New member would like to introduce himself (AVR soon).

[Jim]

Chuck, your situation sounds similar to mine. I am 40 and found out about that I had a murmer at a routine checkup on something else. Kind of funny... go in about a simple pain somewhere else which turns out to be nothing and the doc finds out that your heart doesn't sound right.

I have had the fortunate opportunity to have the past 5 years to do research. When I first found out, I thought there would be a lot of advancements over the next 5 years. The most noticable advancements in valves I have observed since I have been diagnosed has been the ATS and ON-X valves that require low INR. Someday, it is hopeful that you will be able to go on aspiron therapy rather than Caumodin with these valves.

There are a lot of innovative things going on out there and probably a lot of stuff we don't yet know about. Unfortunately, it takes time to convert technology into mainstream medicine. Feel free to review the "New Advancements" forum over the past 5 years and take a look.

Best of luck and welcome to the site!

Jim

 

[tobagotwo]

The things you mention - the occasional cuts and the glasses of wine - are not put out of the question by warfarin (Coumadin). The triathalons are on the naughty list for both tissue and mechanical valves because of the stress of the heart trying to oxygenate the body so rapidly, so you would do them against recommendations either way (there are folks on VR.com - on Coumadin - who do that, by the way).

I can appreciate your not wanting to use Coumadin. I have a Mosaic tissue valve that will eventually have to be replaced myself, partly from not wanting the complications of warfarin in my life. I am content with that decision. But be aware that if you were to have a tissue valve implanted, you would require at least one and arguably two more surgeries in your life, unless catheterization-implanted valves become the norm.

Several people younger than you have determined to do that recently, and it is becoming more common. If a tissue valve is truly your choice, and it is not contraindicated by unexpected tissue disorders, I'm sure there are other excellent thoracic surgeons near you who are amenable to it, and may even prefer it.

However, you need to determine what your personal drivers are. Subscribing to more surgeries is no less of a burden statistically than having a mechanical valve and using warfarin. The shift is that your risks are heightened at the times of your resurgeries, rather than being slightly raised on a day-to-day basis. And if you develop chronic atrial fibrillation, you may wind up on Coumadin anyway.

Also, some people tolerate surgeries better than others. Each time you have a resurgery, you are older, and risk having more unrelated health issues that can affect the outcome. Nancy's husband, Joe, has had a number of thoracic surgeries for his lungs as well as his valves. This tends to make any kind of further chest surgery more difficult to recover from. Could that happen to you? I don't know. I'm planning for it to not happen to me, but it is a calculated risk for anyone.

The risks of a mechanical valve are often misspoken as being due to Coumadin. Coumadin is what makes it possible for you to live with a mechanical valve at all, which would cause fatal blood clots without it in most instances. If someone has a stroke on a mechanical valve, it is in spite of the warfarin, rather than because of it. Bleeding incidents are attributable to Coumadin, but overall, account for less than half of the risk for mechanical users.

The other risk associated with warfarin seems to be from professional ignorance. This is the worst, only because it is preventable. To my viewpoint, stroke rates for mechanical users would be lowered significantly if gastroenterologists, proctologists, and dentists all either learned to ply their crafts on (or in) patients with full warfarin protection, or using appropriate bridging. Being an informed Coumadin user significantly betters your chances of not having these problems.

The choice was and is yours, tissue conditions permitting, and one cardiologist and one surgeon's opinion notwithstanding. Just go into whichever choice you make with as clear an understanding as possible of its limitations, because you will truly own it once it's sewn into you.

Best wishes,

 

[MarkU]

The things you mention - the occasional cuts and the glasses of wine - are not put out of the question by warfarin (Coumadin). The triathalons are on the naughty list for both tissue and mechanical valves because of the stress of the heart trying to oxygenate the body so rapidly, so you would do them against recommendations either way (there are folks on VR.com - on Coumadin - who do that, by the way).

