The near future (non-mechanical)

[WesternNYer]

This is just my point of view....

This is just my point of view....

I've stayed away from this topic other than a reference to my choice being consistent with my own philosophy on life. But here goes...So many people speak as if the future ( time...that is ) is a given. I tend to feel that each day is a gift to be lived fully and without regrets..Certainly,I limit the most risky of behavior(roadracing motorcycles on public roads...skydiving...and the like ) due to the responsibilities I now have to others in my family,but complicating my life further with ANYTHING that has the potential to limit me is not an option to me. And it IS an option to many.Understanding what people are willing to accept and what some are not is to understand the diversity that exists amongst us.Even if you do not agree with my choice of a tissue valve at age 43...you must certainly know it was the only choice I could make.Forget the potential effects of bloodthinners...forget the potential noise people do or do not hear...forget the fact that even mechanicals have problems....forget all that.Forget even the fact that my tissue valve may...if I'm granted the time....need to be replaced sometime in the future. All that aside...I live each day without theses concerns. When the time comes...as I said...If I'm granted another 15 or so years given the recent stats on bioprosthesis'...I'll have another surgery if necessary. Just like anyone of you will have one if circumstance warrants.In the meantime...life goes on for me without an ounce of concern in regards to POTENTIAL complications due to bloodthinners. And I'm happy for all of you who have uneventful lives on Coumadin.Just as I'm supportive of those who have had problems.So stats aside...each decision made in regards to valve choice is the right one. Now that I've said my piece...I'll leave it at that....you all have been so helpful in my search for insight during my
recuperation. Andy....Good luck with your choice. Tim

 

[PapaHappyStar]

What would bother me about choosing to die would be not being alive to be able to change my mind, so I'd say I would go with the mechanical valve because then I would be able to change my mind about mechanical valves ( sort of a self-fulfilling prophecy though ... )

 

[Ross]

Somehow this is getting clouded up. I don't see anyone saying go mechanical, all I'm asking is "What have you been told about Coumadin?" So many new people are outright lied too about the drug, that it's enough to make anyone flinch. I simply want to set the record straight for anyone reading this thread. A statement such as "I'd rather die then have a mechanical valve" to the new person who knows no better is a little more then frightening. The other thing is, everyone is saying bloodthinner and it is not a blood thinner, but an anticoagulant. It does not thin the blood, it simply changes it's clotting properties. I realize tissue is what he wants and tissue is what he's getting, I simply want to know how vast he knowledge is about Coumadin, if he has any at all. The idea is to make these threads informative to all and I think that is what we're trying to do here, not force valve issues.

 

[Dennis S]

Our most important message

Our most important message

If someone said they would rather die than receive a tissue valve, my response would be exactly the same as above. I am not looking to argue with anyone about valve choices. But- One of the great contributions of this forum is to comfort people that life-often a great life, and always a precious life-goes on (with a few tragic exceptions) after surgery and valve replacement of any type.

In my humble opinion the greatest contribution of this forum is the hope & encouragement it gives to people in difficult circumstances. I will always speak out for life. I don't care what type of valve anyone else chooses.

 

[RCB]

I sure don't want to offend anybody with the Truth..

I sure don't want to offend anybody with the Truth..

But surely I shouldn't have to bring up the fact that a tissue value doesn't mean no warfarin. A discussion about ACT shouldn't be looked on as something that is to be avoided. I'm sorry if people don't like talking about the realities of A-fib, however I can tell you personally that discussing it's potential is nothing compared to having it. Furthermore, taking warfarin is nothing compared to the problems associated with A-fib. The stats have been
discussed on this site many times. Is Andyrdj going to have A-fib added to his DNR request? No doctor would honor it anyway, at least not in America.
I'll let the UK members offer their own opinions. Cheerio Chap!

 

[tobagotwo]

A few comments from the peanut gallery...

- next generation porcine/bovine bioprosthesis: I've been fairly impressed with the 20 year follow up on the Hancock 2, and I believe there has been 8+ years very impressive follow up on the Mosaic from Medtronic. Might be optimistic, but might be reasonable to expect 15 years from one of these.

