Valve Selection

[mjd414]

I am 54 years old and will undergo AVR July 14th. My question to the group is as follows. Is there anyone out there around my age when they had an AVR who would get a non-mechanical valve if they had to do all over again solely because of the issues dealing with Coumadin. My PCP told me today that he recommends that I stay clear of the mechanical valve based solely on the problems with Coumadin management......Your comments would be greatly appreciated....the sooner I reach a decision on which type of valve to have the sooner I might get to sleep during the next week!

 

[tobagotwo]

I would. And will, in about 20 years. I'm 51.

Check my recent post on your other thread ("Nervous").

Best wishes,

 

[Johnny Stephens]

Not quite your age, (45) but I have 2 mechanical valves, aortic and mitral. I would not change anything as a result of Coumadin, as I've had virtually no trouble with "managing" my INR. Of course, there was some tinkering at first.

I'm still waiting for the "issues" I'm supposed to have with Coumadin. I realize that there are some who have had problems, but I'm lucky enough to have a supportive physician whose staff has a clue about it. Only you can make this choice, and I would not presume to try to sway you one way or another.

You mention your PCP - is the choice open as far as your SURGEON is concerned?

 

[Ross]

I have a news flash for you mjd414. Even if you make a decision, your not going to sleep. Your wound up tight. We all were!

 

[Gemma]

It might be worth bearing in mind that, while a mechanical valve guarantees you'll need to be on warfarin (coumadin), not having a mechanical valve is not a guarantee that you will not end up taking it at some point anyway. Lots of people who haven't had valve replacements, as well as some with tissue valve replacements, need to take warfarin for other issues such as atrial fibrillation.There has been a lot of scare-mongering regarding warfarin and the "issues" with taking it, and many of the rumours are not true, or are at least overblown.

 

[Karlynn]

My PCP told me today that he recommends that I stay clear of the mechanical valve based solely on the problems with Coumadin management......!

Doctors, you just gotta love 'em. I'm beginning to think it's a requirement for doctors to remain in the dark on Coumadin. It seems that the majority of doctors just love to scare the crap out of people with the horrors of big, bad Coumadin. I have to say that when I hear of a doctor making comments like that, it really makes me wonder how much they know about the rest of what they practice. What else do they remain in the dark on? I really wonder how many people have been having reoperations for tissue valves simply because the doctors made them think that taking Coumadin was a death sentence.

MHO - unless you do some sort of extreme sport, Coumadin should not be the only reason someone chooses a tissue valve. Coumadin management is a valid part of a "tissue" list, but shouldn't be the only item on it.

I'm a "normal" person, I bump my knees, smash my toes, cut my finger slicing vegetables, knick my legs shaving, travel to Europe, chase my 105 lb. dog, make love with my husband (hey once a year doesn't hurt anyone! ), drink wine and do all the normal things that life gives and battle all the junk that it dumps on me. Coumadin has not been an issue. Yes, I have to take 5 minutes every two weeks to test my blood and I have to take my pills every day. But then I take vitamins everyday for my health too.

Based on when my replacement was done, I figure that the mechanical allowed me to take a trip to Italy, rather than have another valve replacement.

 

[Kenny F]

Minority Opinion

Minority Opinion

I'm in the minority so I thought I would weigh in. I'm 46, aortic stenosis, had a homograft and root up the branches. I had requested tissue and my surgeon favors tissue - the homograft was the in-surgery solution that made the most sense becsue of the distended root. At some point you have to trust the guy who is going in there...

I would go tissue again. I wanted to be clear of the whole issue at some point. At 7 months post I am no meds - no coumadin, beta-blockers, etc. I am getting back to the point where my daily thinking isn't about my heart. I felt a mech valve and coumadin would never let me feel healed. And the evidence suggests that my valve could be a very long-term or even permanent fix.

No regrets!

 

[Valve-Viking]

I agree with Karlynn, you can live as "normal" without a problem.

I had my surgery last spring, since then I´ve been to Estonia(twice),
Portugal(three times), Spain(once), France(one), Thailand,(twice),
Germany(once), Vietnam (once) + Denmark a few times. And this
is taking it easy by my standards, I gave myself some quiet last
6 months last year at work.

Few weeks back I went to Scotland hiking or close to mountaineering,
kept thinking it didn´t matter if I fell, nobody would survive anyhow -
on warfarin or not.

And I have been taking INR-tests abroad too, there´s always a possibility
to get checked up. But now I have the Coaguchek anyhow, did a few
tests while in Vietnam 6 weeks ago. It´s reassuring as a sudden change
of climate can stir up your INR.

