no blood thinners for me???

[phil38783]

Hello to all....

.....I had my heart valve replaced along with my aortic arch nearly 2 & 1/2years ago, I am 37 now and totally freaked out! I have a mechanical valve, but I don't remember which one I got. I don't take any blood thinners, but according to what I have been reading here I should be. From reading on the web, the most likely divice that I have is the ON-X. I'll have to ask my doctor to be sure.

Are there any members with similar orders from the doctor for no blood thinners?

I would love to hear from you all.

Thanks,

Phillip

 

[Lynlw]

I dont know of ANY person with a mechanical valve who is NOT anticoagulat of some kind. Usually Coumadin, but if they are taking part in the ON-X trial they might be on Plavix and aspirin but definately some "blood thinner'
What meds are you on?

 

[njean]

Gulp! I'm freaked out for you!!

Like Lyn said, I don't know of anyone with a mechanical valve that doesn't have to be on anticoagulants! I've been on them for 30 plus years, am 60 years old and never heard anything like this.

If I were you, I'd be asking questions and or looking for another cardio, pronto!

 

[kfay]

Have you been followed regularly since your surgery? If so, with a cardio or a gp? Are you sure you don't have a tissue valve? Do you still have copies of your discharge papers from the hospital? You should have a card from the valve company with the info on it such as the model number, etc. If you do in fact have a mechanical valve I would run to the nearest Dr. tomorrow and get a prescription for coumadin. If you haven't been on it for this long without any adverse effects, I'd be afraid I had used up all my good luck!

Kim

 

[Cooker]

What meds are you taking? I can't believe you are not on an anticoagulant of some kind.

 

[dick0236]

I have heard stories of people in third world countries going without an anti-coagulant for long periods of time. First thing Monday morning, I would call my doc and find out exactly what valve I had. All mechanical valves require a "blood thinner" like coumadin/warfarin. The On-X may require a lower dose, but there is some anti-coagulant required with it. From your profile, you seem to be under continous doctor care, so my guess is that there is a simple explanation.....maybe you have a "tissue" valve. They normally do not require "blood thinners".

 

[chaconne]

Phil,

It would be amazing if you had a mechanical valve, and not on anti-coagulation medication. Does your valve make a clicking noise like a clock? That would be one way to decide if it is most likely mechanical.

According to On-X, there was a study done in South Africa that followed a group of poorly anti-coagulated or no anti-coagulation patients who had received the On-X valve.

http://www.actmedical.co.il/var/241/82664-תוצאות המחקר.pdf

It seems to conclude that the On-X has better survival rates for those in this category. However, I wouldn't take that chance at this point.

 

[phil38783]

I'm sure it's mechanical, I usually hear it's rhythmic ticking just before I fall asleep. In the beginning it cause me quite a few sleepless nights. I'm due a followup in a few weeks, I'll have to see if I can bump it to sooner. I moved about a year ago and I haven't unpacked that box with my medical papers, guess I better get to it.

 

[Hank]

Phil,

While I am happy that this forum has at least caused you to be curious about your need for anticoagulants - This forum is not the place for you to find these kinds of answers. You need to contact any physician who will take your call immediately and get your question answered without delay.. We know a lot here on this forum - but we leave the important life and death details (which this is) up to our physicians.

 

[Julian]

Yay! Go On-X! You need to be on some type of anti coagulation. It's impressive that you've went this far without any protection but doesn't mean a stroke is not around the corner. I would make it a priority to get a script as soon as possible but probably no need to panic and go to the emergency over it. The odds are you went this long without an "event" and you probably won't have an event in the near future but still.

 

[Lynlw]

Phil,

It would be amazing if you had a mechanical valve, and not on anti-coagulation medication. Does your valve make a clicking noise like a clock? That would be one way to decide if it is most likely mechanical.

According to On-X, there was a study done in South Africa that followed a group of poorly anti-coagulated or no anti-coagulation patients who had received the On-X valve.

http://www.actmedical.co.il/var/241/82664-תוצאות המחקר.pdf

It seems to conclude that the On-X has better survival rates for those in this category. However, I wouldn't take that chance at this point.

There've been a few posts here before that mentioned a couple years earlier some of the same authors in the same center did a study comparing 3 valves (ON-X, medtronic hall and carbomedics) in the poorly anticoagulated thats the results were pretty close http://www.ncbi.nlm.nih.gov/pubmed/15383051

 

[chaconne]

There've been a few posts here before that mentioned a couple years earlier some of the same authors in the same center did a study comparing 3 valves (ON-X, medtronic hall and carbomedics) in the poorly anticoagulated thats the results were pretty close http://www.ncbi.nlm.nih.gov/pubmed/15383051

Yeah, At this point I think the consensus is that they are all very much the same. My surgeon was certainly skeptical about the claims made by one valve manufacturer over another. I'm hoping that the On-X has some advantage over others since I chose it, but there is no guarantee. On the other hand, we may find out in the future, that all modern bi-leaflets are safe with lower ACT levels.

 

[Bina]

Hello to all....