The followups are interesting and some are impressive, but they are not of the next generation tissue valves. Those showed up around the beginning of 2004 with the advent of anticalcification treatments and non-damaging preservation techniques. The studies and follow-ups you are alluding to are of the valves before their latest round of improvements. In short, the hope and expectation is that the nicknamed "next generation" tissue valves, which are available now, will last even longer than their predecessors in the studies. Unfortunately, the numbers in those studies do not hold up for the younger patient, as their body chemistries tend to chew up valves much more rapidly than we old fogies do. The newer, improved valves will probably do better for the under-45 crowd, but the results are still likely to be somewhat disappointing to young recipients.


- Ross procedure. Potentially very long term unless there is calcification of the pulmonary replacement, which is a pig to re-operate! But I have seen trials done using tissue cultured replacement pulmonary valves which shouldn't have this problem - I believe that there is around 5 years follow up at present?

The Ross Procedure has been around for many years. In fact, it was first described in England by Sir Donald Ross in 1966 (nearly a decade before you were born). There have been thousands done, and there are some very lengthy followups available. There are a number of Ross recipients associated with this site.

The pulmonary valve is generally considered the least dangerous and damaging of the valves to replace. Not, of course, to those who have to have it done.

The tissue-cultured valves are a wonderful theory, but have been a practical failure to this point. I have been highly interested in them, too. I dubbed them "chia valves." as you grew your own tissue over the denucleated collagen framework. Sadly, the company who pioneered the concept was enjoined from making them for several years, due to tragic problems. This is not a technology to rush into yet.


- Percutaneous valve replacement. Designed to sit over the existing valve, and potentially be replaced on multiple occasions. Early stages yet. Would like to know if anyone has considered how to remove traditionally implanted valves and replace them, all using the percutaneous method?

The percutaneous valves in use right now are tissue valves. However, as you point out, their strong suit - catheter implantation - is also their weak suit. First, the collapsible valves are not as hardy as the types that are implanted the hard way. Second, the implantation method involves literally mashing the old valve into the sides of the implant site. That's fine for the first implantation. What do you do with the excess material from the second one? Nor have they determined a way to remove a mechanical valve with a catheter, but that is fortunately an extremely rare necessity.

Right now, it's good for folks of very advanced years, or who are in too poor a shape to have a reasonable shot at surviving OHS. And the collapsible valves will certainly improve over time. In younger people, it will likely become the method of choice for replacing nonviable pulmonary valves first, as they endure less pressure than aortic valves. Seems a near perfect niche for a Ross patient whose pulmonary valve is misbehaving.


- If they offer you something to drink to get you "regular" in the form of syrupy sweet oil, don't drink it - it'll put you off your food. Opt for 15 minutes of suppository instead!

I agree. The pills can cause cramping, too. A suggestion: before surgery, arrange to have patient-controlled fentanyl instead of the usual morphine. You may well find that it doesn't have the horrendous constipating effect of regular morphine, or cause as much grogginess. It is a relative of morphine, and highly effective painkiller, though. I used it, and was very pleased with the results.


- Get them to give you painkillers before removing the urinary catheter and then make them be slow and gentle.

I am told that the biggest problem with removing the Foley catheter is usually incomplete deflation of the internal bulb that holds it in place before pulling it out. For me, removal of the catheter wasn't anything like I had feared, and was no big deal. Nor was the chest tube (I had one big one - it pulled out painlessly, with a liquidy schlooop sound). In fact, of all of them, the tiny, emergency pacemaker wires were the ones that burned when they were pulled out.

However, they absolutely should offer males a date-rape-level drug for their first, post-foley-removal urination. Aauuuugghhh..!


I can fully sympathize with your desire not to feel like a patient all the time, and your unwillingness to give up any of the freedoms of excess that often remain available with a tissue valve. The personal freedom argument is a difficult one to refute, as it's aligned with personal feelings and reasonable human bias, particularly in the young.

There is monitoring, there can be issues with other medical and dental procedures, and there is daily medication. Those things can be considered confining to you, depending on your personality and experiences in life.

