AVR replacement at 41yo.. Which way to go ?

[Bina]

Put me down as over 5 years on Coumadin.....no bruising, no bleeding, no problems at all.
BUT, I am not shy to consider myself lucky in this respect, there are NO guarantees with anything in life.

 

[Lynlw]

One member persuaded his Cardio (or Surgeon - I forgot which) to let him go on Coumadin before surgery just to see how he did on it so that may be an option to consider.

The New Genetic Testing is another option, albeit, a rather expensive one from what I hear.
It would be especially interesting to know the results of genetic testing for Coumadin 'sensitivity' in people at both the Low and High End of the Normal Range. Any Volunteers for the cause of Science?

This might be a good canditate for some Doctor to conduct a Study. Sponsored Testing would be a nice incentive.

'AL Capshaw'

That is fine for finding how if you may have problems finding your range or staying in range. BUT It doesn't help figure out who will have a major bleed and end up in ICU or major stroke or have increased risks of death if you have a trauma or even fall. Which happens even to people who home test and are in range. Just like you don't know in advance how anyone will do with surgery, you never know in advance who will die of a brain bleed ect.
Yes the risks are low for both bleeds and clots, but there ARE the risks, just like the low risks of death or bad complications from having surgery.

Ps I am VERY sorry to see yet another thread posted by a scared new person was hijacked with the same old same old, Not everyone "likes" to thrash this around whenever they can..I find it very sad, that to some people it seems like it is a game and the last thing they care about is offerring support.

 

[Jkm7]

The warfarin "question" seems to be a leading factor in valve choice. Many of the concerns seem to come from folks that had been on warfarin for only a short time.....or have had no experience with the drug at all.

It is fact that if you begin the drug you must follow a very simple regimen of "take it as prescribed and test routinely"....and that is about all you need to do. If a person is unable or unwilling to follow this regimen, find another solution for your problem.

Normally, you find no long term user of warfarin complaining about the "horrors" of the drug. Anybody out there that has been on warfarin for a few years and continues to have "grave" problems with the drug?

Surely you remember the horrid experience Ross suffered when he had his teeth removed. He is probably one of the most knowledgable and competent when it comes to coumadin management of anyone.

We also heard very recently from a poster named Sarah_Louise who described her difficulties with coumadin. The responses she got were rather harsh IMO What do any of us 'internet MD's' know of her individual circumstance that makes us more competent than her team of medical professionals? I might question my own doctors or care but I would never cross that line to presume I know better than someone else's personal physicians and professionals. There is the possibility, indeed probabllity, there is so much information about which we have no knowledge as pertains to one person's individual case.

That does no one, most of all that person, any good. IMO

 

[Jkm7]

One member persuaded his Cardio (or Surgeon - I forgot which) to let him go on Coumadin before surgery just to see how he did on it so that may be an option to consider.

The New Genetic Testing is another option, albeit, a rather expensive one from what I hear.
It would be especially interesting to know the results of genetic testing for Coumadin 'sensitivity' in people at both the Low and High End of the Normal Range. Any Volunteers for the cause of Science?

This might be a good canditate for some Doctor to conduct a Study. Sponsored Testing would be a nice incentive.

'AL Capshaw'

Were I approached for genetic testing as pertains to coumadin, I possibly could agree to participate. I'd have to hear the terms etc

I would not agree to ACT seeing my surgeon wanted me off it early due to his observations of how my body handled it. If he didn't think it wise for me to finish the course he originally ordered, it could not be healthful for me to do it unecessarily.

 

[dick0236]

Surely you remember the horrid experience Ross suffered when he had his teeth removed. He is probably one of the most knowledgable and competent when it comes to coumadin management of anyone.
IMO

I certainly remember Ross's problems:eek2:......but, as I recall, he had most, if not all, of his teeth removed withing a short time and his procedures were not that simple. I have had a couple of simple extractions with no problem. I also remember that Ross is a proponent of warfarin WITH competant INR testing:wink2:.

You are also correct that he knew a lot about warfarin...like several others on this forum:smile2:.