Just for the record, I have a mechanical valve and am on Coumadin. I train and compete in triathlons WITH the full consent and approval of my both my cardiologist and primary care physician.

On my cardiologist's recommendation I did give up heavy weightlifting and bodybuilding after my AVR. At the same time, he put absolutely NO restriction on my aerobic exercise, and has in fact, encouraged to me to do as much as I want to and can handle.

In the 4-1/2 years since my surgery my left ventricular hypertrophy has reversed itself and my resting heart rate has dropped from the mid 60's to the high 40's. My blood pressure is 107/60. These are indicators of improved cardiac function, and would not have occured if I had just been sitting on my couch for the past couple of years.

With my responsibilities to my family and job, I would consider it totally irresponsible to engage in any activity against my doctors' recommendations. I personally resent the implication that as a triathlete I am doing anything either irresponsible or reckless. Every case is unique and should be evaluated on its own merits.

Mark

 

[tobagotwo]

If you go through Bill Cobit's current thread http://www.valvereplacement.com/forums/showthread.php?t=11738 you'll see that I completely agree with you, Mark.

What the doctors recommend and what really works is not always in synch. The "official" recommendation was what I was referring to, and I don't subscribe to it myself. I don't believe you are being reckless, and am proud to be in the same forums with you and your achievements.

Ten years from now, they'll change those recommendations. Or maybe next year. Until then, it depends on enlightened cardiologists like yours to do the right thing individually. For now, you're a heretic, an iconoclast, or a pioneer, depending on who wants to apply the label. I vote for pioneer.

Best wishes,

 

[Guest]

I talk to doctors every day. When they start that bleed to death talk, I ask them. Did you ever treat a gunshot wound patient who lived? The answer is always, "Yes". Then I ask do you honestly think that someone who gets a paper cut, nicks themselves shaving, rams a screwdriver in their finger etc will bleed more than the gunshot person. They get this funny look on their face. You know that they have been sucked into the "legend of bleeding to death".

I have asked numerous trauma surgeons, trauma nurses, warfarin managers etc if they personally know of someone who bled to death from a cut to an arm, leg or torso. The answer has always been no - except for one person who slashed his wrists in a suicide attempt and did it a little too well.

 

[Jim]

Al, good points! I have a question. Is there a direct relationship between the INR and the length of time it takes for blood to start the clotting process?

In other words, if I get a mechanical valve and have to maintain my INR at 2.5 for the rest of my life, is it going to take 2x, 5x, 10x, or 100x more longer to stop the bleeding on a cut from shaving?

Jim

 

[Guest]

Answer to the relationship question - yes and no.

The PT only measures the clotting time associated with prothrombin. This is what warfarin affects. It does not measure the contribution of platelets or their inhibitors (aspirin and Plavix).

What I tell people is that this is not an exact science. But if they are working in a shop, shaving etc and they cut themselves it will take about 2 to 4 times as long for the bleeding to stop with warfarin. So something that would take a minute to stop before warfarin will now take 2 to 4 minutes to stop. Four minutes can seem like an eternity but in the scheme of life a 4 minute bleed from a cut is not life threatening.

Another way to look at it. You can lose about 2 pints of blood before you get in big trouble. Go in the kitchen or garage and throw a quart of milk or oil on the floor. Now pick it up with Kleenex. Do you think that you will lose more blood than that from a shaving nick?

A mechanic told me that a quart of oil spilled on a garage floor will spread out to approximately the size of a mid-sized car.

That is another reason that I discount the reasoning of someone who says that they need to get a tissue valve because they have a job where they are prone to cuts. Or worse yet because they are clumsy. They simply have not gotten facts about warfarin but old legends about rat poison.

 

[Steve]

Coumadin

Coumadin

I have to second, third, and fourth all of the information on coumadin. I've been taking it for 21 years.

The only impairment to lifestyle has been when I had to have gall bladder surgery. They had to get me off coumadin onto heparin and then operate.