I have a next-generation Mosaic valve due to somewhat similar personal convictions.

However, the general concern about clumsiness and cuts is not a compelling addition to that discussion, as it's largely based on misunderstanding - one that is held by the public at large and even a surprising number of doctors (and dentists). The vast majority of Coumadin users below late retirement age do not seem to have intractible issues with bruising or bleeding, nor to cling to an excessively careful lifestyle. It's largely a misplaced and inaccurate sentiment, and is best left off the talking points for avoiding warfarin, as it may dilute the other reasons.

One of the VR members who pursued a course similar to yours is Moo. You could search on his posts to get some of his insights.

Best wishes,

 

[geebee]

I will defend everyone's choices and rights to make those choices especially when those choices are made based on reality.
I have had my own motorcycle, raced 27 foot sailboats, scuba dive, use sharp knives, eat what I want, drink what I want, and simply take a pill every day. I do not understand the statements that people do not want the limitations that come with coumadin. And, shoot me if you want, but choosing death over something that I am so grateful to have to keep me alive just doesn't make sense to me.
Yes, I understand this started as a fact finding mission but I truly worry about what these statements may say to other people looking for assistance. I have worked very hard to stay in this world and do not understand making a choice to bail out just to avoid coumadin.
Sorry but I could not keep silent here.
That being said, I truly wish you well, Andy, and hope you have a long life with whatever valve you choose. Life is so very precious.

 

[Andyrdj]

Folks, thanks

Folks, thanks

Thanks for all of the inputs here, I hope I haven't shocked to many people with my attitude.

One good thing that has come out of this, for those who will be choosing the mechanical, is a dispelling of the myths.

I must stress again, to anyone reading this, that the aversion to mechanical is my own peculiar bend - people, DON'T go basing your choices or fears on mine unless you're of an extreme frame of mind like my own.

I shouldn't have gone with the "death over mechanical" option so hard, folks, I suppose it was meant to illustrate my willingness to take risks to achieve all, and it's a bit of a reaction to my local health trust who are a tad conservative in their approach.

I should tell you all a little about my past. I've grown up with this, and although I was always able to rough and tumble with the rest, I could never run as far (though incidentally I can swim like a fish) , and have always had a nagging feeling of being "different", which takes subtle bites out of a growing boy's self esteem.

When I went for my first operation, I was 17, and really basically acted like a good little patient and did as I was told. I was glad to wake up and be told I still had my own valve, and given it's lasted this long the surgeon strongly believes it was the right decision.

Anyway, throughout my 20s I had some good times, but for reasons unrelated to my heart I suffered from horrendous depression, to the point where I was feeling suicidal 4 days out of 7. At the worst point, I happened to go for my annual check up (which up until then had been pretty good) and was informed of a degree of worsening, requiring an echo-cardiogram to assess my need for replacement (which had always been assumed by them and my family to be mechanical)

It couldn't have come at a worst time, and I sank even deeper, spending
several months off work and on powerful antidepressants. Anyway, gradually I picked myself up, the results came through and they were ok for the time being.

It had raised a point with me, though - that I didn't feel in control of my fate. I had always been passive in my own treatment, wanting to get out of that annual check up as quickly as possible. I hate feeling like a patient, even just on an annual basis, so had distanced myself from it.

Anyway, last January the junior surgeon at the hospital when checking the latest results seemed to think I'd require a replacement in the next 6-8 weeks, and believed that if I spoke to the senior he'd persuade me to have a mechanical valve, despite my aversion to it, which was totally out of the blue for me. I sat stewing for 10 minutes, then the senior consultant informed me that I'd be ok for 5+ more years.

Since then I've been all over the internet checking out alternatives, and wrote to the senior consultant explaining my aversion to mechanical and asking about ross, bio etc. He was far more understanding than I might have expected, told me that the patient does have the final say, and I have been informed of the possibilities of still needing to take warfarin etc.

After all these years, I finally feel in control of it. Every patient must research the alternatives and do the same.

As for the depression, it's been and gone several times since. I'm now happier in many ways than I've ever been, since I've met the girl of my dreams, yet in some ways this has made things more difficult.