.....I had my heart valve replaced along with my aortic arch nearly 2 & 1/2years ago, I am 37 now and totally freaked out! I have a mechanical valve, but I don't remember which one I got. I don't take any blood thinners, but according to what I have been reading here I should be. From reading on the web, the most likely divice that I have is the ON-X. I'll have to ask my doctor to be sure.

Are there any members with similar orders from the doctor for no blood thinners?

I would love to hear from you all.

Thanks,

Phillip

Dude, are you for real ?

 

[Luana]

How long ago was your surgery? Are you saying that you did not have to fill any prescriptions when you left the hospital? That's very unusual. Also, it's standard for hospitals to give patients a discharge form that states what meds you are to take and other things to be aware of after OHS; it should also include the make and model of the valve that was implanted. It's hard to believe you didn't get that, or did you perhaps misplace it thinking it was not important?

Everyone who has a mechanical valve needs to take anticoagulation meds. I hope you contacted your cardiologist today and were able to get this resolved.

 

[Julian]

Yeah, At this point I think the consensus is that they are all very much the same. My surgeon was certainly skeptical about the claims made by one valve manufacturer over another. I'm hoping that the On-X has some advantage over others since I chose it, but there is no guarantee. On the other hand, we may find out in the future, that all modern bi-leaflets are safe with lower ACT levels.

One thing that sold me on the On-X was the built in pannus protection. From what I've read there have been no reported cases of pannus growth in On-X valves. One less thing to worry about.

 

[chaconne]

One thing that sold me on the On-X was the built in pannus protection. From what I've read there have been no reported cases of pannus growth in On-X valves. One less thing to worry about.

Good point, that was the one thing that my surgeon had to admit was a unique feature. He did somewhat brush it off by saying it was rare to get pannus in-growth. But hearing about Robthatsme's experience made me want to mitigate even this small risk.

 

[Duffey]

You should have a card sent from the company that states which valve you have, and you should be carrying it around with you. In the meantime, a call to your cardiologist's office, stating that you seem to be remiss in taking your act meds, should get you an immediate appointment.
Good luck and let us know how it turns out.

 

[Lynlw]

Good point, that was the one thing that my surgeon had to admit was a unique feature. He did somewhat brush it off by saying it was rare to get pannus in-growth. But hearing about Robthatsme's experience made me want to mitigate even this small risk.

I "believe" the ON-X Pannus "protection", keeps any pannus formed from encroaching/blocking the leaflets, which could be a big problem if it made them stuck in some position, but perhaps he seemd to "brush it off" since I do NOT believe it helps at all with pannus formed at the seam line, which from our experience is what causes many valves/conduits/grafts to need replaced because of pannus or scar tissue...as the pannus gets thicker, then of course the opening gets narrower so when there is too much stenosis they have to replace it. One question I haven't got an answr to is since the ON-X doesn't keep the body from building pannus, just prevents the pannus from going toward the leaflets, would that mean it would build up faster at the seam or whatever the valve is sewn to, since it can't 'spread out" for lack of better word

 

[Julian]

I "believe" the ON-X Pannus "protection", keeps any pannus formed from encroaching/blocking the leaflets, which could be a big problem if it made them stuck in some position, but perhaps he seemd to "brush it off" since I do NOT believe it helps at all with pannus formed at the seam line, which from our experience is what causes many valves/conduits/grafts to need replaced because of pannus or scar tissue...as the pannus gets thicker, then of course the opening gets narrower so when there is too much stenosis they have to replace it. One question I haven't got an answr to is since the ON-X doesn't keep the body from building pannus, just prevents the pannus from going toward the leaflets, would that mean it would build up faster at the seam or whatever the valve is sewn to, since it can't 'spread out" for lack of better word

I think the word pannus means inward flap or something but you bring up a good point. I think the article I read stated that there has been no documented cases where the On-X valve had to be replaced for pannus issues but not sure, we might be entering into a tall tale kinda like with super heros.

 

[Protimenow]

I have a hard time believing that you may have been put on a 'no anticoagulant' trial without your knowledge (which would seem to be the only reason you may not be on ACT). Before such a trial can be performed on humans, there would have to be extensive animal testing - with good results. It hardly seems possible that you've been allowed to function without any anticoagulation therapy following surgery.

Even if, at some time in the future, new research shows that for your On-X valve, there's no need for anticoagulation, research from the past 30 or more years continues to demonstrate the risk of clotting (and stroke) in patients (and lab animals) who have mechanical valves, regardless of the valve implanted. Current thinking is that if you have a mechanical valve, it's ESSENTIAL that you take anticoagulants and maintain your INR at higher than normal levels.

Although you may have been lucky to go for 2 1/2 years without problems, you should definitely contact a physician and express your concerns about not being anticoagulated. Even if there is NO risk in your particular situation (and this is doubtful), it's in your best interest to consult a medical professional and strongly consider following recommended practice (which is to be anticoagulated), even if your doctor or the valve's manufacturer may consider it unnecessary. It's better to reduce the risk of clotting - even if the risk is minimal - than to ignore this risk.

(One thing that may be of some concern -- IF you already have clots on that valve, would ACT loosen those existing clots? You may want to ask your doctor about THIS risk, too).

Good luck. I'm sure that everyone on this thread is concerned about you and looking forward to a positive follow-up report.