Making a decision on a valve

[ChouDoufu]

44 with upcoming avr, going with bovine rather than mechanical.
from what i read here, coumadin wouldn't ordinarily be a problem,
but my vacationing in isolated areas would not be practical. also
the diet thing. i like to binge.....i get a hankering for something,
and tend to eat my fill. no balance, no moderation. finally,
i just know i'd get a loud one that would keep me awake forever.
accept that i'll probably need another operation 55-ish, then
another at 70-ish (unless #2 is mechanical).

 

[Ross]

Let's get Al Lodwick on this one. Just trying to be different, aren't you.

I emailed Al and he said he looked it up. There is no relationship between Cholesterol levels and Warfarin. Now there was one article the brought a theory into purple toe syndrome for LDL claudication, but that is all that was found. Guess I'll have to keep looking for the reasons for my high count. I'm wondering if it's got anything to do with the blood and plasma I was given? Be interesting to see what it is now that I have no teeth and very limited diet.

 

[tobagotwo]

I opted for a Medtronic Mosaic porcine (tissue) valve at age 52 for my aortic valve, anticipating a resurgery between 65 and 70 that should go as long as I will (20-25 years at that age).

At earlier ages and in the mitral position, tissue valves don't last as long, but they should last into double digits at age 51.

There are some people who just don't do well with warfarin (Coumadin), for various reasons. It's not a large percentage, but they do exist. However, if your cardiologist is putting you on warfarin anyway, you might want to just go ahead and do the mechanical valve. It's generally a lifetime fix.

I've not seen any relationship shown between warfarin and cholesterol to date, but there is an awful lot of leeway in individual human chemistries. Be aware that there are a couple of new blood anticoagulants on the market that are being clinically tested to replace warfarin for other long-term purposes. They work in different ways than warfarin, and don't require dosage adjustments. Perhaps one of these will become available for valves and be less troublesome for you.

Also note that at both these times, you had just been significantly diagnosed, and given new prescriptions. I have seen work that shows relationships between temporary high cholesterol (and sugar) in some people's bloodwork that is taken when they're under stress. This might be a causative factor.

Also, some beta blockers and possibly calcium channel blockers can raise both of those bad boys either temporarily or permanently. Did you happen to change BP medicines or levels of dosages at those times? I experienced some abnormal bloodwork results (low platelets, slightly high sugar) after my beta blocker was doubled, but it all straightened out after a few weeks.

Best wishes,

 

[Bina]

I emailed Al and he said he looked it up. There is no relationship between Cholesterol levels and Warfarin. Now there was one article the brought a theory into purple toe syndrome for LDL claudication, but that is all that was found. Guess I'll have to keep looking for the reasons for my high count. I'm wondering if it's got anything to do with the blood and plasma I was given? Be interesting to see what it is now that I have no teeth and very limited diet.

Ross darling, do ya think it may have something to do with the pizza and subs you are jamming into your processor?
(comfort foods)

 

[needinfo]

I was 52 when I chose my bovine tissue valve. I had no other medical conditions, threats or problems. I am not afraid of a second surgery, nor do I dwell on the prospect of it. Many people who get mechanical valves need a second surgery for whatever bad luck reason (as do many with tissue valves). I don't really think you can plan for the future that way. I think one needs to choose for now.

My surgeon was my exact age and he said he would choose the valve I chose. That was very reassuring for me, but I still would have gone tissue regardless. I think many of us have gut instincts about this very very very difficult choice, and we go with our gut.

It seems like your gut told you mechanical and so you are trying the coumadin. If you are emotionally sold on the mechanical, then please consult the many threads here devoted to coumadin management to ease your concerns about adjusting to it.

Otherwise, consider your day to day life, what you want it to look like, and re-evaluate your choices.

It is a very difficult choice, but remember, however you choose, you will be given renewed life. LIFE. That is the best choice you are making!!!

Hang in there. Ask as much as you can of us. We're here to help.

Best wishes.

Marguerite

Marguerite...I am with you. Maybe wrong choice (I am 44) but of all I have read, pros and cons, ups and downs, mechanicals just dont make me comfortable and comfort to me is a deciding factor. I am hoping that cutting edge technology will be advanced in the future so if my valve needs replacing aging, who knows, maybe out patient? Wouldt that be sweet!

 

[Lisa in Katy]

I haven't heard about a connection, could be coincidental, but you never know. It's a weird drug and does different things in different people. I was in my 30's when I got my valve and pretty much thought that mechanical was the only option. I thought tissue was old school and only used for old people. I don't regret the doctor's choice as it gives me less chance of reops. However, with all the advancements today, at 50 I think it would be safe to go either way. Tissue valves are lasting longer and surgeries are getting less and less invasive. If I need another surgery, I plan to be at least 70 and would definitely entertain the notion.

 

[Ross]

Ross darling, do ya think it may have something to do with the pizza and subs you are jamming into your processor?
(comfort foods)

Hon those were mere treats. Only done one time. Sometimes when your really hungry for a certain flavor, it's necessary.

 

[Bina]

Hon those were mere treats. Only done one time. Sometimes when your really hungry for a certain flavor, it's necessary.

I realize that and was just giving you a little poke.....I would love to share a pizza with you some day!
xx

 

[lbecker]

Marguerite,

I am leaning towards a tissue valve. Would like to read more about bovine valves,
any suggestion for good sites? I understand some can last 20 years or more. Thanks
for any info you can give me. Laura

 

[Marguerite53]

Gosh, Laura, it's been close to 3 years for me so I honestly don't remember where all I looked. I have a Carpentier-Edwards valve so I know I did some reading on that company's website. That is www.edwards.com I also remember going to a used book store and buying (now long since gone to Good Will) some technical books on the functioning of the heart just so I could better understand the dynamics of the muscle. Somehow it comforted me to learn more about that.