Basically, I've had a lifetime of some times of joy, but many more times of terrible, dreadful unhapinness. And I've come to the stage where I'm happy now, but have made a firm decision that I'm not going back to constantly feeling like I'm fighting just to exist.

That's why I want the tissue valve, or some option that doesn't require me to have to consider my health every day, take medication daily, consider the other health risks (which do happen) and basically having to always feel like a patient. I know, and my girlfriend understands, that to have to live like that would finish me as surely as never having an operation. It would make me feel imprisoned, angry, helpless. Plus, I already have Tinnitus on and off, which takes a practised effort to ignore - the constant reminder from a clicking valve would drive me crazy.

So there you have it, folks. I did say that you shouldn't base your decision on mine. I have agonised over it, and still do, but I'm fortunate that I can see examples on this site of people who have chosen multiple bioprostheses operations and that there is an alternative.

And physical pain from these operations, or the risks, doesn't frighten me. What I truly fear is having to live in a way that I personally could not bear.

 

[Andyrdj]

P.s.

P.s.

I understand from looking at certain sites on percutaneous vr that some companies are designing their valve with multiple replacements in mind. Anyone else have any info?

The tissue engineered valve info i originally had was form this source.
http://www.worldhealth.net/p/394,4817.html

Another user has posted a reply on this thread informing me that boston childrens hospital are using them. Any further on this?

 

[OldManEmu]

Andy I can understand your point of view. I think Tim has made some very good comments and I think Bob H as always has summed up each of the issues very well. I was 41 last year at the time of my AVR and had no other health issues before the whole endocarditis mess that led to my AVR. My goal was to have no restrictions on my life for the next 10+ years if possable. I know there are no guarantees but I wanted the best shot at it. By restrictions I mean travelling to countries with limited medical facilities (non western countries), snow skiing, blue water yacht racing and motor cycling. All these activities carry an element of risk however that risk is significantly increased on ACT. I was fortunate and my AVR went well and I have had no A-Fib problems. I am still taking some medication for blood pressure even though I do not have high blood pressure. I am hoping to have the blood pressure medications reviewed when I see the Cardio early next year. Now I am one year post op and heart function returned to normal. From what I have read here and on a few other sites it seams once the Cardio has you on blood pressure medication it is very hard to get them to take you off. I know I will require surgery again and it may not go as smoothly next time but that is a risk I was prepared to take. I was originally scheduled to have a Ross however my condition deteriorated and it was considered to dangerous and the surgeon then offered a choice between a mechanical valve and a tissue. I hope you get the result that you are looking for.

 

[Andyrdj]

More on Warfarin

More on Warfarin

Hi again folks,

To those who have instructed me to find out more, I have done so.
This site, posted on another forum, http://www.warfarinfo.com,
contains useful information.

It has not changed my opinion of it at all, however, particularly the part about needing to be carful with head injury - every time you bang your head, you need to get it checked out http://www.warfarinfo.com/head-injury.htm.

Also needing to be careful about your foods etc. - the very act of having to think so much would drive me absolutely crackers. I can just see myself losing my temper with it and putting my fist through the bathroom mirror or some suchlike.

There's only one type of life for me - the one where you can get on with it without having to think about it.

 

[Karlynn]

every time you bang your head, you need to get it checked out http://www.warfarinfo.com/head-injury.htm.

If every time I banged my head in the last 14 years sent me in for a check on it, I'd be at the Dr. or ER every 6 months. Everyone bangs their head. I have yet to have done it hard enough to cause me to go get it checked. I think the ones you check out are the ones anyone should get checked out. It's just that with warfarin those serious head injuries can bleed more quickly.

If making your choice for tissue allows you to live the next 5 or so years prior to a surgery with peace of mind - that's great. Sounds like you've had a lot to process. Hopefully in the next 5 years you'll be able to settle into a more comfortable place in your mind in case the tissue valve doesn't completely fulfill your wish to not feel like a patient 24/7.