Other than that, you can do whatever you want. I work with power tools all time. Hit my fingers with hammers, cut myself, etc. etc. Pressure, a little ice and back in action.

For example, earlier this year, I was setting some 16-inch square pavers using a 3 pound shot filled mallet, and got my left index finger between the mallet and a paver.

Iced the finger for about 30 minutes (would have done that anyway), and then continued to work for the remainder of the day. Yes, the finger from the end to the first knuckle swelled up and turned purple, but in a week, other than a discolored fingernail, everything was fine.

I bicycle, in-line skate, etc. I always wear a helmet, and gloves & pads when I inline skate - but, I've crashed several times on my mountain bike, bruised ribs, etc.

As one poster said previously, you become your own coumadin expert. After a while, you don't really think about it anymore - it's just another pill to take.

When or if a doctor attempts to give me "advice" on what I can or can't do taking coumadin; I politely ask how long they've been taking it. The answer is always, "I don't take coumadin." My response is, "I didn't think so because if you did you wouldn't be attempting to tell me something that isn't really true."

 

[lovejoy]

Hi and Welcome!
On March 29 I had AVR. I opted for the mechanical valve, my primary reason being that it is supposed to last 15 - 30 years. Being 45, hopefully it will last me the rest of my life. My surgeon said the other valves last only 7 - 10 years. I do not want to have this again if I can help it. I am on coumidin, and other than being sure that I eat foods high in vitamin k on a regular basis, I live a normal life. I own and operate a hardware/feed store and was back at work at 5 weeks out (although no lifting). Now at 16 weeks I am able to lift the 50 lb bags of feed, although I do not unless I have to. I am an active woman, in great physical shape and I intend to enjoy life, just use my head while enjoying.
Good luck to you.

 

[Mary]

Hi and Welcome!
On March 29 I had AVR. I opted for the mechanical valve, my primary reason being that it is supposed to last 15 - 30 years. Being 45, hopefully it will last me the rest of my life. My surgeon said the other valves last only 7 - 10 years. I do not want to have this again if I can help it. I am on coumidin, and other than being sure that I eat foods high in vitamin k on a regular basis, I live a normal life. I own and operate a hardware/feed store and was back at work at 5 weeks out (although no lifting). Now at 16 weeks I am able to lift the 50 lb bags of feed, although I do not unless I have to. I am an active woman, in great physical shape and I intend to enjoy life, just use my head while enjoying.
Good luck to you.

Lovejoy,
I don't know how I've missed seeing you post, because I'm usually on the lookout for new Missouri members!

I just want to add what my surgeon told me after I had my bovine valve implanted. He said he could almost guarantee 15 years with it, and I know he was being conservative.
Differences in age impact how much time we can expect with nonmechanical valves, so a surgeon's quote will be based with the age of the patient factored in.
Just like there is much misinformation about coumadin, there is also misinformation about the tissue valves. Each person has to decide what is best for their own set of circumstances. I'm glad to hear that you're doing so well with yours!

 

[Debster]

Hi lovejoy!
Branson is so pretty-I live in Louisburg,KS-20 minutes south on Kansas City.
Anyway-my mom had mitral valve replacement and triple bypass in April. She has a tissue valve-and we thought for sure no Coumadin-ha! She has bouts of a-fib, so Coumadin is sticking around. I think I have learned more from this site than anything else....
The Coumadin has not really changed her life much-we in her family are just so thankful she is here and kicking and doing very well...

 

[Debrinha GT]

Nice to meet you!

Nice to meet you!

Hello Lovejoy, I'm Débora from Brazil and I've already had three mitral valve replacements. Well, unlike you, I've always had tissue valves put in so, that's me in line for my fourth surgery within a couple of years from now. I'll go tissue again unless the surgeon changes his mind once he's in there. I'm happy to see you're doing so well and you definitely sound very positive about the whole thing. Anyway, just wanted to say hello and introduce myself. See you around. Take care,
Débora