 

[neil]

I at first thought you were a young guy and really respected your stance. I looked at your profile and saw that you are a retired telephone tech and one year my junior. Say what and HUH? Hence the avitar is misleading. This ain't face book. We are dealing with peoples lives including our own. You have no meat and potatoes behind your generalizations and as such are misleading. Show me the money regarding reops are the equivalent to being as problematic to ACT with the informed and intelligent. THIS IS FROM BDRYER which was left on here but was removed,i feel very angry by these comments , my profile is all up to date with ages etc my avitar is 4 yrs old and the reason i use it is because all my family are on it,to use the word face book well words fail me,the rest is just a rant by him mainly aimed at me,the facts on re ops etc as ive said are on here somewhere and am sure people know where,he finished off by saying this : You are getting a scolding cause your deserve it. Lose the rose colored glasses and provide mature, informative guidance to our junior members with consideration to their age.: i have always given what i think about info to the best what i can
,i found his comments rude arragant and totally without substance, i came on here to try to help people, maybe i should give it a rest for awhile, i know people on here and people in england who have both types of valve who i class as good mates, sorry for this rant but i needed to defend myself.......thanks

 

[Jkm7]

I certainly remember Ross's problems:eek2:......but, as I recall, he had most, if not all, of his teeth removed withing a short time and his procedures were not that simple. I have had a couple of simple extractions with no problem. I also remember that Ross is a proponent of warfarin WITH competant INR testing:wink2:.

You are also correct that he knew a lot about warfarin...like several others on this forum:smile2:.

The fact is and the point is that a very coumadin knowledgeable person had to have a medical /dental procedure done. He had to bridge with lovenox in order for this work to be accomplished and it darn near killed him. The fact of life is there can be any number of procedures/surgeries/treatments patients may have to undergo and seeing you say his was 'not that simple' clearly makes the point. Of course, during a lifetime there can be plenty of episodes of treatment that 'aren't that simple'. It is something one must live with.


If someone as able to manage their own coumadin as Ross suffered so horribly then it is fair to say it can happen to anyone. It is a risk that needs to be acknowledged and discussed as part of the process anyone goes through when choosing which valve is best for them.

There certainly are people who might be about as knowledgeable as Ross when it comes to coumadin management but it would be the rare lay person who is more informed.

 

[Bina]

It may be nice to have a little snack and chill out for a few hours. :biggrin2:

 

[Bina]

The fact is and the point is that a very coumadin knowledgeable person had to have a medical /dental procedure done. He had to bridge with lovenox in order for this work to be accomplished and it darn near killed him. The fact of life is there can be any number of procedures/surgeries/treatments patients may have to undergo and seeing you say his was 'not that simple' clearly makes the point. Of course, during a lifetime there can be plenty of episodes of treatment that 'aren't that simple'. It is something one must live with.


If someone as able to manage their own coumadin as Ross suffered so horribly then it is fair to say it can happen to anyone. It is a risk that needs to be acknowledged and discussed as part of the process anyone goes through when choosing which valve is best for them.

There certainly are people who might be about as knowledgeable as Ross when it comes to coumadin management but it would be the rare lay person who is more informed.

Yes, Ross sure knew what he was getting into. He had other complications and the hospital refused to operate without
the Lovenox bridge. It was risky, and Ross had to fight his way through it. Very scary stuff. The coumadin with a lowered
INR would have been fine, the Lovenox just pushed everything over the edge, so to speak.

 

[Jkm7]

Again, that is a reality of some people's lifelong dealing with ACT. Such a thing does not happen to everyone but it is also not rare for doctors/hospitals to insist upon lovenox and discontinuation of coumadin for various procedures/treatments.

Bina
It may be nice to have a little snack and chill out for a few hours.

Why chill?
Maybe I'm mistaken but I think this a useful and rational conversation.
I don't feel any anger from either side of the conversation.
How can discussing it not be useful?

 

[dick0236]

......a risk that needs to be acknowledged and discussed as part of the process anyone goes through when choosing which valve is best for them......
......it would be the rare lay person who is more informed.

My thoughts exactly. Most of us have gone thru OHS and each of us has our opinion about going thru it again....perhaps multiple times. Some seem to have no problem with doing it again, I am not one of them. I have been fortunate in that my one OHS is the only surgery, of any kind, that I have needed and I hope to keep it that way.

And "the rare lay person who is more informed" would seem to exclude the lay person with "limited" or "no" knowledge of warfarin use.

 

[Bina]

Again, that is a reality of some people's lifelong dealing with ACT. Such a thing does not happen to everyone but it is also not rare for doctors/hospitals to insist upon lovenox and discontinuation of coumadin for various procedures/treatments.





Why chill?
Maybe I'm mistaken but I think this a useful and rational conversation.
I don't feel any anger from either side of the conversation.
How can discussing it not be useful?