2 children and 2 part-time jobs, not to mention living life in general, has not given me the luxury to feel like a patient 24/7. I get 2 days in 365 to feel like a patient and those are the 2 days each year I go in for my cardio check-up. And those 2 days are really more like 2 half days. I've spent the last 14 years being able to feel like wife/mother/daughter/friend/maid/cook/nanny/chauffer 24/7. (I almost said call-girl too. )

 

[Andyrdj]

misbehaving!

misbehaving!

Interesting what you read here - stories of people who basically ignore the official advice and go their own way. Good for you, folks!

Playing devil's advocate, if the alternative was death, one could always have a mechanical valve and just take no notice of it at all - take the warfarin but just booze, party, smoke, do dangerous sports and say "what the hell, the alternative was death".

Being less extreme, there are certainly a number of you who do seem to live your life a lot less strictly than the official advice. The famous "Moo", with whom I've yet to speak, seems to be such an example.

Would like to know what the actual risks are with just saying "sod it, I'll do what I want" as I may end up taking a lesser dosage with a tissue valve if the old atrial fibrillation comes into play.

I've been surprised by people who would keep the mech valve even if a stem cell based alternative was available. Have to watch this space, folks, before you know it an entirely new heart may be available. Who's up for a new set of organs they can start abusing from scratch? Only Joking.

Another one to the mech choosers: How long would a tissue valve need to last before you'd change your mind, assuming the same relative increase in mech valve durability, and same probability of atrial fibrillation?

 

[Ross]

Hi again folks,

To those who have instructed me to find out more, I have done so.
This site, posted on another forum, http://www.warfarinfo.com,
contains useful information.

It has not changed my opinion of it at all, however, particularly the part about needing to be carful with head injury - every time you bang your head, you need to get it checked out http://www.warfarinfo.com/head-injury.htm.

Also needing to be careful about your foods etc. - the very act of having to think so much would drive me absolutely crackers. I can just see myself losing my temper with it and putting my fist through the bathroom mirror or some suchlike.

There's only one type of life for me - the one where you can get on with it without having to think about it.

Andy this is what I mean, the supposed professionals that think they know best, most often know the least. They make it sound like your an egg shell with a crack in it and nothing could be further from the truth.

Hitting your head--I've slammed mine hard enough to draw blood into the car door frame. Don't ask how! No need to get it checked unless you start feeling like it's more of a concussion and then your going to get it checked anyhow Coumadin or not.

Diet--Biggest lie yet. You maintain the diet you love and adjust the dose of Coumadin for that diet. To many so called professionals are running around telling people they can't eat greens, they can't eat this or that and it's all hogwash, yes you can and you should. Body needs those things to live. I laugh sometimes because I see new people trying to measure the exact amount of vitamin k in each serving of whatever, then get dismayed because nothing is working according to calculations. Skip that crap and eat like a human. Don't make it hard when it isn't.

Thinking--You want to know the truth, the only thought any of us really have when it comes to Coumadin? Remember to take the pill each day. That's it, all the thinking required.

Limiting of life--Nonexistent. It hasn't stopped me from doing one thing that I want to do and it never will either. People go sking, biking, climbing, a few into martial arts, firefighting, etc. There is no reason to be hampered unless you want to be.

The drawbacks--Frequent INR testing which if can be done at home, isn't that bad. Some Surgical procedures will now require bridging therapy which can be a hassle, but in the grand scheme of things, isn't bad either.
Finding someone who really knows what they are doing to manage your case can be difficult, but not impossible.

I respect your choice and I'm not trying to sway your decision in anyway, I only want you to know the truth as well as anyone else reading this in the future, regarding Coumadin and show that it is NOT THE BIG BAD MONSTER that lots of the medical field would have you believe.

 

[JCDavis81]

Andy,

We have somewhat similar backgrounds. I was born with aortic stenosis and felt many of the same things that you must have felt growing up. The only sport I was allowed to play was baseball and I always becaming winded faster than the other kids. At times it was hard to deal with, but I think dealing with it has made me the man I am today. A long time ago I realized I had a choice between being mad about the whole thing and accepting it -- I chose the latter and it's made me a happier person.