I'm sure the porcine valvers have company websites they can steer you towards. And often the surgeons have handouts or ideas.

Good luck. This choosing part is tougher than the surgery!!

Marguerite

 

[Ross]

Check the references sources forum sticky for other possibilities also.

http://www.valvereplacement.com/forums/showthread.php?t=7027

 

[lbecker]

I really appreciate finding this site and the input all of you give. Yes,
I think the deciding which way to go is so stressful, you want to make
the right decision for you! I will look at the places you have suggested.
One thought on the aspect high cholesterol levels and connection to
warfarin, maybe the drug companies don't want studies done on the
connection since they have not come up with anything that works as
well as warfarin. After all it saves many of our lives and they can sale
us drugs to lower our cholesterol. Don't want to sound jaded but
I am part of the medical establishment as an RN and know how it works
at times. I need to log on to Al Lodwick site and ask about my present
dosing of warfarin.

 

[Ross]

I really appreciate finding this site and the input all of you give. Yes,
I think the deciding which way to go is so stressful, you want to make
the right decision for you! I will look at the places you have suggested.
One thought on the aspect high cholesterol levels and connection to
warfarin, maybe the drug companies don't want studies done on the
connection since they have not come up with anything that works as
well as warfarin. After all it saves many of our lives and they can sale
us drugs to lower our cholesterol. Don't want to sound jaded but
I am part of the medical establishment as an RN and know how it works
at times. I need to log on to Al Lodwick site and ask about my present
dosing of warfarin.

There is no corelationship between Coumadin and high cholesterol. Maybe I should have posted Al's email to me about it, but it was personal in nature.

We can help you with your INR issues as well. Bare in mind, we learned it all from Al and he keeps telling us that he learned from us. No, we are not pros or certified anticoag experts, but we did have the best possible teacher.

 

[Jkm7]

Who but those who have lived on this drug for years and in some cases decades, knows better about all the ins and outs of it?


Among everyone here who lives on coumadin, there are few circumstances involving this drug that not someone has encountered and handled..... of they wouldn't still be among us.

These are the experts.

 

[abbanabba]

Yet another thing to consider is that you will be on drugs no matter what you do. With tissue valves you take aspirin as a blood thinner, not coumadin.

That's not necessarily true. I've just had a tissue valve (mechanical was not an option for me because it was the pulmonary, and the lower pressures through that valve make clotting a much greater risk) and while I'm on 1 asprin a day at the moment, my cardiologist has already told me I can probably stop that in the next couple of weeks.


Meanwhile, I don't know that I would have taken mechanical if was an option anyway (although I concede that's easy to say when the choice isn't there). The new tissue valves are lasting longer and longer - especially in older patients - and the newer technologies are making future replacements look much easier. Sure - they may not be an option for all of us, but who knows what will be available in 10, 15, 25 years time!

Frankly I don't think I could be bothered with the misconceptions from others about ACT or the daily monitoring and medicating required, so for me the tissue valve is just fine.

At the end of the day I guess we all need to look at our own lifestyles, medical histories, what we are comfortable with and make the choice that best suits US.

Good luck in making that choice.


A : )

 

[lbecker]

That's not necessarily true. I've just had a tissue valve (mechanical was not an option for me because it was the pulmonary, and the lower pressures through that valve make clotting a much greater risk) and while I'm on 1 asprin a day at the moment, my cardiologist has already told me I can probably stop that in the next couple of weeks.


Meanwhile, I don't know that I would have taken mechanical if was an option anyway (although I concede that's easy to say when the choice isn't there). The new tissue valves are lasting longer and longer - especially in older patients - and the newer technologies are making future replacements look much easier. Sure - they may not be an option for all of us, but who knows what will be available in 10, 15, 25 years time!

Frankly I don't think I could be bothered with the misconceptions from others about ACT or the daily monitoring and medicating required, so for me the tissue valve is just fine.

At the end of the day I guess we all need to look at our own lifestyles, medical histories, what we are comfortable with and make the choice that best suits US.

Good luck in making that choice.


A : )

You are correct, I know people that have a tissue valve and they are not
on any medication. Guess everyone is different. I'm not counting on
no medication, but would like to choose the valve that works the best for
me, operational and emotional. That may sound funny, but I just don't
want to be constantly thinking about what and how much of different
meds. I need to take.

 

[Lynlw]

Justin isn't on aspirin either.

 

[BDMc]

I am "comfortable" with my valve now, but haven't always been. Then again I had no choice. But I think it is possible there will be significant advances in the next 10 years, that could make the re-ops a lot easier. I'm used to the warfarin routine, still active etc... but it sure would be nice not to have to do bridging for other surgeries! As to the high doses of warfarin, for some of us it takes a lot to get us started. I think I started at 25mg/day. 24 years later I'm down to 10mg/day! Try to find out everything you can about your options, don't base your choice on misinformation, and then decide which feels best to you. All the best, Brian

 

[Marguerite53]

And please keep in mind, that sometimes the surgeons get inside you and make a decision for you based on what they see inside. I don't think this is happening as much anymore (just haven't been hearing it here) but it is possible. In that case, it might be good to have a second choice lined up with your surgeon.

Marguerite

 

[Ross]

That may sound funny, but I just don't
want to be constantly thinking about what and how much of different
meds. I need to take.

Most all of us dream of that, but in reality, not too many replacement patients are medication free.