"chilling" is not directed to you at all

 

[Philip B]

Dunce Cap?

Dunce Cap?

No Neil, I wouldn't want anyone who chooses tissue to wear a dunce cap and sit in the corner. As I've noted in numerous posts, I respect whatever choice people make with regards to valve choice.

You're certainly correct. The risk of re-ops v. risks associated with coumadin has been discussed here many times. People are entitled to their opinions... you may be convinced earlier discussions have resolved the re-op v. coumadin issue and that's okay with me. I simply remain unconvinced.

During my time as a member here, I'm continually amazed at the number of people who show-up here convinced that taking coumadin is some kind of death sentence or activity limiting kind of drug. Sorry, if it offends you and other members, but I've not experienced any of the negative stuff. I believe my experience is worth passing along. Of course, I respect your right to differ in your opinion about this.

Why is it that many of these discussions in response to someone's questions and comments about valve choice result in someone crying foul or comments about the thread being hijacked? Geez, what's wrong with healthy discussion and lively debate?

Dunce cap... nope, you don't need one. You'll never hear me tell you to go sit in the corner either.

-Philip

 

[Duff Man]

The fact is and the point is that a very coumadin knowledgeable person had to have a medical /dental procedure done. He had to bridge with lovenox in order for this work to be accomplished and it darn near killed him. The fact of life is there can be any number of procedures/surgeries/treatments patients may have to undergo and seeing you say his was 'not that simple' clearly makes the point. Of course, during a lifetime there can be plenty of episodes of treatment that 'aren't that simple'. It is something one must live with.


If someone as able to manage their own coumadin as Ross suffered so horribly then it is fair to say it can happen to anyone. It is a risk that needs to be acknowledged and discussed as part of the process anyone goes through when choosing which valve is best for them.

There certainly are people who might be about as knowledgeable as Ross when it comes to coumadin management but it would be the rare lay person who is more informed.

I haven't had serious dental work like Ross has had, but I have had several biopsies of my GI tract at one time and I never stopped my warfarin dose. At first the doctor talked about bridging, but I let him know that since I was going to be in a hospital during the procedure and the size of the biopsy is unlikely to cause prolonged bleeding, I was not scared at all with being fully anticoagulated. He agreed to go ahead with full ACT on board.

The medical community seems to think of ACT as some kind of voodoo drug where the blood drains dangerously fast from pin pricks or cuts while shaving. Seriously - I had a nurse instruct me to be VERY CAREFUL shaving, as if I would need a transfusion if I nicked my mug. My experience so far has been to apply pressure, and the bleeding usually stops after a few seconds. The only time I actually bled like "stigmata" was when they took a long term, large bore IV out and I didn't apply pressure long enough and the bandage was loose. Blood ended up running down my arm, but I didn't notice until I felt something wet. Applied pressure and it stopped - not a a big deal to me at all. I think my inr was theraputic at the time and I was on both Lovenox and Coumadin. Usually we're not taking two ACTs at once.

Again though, this is a super personal thing. A person could have all sorts of bleeding risks and it could be a clear no-go for ACT for them. If I had a strong family history of hemorrhagic stroke or something like that, I might look alot closer at the best tissue valve available. Same goes for current conditions with bleeding risks.

As to a-fib or blood clots in legs....... we've discussed Pradaxa here. A new drug that is now approved and being prescribed. There is good liklihood that could be an excellent replacement of coumadin for those particular conditions.

Something new to consider in the whole 'mix'.

Even if pradaxa ends up being a good replacement treatment for A-fib or VTE - which really the jury is still out on - if you're lifelong anticoagulated on pradaxa, it stands to reason that, if doses are properly managed, it's similar in bleeding risk to being anticoagulated with coumadin except you don't have the 50 years of knowledge of the drug to provide insight in to how it works. What i mean to say is, we can't possibly know as much about Pradaxa as we do about Coumadin right now... at least not in my opinion. The lack of familiarity in the medical community about Pradaxa seems a risk in itself. The lack of reversal agent (that I'm aware of) is also concerning. From my perspective and to my personal situation, the only clear benefit to Pradaxa is convenience.