When I was 16 I had the ross procedure. I thought it was great and hoped that I would never have to have surgery again. Unfortunately, my hope was misplaced. Four years after my ross it began to fail and my aortic root expanded to a dangerous level. I was told I needed a reoperation and finally, this year, my aortic insufficiency became so bad that I decided to get it fixed.

Luckily I found a great surgeon. He gave me a 75 percent chance that he would be able to FIX my AV and that I would never need surgery again! What a great option! He said he would check my PV to see if it was working properly but thought it would be fine. Of course, if he couldn't fix it, I needed a plan B -- tissue or mechanical.

It was a really difficult choice for me and my girlfriend and my family. Finally, after learning all the statistics, I chose mechanical -- basically, because I'm afraid to die -- I can't put it anymore plain than that. The mortality rate of a 2nd surgery for the AV is about the same as the first <2 %; However, for a third surgery, that rate jumps to more than 10 %. I wasn't willing to play those odds. Eight years ago, when I had my first surgery, I didn't care, I was a teenager and I wasn't afraid to die, nothing could hurt me...now, I am. My life is great right now, and I'm sure it will continue that way. I didn't want to put my future wife and children through a third surgery where I would have a 1 in 10 chance of not waking up. I didn't want to raise children for a decade and then leave them because I made a decision to have tissue. I just couldn't bear the thought of that.

In the end -- the repair did not work out. I ended up going to sleep thinking I would just need a repair, and I woke up with a mechanical valve in my AV position, a porcine valve in my PV position and the repair of a hole in my mitral valve. It was certainly a tough pill to swallow -- but again, the only thing to do was accept it, so that's what I'm trying to do. Coumadin scares me, but I'm getting educated and i'd much rather take a pill every day than the alternative (but to each his own). I do hear the clicking of my valve most of the time and while I thought it would drive me crazy, it actually can be quite soothing.

Andy, you've made this decision - that's the hardest part. It's so personal, no one can tell you what you should do and you should be happy that you've found a solution you can live with. Truly, that's what all of us heart patients strive for and to each of us, what we can live with, is different.

I think that to an extent you remain uninformed or uncaring about the truth. The people on this board are wonderful and they helped me greatly through pre-surgery and so far during post-surgery. Those with mechanical valves are not just saying "sod it, I'll do what ever I want" - they're educated about coumadin and know what they can and cannot eat, what they can and cannot do. Most doctors are NOT as educated about coumadin as these people are. Believe me, when it's something that you have to live with for the rest of your live you BECOME an expert. Look, the most important people to learn from about this are those that deal with coumadin everyday. In the future, please be a little more careful when characterizing the thoughtful comments of members like geebee, ross, karlynn and all the rest. lets alll try to respect everyone else.

Happy Holidays,
Joe

 

[Andyrdj]

Ta again

Ta again

Always good to know that even the worst case isn't as bad as you might hope.

How do you adjust dose to diet? I never have a very regular diet - some days I stuff myself, others I don't feel hungry at all. I'm not life's biggest nutrition counter!

Also - anyone reading have any stats to back up Ross's story? Anecdotal evidence is worth having, but would like to know what studies there have been relating illness rates to how well people followed advice.

How do you do th INR testing?

 

[Mary]

Andy,
If I were going to worry about anticoagulation, I would be more concerned with bridging issues than what you eat or banging your head.
You might check this link to see a recent thread on Lovenox reliability.
Bridging was the reason I chose to go with a bovine valve; I would have preferred the Ross procedure but settled with an Edwards.

http://www.valvereplacement.com/forums/showthread.php?t=13120&page=2

 

[Andyrdj]

To JCDavis81

My apologies for my tone - very characteristic of the English to swear and curse a lot in a dry yet friendly manner! See the film EuroVaction for an example of this.

Like I said, I was playing devil's advocate - I haven't seen anyone be as extreme as the example scenario I was putting forward, but wanted to know the consequences should I prove to be so rash , or even slightly rash, myself.

People - please all be happy with your decisions. I've found out a lot from this, opinions from both sides of the debate. Well done, the experts who are in the "firing line" here.

