way of treating A-fib
and the only drug with a long term track record. Different medications have their own problems. You even agee that once you are taking warfarin, whether for A-fib or valve, the practical effects on your ADL are the same.I will grant you that there is a statistical difference in stroke risk, but how come you never mention that there is a stroke risk with tissue valves. There is a greater risk of stroke if people smoke- maybe second hand smoke- certainly growning old has its stroke risk.

I just get very tired of those who are not on warfarin and have no experience with it, telling us who have had many year of life saving therapy how bad warfarin is. I had been on it for 43 years and never knew how suppossedly bad is was till I came here.

We should start posting the graft of how soon some tissue valve wear out for each age group. Think 15 to 20 years is what your going to get- HA,
many people don't get that at all. If your under 65 the graft line falls like a sledding hill. Let us have some mech. sales rep. come in here and point out the short comings of these studies on the risk of re-operation and how the reports only show mortality and not morbitity. These reports are FOR SURGEONS, OF SURGEONS and BY SURGEONS. They are full Employment Acts for surgeons. Lets have more smooth ad copy from from the mech. sales people pointing out the dangers of tissue valve ownership to all to people who have already made the commitment. Certainly there is no rule against a couple of their "OO7s" coming in here as just another "beautiful person looking to share their wisdom" with common heart valve people.

It is only the fair thing to do.

 

[Karlynn]

This is totally unscientific, but for me stats are only good to educate on possibilities and it bothers me when people speak about them as if they predict certainty. (My husband's brother work is in statistics and we've had many conversations along this line. I'm not casting aspersions on anyone here.) With each individual person it is a roll of the dice. I have been on warfarin for 13 years and (knocking wood as I write) I have not had a TIA, major bleed, or stroke. My brother-in-law has taken warfarin for Afib for 5 years - and has had a mild stroke. (Very mild, thank God). One would look at the statistics and say I had a much greater chance of being the one to have a stroke occur and my B-I-L would have been the long-shot.

I've driven for 30 years, my odds of having had a serious accident in that time span could statistically be shown, but the fact is I haven't had one. Every day I get in my car to drive I enter the statistical pool for serious accident with a fresh position. Every time my husband buys a lottery ticket his odds are the same. If he bought a lottery ticket every week of the year, it would not increase his odds of winning the lottery.

Someone may do a study and say the odds for having a stroke from a mechanical valve after 5 years is X. This does not mean that if I've approached year 4 without a stroke, I need to worry more about it than I did at year one. I'd wake up each morning with the odds in year 5, that I had in year 1.

Stats are stats, not certainties. Make your choice, then live life.

 

[tobagotwo]

I think the best treatment for Afib is to get rid of it, if it is at all possible for the patient. New approaches like the MAZE procedure and several new kinds of catheter-introduced ablation are the treatments I was referring to. Unfortunately, not a fix for everyone yet. But chipping away at it. I know a number of people from my personal life (off the site) who have had success with ablations.

As far as the 5-second clotting difference, that is not the only issue involved with ACT. If it were, the medical community and the FDA wouldn't bother with different INRs for different problems. They would just have one, convenient standard for everything.

I completely agree with making your choices and living your life as you feel appropriate. And certainly someone who doesn't have first-hand experience with warfarin can't issue blanket statements about living with it. When I refer to it, I try to stick to just the statistics and the content of the posts from users that hit the forums.

To another point, of course studies and the statistics that come from them don't mean everyone will have the same result. They are intended to measure likelihood in a narrow range of circumstances.

They are far from a useless tool of ivory tower philosophists, though. Valve ACT was started because of studies to determine what to do about strokes being caused by the materials and motions of mechanical valves. Warfarin is only prescribable because studies were done that determined a risk vs. benefit ratio that was reasonable from the statistics.

The amount of warfarin you maintain for Afib is different from the amount you maintain for an aortic valve, and is different still from what your INR should be for a mitral valve. How do doctors know what INR you need to have to find a balance between safety from strokes and safety from drug complications with each of these indications? Studies were done, and risks were rated on the results. Everyone on ACT for any reason is counting on the results of studies and their statistics.

We all play the odds produced from research. That's why most of us are alive today (including me). It's why the valve products get better and safer every year. If statistics didn't matter at all, we could just as well go to a surgeon with a 60% success rate as a 98% success rate. But very few of us would.

Living with warfarin is not successful for everyone. Even aside from statistics, posts to that effect show up regularly in the forums. Similarly, posts show up from those who get short shrift from their tissue valves. We are all riding the wave of those statistics, hoping to make the mean or better.

I'm not against mechanical valves or ACT, and I have championed them at times as possibly the better choice for some. As it happens, many of my friends on this site are kept alive and healthy by them. We've made our decisions for ourselves. My interest is in trying to maintain a balance of thought (as I see it, granted) regarding the options available to those who come now.

Best wishes,

 

[Ross]

How do doctors know what INR you need to have to find a balance between safety from strokes and safety from drug complications with each of these indications? Studies were done, and risks were rated on the results. Everyone on ACT for any reason is counting on the results of studies and their statistics.

Some are, some see the results as a very sketchy guideline. The whole point to the arguement is that there is no solid evidence one way or another, only suggestive. As Al Lodwick states, it's more of an art then a science. We've got Doctors running around prescribing Coumadin that don't know the first things about how the drug works. If they don't know, how can statistics be accurate?