There are tons of reasons you could need ACT in the future. I've read that some people are on ACT just for a dacron graft, and not the valve. I know that cancer patients are extremely prone to clots, which is why you'll often find oncology and hematology doctors in the same clinic. Again, factor V leiden, where 5% of the population is thought to have it.. or protein c deficiency, protein s deficiency, anticardiolipin antibodies or lupus anticoagulant, etc etc etc. I've also read that some abdominal aneurysms can begin throwing clots in to the lower body.

Just my two cents.

 

[ALCapshaw2]

EXCELLENT Points Duff Man !

Thank you for clarifying them.

 

[Jkm7]

I haven't had serious dental work like Ross has had, but I have had several biopsies of my GI tract at one time and I never stopped my warfarin dose. At first the doctor talked about bridging, but I let him know that since I was going to be in a hospital during the procedure and the size of the biopsy is unlikely to cause prolonged bleeding, I was not scared at all with being fully anticoagulated. He agreed to go ahead with full ACT on board.

The medical community seems to think of ACT as some kind of voodoo drug where the blood drains dangerously fast from pin pricks or cuts while shaving. Seriously - I had a nurse instruct me to be VERY CAREFUL shaving, as if I would need a transfusion if I nicked my mug. My experience so far has been to apply pressure, and the bleeding usually stops after a few seconds. The only time I actually bled like "stigmata" was when they took a long term, large bore IV out and I didn't apply pressure long enough and the bandage was loose. Blood ended up running down my arm, but I didn't notice until I felt something wet. Applied pressure and it stopped - not a a big deal to me at all. I think my inr was theraputic at the time and I was on both Lovenox and Coumadin. Usually we're not taking two ACTs at once.

Again though, this is a super personal thing. A person could have all sorts of bleeding risks and it could be a clear no-go for ACT for them. If I had a strong family history of hemorrhagic stroke or something like that, I might look alot closer at the best tissue valve available. Same goes for current conditions with bleeding risks.




Even if pradaxa ends up being a good replacement treatment for A-fib or VTE - which really the jury is still out on - if you're lifelong anticoagulated on pradaxa, it stands to reason that, if doses are properly managed, it's similar in bleeding risk to being anticoagulated with coumadin except you don't have the 50 years of knowledge of the drug to provide insight in to how it works. What i mean to say is, we can't possibly know as much about Pradaxa as we do about Coumadin right now... at least not in my opinion. The lack of familiarity in the medical community about Pradaxa seems a risk in itself. The lack of reversal agent (that I'm aware of) is also concerning. From my perspective and to my personal situation, the only clear benefit to Pradaxa is convenience.

There are tons of reasons you could need ACT in the future. I've read that some people are on ACT just for a dacron graft, and not the valve. I know that cancer patients are extremely prone to clots, which is why you'll often find oncology and hematology doctors in the same clinic. Again, factor V leiden, where 5% of the population is thought to have it.. or protein c deficiency, protein s deficiency, anticardiolipin antibodies or lupus anticoagulant, etc etc etc. I've also read that some abdominal aneurysms can begin throwing clots in to the lower body.

Just my two cents.

Great points, I agree.

Or course, while it remains to be learned what the medical community doesn't know about pradaxa it is rather like dealing with what many in the medical community don't know about coumadin. We read here all the time about the nurses, doctors, dentists and coumadin managers who are ill informed as to coumadin management. The fifty plus years of use has not seemed long enough for those who should know about it to learn how to avoid the nightmare stories we sometimes hear. The roller coaster dosing, the unnecessary holding for some procedures, the poor bridging etc How can a knowledgeable nurse tell someone they'll need a tranfusion if they nick themselves shaving. That's ludicrous but obviously happens. It also happens they don't get the concept of dose the diet and not the reverse of dieting the dose. So, the fact medical community needs to learn more about pradaxa applies to coumadin as well.

As to anitidote (reversal agent) for pradaxa, I am unaware as I am also unaware of one for Plavix. I have asked here repeatedly about Plavix antidote and that question remains unanswered here as far as I can see. I have found none but the millions of patients who take paxil and have for years seem to be managed one way or another. It is likely that 'one way or another' will be equally effective for pradaxa.

My father was one of the early coumadin users and was prescribed it in the early 60's. He was one of the 'pioneers' who paved the way for the tens of millions of coumadin (warfarin) users world wide. It is a life saving drug. It is also a drug some of us go out of our way to avoid.....the best way we can. It is all part of the choices we make when facing this surgery. What is best for one is not best for someone else.

I just think this conversation needs to be a part of 'which valve should I select' discussions. The ticking noise and coumadin are the major factors most use when delibertaing mechanical vs. tissue.