As Karlynn, I drink wine/beer etc, I go where I want and I do pretty much
what I want too. I do downhill skiing as well, but with a helmet and I take
it a little bit easier of course.

As far the restrictions you have, it´s mainly things that are actually good for you, like drinking less, eating a balanced diet, excersizing regulary etc.

I cut myself at times and maybe I bleed more, I don´t know, I can´t
tell much difference. Sometimes I smash an arm or a leg, but I don´t get
any brouses even. I´m fairly young(37) so that will probably change.

The thing I tend to think of more, is to avoid situation where I could
really bang my head - if I can, but it´s somehow really subconscious
in many situations.

But of course if I could avoid warfarin, I´d be an even happier man, but
I do not find it so bad, not at all. And Karlynn, I even make love twice a
year to my wife - once without helmet even!

/

Martin

 

[Karlynn]

I felt a mech valve and coumadin would never let me feel healed. And the evidence suggests that my valve could be a very long-term or even permanent fix.

No regrets!

Kenny is a good example of what I mean by having other reasons on your list of "Why I want a tissue valve." If someone's sole reason is fear of Coumadin, I don't think they've done much research. I can totally respect Kenny needing to put it all behind him and how taking medicine would be a reminder. I was on so many meds and sick for so long prior to my replacement, it wasn't a culture shock for me to take a medication. And this is why we say it's such a personal choice. But hopefully an educated personal choice.

Martin, you rascal - twice a year!!?? Don't let my husband know.

 

[tobagotwo]

Coumadin Issues and Making Decisions from Fear

Coumadin Issues and Making Decisions from Fear

Yes, Coumadin can be largely benign throughout life for many people.

However, some people do better with Coumadin than others, both in terms of regimen and drug tolerance. There are enough people for whom it is a burden that it should not be taken any more lightly than resurgery.

Statistics are that as many valve recipients die over time from warfarin issues as reoperations. It can also become a serious, non-lethal liability if other health issues come around, and it interacts badly with many other drugs. A useful drug for many, but not without a price.

And you do have to be constantly aware and checking. Martin's post mentions climate changes, eating habits and changes in exercise - basic vacation stuff - as INR liabilities. While he talks about having fun and doing what he likes, for which we're glad, he also talks about doing INR checking for reassurance. This is not a bad thing, but it is not nothing.

Going from many drugs to few or one would seem an easy and positive step. Going, as many of us would, from no drugs or minor drugs to a very high-maintenance drug regimen is a major step, and would not necessarily be viewed as a cakewalk by all.

Avoiding the potential freedoms of a tissue valve solely because of fear of reoperation, especially if you've never experienced the operation, would also not be an informed decision.

Best wishes,

 

[Valve-Viking]

I wouldn´t say being on coumadine is a cakewalk, far from it.
And my surgery was an emergency so I did not have the luxury
to be given an option of chosing which kind of valve. Just woke
up and wondered where that clicking sound came from. 36 hours
prior to my surgery I thought I had a bad flue.

Slowly after finding out what coumadine/warfarin was, I was really
scared. Scared to be dependant on such a drug for the rest of my
life and I´m born 1966 so there should be plenty left!

But then you start living your life, you learn more about the drug,
how to behave, how to not behave and what scared you in the
beginning becomes your everyday routine. At this point I feel I
can do pretty much what I want to and my initial fears are not
all gone, but very manageable. My biggest fear of all is however
to feel cornered by this drug, luckily I don´t, but then again I
did not play icehockey or was a fan of skydiving or something more
brutal.

If I were given the chance of a choice today, I would not know which
way to go, I know the doctor´s here in Sweden would to 99.9%
recommend me a mechanical valve again given my age. And I did
not have a bad surgery, I hardly had any pain in my chest, if any
very manageable, so a second surgery doesn´t scare me in that
sense. Even though of course the risks increases with each surgery.

Sometimes it´s not easy being given a choice and I understand people
live & deal with coumadine in different ways, my humble approach is
that you´ll learn do deal with it, but then again when you don´t have
an option it always easier like what you got. And I´m fine with it.

/

Martin

 

[tobagotwo]

Martin, at that young age, if the Ross Procedure is not an option, I'm not sure whether a tissue valve would be the best choice. It would be a difficult thing to have to decide.

As I'm sure you know, tissue valves get chewed up rapidly in younger people. There have been very recent advances in those valves that may have changed that. They certainly are not the same tissue valves that were being used even five years ago. But there is no field data yet to support improved longevity in youthful users. No one knows. The turnaround for fast burning of tissue valves (at least the earlier ones) seems to show up in the mid to late forties, if it can be gauged from informal posts.