Let me stress again my own peculiar nature, and also inform people I have no dependants (children) and have no intention of ever having any (I can't abide kids, though I do think they deserve the best a parent can offer) so my decision will obviously be based on my own welfare more.

Acceptance is always a difficult one. I understand that self-pity and wallowing in misery gets you nowehere - but I reserve the right to the odd bit of melancoly now and then, as there's nothing so tiring as forcing yourself to be cheerful! Another english trait - we all love a good moan!

I must confess to a bit of a personal quirk here, too - the idea of "accepting" things has always been as maddening to me as "do as your told" used to be as a child. I could never be as passive as that whilst remaining myself - which is why I feel I've had to look into riskier methods which potentially offer more.

This debate has shown me how people who chose either option look at life and how they live. Neither is "wrong" or "contemptible", but I find myself empathising so much more with those who have made the same decision as me.

Which is why I believe I have made the right decision. I hope these last two paragraphs, and the debate overall, will be of help to someone else making the decision.

 

[Ross]

With the mechanical valve, we are given certain ranges for our anticoagulant levels to be at or INR. The ranges are general 2.0 to 3.0 and 2.5 to 3.5., Some higher, some lower depending on their circumstances. A nonanticoagulated persons INR is 1. or .8 seconds to 1.2 seconds to clot.

Anyhow how to dose the diet. First thing that has to occur is finding the dose that keeps you stable in your range and if your eating normally then, not much else need be done, but most folks are recovering, not eating well, on medications that may affect INR etc. Once your stable though, say you increase your vitamin k intake for whatever reasons, your INR will fall which will require a dose adjustment usually no more then 10-15% more in milligrams per week to keep you in range. It's not rocket science and honestly if you can dose yourself, your likely way ahead of most people. The thing is to TRY to be consistent. I don't know anyone that is really consistent, not even myself, but try to keep in the ball park. Diet really plays a very small part in your INR management.


The INR test itself or Protime test is drawn via vein stick at a lab or by fingerstick with some labs and home testers.

I'm sure someone has study figures for some things. The problem with studies though, is that they general focus on the older population and not the group as a majority which sort of skews the outcomes for a clear picture. After further thinking about this question, the best study figures your going to get is from the people here who are actively taking it!

 

[Ross]

Playing devil's advocate, if the alternative was death, one could always have a mechanical valve and just take no notice of it at all - take the warfarin but just booze, party, smoke, do dangerous sports and say "what the hell, the alternative was death".

The whole reason we had surgery was to have life. I don't know any of us that is stopping our lives because of it.

Being less extreme, there are certainly a number of you who do seem to live your life a lot less strictly than the official advice. The famous "Moo", with whom I've yet to speak, seems to be such an example.

Moo is young and enjoying his youth. Did you listen in your 20's? I know I didn't. Yes, he's extreme, but hey, it's not stopping him.

Would like to know what the actual risks are with just saying "sod it, I'll do what I want" as I may end up taking a lesser dosage with a tissue valve if the old atrial fibrillation comes into play.

It wouldn't be less of a dose persay, but that which would keep you in the prescribed range by your Doctor. Afib is VERY common with surgery. Some have it acutely and some have it Chronically afterwards.

I've been surprised by people who would keep the mech valve even if a stem cell based alternative was available. Have to watch this space, folks, before you know it an entirely new heart may be available. Who's up for a new set of organs they can start abusing from scratch? Only Joking.

If your young, I'm for anything that is going to keep you away from further surgeries. I nearly died during each of mine. I do not get along with surgery at all. I have no doubt in my mind that I would not make it during a third.

Another one to the mech choosers: How long would a tissue valve need to last before you'd change your mind, assuming the same relative increase in mech valve durability, and same probability of atrial fibrillation?

When they make a tissue valve that can outlast my lifetime, I'm game. So if it were of mech durability, I'd have no problem with it. Afib is just part of the package. Some have problems, some don't. One thing is certain, your risks of developing additional problems increases with each surgery, so it's not something you want to keep doing regardless of how many times it can be done.

Well I've said all I have to say, so now, on with the original questions. Sorry, but I want the newbies to know the truths before making irrational decisions because of the falsehoods of Coumadin.