 

[RCB]

Agree with with a lot.

Agree with with a lot.

"The amount of warfarin you maintain for Afib is different from the amount you maintain for an aortic valve, and is different still from what your INR should be for a mitral valve."

We understand that and concede that, but the main point is:

If you are on warfarin for A-fib with a tissue valve vs on warfarin for
valves, there is NO DIFFERENCE in ADL(activies of daily living) for either
valve patient or A-fib patient. You still have to take the meds, you still
have to be tested, you still have to watch your diet, etc., etc.,..............

Given that is true and that the only real difference between the two
cases is some potential statistical difference, don't make the case, as
some have here that it "managed much more" differently, when it clearly is not and a pt. in either case won't know the difference!

Is that so hard to understand!

 

[tobagotwo]

Good doctors know that everyone is different and try to adjust their treatment accordingly. This is a good thing. However, all doctors are not knowledgeable about warfarin.

The INRs used are derived from supervised clinical trials that are required of all drugs to determine safety and efficacy. As such, the statistics do not come from ACT-incompetent doctors. Rather, the results of the statistics help to keep ACT-incompetent doctors from ignorantly harming their patients.

Best wishes,

 

[Ross]

Good doctors know that everyone is different and try to adjust their treatment accordingly. This is a good thing. However, all doctors are not knowledgeable about warfarin.

The INRs used are derived from supervised clinical trials that are required of all drugs to determine safety and efficacy. As such, the statistics do not come from ACT-incompetent doctors. Rather, the results of the statistics help to keep ACT-incompetent doctors from ignorantly harming their patients.

Best wishes,

I had to reread your post a couple times. What do you want from someone who only sleeps 3 hours a day?

 

[tobagotwo]

Sorry, Ross. It would have been easier to decipher if I'd said, "Not all doctors are knowledgeable about warfarin," which better states the meaning I had intended.

With regard to the warfarin usage, to RCB's point, I also don't see a day-to-day-life difference between Afib patients using warfarin and mechanical valve patients using warfarin. For me, the difference is in the relative danger/fear factor for poor compliance or for tests and procedures that require abstention from warfarin. The risk is not nothing, but it is less. That may not be as much of a driver for everyone as it is for me.

It should be noted that an only slightly lower percentage of non-VRs in that age group wind up on warfarin for stroke prevention as well. Once you hit retirement age, the age factor becomes the main contributor to ACT.

With that said, it also follows that 70-80% of tissue valve recipients over 50 are not on warfarin at all (I'm in that group). And the percentage is much larger at the 50-year-old end of that range. And as Afib treatments improve, that percentage will expand further.

Best wishes,

 

[RCB]

With that said, it also follows that 70-80% of tissue valve recipients over 50 are not on warfarin at all (I'm in that group). And the percentage is much smaller at the 50-year-old end of that range. And as Afib treatments improve, that percentage will grow.

Best wishes,

So,.. the small statistically risk difference between A-fib with tissue valves vs mech. concerns you, while the 30% chance that you will have a-fib, does
not?

I think this conversation would have greater impact, if you were further down the road towards a re-op. You have to remember Bob, you had an exceptionally good recovery. When you have your next surgery(let's hope it is after you are 65, but not too much) and you feel the toll that age and life
has taken on you, that re-op (risks aside) might be more difficult.

I have no problem with your decision. My comments were more directed
at anyone who comes to these forums and starts preaching to us here about
how OHS is no big deal and how they would gladly do two or three, rather than be on warfarin. When if fact they have done neither!

The good people come here seeking reassurance about a very frightening
time in their life and for their love ones. I have been through four and it doesn't get any easier with practice. When someones comments use fearmongering to push people towards a certain type valve and couch it
in the type of prose that one only sees on K Street- that is dishonest.

 

[Eowyn Rose]

It is all so very interesting what i read and i am impressed by all the knowledge you all have.
I did not have access to a lot of information.
So to make my decision I though, that unless I can expierence both options at the same time and life my life with those choices till death. Only at the time of death I would know which one i would have prefered. I have complete faith the right choice is made. I am happy with my choice because I will not know what the other option would have meant for me. Every option can shorten your life when things go wrong. But most importantly each option gives me life more comfortable and more promising than i had before the operation.

Magic happens
Ewoyn Rose

 

[Gail in Ca]

I have had both porcine and now mechanical. I certainly liked the porcine better for the 11 yrs I had it. ( I also had it done at 34, along with an ascending graft). I am finally used to the clicking of the mechanical, but still not happy about the bruising, nose bleeding and longer time it takes to heal after cutting oneself. I sometimes get so tired of blood, blood, blood.
Oh, of course I am just happy to be alive, but... having a longer lasting tissue valve choice would've been wonderful back when I was 34.
Gail

 

[Toronto Guy]

Who wouldn't take a tissue valve with the longevity of a clicker?

Who wouldn't take a tissue valve with the longevity of a clicker?

I miss my pig valve

We split up in late October, and it hasn't been the same since

Those 13 years we spent together were idyllic and carefree

Free and easy, no drugs, no blood tests, no INRs, no coumadin.....

Phil