There is a big difference between an oldie like me (51) accepting another surgery after twenty years, and making a tissue decision for a person in their twenties or thirties, who may only get eight to twelve years out of it (a fair range of what the previous generation models might have provided).

I hope for you that your Coumadin use remains little more than a nuisance. The odds are good that it will. The big discussion here is all about percentages, after all, and life choices. I'm glad to get the opportunity to post with you, and we both realize that that opportunity only exists right now partly because of Coumadin.

Best wishes,

 

[ALCapshaw2]

My FIRST choice was for a Bovine Pericardial Tissue Valve. When I awoke from surgery, the first thing my surgeon said to me was that he had to put in a St. Jude Mechanical Valve because of 'other complications'.

I've been on Coumadin for 2 years with NO major problems. I've had a couple of 'missed doses' each year which I handle by adding 1/3 dose in the morning for the next 3 days in addition to my regular dose in the evening. This seems to help prevent large 'swings' in INR.

To my mind, the MAIN disadvantage of being on Coumadin is when it comes to OTHER Surgery or Invasive Procedures such as Endoscopy or Colonoscopy. This requires going OFF Coumadin which may be done by self injecting Lovenox or going into the hospital and being placed on a Heparin Drip (considered the safer, more conservative approach) for 3 days before and 3 days after the procedure. This is a MAJOR NUISANCE but survivable.

Complications are STILL a posibility as in the case reported on VR.com of the 70 something year old man who had a colonoscopy (negative) but suffered a STROKE and had to be put in a Nursing Home for the rest of his life. NO, I've still not had a colonoscopy EVER and frankly, I'm not sure I want to!

Ideally, this would NOT be an issue with a tissue valve.

'AL'

 

[ALCapshaw2]

One more IMPORTANT point about being on Coumadin:

I believe the HORROR STORIES about Coumadin came from BEFORE the advent of INR testing. Previously, Prothrombin Time was the standard and there was a LOT of variation in the readings.

The advent of INR testing and now finger testing units enables MUCH more consistent readings without the necessity of having veinous blood draws. Home Testing is a real boon to consistency and convenience.

Coumadin management today CAN be MUCH EASIER and MUCH SAFER than even a decade ago.

'AL'

 

[Mary]

Al,
I support your contention about administration of warafin while in the hospital. Although I haven't had valve replacement, I threw a clot from my present aortic valve and spent four days in the hospital on the IV drip.
I was ambivalent about coumadin prior to the hospitalization. Now that I've experienced it first hand, my feelings have changed. You state that it can be a major nuisance. I whole heartedly agree with your assessment. In addition, not only is it a nuisance, it is an expensive, fairly lengthy hospitalization.

In a way, I'm glad that I had the experience. It gave me an up close and personal look at the issue. In teaching it is recommended that students are given "hands on" learning activities. I underwent my own "hands on" with the warafin, and the first hand experience now becomes a major component of my decision making in regards to valve selection.
Mary

 

[Karlynn]

Complications are STILL a posibility as in the case reported on VR.com of the 70 something year old man who had a colonoscopy (negative) but suffered a STROKE and had to be put in a Nursing Home for the rest of his life.
'AL'

If I recall correctly, the stroke occured because the GI doctor didnot use any bridging therapy at all with his patient, even though the guidelines of the GI college call for it. The college also remarks that stopping warfarin is not required of low-bleeding procedures such as routine colonoscopies. If I recall, this man's procedure was a routine colonoscopy. But I may be incorrect. So for me, the scariness in this story is that the doctor was not educated on correct protocol and the patient suffered because of it.

 

[tobagotwo]

Ross's recent post about 98% of doctors being misinformed was mostly out of frustration, I assume...but it does send a concerning message about the perceptions of recipients.

The requirements for proper handling of warfarin patients seem to be often missed, to the patient's detriment. As are difficulties with going on and off of it for other medical procedures. However, at this time, ignorance on the part of some medical professionals and hospital staffs is a fact of life when living with Coumadin, and is something to be considered in the mix.

Best wishes,

 

[Karlynn]

However, at this time, ignorance on the part of some medical professionals and hospital staffs is a fact of life when living with Coumadin, and is something to be considered in the mix.

Isn't that sad, but correct. Many of us have learned the hard way, that you can't place yourself totally into the care of any physician, for anything, and just assume they know what they are doing. We are responsible for educating ourselves, whether it's about warfarin, valve replacements, OHS or anything for which our bodies require medical treatment. Thank God for the Internet.