The same as coumadin may be prescribed for a number of reasons, there is also the chance of mechanical valve re-op.
We're right back to no guarantees.

And now I am done with this thread. There is nothing else I know or can add so I am repeating myself.
It's been an interesting conversation and I hope useful for someone.

 

[ALCapshaw2]

Ah yes, "the chance of mechanical valve re-op".

It would he helpful if someone could find some Numbers comparing Re-op Rates for Tissue vs. Mechanical Valves.
I expect the numbers are no-where near being close.

In all the years I've been reading the VR Forums, I DO NOT recall reading of a Mechanical Valve Failure.
Yes, I have read about mechanical valve replacements for Pannus Tissue Growth and Endocarditis,
but those causes for re-ops have little to do with Valve Type and can happen to BOTH types of valves.

'AL Capshaw'

 

[Rick]

Excuse me if I offend anyone with my message - that is not my intent. Valve selection issues tend to stir emotions and I am still in the waiting room.

I write because I am close to the same age as the person who posted, early 40s. I am in the waiting room, hoping to extend my surgery time as much as possible but still get operated very much on time. I have not had to make the decision yet and have gone back and forth in thinking what I would do. The prospect was so disconcerting at the time of diagnosis that I did a lot of research - since then, I have gone about and lived my normal life and think I will come back to that decision when my cardiologist tells me it is time to get operated.

A few cold hard facts, which I wish were different (meant for the initial writer and anyone who understands I feel like I am in the same boat as all of us with this condition):

1. None of us knows when we are going to die or from what. All we can do is make the best alternative decisions on valve based on the information we may have at the time in consultation with physicians we trust. And to me, this website and the comments from its members were very supportive when I first was diagnosed and were a great source of information. The debate here is useful because we all learn and hopefully this can help us make better suited decisions as individuals.

2. If one valve choice was so superior to another for all circumstances and people, there would be no spirited debate. There would be no more studies on which is better. In my opinion, many prior posts in this thread deny the obvious risks with the valve that that person selected. Understandable, you have to figure out a way to live life without being overly concerned - healthy.

Taking Warfarin does generate risk, that is a fact -- I have been reading this site long enough to realize this. If you disagree, please go to the "In Loving Memory" section and you will find people who died from complications related to hemorraging/clotting which could or could not be related (but a higher percentage than average population and this is supported by studies previously cited on this page) or the "Anticoagulation threads". If it were me today, I would be 50/50 between an ON-X valve and a Carpentier Edwards Bovine Pericardial valve, but would be heavily influenced by the thoughts of a cardiologist and surgeon I trusted. I live in a geographic area without excellent emergency care (so if I had a problem related to hemorraging/clotting, my odds would be lower than if I lived in Boston); however, I have access to be operated in pretty much the hospital of my choice -- so what are my risks? A 2nd reop for me may carry lower risks than the potential complications of anticoagulation for me. Maybe -- i had hemorraging from aspirin usage in one of my eyes and also on my skin, ears etc. Is it as easy as saying "I never want to go through a 2nd operation"? No and no one wants to have a second operation, but no one wants a clot or a hemorrage either.

Yet, my age means the risks of potential 3rd or 4th operations are also high- what if one op doesn't go well and I need an unplanned one? At the end, I would suggest you read here; read literature enough to understand the trade-offs and most importantly, select an experienced surgeon who performs what you need very often (you may need to see a few for this before you find your surgeon).

Best wishes to you,

Rick

 

[neil]

rick good post...............you see good and bad points in both.............very well put

 

[Duff Man]

I agree JKM, it's probably all been said before. The best possible thing a valve patient can do is to become as educated about all aspects of either valve as possible to make a very informed decision they can live with - because there are huge implications for each type of valve. One forum thread is not enough to make the call.

To the OP, just make sure you're very informed and very comfortable with the selection you make. Dont' let someone else make this decision for you. Maybe the only people that should be involved in your valve selection is your spouse and your surgeon. Either valve type has significant drawbacks, but they often contrast with one another.


My aunt made a decision based on what the surgeon recommended for her. While I think we should listen to the surgeons because obviously they're very experienced, they can put a biased spin on valve selection for an uninformed patient. With my Aunt, the surgeon gave her warfarin-phobia, and suggested that her next valve replacement will "probably be transcutaneous". She already almost needs a valve replacement!! That valve technology isn't going to be mainstream for a while...